Alan’s Story.\n
My name is Alan and I live in Peacehaven in Sussex with my little dog Ruby who likes walking around a lot. You’ll probably hear her tap-tap on the floor. Like that, there she goes. I work for the Sussex Beacon, I’m an HIV Case Worker. I’m 64 years old and I’m doing the best job I’ve ever done in my life. I enjoy my work more than anything I’ve ever done. I’m passionate about supporting people living with HIV and would like to wave a magic wand and get rid of all the stigma around it. It really pisses me off, that 25,000 people have died in 40 years from HIV/AIDS in the UK, in forty years. 150,000 have died in one year from COVID and you can get COVID by being breathed on and yet, where’s all the stigma? So that’s, that’s… That’s me.\n
Home… Home means my house. But this is my… This is my final home and, erm, I bought this little house about… Actually, it was seven years ago this week I bought this house. When I bought it, it’s on the cliffs of Peacehaven, I think I’ve already said Peacehaven three times now, erm… It’s on the cliffs, it’s got fabulous views, it’s a, it’s a shitty little town really, there’s not much going for it. There’s hardly any shops, it’s all takeaways, but it’s just got these amazing vistas of the sea and the wind farm and the weather and the sun and the seagulls. And I was in a fortunate position a few years ago to cash in some money and I changed the house to my perfect home. So I live in my own dream home and this is my home and I feel safe and happy and content here, so, yeah, this is... My home is bricks-and-mortar and what makes it my real home are all the things I’ve accrued over the years. The story of my life that’s around me.\n
Okay. It’s a mess. It’s untidy but at the same time bits of it are actually pristine. So the front part of the house is a bit like an art gallery but there’s no mess, well not much. There’s virtually no mess in there. By mess I just mean books that aren’t on shelves they should be on. And it’s got art work that I absolutely love. And it’s got furniture that I adore, that I’ve collected. And… Right, I’ve lost the train of that, where I was going with that. What makes it home?\n
Okay. I think it’s… I’m a little bit of a collector so there are little groups of things around. There’s lot of African carvings at the moment and African figures which were probably bought as tourist mementoes by other people that went on their African adventures and now they live together with me. There’s, there’s pottery and china that appeals to me what’s… And actually looking at it what I’m realising is that everything is always grouped. There’s virtually never just one of something. So… I’ve got a collection of pottery from the Millennium Dome which was a short-lived thing but I really liked it so I’ve got lots of souvenirs from there. Books, but most of my books that I’ve kept are large format art books. I love looking at photographs, pictures of buildings. There is… Yeah, there’s a lot of stuff here, isn’t there? There really is a lot of stuff but it is on bookshelves and stuff. I wouldn’t say there’s any smells actually. In fact, I go to the, I try to go to opposite end of the smell thing by not having any smells in the house and that’s partly from having dogs for so many years. I was always conscious that if you go into somebody’s houses and it smells doggy how horrible it is, so, usually the doors are open and – there’s only one dog now – but the dogs could always go in and out, there’s always plenty of fresh air. And light, actually. Light’s quite important to me, as well. So, this room that we’re in, it’s got a – sounds posh – but it’s got an atrium which just lets the whole room flood with light and enough such that citrus trees grow here, but just one or two, not a farm. It’s full of, erm… I was going to say it’s full of memories, but… Yeah, er. Crikey, actually there’s quite a lot looking at it now, because each thing, every thing has it’s own little story to tell. Some of them, they’re not very important. They probably could go. But every now and then I look at something… I’ve got a very strange giraffe that’s dressed up like a drag queen and that tells a story of London, of Spitalfields actually. Of afternoons spent in the… I don’t know if it’s there anymore, there used to be almost like a flea market in Spitalfields market and all these people with the really, really weird creative design ideas would sell their stuff there and that reminds me of that time. That could last forever, talking about everything that’s in here, but I’m only really looking at one room. I like my pictures. I like pictures quite a lot. And I like being able to sit down. I’ve got a ridiculous amount of chairs and sofas for such a small house, it’s madness. And I nearly always only sit in one chair and that’s the one in front of my computer. So really home is, I suppose I could say, home is my sort of my chair in front of my PC screen, which I use as a television as well.\n
So, diagnosis was in 2003. I would actually say, prior to 2003, my life was pretty superficial. I don’t think there was much in my life that had meaning at all. I had a difficult upbringing. It wasn’t unkind, it was just difficult. And from a very early age, as far back as I can remember, I had social anxiety and I didn’t know what it was, at the time. And I was very lacking in self-confidence but everyone thought I was very confident but I wasn’t. And I sort of breezed through life, never really taking anything seriously. Relationships didn’t always mean much to me. I’m not sure what I aspired to, prior to that time. But when the diagnosis came, that was like a bolt from the blue. And I told my partner. We both cried. I told him if he was going to leave me, now would be a good time, but he waited eleven years. And then after diagnosis, I probably then spent… I can only describe the next ten years as almost like I went into hiding. I wasn’t completely in hiding, but didn’t go out anymore, didn’t see that many people. Didn’t tell anybody. Didn’t tell anybody at all. So... I think my home was, was a place of safety. It’s not this home I’m in now, it was another place. It was the previous house I lived in. And it’s kind of interesting because eventually it became a prison. I’m not really sure why my relationship broke down entirely, but it did and it took three years to die. And in those three years my partner and I drifted further and further apart and I felt more and more trapped in what was supposed to be my home. That’s why I say it was like a prison. And eventually, seven years ago, I got out of that and… I really had to fight my way out of that, as well. Do you know, somebody said to me just the other day about the house, a really old friend who lives near where I used to live and he said: “I go past your old house quite a lot.” I said: “I’ve never been past it, I’ve never gone down that road. Even though it’s a main road, I’ve never gone past that house.” And I don’t know if I ever will. I’ve looked at it on street view, Google Maps, to see what they’re doing with it. But I have no desire to see it again because I have really bad memories of what… That was supposed to be my home and therefore my place of safety and it wasn’t. But now I’m here, and I’ve done this on my own, okay? I’ve done this on my own after diagnosis, reassessing my life, reassessing what’s important to me and what’s not important to me…\n
Let me think. I’m trying to think where I actually lived when I was diagnosed. If that was in 2003, so that was eighteen years ago… 12, 6… I think I didn’t live in that house, that last house, at the point of diagnosis. I can’t remember where we did live. Actually, no, we did live somewhere else because when we moved to the last house where we ultimately broke up. At one point we were thinking of moving out to the country. Which of course is isolation and avoidance of people and living a life where you don’t have to communicate with anybody. So, yeah, I was doing that thing that… I’d say I probably see it in my clients, as well, that they build what they think are their castles but what we’re building is a prison. And it isn’t like that anymore, I’ve broken free from that. And some of that has to do with being open, public, about my diagnosis. And finally giving my HIV a voice of its own. And a persona of its own. So things, yeah, it changed a hell of a lot but I’m happy where it is now.\n
For myself, I suppose now it’s been the making of me. Finally, because of the work I do now. Well, it’s given me a career actually. This is all like twisting around to it, but, so, positive reaction from me is that it’s given me a career. So, I’m an HIV Case Worker, I work with people living with HIV who, for one reason or another, are struggling. And they’ve hit the wall. I think we all hit the wall at some point. It took me nearly ten years to hit my wall. So HIV’s given me a career in later life, so that’s a pretty major gift. In my work every day is different. In my work I see people who are unhappy and I do what I can to help them support themselves to a better place. It’s unbelievably rewarding. I’m learning all the time, so HIV’s given me a career. And not just a… It’s not a medical career, it’s a real career. It’s a job and a lifestyle almost, so I own my HIV now, it doesn’t own me. I’ve learnt so much about living with HIV the different ways it has, the different effects it has on different people and I’m able to draw on my experience perhaps to help other people but also draw on their experience to help me. But it took a long time. So eighteen years, about eighteen years positive, certainly the first ten were miserable. And so HIV stole that time from me. But… I sometimes, I sometimes look back – not in great detail – but I look back on lifestyle changes that I’ve made because I live with HIV. So I stopped smoking a long time ago. I never really drank a lot, but I drink a lot less. I’ve become vegetarian. I don’t eat processed food. I think there’s a pretty strong chance that if I hadn’t become HIV-positive I would have been dead by now. Probably from a heart attack. Commuting to work in London, smoking, drinking, not exercising. I certainly would have been quite a bit larger than I am. So it’s weird… I’ve never thought about it this way actually. So, am I saying that HIV saved my life? I suppose, am I? It certainly saved my later life. I mean, I feel for my age, I feel incredibly fit and healthy and I wake up most days looking forward to the day. Yeah, it’s not bad at all actually… Yeah, it’s okay. I’m happy with it. And I’ve been on the television. Three times! So there.\n
But yeah… It’s given me opportunities. I’ve met people. ‘I’ve met people’: that sounds a bit religious doesn’t it? I’ve met people I would never… I’ve been to the House of Lords, I’ve been to the House of Commons. I was going to say I’ve met Peter Tatchell but I’d actually already met him. I’ve been in a room with two African presidents, several lords from the House of Lords and umpteen MPs and, like, been part of it. Yeah, it’s weird. So, I suppose… Yeah. It’s okay. Yeah, it’s alright.\n
So… I’m not one for generalising, or am I? Maybe I am, but I don’t like generalising so when you hear things like ‘oh, gay men are so vile about HIV,’ that’s not really fair because not all gay men are vile about HIV but some of them are. But some of them are really good about it. If you’re… If you’re HIV-positive, it’s a frightening thing to have to tell somebody else. If you haven’t done it before it’s a little bit frightening to know when you should, if you should. And then the tough bit is rejection. And it’s happened to me. I’m sure it’s happened to most people that are HIV-positive, to get rejection from your peers. That’s really harsh and it’s always through ignorance. That’s… So there’s the actual rejection but probably bigger than that is the fear of rejection and I think that goes hand-in-hand with the stigma, that we talk about the stigma around HIV. But I’ve always believed that the biggest part of stigma is self-stigma. It’s what we think people will say, how we think people will react. So we’re stigmatising ourselves. And I think we have a tendency to continue that stigma without realising it. I’ll tell you this briefly. Recently, I had a friend who was positive and a partner who was negative and they kept it to themselves for a long, long time. And then one day the positive partner just told people. And the negative partner was a bit upset because he felt that they should have talked about it, first, before the telling of anybody and should have prepared the parents for it. And I said: “I think you’re wrong. It’s not your secret to tell, it’s his. It’s his. And if you really think you have to prepare parents for this kind of information…” Imagine instead of HIV it was lung cancer? You don’t phone up your parents and go: “Do you know what lung cancer is? Do you know what it means when you get like, the things, the tumours that form in your lungs and how they spread? Do you know how that can happen now that I’ve got lung cancer?” Know you don’t. You say: “I’ve got lung cancer.” And they go and do the research on their own. They go and find out or they ask you. But why if you’re living with HIV do you have to clear that pathway of ease, to tell people? To prepare them for it. And to let them know that this is the medication we take and we can’t pass the virus on. No. Fuck that. They can find that out for themselves, like they would any other illness.\n
Yes. And that is the bit that continues the cycle of stigma. So they, so they didn’t realise, well he didn’t realise, the negative one, this one that I was chatting to, he didn’t… I could see it in his face it made him stop and think. You’re creating the stigma by, yeah, by that. I said: “I understand, but also understand it’s not your secret. It shouldn’t be a secret.” I said, to them I said: “One thing I will give you credit for, you didn’t say ‘disclosure’.” So that was, yeah… It is interesting. So that’s the negatives, most of them are going to be history. It’s the history of HIV, it’s the history of the… Even people that weren’t alive at the time know about the crashing tombstones, the things the police said, the Sun, all that stuff, it’s… That’s the negative side of it: misinformation. Really.\n
I felt I would be excluded if they knew. So… But then that’s me self-stigmatising again, so yeah… And that’s… and it would have been spaces like family spaces actually. And again, maybe working in this business you hear too many stories where, you know, it’s not uncommon for somebody to… Yes. And most of it is self-imposed, the exclusion. I wouldn’t, I wouldn’t… I mean I stopped going to bars which I used to enjoy. I didn’t want fingers pointing and, you know, tongues wagging. So I sort of imposed that on myself and family space… I still haven’t told all of my family. But I have a pretty difficult family anyway, but some of them know, some of them don’t, I don’t really care… I don’t care anymore. But that’s a place I’ve got to. The journey to that is quite difficult. And it’s not unusual to hear that when people are diagnosed that ‘I can’t tell my family, they’ll kill me.’ That’s a direct quote from somebody that I spoke to last week. “I can’t tell my family. They will kill me.” I mean, that’s… That’s so sad. I mean what worse kind of exclusion is there than that? So, yeah. And it’s, it’s actually the same exclusion that people, well, I suppose my generation, about being gay. You know, you tell your Mum, “Mum, I’m gay.” “Don’t tell your father, it’ll kill him.” Well that’s bullshit, it’s absolute bullshit. But at that time when you think that you believe it. You believe that, so, yeah, that’s the kind of exclusion I would feel. I would never, I’ve never experienced real exclusion from healthcare. And a very small example - well it wasn’t exclusion – a surgeon once talked to me before I had an operation, a consultation, and when I left the room the nurse came running after me and said: “Oh, he wants to speak to you again.” And he didn’t look at me, he was just looking down at his notes and said: “Oh, I see you’re suffering from HIV.” I just wanted to punch him in the face. But I didn’t. At that time I didn’t have the confidence. I do now. I mean, if somebody says something like that to me now, it would be quite, I’d probably be quite… I’d probably just laugh at them. But again, I haven’t, that’s about it for me. I haven’t experienced any exclusion as such. Yeah. I’ve been lucky.\n
My diagnosis came out of the blue. I wasn’t expecting it. I, I had a rash and I thought I’m gonna get told I have something like NSU or something like that and I really wasn’t expecting it to be HIV. And, so I had to tell my partner. And it was really difficult. And even though there was a short window between that test and the previous one, it was only a few months, I can’t, I still can’t – and I don’t anymore – I can’t work out how it happened. I really can’t work out how it happened and that’s not denial, I just can’t. But he really questioned me. We hadn’t been together that long and there was a lot of, like, quite difficult questioning about had I been honest about, whatever it was what I’d got up to. Obviously, I got up to something. And I can understand in retrospect, I mean, you know, eighteen years ago we didn’t have quite the same knowledge that we have now. Even though it wasn’t a death sentence, even then, it was still a pretty nasty diagnosis. So there was probably a really difficult rocky road ahead which there hasn’t been. But that was how it seemed at the time, so he was probably quite frightened as well. Which is fair enough. I think I said earlier that when I told him I also said: “If you are going to leave, leave now, don’t...” But I don’t think the HIV played a major part in our relationship. The really really really annoying thing though was it did mess up our sex life, big time. Because we had to use condoms. But if we’d known then what we know now, we didn’t have to. And that’s, that’s a huge disappointment to me. But, yeah… We just didn’t know. Nobody really knew. So it affected, so it affected our sex life. Always, a bit. But it wasn’t the cause of… I don’t. Hm. Okay I was about to say it wasn’t the cause of our break-up but actually it probably was but not from his side. I was reacting, so I was the one withdrawing. ‘Cause I remember telling one of my best friends, when we were breaking up, I said: “He’s changed.” And she just said to me: “He hasn’t changed at all, you have.” Just like that. Oh yeah, it is me. I’ve changed. So, yeah. It was my living with HIV and how I dealt with it that caused the difficulties, not his. He was always the.. ooh, that’s made me think a bit. Probably didn’t give him the right amount of credit for that actually. He’s got his own life, he’s got his own issues. It was a terrible break-up but we did become friendly again afterwards but we’ve drifted apart again now and that’s, that’s it. You know. But that’s okay. And I don’t mean that badly. Somebody once said to me that people come into your life, they serve a purpose and then they drift away. And that’s the natural order, you know. You can’t hold on to everybody that you pass in your life. You know as long as the parting ends on good terms and that’s fine. Maybe you’ll meet up again one day, but I don’t worry about that kind of thing any more. But yes, HIV did affect my personal life and my life. Yeah, and it was… Yeah, it did. In a big way. In a bigger way than I’d really thought about, but ultimately it’s good, ultimately it’s fine, it’s not… Do I sound like I’m trying to convince myself? Because I’m not. It’s fine.\n
I’ve never been part of any community. I might belong to different communities but I’m not really a part of any of them. But I’ve always been like that. I’ve always, always been on the outside looking in or on the edge. Even in my life when I’ve got involved with a group or a society, my lifelong battle with social anxiety has prevented me from really enjoying it. So… let me think again. No. If I was part of a community I would be the person in the kitchen making the cakes or the person on the door taking the tickets. Or I might even be on the stage announcing whoever’s won the whatever competition. But am I actually one of the ones down there in the party joining in? No. I never have been. I’m always on the outside. But that’s nothing to do with HIV, that’s just me.\n
This is my safe space, my home is my safe space. My home, my garden, my dog. My bitch is the keeper of all my secrets. Yeah, this is my safe space.\n
So, I’m definitely… Yeah. Okay, so I’m brash, I’m loud. I’m colourful. I’m noisy. I want to make people laugh. I want people to feel at ease but at the same time I’m petrified, most of the time. I want to do things but I can’t. The pandemic has been amazing for me because nobody can do that. So all of the busy public spaces have been closed down and without wishing to sound unkind on people that’ve been deprived of that, it’s actually made my life an awful lot easier because I’m not in social situations that I find awkward. I’m not going to… I’m not going to an event where I have to mingle with people because I can’t do it. I don’t know what to say, I feel awkward and I’m uncomfortable and embarrassed and I feel that everything that I say is the most stupid thing anybody’s ever heard. But at the same time I know that when I tell people that’s how I feel they’re shocked, that I have this mask, this mask of being the joker. The jolly joker. It’s kind of weird how you deal with it. I think I’m lucky it’s not... I think I’m lucky it’s not depression. It’s only social anxiety because with social anxiety I can’t easily go to a new place on my own. And… But I can choose not to go. And that’s it. So I choose not to go and I don’t go. I’m not anxious and that’s fine. If I, if I do go then I pretty much know what’s going to happen. I pretty much know that within an hour I’m going to be sneaking out the side-door going home, hoping nobody saw me leave and never actually saying I left early because people don’t notice. That’s the other thing you learn when you slip out of places. People don’t notice you’re not there anymore. If they’ve seen you, that’s enough. They don’t need to see you every minute of the four hours whatever. They just need to see you once and they’ll know you were there. And so I’ve used that, so...\n
I have a burning sense of justice. It’s what drives me, is justice. I can’t sit by and watch somebody being treated badly. I’m sure I’ve… I’m sure, I know I’ve treated people badly myself. I judge myself probably quite harshly, but I just can’t stand injustice. It drives me crazy. So, if I’m, if I’m your friend, if we maintain – I’m gonna say ‘we’ – maintain loyalty I will be your friend for life and I will give you whatever I’ve got to keep you going but don’t – it’s typical Scorpio – but don’t, don’t fuck me over, ‘cause there’ll be. It’s not going to be violent, but it’ll be swift. You will know that you’ve done wrong because that’s when, yeah… So I’ve got this burning sense of… It’s probably more a sense of injustice rather than justice. And I’m also someone that can’t stand trivia. It drives me mad. I think I’m kind. No, I am kind. I come across as, I think I come across as… You see, I’m doubting myself now. Big, I’m very big. Really big. And I learnt quite late in life that I can be imposing and scary. But I think it’s got me into trouble, without realising it, without… I’m not aware of my size. I know I said I was big but I’m not aware on how that impacts on people. But the way for me to realise it is when I occasionally – but not very often – come across somebody bigger than me how that makes me feel. I love it, actually. I love being in the presence of people who are much taller than me. Doesn’t happen very often but I really really like it. And, and I recognise in some of my friends that are really much smaller than me how comforting it can be to be in the presence of someone who wants to, who is protective and wants to be protective. I am protective, I am very protective. But that’s enough about me.\n
What can I add? Yeah, so. If… if people really want to end HIV transmission by 2030 or whatever they may have set, there’s a huge amount of information, useful information techniques, that have come out of the COVID-19 pandemic and it’s actually something that I was talking about last week and it’s to do with sexual health, as well. Firstly, I do not like the way that sexual health is tied-in with HIV. I object to it, because… Well, I just don’t see why it’s necessary. I don’t see why I have to go to a GU clinic to get my HIV treatment. And if I live to be 75 or 80 I do not want to have to be going to the local clap-clinic to have my six-month or yearly blood test done in a room full of people that are gonna… If they see me are going to see me as a dirty old man, 80, 80 years old in the clap-clinic. I mean, really? It’s just… I know it’s perception again and it’s self-stigmatising about age this time but I don’t see why I should have to, I just feel that, so I would divorce those. So firstly I would like that to be noted. But I would also thoroughly recommend a reinvestigation of self-testing. I test so regularly for COVID-19, I think I’ve done 58 tests. Yeah. So I do the ones for work, I do the ONS one, I do the Government ones they send out. Maybe I’m a bit weird okay but it’s like an exercise for me to work out. And also it’s… I needed to be able to do the throat swab. I couldn’t do it at first. So I actually practised doing the throat swab and I’m getting quite good at it. But… I don’t see why they – the sexual health clinics – aren’t sending out the equivalent of a lateral flow test to people looking for chlamydia, gonorrhoea, syphilis. They already do it for HIV. There are several HIV self-test kits you can get. You can get the result at home. Why don’t they do that for chlamydia and gonorrhoea and syphilis? Why not? Because you’ve got this whole thing about sexual health and it’s… People are embarrassed. Whatever other people may say, I’m not embarrassed. Most people are embarrassed by it. So, we do this testing, we’re testing for this thing that’s killed 150,000 people in a year in this country and everybody’s got these test kits. You can test as often as you like. Let’s take that, put it in the HIV world, put it in the sexual health world but no… I know I just said treatment split sexual health and HIV but from the point of diagnosis, let’s weld them together, really really tightly. So, encourage people to test at home. Make it normal. Make it normal, make it frequent and then – only then, perhaps – will we actually start to nail all the new diagnoses as they appear and pick up the seven or eight-thousand undiagnosed. But that has to be, you know… Is it that difficult? I forget, is it like 190million COVID tests we’ve done in this country in a year. Let’s do a few HIV tests. It’s never been picked up. I know it’s probably not… I don’t know if it’s part of your project or not but it’s something I feel quite strongly about, is ‘is there an opportunity missed?’ And we’re not going to get this chance again. There might still be a little bit of time left that, whoever the powers-may-be, whoever they are could pick this up and run with it. But… They probably won’t. But it could change everything. This whole thing about testing at home now. It’s so accepted. Give… Yes, send them out. And in every box of COVID test let’s stick an HIV test in there as well. And in fact maybe start with the easy ones. Start with chlamydia, start with gonorrhoea. Just getting people testing, getting the result at home. Why… what don’t they trust that we won’t do? Doesn’t make sense. Erm. So, I think that was it. I don’t think there’s anything else… No, that’s it.\n
So, after we finished our chat yesterday and I was looking around for the images that represent what my home is, what represents home, and I realised that I’d chosen lots of pictures that were of me. And there were hats, there were masks and there were lots of strange things that I’d done and I had to select just a few. And when I was doing it I realised that they’re not really pictures of my home where I live, they’re pictures of me and then it occurred to me that that’s quite significant because that means my home is me. I am my home and this house that I live in that I’ve created is… it’s where I’ve chosen to store me and my home. Everything about this house is me. That’s why it’s a bit strange in places because I can be very strange. And I’ve reached a point in my life where I allow myself to be me and I’m happy about that. And I’m happy with who I am. I’m happy with where I am. I am at home and that’s... So, I am home. Hadn’t really thought about that before. Yeah, I am home. Wherever I go… That’s dangerously sounding like a line from a song, isn’t it? But… I’m at home with myself. I do sound a bit like I’m waffling again, I think I keep saying that as well. Anyway, I just wanted to put this on tape for you that, yes, home means me and it means that because I’m happy. I’m reconciled with who I am, I’m reconciled with my life with HIV. I acknowledge the advantages and benefits that I have acquired in my later life because I’m HIV-positive and I’ve overcome the difficulties. And I’m happy and that’s good. Anyway, thank you again: that’s it.\n
\n"},{"id":"fgsdf43","title":"Andy","href":"andy","mainImage":"andy.jpg","images":["photo-25.jpg","photo-26.jpg","photo-28.jpg","photo-29.jpg","photo-30.jpg"],"audioFile":"/static/audio/andy.mp3","shortDescription":"Andy's photos","longStory":"\nAndy’s Story.
\n\n Hi, my name’s Andy, I’m 55 years old. I’ve been living with HIV since 2008. My home is my safe space, er, I love it, it reflects me a lot I feel and, yeah, it’s a real pleasure to have you here.\n
\n\n Where should I start? Interesting question. I guess, right now, I’m thinking… Grew up in the Midlands ‘til I was thirteen, then moved to mid-Wales to a rural hamlet which was, had five houses, grandparents lived in the next village, five miles away but as a gay person moving at the age of thirteen from the Midlands where I had lots of friends, to a new school. Sexuality, lots of comments at school. My surname’s Ray so my nickname at school was ‘gay Ray’, but you know people in the village, sort of, talking about other people in the village that I knew were, sort of, very feminine so they’d make comments like ‘don’t bend over, fairy George is coming’ and y’know, there was just all of that. And then going to college, sort of, trained to be a chef. Never had any intentions of moving to London, bar, in my last year at training there was a guy who’d moved to London the year before and wanted two people to go and work for him at Christmas, so me and this girl Tracey went down to London, that would be ‘85. Worked and I was just like, in Wembley at this hotel, and I was like: ‘oh my god’. The first night sitting in the boot of a, well it was a hatchback Ford Fiesta, er, Ford Escort, going down Charing Cross Road at like midnight, thinking: ‘What the fuck?’ So I worked there for two weeks for Christmas went back with less money than I arrived. Then went back to college, did the last six months Did a week’s industrial release in London and then, two, two three days after finishing college moved to London. And then was it.\n
\n\n Twenty-three years in London doing sort of various jobs but always in hospitality and then moved to Bristol in 2008. But I got my diagnosis three months after moving here.\n
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\n\n... the diagnosis was just like put the brakes on how I’d been living life. Yeah. So, it was, yeah, it was a complete shock in some ways but not in others. I wasn’t surprised at all once I got it, but when I did actually get it… Yeah, only because of how I received the diagnosis, ‘cause I’d been to the clinic in the morning at like 10 o’clock for my results because I’d been for a full check-up two weeks prior. Went at 10 o’clock and they went: “Yeah, everything’s fine,” and then in the afternoon I got a phone- I was getting ready for work and there was a voicemail message fom the clinic asking me to give them a call, so I was a bit like: ‘Oh, okay.’ So I gave them a call and was like, this was December the 22nd and I was like: “Well, I’m going to Wales tomorrow to see the family for Christmas, can it wait ‘til afterwards?” And they were like: “No.” And then I was like: “Do you wanna see me now?” And they were like: “Yes.” So I went: “Okay.” I was like: “I’m just getting ready for work but I’ll be there.” So I rang work, said I’d got to do something. Went straight there and literally walked in and they were just like: “Really sorry we missed you this morning, but your HIV results came back positive.” I mean, even now, looking back, you know, they said: “Is there everything okay? Have you got any questions?” And I was a bit like: “No, it’s fine.” ‘Cause I was like, y’know, it’s just surreal, it wasn’t like, wow, fucking hell. 10 o’clock this morning everything was fine. And I, I… My best friends who I was living with, one of them he was like: “Give me a call afterwards.” Because he was like “what’s going on?” when I was leaving, “oh, got to go to the clinic.” So he rang and he was like: “Is everything okay?” And I went: “Yeah, yeah, no, it’s all fine.” And he went: “No it’s not.” And I went: “Why?” And he said: “I can tell by your voice.” And I was like: “Oh, no, I’m HIV-positive.” And he was like: “Okay. Er, you know, fine. Do you want to talk about it?” And I said: “No, going to work.” So I went off to work, did my shift, came home, was a, had a long chat with both of them, just talked about it but, y’know, at that point there was, you’re still absorbing it. And then the next day I drove to mid-Wales. Literally just arrived in the small town where my parents and brothers live, pulled up, saw my one brother on the side of the road with his wife and three kids and the phone rang and I was like: “Oh, erm erm, oh, I’ve got to take this, I’ve just got to go because the signal’s not very good here.” Which was ridiculous because the phone was ringing. Drove off to the local car park, sort of answered it and said: “I’ve just got to move,” so, whatever, drove to the car park and then spoke to them and I was a bit like: ‘Oh, god, that was so stupid.” But, like, and they were like: “Yeah, it’s positive and, y’know, now obviously it’s Christmas, New Year, so we’ll get you an appointment at Southmead in the New Year.” So, which was also just a bit weird, because it was that whole, like, you’ve just left. And I was staying with my parents. So, fortunately on Christmas Day I was with my cousin and my Mum and Dad and his M- his Dad, for Christmas Day. And my Gran. And I ended up going back to my cousin’s, getting really drunk with him in afternoon and just was like: “I need to talk to you.” So, he was the second person I told and it was great, ‘cause I’m really close to him. And we just sat there and chatted and got more drunk. So that was perfect.\n
\n\n I obviously went to work. I was working in a restaurant in Bath at the time, so it was Christmas, we were busy. That night wasn’t as busy, because it was the last night before we closed so there was just a few people in. But, I guess I was used to the routine so it was that sort of like ‘drive to Bath, go to work, do the job.’ No-one asked so I obviously managed to just do the job, yeah. It was really, I mean, and even, y’know, the next day I was, like, driving to my parents and, y’know, that was all fine and to be honest actually even through that whole first period which was, I would say, first couple of months, I was thinking about it constantly. I mean I know the one thing that initially when I came out of the clinic I just imagined this was it, like this was the end. I’m going to die. And that feeling stayed with me for a while. And then, y’know… I think if I hadn’t have had my cousin to talk to and just sort of get drunk and get it all out and just talk to him, it probably would have been different. I mean I couldn’t wait to get back from my parents’, I couldn’t wait for Christmas to be over and I had that weird feeling sort of from getting the diagnosis to my first appointment, which was mid-January, of this feeling of like ‘I know I’ve got it but it doesn’t feel like I’ve got it.’ I was thinking about, y’know, who do I need to tell? Actually, when I left London and I came to Bristol, there was a gap, there was a three-month period in between where I left London, I came to Bristol, but then I went to Spain for three months actually. So I had three months in Spain ‘cause I was thinking of going travelling and whatever. And actually that’s three months before my diagnosis, thinking about it. So it’s… It was because the three months I was also in, in Spain, I was going out and I was clubbing and I was whatever, so there was, there was one particular night and I think there is a possibility that if I hadn’t caught it before, that could have been when I got it. Because of what we did. So, I had to phone that person and tell them. Who was particularly angry on the phone and then just put the phone down, but I was a bit like: “Well, y’know, we did what we did and I know what you do with many other people.” So, at the end of the day I was a bit like: ‘I’ve done the right thing.’ It was actually a very transitional point, so the diagnosis came - looking back now - I feel like the diagnosis came at exactly the right time. If there was ever a right time for it to arrive. But the fact that, y’know, because it made me put the brakes on and as, y’know, that’s the only way I can see it, I sort of compare it to, which could be right or wrong, being an alcoholic and waking up and, y’know, just that morning of thinking: ‘This has to stop.’ I was a bit like… I’d already made the decision to leave London I, y’know, I knew the clubbing had to stop, I knew the drinking… The drinking and the drugs were causing the depressions, which, I wasn’t aware of the depressions, and… I didn’t really have any feeling of home because actually the three years that I was living here at that point I was renting a room in a friend’s house, so, I never really had that feeling of home anywhere because I’ve always rented and I’ve always lived in other people’s homes so my feeling of home has always been – and still is – that I’ve never quite found my home yet. Where I am now, here, where I’ve been four years, going into the fourth year, this is the first time I’ve lived on my own for this length of time. So this is the closest I’ve felt to being at home. But that period, I think I’ve always been looking. But, for some reason never found home or thought… I mean, I know why now, I can… About four years ago, I did a test to find out if I had dyslexia and I do. So, that was never something when I went to school was never picked up on. Part of having dyslexia is that you find ways of coping with it, so I’ve looked into buying houses with so many people and talked about buying a place together but it’s never actually happened. And part of it’s always been around sort of just that coping strategy of ‘can I do it? How do I do it?’ And using other people to, sort of, cover up my, sort of, fears. Having got the diagnosis now and living here and sort of dealing with all the stuff I’ve dealt with here, of actually living on your own and being with yourself has, y’know, that’s, that’s definitely a positive.\n
\n\n And then it was like, you know, you have that other thing around we’re so conditioned in this country to having your own place and I grew up in a family that bought houses, renovated them, sold them and moved on. And there was, y’know, I’ve got four brothers, I’m the eldest. So I sort of feel like, you know, I always felt like I’d failed by not having my own house but living in London that didn’t really matter because there was that sort of like: you live in London.\n
\n\n It was amazing but, y’know, there’s a part of me that feels like it went on a bit too long. But you don’t know how to get out of it either. I knew I wasn’t in a great space when I left, so yeah… But yeah now, I’m like, sort of, even now I mean I rent this place and I know they’re going to sell it in two years so all’s that on my mind is: ‘How… you know.’ I’d love to, sort of, possibly do a self-build because I mean, the one thing that I’ve got is, y’know, I don’t need a huge place, y’know, and to be honest I don’t need something that’s gonna be, y’know, passed onto anybody. So there’s that weird feeling of like ‘well it doesn’t need to be passed on because I don’t have children, there’s no-one to pass it on to’, or whatever, but at the same time I just want something for me. But then, can you afford to do that? And what do you do?\n
\n\n You know, living here’s being great because I’ve dealt with all the ‘can I live on my own?’ Yes, I can. Do I enjoy living on my own? Yeah. Do I love creating a space that feels like home? And this is mine.\n
\n\n Well, where do I feel at home now is Bristol. And that’s lovely because leaving London and being here, I was here for three years after my diagnosis and for those three years as I said I worked at Aqua. I then went to Spain for three months to open a restaurant with a friend of mine but realised that wasn’t going to work and then ended up going back to mid-Wales and living in the area where I’d grown up and where my family was and actually spent two years sharing a house with my youngest brother because he had separated from his wife, in the town where my parents lived which was brilliant in so many ways, but at the same time the whole time I was there I just felt like, actually rural life wasn’t for me. Living there wasn’t for me. And I really missed… I didn’t miss London, but I missed living in Bristol. But what did happen whilst I was there, I started working for myself and started working in doing odd-jobs which then led to gardening and then led to what I do now. But from a home point-of-view I felt like I reconnected with Wales as an adult and I also left as an adult.\n
\n\n So, it’s a one-bedroom flat. It’s quite small. It’s in the… It was a three-storey house which has been converted, so I’ve got the lower ground. It’s quite quirky.\n
\n\n So in the lounge I’ve got two walls which I’ve painted with a… It’s called green-smoke, it’s a Farrow and Ball colour. And then in the kitchen I’ve got, also got a heather colour, so… Yeah, the tones are picked up from that. And it’s got quite old furniture in it and the reason being when I lived in London and when I first moved here... I look back and I had all very sort of chrome-legged tables with glass tops. It was all about image plastic sort of Perspex chairs, coffee tables and, y’know, that whole transition now from working in hospitality to now working as a gardener, landscaper, doing painting and decorating, my home sort of reflects that because I’ve gone for much more rustic, there’s blocks of wood in the corner which are sort of sleepers. They’re cut-offs from sleepers which we built the beds in gardens with but where we’ve done angled beds and the wood’s cut with an angle, that’s why they’re there because they remind me of the garden they were built in.\n
\n\n And then the other thing is there are a lot of things in here which are all about memories, so people and places and things I’ve done. So there’s a Moroccan transcript on the wall in the picture frame, which… My friend Maria lived in Marrakesh so I used to go and stay with her and I also had the restaurant with her in Spain. So I bought that when I was with her at one point. There’s a lovely old water jug in the corner. That was my Grandmother’s and growing up my Mum had it on the, on the oak dining table in the hallway and it was always full with flowers. So when I did move back to Wales my Mum asked me what things I would like from her Mum, if there was anything in particular. So I said that’s one thing, because it always just reminds me of being at home. And so she gave it to me when I decided to move back to Bristol. Which was lovely. The table at my side and the stool was my Gran’s which is my Dad’s mother and she passed away about a year-and-a-half ago and she was just over a hundred. So, when I used to, I mean, I was closest to her my whole life. So in the last house that she lived in this was her dining table and whenever I went to visit we used to have our meals at it but I know that she had all of her breakfast, lunch and dinner at it, every day. And I used to sit on the stool. And so, y’know, just little things like that.\n
\n\n I sort of feel now rather than buying materialistic stuff I tend to pick stuff up when I’m out walking, whether I’m at work and stuff, so it’s got to be a real homely feel to it. And I think that’s why I use old furniture now because I’m a bit like, y’know, particularly where we are these days in... One of the things that I.. Even so doing the landscaping it’s really lovely, we’ve got such a culture of ‘rip it out, throw it away, start again’, when there’s nothing wrong with it.\n
\n\n … in some ways it’s, it’s, it’s been a positive because it was so difficult at the beginning that I was like: ‘How do I tell people?’ And for me it was around, if I look back it was about self-stigma and partly because I’d lost two friends, one in ‘94 and one in ‘95. And I always, I just felt like I’d let myself down. So my relationship is with me is really why I’m, is probably why I’m saying that because that had the affect on relationships with other people. So i.e. family. So whilst I was going through the two years of therapy with Pete one of the biggest things in the first twelve months was telling my parents. And that was to do with I remember telling my parents when I was gay that.. I went home when I was about 21 and I told them and I told my Father and he told my Mum. My Mum was very upset. I sort of spoke to my Dad and he was like, y’know: ‘Oh it’s okay but we don’t have to tell… You know, we don’t have to have a big party and tell everybody.” And so it was never really discussed for another five years until one of my brothers was coming to London to stay with me. And I was like: ‘Oh, shit, I need to go home.’ So over the years my relationship with family and stuff was in a good place. To then have to tell them I was positive I just felt like, partly it was they’re gonna be like: ‘Well, we’re not surprised, it’s sort of, y’know, you’re gay, you live in London, it’s like, y’know, oh it’s inevitable.’ And at the same time I was like, I don’t want to upset them, I don’t want to hurt them, I don’t want them to be, y’know, constantly worried about it because I know what my Mum’s like, she can worry about a lot of stuff. So, I knew I needed to be in the right place to tell them. So in the end I sort of told my brothers as in, I went through my brothers. So I told one, my youngest one who I was closest to. I then told my next brother because he was closest to my parents and so I thought they would be able to deal with it. And then the third one and then the next was my parents. But, even with them I went home and didn’t tell them. I’d psyched myself up. I got all the way there, I stayed for the couple of days and then I was like: ‘Oh, fuck, no. I can’t do it, I can’t do it.’ Left and I was driving away thinking: ‘Oh fuck, I need to turn around and go and tell them, no I can’t because I’ve got to go back to work.’ Next week I rang them and I was like: “Hi, just going to pop up and see you.” And they were like: “We’re in the caravan, we’re at Brecon.” And I was like: “Oh, okay, no no, it’s alright then.” And my Dad was like: “No, no, the, we’ve got the awning on the caravan you can come and see us and it’s fine.” And I was like: “No, no, no, no.” And he was, like, so insistent and I was sort of like: “Okay.” So, yeah, I drove to Brecon. I arrived at the caravan. They knew there was something wrong.\n
\n\n I had no intention of sitting in the caravan about two foot away from them to tell them but that’s what happened. We were sitting in there in the caravan Mum and Dad on one seat on the other side with the dog and me on the opposite side and it was like polite chat and then I was like, y’know: “Well, I’ve got something to tell you.” And I was like: “I’m HIV-positive.” It was like: “Oh, oh, right, okay.” Well, then they were sort of like, Mum said: “I thought maybe you’d got cancer or something, y’know, it’s okay and…” And I said: “Well, y’know…” And we talked about it and actually they were fine. And… I said that I’d brought some information for them, in case they had any questions and stuff so I left the information with them, well… Well, I gave it to them. And then the funny thing was my Dad sort of was like, y’know, I guess this was over about an hour. My Dad was like: “Well, shall we go out and get something to eat.” And I was like: “Yeah, okay.” And as I walked out of the caravan he was like: “Oh well we don’t need to discuss this again.” And I was like: “Er, yes we do.” I said: “The whole point in telling you is in case we need to discuss this again.” And I just thought: ‘We are not going through what we went through when I came out. We’re not having another five years of no fucking discussion.’ This is, like, you know: no. This is not the same… In a way, I think it was that sort of, like, because I really did feel like I had let myself down, in a way, because I’d been so sort of… I guess it’s like so many things when you sort of put this in your head that, you know, you’re always going to be careful, you’re not going to catch anything, you’re not going to, y’know… And, y’know, I guess if I’m completely honest the other side of it I know there were times that I wasn’t taking precaution and I wasn’t being careful and I knew I wasn’t being careful and do I know why? No. It’s just… It was the moment, that’s what it was. And did I, afterwards, think about it? Yes. But I think there were times where it was like, also, it was a bit like: ‘Oh, it’s okay, I’ve done it before and I was okay, so…’ Y’know?\n
\n\n … there’s, you know, I mean, just thinking about all the things we’ve talked about now, this, that’s why I’m so vocal because I’m a bit like, yeah, I’ve lived in London, I’ve lived in mid-Wales, I know what the stigma was like in mid-Wales, I know so much that I sort of feel like, and particularly right now that we’re in another, you know, we’re in a pandemic that it’s like, you know, things are so different because of… it’s, it’s, okay coronavirus isn’t a sexually-transmitted disease but, you know, it’s another virus. It is just a virus. And HIV was a virus but it was never portrayed as a virus, just a virus, it was, you know, that’s what has ignited me to be even more vocal in a way. But, you know, now the fact that all my friends know. I guess the biggest thing I’m thinking right now from in a relationship because I do mentoring, is what I tell new people and it would be my experiences, you know. You don’t need to tell everyone. It’s actually to think why you’re telling people and understand really why you’re telling people. That’s the difference. There’s people I’ve told in the past and I’m like if I look at it now I’d be like: ‘Do I tell them now? No way.’ I mean I told people from da- from a dating point which was definitely a challenge moving back to live rurally and tell people because I felt like if I met people on apps and then they turned up that I should tell them. I didn’t want to tell them and then we’d have a conversation, but most of the response that I got was: ‘Ah, okay, you know, oh no. Sorry.’ So, sex was out of the question and it was just like polite chat and nice, sort of, coffee and then off they’d go. And you’re sort of, like… [laughter – ‘sorry’] No, it’s, it was … Because for me it was, you know, at that point u-equals-u wasn’t out and I just didn’t want to have that feeling of if there’s somebody that I’ve told that happened to know them and they found out, that I hadn’t been honest. And I just thought, you know, even if we use protection I always felt that I should be honest. And that was, you know, that was just my feeling. But I remember getting a job in a local cafe and the woman who ran it was a nurse and her son was a chef but I, and I even said to her: “But if I cut myself, you know, I’m HIV-positive.” And it was like… Not that she could really catch it but I still felt, you know, even with my family or anyone, you know, if I cut myself that I should be the one that dealt with it and I, you know, to make them aware. It was just… In a way it was a caution, but it also made it feel like there was something wrong as well. Like I, you know, you couldn’t just cut yourself and someone sort of could just bandage it up.\n
\n\n But it’s still that sort of, even that shame in a way that… You feel like you’ve come so far but then little things like that still make you feel like there is some shame in it, there is some sort of… And I do wonder whether that’s also tied in with just how – not so much these days – but growing up as a gay person, was, you know, sort of, what you grow up with even as a young gay person coming out. The fact that you have to come out and you go through that whole sort of process of, you know, constantly having to come out and then constantly having to, it’s like, the whole coming-out period just starts all over again and you spend your whole life, sort of, not only just coming out but having to then be on hon- well not just honest but telling people about being positive. And that’s the biggest thing I feel now has changed. Now I feel like with u-equals-u that I am vo- so vocal about it from that point because I sort of feel like I don’t want other people to have to go through this. And I’m like it’s so simple it’s, you know, the message… U-equals-u, even for me was the biggest game-changer… Because I think, that’s another thing that looking back, I was talking about it the other week to someone, you know the fact that people start meds immediately now, so, you know, thinking from when I was diagnosed and you were going for your check-ups every three months and, you know, they were looking at your CD4 count so first of all you get your diagnosis and once you’ve had your diagnosis you go for your check-ups and you’re getting used to that. But then you’re also monitoring your CD4 count come down to the point that it’s like: ‘Okay, now we’re going to start you on meds.’ So you’ve got that feeling inside of: ‘Okay, am I at a point that I’m getting to the point that I’m seriously ill enough? If it’s not seriously ill if it goes further where there could be more complications, so now I’m starting.’ Whereas now getting your diagnosis and starting on meds immediately, that whole thing, part of it has been removed. You know, you just don’t have to go through that, sort of, worry… But from a… from a point of… It’s an interesting one because I guess having been single for so long part of what I am stumbling across at the moment is that very point. Is that the negativity from dating apps and just dating in general is probably stopped me from dating as much. And put a, just a block on it, to the point whereas I feel like I’m just sort of, in the last couple of years, starting again and the more comfortable I’ve become over the years with it… and bizarrely u-equals-u. I think u-equals-u - and I hadn’t realised – that the negativity really that surrounds dating, particularly moving back to mid-Wales and just that whole… Y’know, you only need like five or six people over a period of time to just constantly be going: ‘No, no, no, no.’ And, sorry.\n
\n\n And then just responses from people as well with dating. You sort of get to to that point of… You know, it’s easier not to in some ways. But then you get the other side when you suddenly meet someone and, you know, they’re perfectly just like: “Yeah, it’s okay.” And you’re like: “Oh god, why have I… What’s been going on?” To a point now that I guess I feel in such a good place that I’m like questioning why I’ve been single for so long in a way and what… Am I sort of stopping myself from being in a relationship or even just going out and meeting people.\n
\n\n And I guess it’s, you know, the difficulty is in when you meet someone who potentially you could date, but due to what’s going on in their own life they just, the HIV is too big for them to cope with and then they can’t. And then that also has a really big impact because then you’re sort of like: ‘Well, here’s a person who I possibly could have a really…’ In your head you’re going: ‘Well, I could have a really good relationship, it could all be great. Why don’t you want to deal with it? Why can’t you deal with it?’ But actually they just can’t. Because of where they are. And that, you know, you don’t sort of realise how long simple things can actually take to just move on from, because of the layers of other stuff behind that build up.\n
\n\n I guess it was 2000 and – It was 2016 when Brigstowe was 21 and it did it’s twenty-first anniversary and they held it at Bordeaux Quay and for me, I think that was the first time, I’d only done a couple of things with Brigstowe but I was on their mailing list so I got invited, but I remember it being the very first time of… Going to an HIV event outside of the space i.e. THT always held things that they did actually in the THT offices, behind closed doors and I always felt it was a bit, sort of, closed whereas walking into Bordeaux Quay and going, you know: “I’m here for the Brigstowe event.” And it was like: “Yes, it’s upstairs.” And it was like: ‘Oh wow. I’m in Bristol, I’m HIV-positive but I’m going into, sort of, the city centre. It was like: ‘Bloody hell.’ I’ve always been part of THT, but I remember from then going to Pride and going with Brigstowe and I remember walking through the centre of the city in front of everyone, just sort of walking up ‘round where Harvey Nicks is and up to the Galleries car park and just coming around that corner and I was there with my placard saying: ‘HIV does not discriminate.’ And every… the Brigstowe crowd was all behind me and THT behind me and there was a bit of gap and seeing a photographer on the wall taking photographs and thinking: ‘Fucking hell. How far my life has come, that I can walk through the city like this and remembering standing outside Aqua watching the first Pride, even so I know there was Prides before but there was a period when there wasn’t, coming from the fountains just literally along Baldwin Street into Castle Park and sort of feeling like actually I couldn’t, I couldn’t go to it ‘cause I working at Aqua. I was working but I still didn’t feel like part of Bristol, which goes back to the last question. I never felt that in London. Never felt excluded at all. But that was… I still didn’t feel like I was part of Bristol at that point.\n
\n\n Maybe it was because I was in London for so long. And actually when I come here I was still going through that sort of ‘why am I here?’ So, we’re… I guess we’re talking if it was 2008, 9, 2010, around then when the first Pride was and I didn’t really know that many people and I guess if it was because I was working at Aqua and most of my life was work, I didn’t really know anyone to go with. So there was that sort of, y’know, feeling of exclusion in a way. ‘Cause I only really had Aqua and my only sort of connection with the gay scene was my diagnosis and when I went to THT and doing meetings there. I didn’t really do anything outside.\n
\n\n There was a, there was a… I know there’d been Prides before and then for some reason – I guess it was funding, or whatever, but there wasn’t – then there was the first one and I think then there as the first few that started and they only went from, I’m sure, where the fountains are, along Baldwin Street, into Castle Park. And there was a part of me in, in that way of going: ‘Oh my god, is that it?’ And I’ve total shame in saying that but it’s like let’s be honest I had lived in London for twenty-three years and it was a bit like… But then I was like, you know, now I look back and I think ‘good on them’. Because fucking hell, they had the balls to actually be there and march. Y’know, and I didn’t. And actually there’s a part of… So, you know, looking at how Pride has grown now, I love it.\n
\n\n I feel like there’s the me I sometimes imagine in my head is what I’m like but actually when people meet me I’m very open, very honest, incredibly chatty, love to talk… And love to know stuff about, you know, people. So, yeah I’ll chat to anyone. If I meet them in the street or wherever, you know. And hugely empathetic to people and my dyslexia makes me incredibly reflective because the dyslexic side of me has to, when, when I’m asked things and stuff, I need to think about it and sometimes it can be ‘I need to go away and think about it’, depending on what it is, if it’s, I dunno, a certain project or something that’s coming up. And I think my talking side is, that’s how I get my information out. So, if you asked me to write down everything that I talk about I’d sit there and be absolutely sort of like stuck in a: no. I mean, I could talk about in a way. So, I think in the past there’s been this person who’s been quite shy and sometimes quite reserved and the alcohol and the drugs allowed me to be the person that was sort of afraid of being me, at that time in the past. But I think the diagnosis of, my HIV diagnosis has been such a journey that that has been one of the best things that’s ever happened to me, because it put the brakes on me living the life how I was and made me really delve into the depths of who I am and what were my insecurities and my fears and why was I using the drugs and the alcohol and I guess ‘cause it went on for so long I can quite easily see myself at times when, you know, I’d be afraid of things yet put me in a club and a few vodkas and suddenly I’m like: ‘Oh my god, yeah, hello! Yeah, here I am.” But put me in a club and introduce me to twenty people when I was sober I’d want to shrink away and hide in the corner and, sort of, I wouldn’t want to speak to anyone. Or put me in a club even, you know, I’d be the one dancing on the edge whereas now I’d be the one dancing in the middle, you know, and I do my Positive Voices speaking and my mentoring. Out of everything the mentoring and the positive speaking has been the one that’s brought me out the most because it’s just the realisation that, you know, all my experiences I can help other people in so many different ways because it’s not just to do with HIV. It’s who you’ve worked with, who you’ve known. The drugs, the drinking, the therapy enables me to support people now, but also to do an interview like this, to do the Bristol Post piece as well and to share it on my Facebook. And to actually, whoever I’m talking to now, say that I’m… I’ve got HIV.\n
\n\n I think it’s one of those things where it sparked something in me and I could go and do more but there’s a part of me that also feels that, you know, if it was the right time I’d be doing it. So, you know, the other thing I’ve, I feel like I’m a sort of spiritual person as well and I think the landscaping and the gardening has just highlighted and brought that out. So, I think moving back to mid-Wales, you know, I’ve got one garden that I started working on when I first got back there and I still go back every three weeks and look after that garden, because the lady who owns it is unable to get into the garden so I go and do it and I’ve been doing it now for nine years. Yeah, it feels like it’s my garden but we share it and that’s my sort of spiritual place when I’m there. And I get to see my family as well so it’s got a double bonus.\n
\n\n And now, you know, there’s… I guess the difficulty at the moment is with the new strain I’m being cautious about where I work because I tend to do small jobs , go in and out of places, but yeah… It’s also working on my own is bringing out some of my insecurities, so I guess that’s the big thing with me is that, you know, the… You can be so confident on one side and so sort of spoken and chatty yet you still have that trouble with insecurities as well.\n
\n\n What’s my safe space? Gardening, being self-employed. Even so though that’s a challenge, you know, that’s an interesting one because being self-employed you have to have the confidence to deliver the work that you do. To get new clients. To sell yourself. And I guess what’s interesting that I see now is having worked in hospitality for so long and also growing up in a family who bought, sold, renovated property we were very hands-on and at the time you think, you know: ‘But it’s given me so many life-skills, that I can do.’ What holds me back at times are my insecurities and those are the ones where I’m like being a mentor then challenges me how I mentor myself because mentoring is a symbiotic relationship because you go and support somebody and then you have to look at things that’s going on in your own life and go: ‘Hm. But why, what’s going on here and how to I deal with this?’ Yeah, and work through it. And understand… And really understand yourself. I mean, I’ve got invoices there and I’ve got paperwork and I’ve got diaries and I’ve got money that people owe me for work that I’ve done and the safe space is doing the gardening because I can go and do the work. The difficulty in, for me, which is just bizarre, to send an email or text message telling them what they owe me. And it really takes me back to why I’m not working in hospitality, not working in corporate job and I’m not looking at spreadsheets. That’s not my safe space.\n
\n\n And my home. I guess my home now has, is me. And it reflects me. And I like it. And I guess that’s the next bit in my chapter, in my safe space I need to push myself out of my safe space. Because, yes I’d like to meet somebody. Yes, it’d be lovely to be in a relationship and sort of share all of this and share the fears as well of being in a relationship after being single for so long. Because my safe space is being single and not having to push myself outside those boundaries.\n
\n\n But you’ve also got your fears when you open it, you know, there’s still those… And that’s what I find really fascinating. So I love doing personal development workshops and still just pushing myself.\n
\n\n Patrice I was in a sort-of relationship for three years when I was… I was twenty-one and I met him at the Market Tavern one Sunday afternoon. And I remember him coming over to me and sort of going: “You look so petrified.” ‘Cause I was standing there, it was the first time I’d been to the Market Tavern. It was a Sunday afternoon. A friend of mine had taken me, a guy called Simon, who I shared a room with in a house with five other people. So, ‘It’s A Sin’ has just been brilliant because I was just like: ‘Oh my god!’ And Patrice was like, you know: “Do you want to come back to my place?” And I was like: “Yeah.” And I remember walking out of the Market Tavern and him, sort of, getting into his BMW and driving off to Clapham and he had this beautiful three-storey house in Clapham. Having dinner with him, staying with him and getting to know him for the next three years. And then, I mean for two years… We were, it was always a sort of open relationship. We saw each other. He wanted more, but he was ten years older. And for me it was noticeable. And he had done very well in comparison financially. But then… So I never felt like I could be in a relationship because I just felt like we couldn’t be equal. And that’s the way it was and we accepted it. But we had brilliant times together, it was amazing. Then he was diagnosed in the early part of ‘94. And he was really worried because we had had unprotected sex a couple of times. It wasn’t always but it had happened. And so he was diagnosed with HIV and so I had my test and it came back negative, so it was like, well… And then he… That sort of brought us, in an odd way, closer together and, yeah, just being together with him was so special at that point. And he asked me to go on holiday with him to India. He was going to go and have a two-week holiday to India and I just, it wasn’t just taking a holiday I needed to get the work off time, time off work and I was like, didn’t really, dunno. Just didn’t go. His photograph’s up there on top of the shelf unit.\n
\n\n When he came back from India he had picked up a bug and… With having the HIV he just couldn’t fight the bug.\n
\n\n And so within six months he had died. And it was… Bizarre, because it was like he was fine, he was looking like that when he went on holiday and he came back and he just started to get sicker and sicker and he was like 6-foot-2, big guy, about thirteen stone. And I pretty much… He had a long-term partner for eleven years, Terry, who he had businesses with and pretty much Terry and I looked after him for the last six months. And I remember just him sort of deteriorating in that six months and particularly in the last three months being in-and-out of hospital but in the last three months a friend of his came over from Paris to see him and he asked me if I would drive him back to Heathrow, his friend and take him with him, so I was like: “Yeah, okay.” Nice BMW. That’s cool. So we got Patrice out, into the car and we drive off to Heathrow, dropped his friend off and we were driving back into London. Beautiful sunny day and we’d got club music on and he was like, wound the windows down and he was like: “You can go faster.” And I think I was doing about sixty and he was like: “You can go- .” “Yeah, I am, it’s the speed limit!” And he was like: “It’s fine, you can go faster, it’s my car.” And I’m like: “Yeah and I’m driving.” And he’s like: “Go faster!” I was like: ‘Oh, fuck it.’ Doing about 80. Completely breaking the speed limit but he was laughing and smiling and it was brilliant. Turned the music up. And got him back to the house and he was exhausted. He couldn’t even get out of the car so, at that point, I mean, I think he weighed about six stone. Maybe 8, I dunno. I could pick him up in my arms anyway. So I picked him up, out of the car and I carried him up the couple of steps into the house and I mean it was all I could do to to carry him. And then sat him on the steps and a couple of his friends were coming ‘round for a cup of tea. And so he sat on the sofa in his lounge and they turned up and I made tea and we just chatted and stuff. But they stayed for about half an hour. And he was so upset because they just came in, sort of, I mean they felt.. They didn’t really know what to do but they were his long-term friends and they just sort of chatted, had a cup of tea, and passed the time of day and didn’t really know what to say and off they went. And then I helped him get upstairs, put him to bed, got into bed with him, and just sat in bed with him and that day he gave me – he said I want to give you some stuff to remember me by – so he gave me the bracelet that I showed you. And it was, that was in I think October ‘94 and he gave me that photograph and he wrote on the back of it ‘As a memory to Andy, October ‘94.’ And then he died probably a few weeks later in the November. And that was the last time he ever went out, bar going in to hospital. But I remember like going into hospital and he’d be there for a few days and then he’d come home for a few days and then he’d be back again and the last period he was in I just, you know, he was at the point where they were putting catheters in and stuff… Yeah, the drip wouldn’t work, so they’d have to find a new place and you know, it was on his legs, anywhere, anywhere in the end and every day they were just collapsing. And just sitting there and holding his hand while they were, he was in a wheelchair and they were trying to find different places. And just, yeah, just sitting with him watching this person. And at the same time I had another friend called Xavier who worked with me, with us really. He worked, he was a barman in the bar that we – I say ‘we’ because my best friend Francis was manager and I was the assistant manager – but Xavier was Spanish and he’d been diagnosed, he was a, through drug, through heroin. So, there was this weird time of two people. He was okay but getting sicker. And he died sort of in ‘95, so within a twelve-month period. And I was, you know, many people lost lots of friends but, for me that was, two people.\n
\n\n … and with Patrice I remember his… Terry phoning me and saying, you know: “Would you… Patrice has asked to see you.” And I went to see him, he was like sitting up and he was bubbly and he was like… I said to Terry: “Oh my god!” I rang him afterwards and said: “He was great.” And he said: “Yeah I know.” And he said: “But yesterday he was so bad.” And then that evening I got a phonecall to say he’d died. And it was a bit like he’d mustered up all this energy … And it was really difficult because at the end it was like, you know, the family who, he had lived here for a long time so, you know, but his family were sort of like arguing over stuff, what was going to happen and, you know, it all got quite messy from what I knew. And then we had the service here in London and he was cremated. And I remember, I did go to the chapel of rest to see him in, in… Just by the Chelsea & Westminster Hospital because that’s where he was, so, you know. And actually it was when Chelsea & Westminster Hospital had just opened up, so, for him to go into hospital it was at, sort of like… It wasn’t like, it wasn’t like what it was for many people in the very early period it was just like, you know… But I remember, this is what? ‘94? Dunno. But I remember going into the ward and it was like there was people in the beds all around him and they would be, you’d walk in and it would be like that person had died and another person had died and they’d been replaced and then another person had died and it was that sort of… It was just the way it was and you didn’t really… It seemed so busy and so just in-and-out and in-and-out. But, you know, then going to see him from that point and him being sort of skeletal, to going to see him in the chapel of rest which was really odd because it was just like… Because his family hadn’t seen him, they had filled him and put him back to his normal weight and made him look… So, I was totally freaked out, because I got used to seeing this ill person, to suddenly there he was in one of his suits and padded and make-up on his face to make him look as well as possible, because his parents didn’t want to see him how he was.\n
\n\n It was the most bizarre thing I’ve ever seen. I was just like, and I thought, I mean I had to walk out because I thought I was in the wrong room. And then it was like, and I looked, and then that was really odd because I had to look because I was now in there with this person and then I was just like: ‘I have to leave.’ And then afterwards, they took his ashes back to France and I have no idea where he is because I have no connection with his family, nothing at all. And yet he’s such a big part of my life as… the impact of my diagnosis in 2008 and why I just felt, like, you know, when I got the diagnosis I was going to die, because of what I’d seen in the hospital and what I’d experienced with him.\n
\n\n That was what I saw and then with Xavier who died twelve months later. And, you know, how we supported him and worked with him and you know, ‘cause he just wanted to be as normal as possible for as long as possible. Even at the end of Xavier’s time in at work, Francis and I used to do his shifts for him so he could come to work but he would sit at the bar and we would work for him, just so he could feel as, you know, he could be there and stuff, until the point when it got too much for him to come in.\n
\n\n And I remember having, going to his flat once to see him as well. And having a lovely conversation because he was, you know, so sort of, the whole Spanish side of… Being much more open and far less conservative than the British, and sort of English, whatever, and him sort of saying: “Andy, just stop worrying so much, I just… All I want for you is to just stop being so afraid, in a way. Just be you. And live your life. Get on with it. Enjoy it. Take anything from this, it’s just like live your life.” And that was a beautiful afternoon I spent with him as well. In his flat. And I’m so glad that I did. Yeah. There we go.\n
\n"},{"id":"xcbxcv32","title":"Anita","href":"anita","mainImage":"anita.jpg","images":["photo-48.jpg","photo-49.jpg","photo-50.jpg","photo-51.jpg","photo-52.jpg"],"audioFile":"/static/audio/anita.mp3","shortDescription":"Anita's photos","longStory":"\n\nHello, I’m Anita and I am a playwright. I’m an instructional designer and also a garden designer. And I’m nearly fifty. I will be in three weeks. I never thought I’d get there. And proud to be here.
\n\nSometimes I think home is somewhere I’ve never been. I’ve never been attached to places, even though I’ve lived in some places for quite a long time. I think home is a person, home is a state of mind, of a place of comfort that is with someone and the place doesn’t matter. And that can be a group of people, too. I’ve lived in flat-shares that have been a great little family and a community and that’s felt like home even though it was actually a shithole. And I’ve lived in a nice house with a … that felt sterile and cold and I didn’t want to be there. So home is not a place.
\n\nWhen I’ve tried to make a home, I’ve always tried to make a den. I like a small space. When I lived in a big house, I had a little den in the cupboard under the stairs. In this house, which is the closest I have to a home, my office is the smallest room. And when I was a child I used to like to make dens out of chairs and blankets and I like to retreat.
\n\nAt the moment my office is a very accurate representation of my life in that there’s loads of different project books. There’s garden design plans, there are books that are half-read. There’s a piles of paperwork and post-it notes and... It’s not usually that chaotic but life seems to be just endless, small multitasking projects at the moment. Normally I like things to be quite neat. There’s a wall of books of one side. Behind the desk there is another workspace which is a completely blank, white worktop which I keep clear apart from large plants at either end. And there’s nothing on the walls apart from a Scrabble painting. The Scrabble painting is a, a 70cm by 70cm square made of Scrabble letters that were supposed to be arranged entirely randomly so they didn’t make any actual words but accidentally words were made. I like its randomness.
\n\nI don’t think my concept of home changed. I think I just realised that I was carrying it with me rather than it being attached to a physical building. And because the changes that were happening to me were in my body, it made sense that I had to move. So, it’s the opposite way around for me than for many people who were diagnosed because I was diagnosed when I was very seriously ill and I was in hospital on a ventilator. And I had been ill for a long time before that without really realising, so my… My self was depleted, and when I was diagnosed and I was put on medication, my self started to come back to full strength and that destroyed my home. I no longer fitted in the space which I had created for myself. So, I left a relationship and a place and carried something new away.
\n\nI never felt excluded from anywhere because I was positive. Being diagnosed suddenly and, in my circumstances, kind of publicly because other people knew about my diagnosis before I did, because I was so ill they were coming to say goodbye, so… So, I had… People around me had to deal with the fact that I was positive before I knew it myself and then as soon as I was able to I had to kind of undo the panic and re-explain to people what this actually meant and this was the worse, the worse place it was going to be and I was going to be able to live and live well. So, I was fortunate in that I lived in a reasonably tolerant community. I was involved in theatre and I think theatre communities have always been quite welcoming of difference, so I didn’t feel excluded there. I didn’t consider that there was anything I shouldn’t be doing or anywhere I shouldn’t be going.
\n\nThe doctors explained to my parents and my husband that I was HIV-positive and what that meant, but the ripple-out effect through my friends and family was kind of Chinese whispers, so… There’s no non-sensational way to say Anita’s dying of AIDS. It did cause a panic, it’s a big word. Because the image is that that is not something you could ever recover from, when actually my body recovered extremely well and my viral load became undetectable very fast. My CD4 count rose and has remained stable to almost, almost normal-person level and that means that I’m no longer in danger. So these were things that I was only just understanding myself and I was having to sort of convey that to other people to undo the panic, because there’s been very little education about HIV in the UK in between the tombstone/iceberg adverts of the ‘80s with John Hurt intoning “don’t die of ignorance”, through to the present, unless you’ve been going through school years. And actually, through a block of the ‘80s thanks to Clause 28 there wasn’t any education about gay sex. You’d have missed the messages, you’d have missed the messages of how to protect each other successfully, how to stop transmission and how to live with HIV healthily if you’ve got it. Those messages are still not clear.
\n\nTwo positive experiences from living with HIV. And both of them have come through advocacy, actually, of, erm, being open about my status and speaking about it and trying to normalise it. One was when I spoke at the British HIV Association conference and I told my story and afterwards I got a standing ovation, and I didn’t expect this to be an emotional moment for me. I’ve told my story before, but just to be inside the HIV-community and telling it and feeling an upwell of support around me, I was in tears. Yeah. I felt, I felt like I was literally supported in this bubble of hope and care. And another was just I’ve been mentoring people with HIV and I was with one person who had a journey that involved recent diagnosis and managing alcohol addiction at the same time and we went on a four-or-five month journey and that person came out the other side. That person came out of the mentoring experience having successfully completed rehab, having seen a way forward with HIV and feeling able to have a relationship in the future to being able to see grandchildren, to starting to take tentative steps towards retraining and getting work, and I’ve never been more proud of a person than I was when they came out of the other side of that.
\n\nGenerally speaking, I’ve been quite open about my status from the beginning and… but I have occasionally encountered stigma. One was a friend of my husband’s. His wife wouldn’t let me stay overnight in their house in case I gave HIV to the children, or was in some way a bad influence. I don’t understand where her fear came from, but I didn’t feel welcome and nor did I wish to be around her, actually.
\n\nI’ve received stigma in healthcare services. I joined a new dental practice and told them I was HIV-positive and when I went to meet the dentist he was covered from head-to-toe in plastic, I could barely see his eyes. He refused to shake my hand and he looked scared. He basically said: “I can look at your teeth but I can’t do any procedures on you, we don’t have the decontamination facilities here.” At which point I said to him: “Well, I’m going to report you to your governing body because if you cannot protect your other patients from my HIV, you certainly cannot protect anybody here from hepatitis, flu, even the common cold and I wrote the right letters to the right places and he got retrained.
\n\nOh and I had to have that whole conversation with the door open with me standing on the threshold of the waiting room, discussing my HIV-status in front of receptionists and everyone else who is wanting to listen. I wonder if any of them had the blood-borne viruses conversation and thought twice about being treated. I hope so. I self-stigmatise myself, as well. In a rash moment, I decided to join a karate class just because it was around the corner and it was kind of interesting and even though we weren’t sparring with each other, just because I was just a complete beginner, I looked at this space and thought: ‘I know that my viral load is undetectable and I am untransmittable but I actually don’t want to have to explain that to people here. And I don’t want to alarm anyone.’ So I walked out. I did self-stigmatise in that moment. I would have been useless at karate anyway, I’m a complete wimp.
\n\nMy diagnosis was immensely traumatic for everyone who was around me, because I was so so ill. It was horrific and I wish I could have spared the people around me that experience. It was… It was not only difficult news, the whole thing was visceral and… It was a, it was a horror movie. So erm… There’s so many stops along the way where that could have been prevented, including… Is that a dog? I might just bring him in. I’ve no idea what you’re going to get here. Ratty, let’s have you over here. Tuck in.
\n\nI think because I was so ill and it was… and my diagnosis was late, and it was traumatic and I was in hospital and I was dying, it was a nightmare. It was a nightmare for everyone around me. It was… It was really traumatic and I would have dearly loved to have spared everybody that experience. Everyone was incredibly supportive at the time and they were on my side and willing me through it, praying, singing folk songs, reading me, to me from Hello! magazine, whatever it was that they felt they could do to get me through. So I haven’t felt judged but people see me as fragile in a way that they perhaps didn’t before, and it’s taken me quite a long time to reassure people that that’s not going to happen again, I’m okay. Really, I am okay.
\n\nI think a safe space is always to do with the close friendships I have around me. My husband but also my female friends and old friends. It’s also a mental space, which is… It’s the same place that I retreat to when I’m creating. Which is part-meditative… Which is partly meditative but it’s also moving elements around at very high speed. Kind of trying different arrangements of story, thought, character, plants. Whatever it is I happen to be working on. And I can move myself into that space from actually quite emotional spaces or quite stressful spaces. I can even drop into it for a fragment of time. Thank you Ratty. As a writer I’ve kind of trained myself to drop into that space and use it quite effectively even if it’s for a short duration.
\n\nI think my first community is the household community, which is partly being part of a dog-pack actually. That community is quite vocal at the moment, thank you Ratty. That community has brought me into the community into which I live, because I’m constantly, sort of, trying to find new walks and new footpaths and we’re bumping into people and we get to know the landscape and the seasons. The dogs have really placed me in this place. So in some ways I think I have a better connection to where I am now than anywhere I’ve been, ‘cause of these critters. My other communities are kind of more virtual. I have the, I have my community of people I make radio with. I have my community of people… I have my community of people I make learning products with. The other community that I am connected with is the HIV-community and that’s something that’s only happened in the last two or three years, where I’ve been, become a mentor with the Sussex Beacon, I’ve become a speaker with Terrence Higgins’ Positive Voices because I want to tell this story about ‘can’t pass it on’. I want to tell this story about ‘we live well’. I also want to tell this story about ‘we can end transmission’, the 2030 target the Government has said and that people don’t need to live with stigma and trauma. They don’t need to live with ill health. But when people with HIV encounter these problems along the way, there’s a community out there that can help you through it.
\n\nDescribing myself? My favourite animal is the armadillo, which if you’ve never met an armadillo, they’re actually quite bold. They wander around poking their nose into things. They can be quite loud, a little bit clumsy. They’re a little bit secretive because they’re nocturnal, but the important thing is they kind of carry their own shell. They carry their own home. So in a minute’s notice they can curl up into a ball and they’re completely self-protected. So I think of myself as a bit of an armadillo.
\n\nI also, I’m also going to throw this one in, it’s not a question, but I also see myself as a home. I am a habitat, I am a biosphere and I carry, as everyone does, a raft of little microbes, viruses, bacteria, fungi, other things that make eggs, things I don’t have names for. And among them is the HIV virus. So, like it or not, I am a home.
\n\nI’m planning my 50th birthday party at the moment and I’ve probably been living with the virus for 25 years, so I think that kind of makes it a sort of silver wedding. It’s the longest relationship I’ve had with any organic being and – please try not to be so bored, Ratty – and… I’ll start that again. It was a bit shit, anyway. I’m going to be 50 this year and I’ve been living with the virus for 25 years, which is a kind of silver anniversary. It’s a very long-term relationship and we’re both kind of dependent on each other. One could say we’re toxically co-dependent but – like it or not – here we are; we’re bonded. And it’s the end of the line for the virus because I’m not going to pass it on. Also weirdly it’s the end of the line for me because in my 30s I decided I was not going to have children, because I was HIV-positive. With different information a different person might have made a different decision, but anyway… So. I am planning my birthday party and we’re both going to have a cake. I’m going to have a cake and so is the virus and it will be very interesting to see if any of my friends eat the virus cake.
\n\nMy cake is going to be vanilla sponge. I might layer it up to look a bit like an armadillo and the virus cake is going to be the chocolate cake which is the one that everyone’s going to want to eat. It’ll be covered in green icing and spiky bits. I don’t know if it’s even possible, I can’t bake a cake. I can’t even bake a potato.
\n"},{"id":"lkj@£2","title":"Ashley","href":"ashley","mainImage":"ashley.jpg","images":["photo-999.jpg","photo-91.jpg","photo-92.jpg","photo-93.jpg","photo-94.jpg","photo-95.jpg"],"audioFile":"/static/audio/ashley.mp3","shortDescription":"Ashley's photos","longStory":"\n\nOkay. So, I’m Ashley Hawken, I’m nearly 61 years old. I was a coach builder but now happily retired and yeah, so… So I got positive in nineteen… When I was 50, the… nearly the same week as my birthday. Or maybe the week before. My seroconversion was directly after my birthday, so it sort of ties up. Timing. Perfect, yes. I looked terrible at my birthday. I did look terrible as well. And, yeah, so seroconversion was just after my birthday, and I was undiagnosed for five years. In that meantime, I’d had shingles, everything. In the end I ended up with no platelets, CD4 of 15 and a viral load of 32 million. Yeah, 15 it was. Yeah, and I had thrush, genital warts and bad skin. So you name it… Oh, and I had appendicitis that was undiagnosed. And that week before I went in to hospital, the, the doctor gave me painkillers to get rid of the appendicitis. The appendix had burst twice. So my body was full of poison. So, yeah.\n
\n\nThat was six years. So that was 2015, I was… I was diagnosed nearly to the day of my seroconversion. June the 3rd was my seroconversion and then, June the 3rd I was told I was HIV-positive. So it’s fine. So I went on for five years. So I survived five years and, anyway… So, I was in hospital for two nights and come home and then they called me. Kieran phoned me up, said: “I’m a specialist nurse.” He didn’t say what about, he just said: “I’m a specialist nurse.” So my Dad took me in and, er, so I sat down, he said: “You’re HIV-positive but fortunately you haven’t got the rest.” And I nearly said: “Well, I’ll go and get them then.” Just to make the set. But, anyway, he gave me antibiotics immediately and… so I wondered what that was all about. I had an appointment the following Tuesday. I went in and found, found the viral load and on top of that I had no platelets as well, so… And they, and it turned out the my appendix was a fifty-mil mass of pus. So, yeah. So he put me on, straight on… I can’t remember what I was on, might have been tri-med, and then they got the viral load down quite quickly actually, three, about three or four months, maybe six months I was down to 15 million and then by that time, no: it was quicker than that ‘cause I had an operation, ‘cause I went back to work in December. So I had my operation and they wouldn’t do it ‘cause I didn’t have any platelets. So they said, I said well: “What can I do?” They said: “Well, we can give you a platelet transplant.” I said:”Well, just do that then.”\n
\n\nYeah. Yes, it’s quite hard. But I didn’t realise, my hospital, my operation was due to be 1 o’clock in the afternoon. But I didn’t realise that at that time they were moving HIV patients to the last one of the day, so I got moved, from 1 ‘til 3, so I become the last one of the day. I didn’t realise that at the time. But, I didn’t mind, I wouldn’t have cared anyway. No point getting worried up about it. So, they, so they took my appendix out and six inches of stomach as well. Erm, yeah. And they done a keyhole surgery through my bellybutton. But they cut straight through my bellybutton. To get it out.\n
\n\nSo, yeah, so it took another two months and anyway I went back to work. And I went part-time then, to four-day-a-week. I was a service engineer and used to be on the road, but they took me off the road. And I used to like getting out with the group, just getting away. But they took me off the road, so I just sort of played along with it. And I did enjoy work, and I, and you know, if it was right I’d go back now, but, so. So in the end I was down to four-day-a-week but then I thought: ‘I’ll just retire.’\n
\n\nWell, I didn’t tell everybody. I told the service engineers who I was working with. I was the coach builder. I used to build posh medical units, stuff like that. Hospitality, you know, things like that. But, anyway. I told the engineers I was with but I didn’t tell the actual coach builders. And I used to walk in the factory and everybody used to, like, look over and start, you know, but I just played along with it, but I thought just… Just encourages this little game you got. And then one day I thought: ‘No, I’ll just tell the gobbiest person over there.’ So that’s what I done. And within five minutes everybody knew.\n
\n\nBecause being non-binary trans it’s quite difficult to fit in. ‘Cause there’s no… It’s just becoming acceptable now, but there is no box. What box do you put me in, you know? There’s no… I think all non-binary trans people we all suffer with the same thing, there’s no, there’s no actual box. Especially for non-binary people because, like a trans-man or a trans-woman, that’s, that’s a box to go to, but non-binary you’re just floating in aether.\n
\n\nYeah, where do I fit? You know. Where do I fit amongst this? There is no, erm… Some people don’t understand, a lot of people don’t understand it. One day you wake up feeling male, another day you’re like really female, or, or just somewhere in between. There… And what is this in-between space? It’s like going in a gay bar. My mentee has said it. He said, they said they went in a gay bar but they don’t really fit there. ‘Cause as a trans, non-binary person you don’t really belong.\n
\n\nYeah. That furthered me, it furthered me to drive me on to the person I am, now. I am... I don’t really care what anybody thinks of me now. That’s why there’s photographs on Brigstowe in make-up and a skirt on and I don’t really care, I just be me. Because it’s hard to live a lie. It’s too hard to live a lie. And it’s, it’s depressing, as well. Exhausting. Yeah, it is. Completely. You know, it’s like… My Mum’s 85, I don’t tell her anything because it’s easier she don’t know about it, she haven’t got to know. But, my sisters know that come from the article and the rest of the world knows but she… No. But, you know, when I’m away from them I just live my life as a trans, non-binary person and I, and I don’t really care what the world thinks.\n
\n\nYeah, yeah. I think the HIV’s, has driven me on to be the person I am, ‘cause it’s a driving force as well. It makes you… It just strengthens you. And I don’t know about anybody else with it but I found inner strength from getting over it. From being where I was. From a near-death situation you’ve got to… You know. You’ve got to take the, I take the… I take strength from the fact that I’ve survived it. I was strong enough to survive it. It might have killed some people earlier. So there’s something… There’s something in me that makes me strong.\n
\n\nAnd… To beat, yeah. But, but when I talk to my… ‘Cause my mentee’s been newly-diagnosed and now and I say why you’re really healthy. ‘Cause they’ve got CD4 counts of 800, you know, they’re… it’s done no damage to them. But people don’t realise that even though I’m undetectable, there is, it’s done damage to me. I’m tired, it’s damaged my voice. I got, I got scars all over my stomach because of it. And it is still there. It’s still… and I call it the dark place. Everybody, I think… Everybody with HIV they go back there occasionally, you know? There’s not many people that don’t go back there. But it is, it’s not a… It don’t take long to click out of it, now. It’s just… And there’s no point in looking back and there’s no point in getting angry about it. ‘Cause I had great fun getting it.\n
\n\nI used to go to Brighton. I used to go out at 6 o’clock at night, I’d come back, come back 6 o’clock in the morning, after going to the sauna all night, and the bar and then... I had a wonderful time, I had… All the dark rooms and the dodgy places, it was… Well, why not? Yeah. And I always got on better with casual sex, anyway. I never, never tied down. I be honest, you can say I should’ve used a condom, but, but how often does that apply?\n
\n\nAnd I wouldn’t change anything for the world, to be honest. Because of, because the HIV-community is a tremendous community, really, I think is… You know the ones that are especially around Brigstowe, it’s tremendous, you know? You still get… I think the rest of the world is - outside the community, even the gay society - they’re worried because they don’t know anything about it and they don’t want to know anything about it. So it’s all about education, because it’s gone under the covers a bit, hasn’t it? It’s sort of gone away, so, it’s not with us anymore.\n
\n\nI do clinic mentoring as well, so. I don’t know how much more I can be involved really, but… I’ve only done it to give back really, because… Going back to when I was diagnosed, so, anyway, eighteen months in and I took my car in for a service and I was in town and I went and see Bonnie at THT on West Street, it was there then. And she said: “I’ll put you onto Lauren.” And I didn’t... I didn’t realise ‘til after, the low place I was in. ‘Cause I, and I come home from that after picking the car up, and I come home and had a cup of coffee and I thought: ‘Do you know what? I hadn’t been out for six months.’ I hadn’t been in a pub. Hadn’t seen my friends. I just went to work, come home, had some tea, went to bed. And that’s the same, and that’s all I done. Day in, day out. And I realised… All the cars, the garden was in a state, the house was… I’d just given up on life basically. And then Lauren phoned me and I, so I done the newly-diagnosed group at Brigstowe and then I had a mentor. And, so… I really come out of that within six months. I was turning like ‘round the circle, you know, I was coming out of that dark place. And then, then I volunteered to be training for a mentor, senior mentor. So, I passed that and I got 100% on the NVQ. I don’t know how I managed it but I done it. And then, yes, so… At that same time I joined Campaigns, which was Polly, before Aled. Aled joined as well, that same time. So, so Aled joined then… I become a mentor, I joined Campaigns and then I just went full more into HIV, you know. You know, let’s get this message out there.\n
\n\nAnd that newly-diagnosed group, when you meet ten people and there’s straight, gay, males, females, they’re all, and they’re all in the same room and you realise you know, you ain’t the only one with it, and there’s one, well, Emily. Well, I met Emily there and we were all thinking: ‘how did she get it?’ but you get it by sex, don’t you? It’s just… I know the haemophiliacs used to get but I don’t think they do now, because of the screening… Everybody had unprotected sex didn’t they, that’s how they got it. There’s no need to ask a question.\n
\n\nI hadn’t been out of the house for six months from… Well, I was in, within a year, the first year, I was alright. I was diagnosed, I was diagnosed and then… I was alright for a year and that I, that’s, yeah, I then, I sort of really did give up. It was… And you don’t realise how psychological it is. A lot of people don’t realise it is psychologically damaging because you just shut the rest of the world out ‘cause it’s easier to shut them out ‘cause why do you wanna answer questions? Why do you wanna, you know, why do you wanna relive that horror? Of that? It’s not, you know… And especially back to seroconversion when it lasted a tremendous three months and I had… It was horrific. I had diarrhoea and sickness for six months, for three, for two months. I was like nine stone, nine-and-a-half stone or something, you know. It was the most horrendous thing that ever happened.\n
\n\nThis is, this is my happy place. This is me. This surrounding… because I built it and it’s built around me, this is, and all this stuff around me, all these Gromits and these pictures and these model cars: this is me. This is my happy place. Yeah… And this is like a sanctuary, as well.\n
\n\nBed is a safe space. Yeah, bed’s… Yeah, it’s… Well the whole place is a safe space because I can shut the front door and… I used to have it that it’s so safe that when I was working, I used to turn the mobile off and when I had a landline I used to pull the landline and I’d turn the Wi-Fi off and that’s what I used to do. That was the only way I could physically deal with, deal with it for the eighteen months to a year. And that was just after I was diagnosed, as well, because I couldn’t see any way of me ever going out again in that point, so, so this was… This was it. This was my life. And, er, it still is a lot, well, it still is my life.\n
\n\nIt is armour as well. It’s armour from the rest of the world. ‘Cause, I mean, you gotta have… Everybody gotta have somewhere to go. For me, it’s not travelling, I don’t like, I’ve done enough travelling. When I was a service engineer. So maybe that, being a service engineer and me on the road, I’ve always looked forward to coming home. So I used to drive two or three nights away, I used to hate it. ‘Cause I was away from here. So I used to try and do it in a day, and get back. And then that’s when I realised that this place was as important as it was. And when I thought about selling it, I realised I can’t.\n
\n\nAnd then, and then I got my other sanctuary, which is the garage, the cars. If I wanna go and really lose myself I can. Forever. I used to spend hours out there. And the garden. You got a garden to play with, so…\n
\n\nI think, the way it looks from the outside, the fact it’s stone-built. It’s all stone-built and it’s got an original Victorian sash windows, semi-Georgian, so they’ve been there since 1844, so, especially on the front. And I built the extension, which is on the side. So it’s stone-built, double Roman clay tiles on the roof. Built in 1844, original sash windows, two… Well, the walls are 21 inches thick, in places. It all leans. It’s all subsiding. And when I bought it the doors wouldn’t shut because they were 5/8s an inch out of square and it was all like that. Everything’s, everything leans on… Even, you see… The house is out of square as well, sort of diagonally out of square. It’s got original doors and it’s quite brightly coloured and it’s full of Gromits, model cars, photographs of my cars. And books. And loads of paintings. And a lot of nudes, as well.\n
\n\nYeah. I realised you gotta have somewhere to, gotta have somewhere to be yourself. I’m happy. And like I say, when I, when the diagnosis come along and what I realised how important the non-binary trans bit become, this was, this was the place I could first be me, as, as a person. My true self. So this was, this was important to me. The whole, the whole thing become important to me then, ‘cause this was the first place I experimented in being me. As a true person, you know. But without this, I don’t think I could… I don’t think I could be me. I couldn’t share it. I couldn’t share this house with… ‘Cause I don’t think people und-... I still don’t think people understand non-binary, so how can you share it with somebody who’d never understand it?\n
\n\nIt’s an invasion of privacy and then when I go out as me then that’s my choice to go out as me, but…\n
\n\nAnd the strongest thing I think come from... I think it come from… There’s a couple, actually. I think it was Darren from Bristol Pride. Darren Carter. He’s, he was the CEO of Bristol Pride. I went to, it was LGBT history month a couple of years ago and Darren was there. And I had a strong reaction from Darren, but also it was Henry, as well. Henry who runs Off The Record. [MB: Oh, I know.] And it was all, all-encompassing as well, you know, it was just… And for the first time ever I could be an HIV-positive person who was also trans non-binary and I went to Transcaf and, so it was Henry first and then it was the rest of Transcaf, so it was a lot of people who were trans or non-binary, but, I get more… I think it’s, the reaction is more positive from the non-binary trans community than it is from the gay community. And of course, work as well. I think my workmates were brilliant, as well. There was no, there was no… Question that they were going to exclude me from anything. And my boss, as well. So, it generally has been really good.\n
\n\nYeah. And my boss as well. Because I was being bullied at one point and he noticed. So he found out who it was and I said: “What you gonna do then, James?” He said: “I’m gonna go and talk to him.” And, so it was somebody from the coach-works, so I went in and that person was… Just turned his back and walked away from me. And on my retirement card he did actually sign my retirement card. There was one case, yeah. Just one. Well, there was a little gang, you know? You get one ringleader and you get a little gang that… Because I was so forthright I think they, that person didn’t have the guts to face me.\n
\n\nAnd a few occasional sexual partners, as well. Because, but I suppose we all suffer that one. But then you gotta say, then I say: “Well, I know what I’ve got, what have you got?” Yeah, I get checked every four months, what do you get? You know, when did you last get checked? I know exactly what’s wrong with me, so…\n
\n\nSo, so I started volunteering at Brigstowe and she [Ashley’s mother] then said: “Why you doing that?” And I said: “Well, give, to give back what I’ve taken.” And then she sort of accepted that and then horror-of-horrors, I done a television programme on Inside Out West. So I done a television interview and it went out, my god when was that? Not this time last year, last February. I got it on the hard-drive, I can’t watch it. I really can’t watch it. I just can’t. I’ll watch it one day. I can’t deal with it now. But, anyway. So, I was on Inside Out West and everybody else seen it except for me. And she wanted to stop me from doing it. She said that: “I don’t want you to do it,” she said, because... Because they’re living in the past and they think I’m going to get bullied and beaten up because I’m HIV-positive because… That’s your view in it? And maybe some of them... Modern view, I don’t know. I ain’t had that, I ain’t seen that much discrimination around me. Fortunately. Apart from within the gay community and, but, that goes…\n
\n\nSo, and that… Then that… But my sisters and my brother-in-laws they don’t care, and my niece and my nephew. She didn’t even really want me to tell my niece and nephew and they were… Five years ago, so twenty-five… So she was twenty and Mum was trying to keep it a secret from them that I was HIV-positive. And then yeah my sister told her because it was easier. And my nephew said: “As long as I won’t get it.” She said: “Well, no, no you won’t get it, because it’s blood-borne, innit?” You won’t. It’s difficult to get, innit? Really.\n
\n\nYeah. But that was the only thing close, my Mum, but the rest of the family been alright it’s just… And I don’t know why she was so, so very frightened of it. I don’t… It’s beyond my comprehension, on that one. Maybe it’s lack of understanding.\n
\n\nYeah. And maybe she thought… Then she said, then she said about sexuality, she said: “We’re never gonna bother with men again.” And I thought… Never gonna bother with men again, and I thought: ‘Well, you don’t actually get this, do you?’ It’s like… it’s what’s in your brain, innit? Even to the point she said, to somebody, she said: “Well, Ashley didn’t want children.” Why was I gonna have children? Yeah, she said… Well, she was trying to make out the reason why I didn’t have children. Without telling anybody I was gay.\n
\n\nYes. So it’s still covering tracks, you see, that why, that’s why it’s still difficult. So she just got the television programme, she just about managed that. And then I done the same as you in the Evening Post, that article and it was quite revealing ‘cause even Lauren said it was a bit brutal. And I thought: ‘Well, you know… there’s no point in doing it unless it’s brutal, is it?’\n
\n\nI consider myself a young 60 year old, non-binary trans, HIV-positive… HIV-positive, doing my very best for the HIV-community and living my life to the absolute full. Full life possible. Still with many interests and… Yup. That’s how I would describe myself.\n
\n\nI just, I just… I just think that it’s time to for this stigma to end. It’s time to stop judging people, that was the headline. But I… Just stop judging people who are HIV-positive because you don’t know what’s going to happen to you, you know. It could happen to anybody and, erm… The amount of married men I’ve been with, you know. It’s… so we’re all… Everybody’s guilty of something. So don’t just judge the HIV-positive ones because they were the ones who were unfortunate enough to get it. Could still be, could still be the negative ones who get it now, ‘cause it’s still going on. It’s never gonna end, no matter what they say, it’s never gonna end because people are people. Don’t think so. ‘Cause human nature.\n
\n\nIt’s alright thinking that… thinking that it’s going to end because that’s, that’s brilliant, that’s like a good thing to aim at but I think the chance of zero transmission, especially when my GP, I had, they invited me in for a pneumonia jab so I went down and she said: “Why are you due a pneumonia jab?” And I said: “Well, I’m HIV-positive.” So she said: “I’ll just have to check and see if you are.” Yeah. So, this is… this is the level and a doctor who I seen to get a letter to work part-time said: “You’ll have to tell me about HIV because I don’t know anything about it.” So, this is why it’s never gonna end. Now this is a Bristol, this is Bristol, this is Beechwood Practice and they don’t know anything about it.\n
\n\nYeah. But so… So that’s what you’re up against and besides that they’re not teaching it in schools enough, are they? They sort of go past that a bit. So we’ll have sex education but we’ll go past the diseases. And also down the doctor’s, I took, I took my Mum down for an appointment and on the wall they had chlamydia tests. So I looked at them and she came up and said: “That’s for up to 18 year-olds,” and I said: “Yeah…” - no, 21 year-olds – I said: “Where’s the HIV tests?” “Oh, we don’t do that.” So, so this is why it’s never going… This is why I don’t think it’s ever going to go away. You might get small transmissions, you might get down to single figures, but I don’t think the zero… I don’t think the zero is going to be here.\n
\n"},{"id":"vsxcx33","title":"Becky","href":"becky","mainImage":"becky.jpg","images":["photo-82.jpg","photo-83.jpg","photo-84.jpg","photo-85.jpg","photo-106.jpg"],"audioFile":"/static/audio/becky.mp3","shortDescription":"Becky's photos","longStory":"\n\nMy name is Becky, I’m 34 years old, I live in Sheffield. I’m a Mum, I’m 30... – I’ve said I’m 34 – I’m a Mum and I work in HIV support. I’m also a teacher and a trainer.\n
\n\nHome is somewhere you just, for me, where you feel your best at. Being at home is being comfortable, so to me it’s not necessarily the house you live in but it’s where you feel at home. So I feel at home… I do feel at home here in my house but it’s also my city, in Sheffield, it feels like my home. I feel at home in water, always, whether that’s a bath or out in a reservoir.\n
\n\nI always feel at home around water and I always have felt really comfortable around water, even since I was very young. I like, I like being in the water and natural water. I think I just feel calm, I just feel very calm and safe around water. It’s always inviting to me and I always want to be in it. I want to be part of the water, not just viewing it a lot of the time, but… You know, if I can’t get in I’m happy to sit and look at it, like sitting on a beach, you know, or sitting by a lake or a river or something like that. So, I think everything about it, like the sound, the stillness over the top of, especially… So, I swim a lot in reservoirs and obviously they’re very big and very flat and I just… I love the calmness on the water. But then I also love it in the rain and when you’re swimming in the rain and watching the droplets on top of the water when you’re in the water and looking around you and seeing the sheets of rain just, like, howling across the hills. Yeah, it’s very wild, it’s very satisfying. You feel very connected to the world. Yeah, I think that’s why I like it so much. It really connects me to the world when I feel like I’m in water.\n
\n\nI think it’s hard to separate my diagnosis from my divorce because they happened very soon after each other. I separated from my husband of about ten years and then three-ish months later I discovered I’d contracted HIV and, and… So, all of those emotions around HIV and having it were all, are all sort of mixed up with that, my changing relationship status as well. So, I think, a little bit. It did change how I viewed my home. I was worried that I’d never be accepted after my diagnosis, which I think obviously is part of… Being home is being a part of your family and your friends and I was worried about not being accepted so that could have, like, yeah… Changed my view a little bit.\n
\n\nIf anything, it’s only made the relationships in my life stronger, rather than weaker. I recognise that I come from a real place of privilege for that, ‘cause not many people get that. HIV wasn’t in my life at all before my diagnosis and I think it’s very different for people who have grown up with it in their community or grown up with it or become part of a community where it is really prominent. So… HIV just wasn’t part of my life before I contracted it. And I know I’ve got very supportive friends and family, so I had no fears over telling them over my status. No real justified fears, ‘cause I knew everything was going to be fine. It was just the act of telling them that was hard. I knew after I’d told them everything it’d be fine. I didn’t have to worry about being ostracised from my community or from my family or from my friends. Yeah, everything pretty much stayed exactly the same, but got better because I’d shared this thing with them that was making me very, at the time, I was very ill and they just wanted to know what was going on really.\n
\n\nI think when I decided to be public and share my story that was... The most positive thing I got back from that, it was I met a woman… I used to work for Positively UK, delivering peer mentor training and I met a woman on one of the trainings I went to and she said: “Oh, I can’t believe it’s you. I’ve read your blog, I listened to your thing, I saw the interview,” and she was like: “You changed how I viewed myself.” As a woman living with HIV, she said she’d never seen anyone like me tell her, tell your story. And she was like “… I could relate to you.” And that was probably the best thing ‘cause that’s why I did it, because when I was diagnosed there was no story like mine, even though it’s probably the most common story that people have, who contract HIV. They had sex with someone who didn’t know it, that they had it. And that’s how the majority of people get it and yet the story you hear is of extremes usually. You hear of abuse, you hear of violence, you know, and that does happen and that’s horrible for that, for who that happens to but it’s not the most common story. It’s not how most people contract it. And I just wanted it to be out there that you can and actually get it and anyone can get it and the reason people wanted me to share my story was because I was educated, a mother. I was a teacher, you know, I was a professional and yet I still managed to contract just by doing what everyone would consider a normal behaviour for a single woman in her early thirties, you know...\n
\n\nAnd it is part of the stigma around it because the stigma around HIV is massive, but the stigma around women having sex is still massive and it’s ridiculous. And when you put those two things together they add an extra layer of shame onto it. Now I’m not saying that men who contract HIV don’t feel, sort of, shame on it but they have a different type of privilege that women don’t have, you know, and women, medically generally are ignored in most areas, including HIV so I just thought it was important to get some other perspectives out there. And there are other women doing it as well, there are, but you know, but it’s always good to have a range.\n
\n\nI remember doing one of my trainings and it, er, one of the men on the training was saying to another person who had had it since birth, who was born with HIV, and he always said: “Oh my god, you did nothing wrong did you?” And then we talked about that process and at the end of the training he says: “I’ve learnt during these three days that I didn’t do anything wrong either,” you know, and part of learning about accepting your status is learning that you don’t do something wrong to get HIV, because I think that is unfortunately a lot of the public’s view of it as well, that if you have HIV you must have done something wrong to contract it. And there’s that whole level of good HIV and bad... It’s good, it’s fine, if you had a blood transfusion in another country or if you’ve had it since birth then you did nothing wrong, but if you contracted it because you had sex or because you shared needles then that’s bad HIV because you did that to yourself. And I think a lot of accepting your status is getting over that, that… That hurdle.\n
\n\nI made that point in my, the very first little speech I did. It was in 2016, the end of 2016 I did it. I made a little speech saying that when I first started telling people I felt like I had to give them a running history of my sexual history and be like “...oh, I split up from my husband and it was the first person I slept with and I had only slept with one person...” and, oh, and I felt like I had to justify it, but, I don’t do that anymore. And I still did it even after I did that speech, sometimes, but I don’t anymore. I made a point in that speech saying that: “If someone came to you and said that they had developed diabetes, for example, you know, would you sit them down and get them to list all the fatty foods they’d been eating and the sugary foods they’d been eating and judge them on it? You just don’t do that. You wouldn’t do that. But people do do that with HIV. They will judge them based on who they’ve had sex with. It’s a bit of a double-standard.\n
\n\nI’ve not had many negative reactions. I think partly because… Sorry, Beatrix! Don’t look away from me like she’s not doing anything wrong. No, I’ve not had many negative reactions. The only negative reactions I’ve had is because I was single for a long time, so the only negative reactions I had was telling people on dating apps or telling them in person. I had a few… One man told me it was disgusting that people like me even had sex with people that who were negative, who were putting everyone at risk. Who didn’t obviously know anything. One person I told who, he did, I told him in person and he did freak out and we’d already had sex before and I thought: ‘Oh, this might turn into something more.’ So I told him and he just freaked out and he was just like: “Oh, you should have told me, you should have told me.” But… I mean, largely I haven’t really had negative reaction because, especially publicly, and I think it’s because, again, I’m privileged to be white and to be educated and I go into, like medical settings for example, people often talk about how they’ve been stigmatised in healthcare. Healthcare obviously within HIV is great but as soon you step outside that sexual health bubble, it’s awful. The knowledge is so low, but because I’m confident I go in with a, with this, like, this HIV activist’s hat on and it’s literally the first thing I tell them and I will ask them: “What training have you had in HIV? What do you know about it?” ‘Cause I’m challenging them, I’m like: “You dare discriminate against me!” Try, because I’m gonna… I’m gonna make it so you cannot! So, I’ve not really had much of a negative reaction. I’m trying to think if I did. But no.\n
\n\nBecause I’m a chatty person anyway, I’m an open person, and me not talking about it was out of character to me, to not tell my friends or family about it. So, it just made those relationships better, so it’s a positive change. Yeah, so I had a lot of men just disappear off the dating apps when I told them. That’s always fun. They go: ‘Oh no it’s fine, it’s fine, it’s fine,’ and then they just don’t reply like the next day. Fine, is it? I remember telling one man and – ‘cause my Instagram has got HIV stuff on there – and it’s an easy way for me to tell people without me telling them. I just say: ‘Oh, just go look at my Instagram and then if you want to continue talking to me after you’ve seen that, just get back to me.’ And he got to me and went: ‘So, what does that mean then?’ And I’ve said that I have HIV. And he said: ‘Oh, right.’ And then he said: ‘I didn’t think you couldn’t not pass it on,’ if you know what I mean, if you had sex. He thought that you get it every time you have sex with someone who’s positive and I said: ‘That’s not how it works.’ And I said: ‘Are you still interested?’ And he was like: ‘No, it’s a risk.’ And I tried to stroke his ego a little bit, I said: ‘Oh, you seem like an intelligent man. Do you not believe in scientific fact?’ And he just said: ‘No. I don’t.’ And I was like… I was like I’m not going to go down that route any further, but let’s just think of all the other things that you believe is scientific fact just because somebody told you it was, yet with this you just blank, not going to… And one other time, just remembering negative reaction, I did a teaching session in a room full of Year 9 so it’s like three-hundred Year 9 pupils and there was this teaching assistant and he came down to talk to me after, after the session and he was like: “Oh, wow, this stuff it was blowing my mind, you know, when I was a kid I remember all the adverts, all the people dying.” I was like: “Oh yeah, it’s changed now.” And then he asked me about U=U and he asked me a little bit more information on it and he kept on questioning it, he kept on questioning about this blood to blood contact and he was like: “You know, if you’ve got blood on blood…” But he kept on asking me about it and I knew he didn’t believe me and I knew he was going to leave that room still not believing me and that was sad. The kids believed me though, so that was good.\n
\n\nI’m part of different communities in the sense like, I’m part of my swimming community and we are a community because we’re a group. We have this one bit of passion and I know I can go along to a swim and I won’t know anyone there but everyone will be, will happily accept you and you can… ‘Cause I’m one of the more experienced members now I can show them the ropes and I can invite them along and everything’ll be, you know, we’ll all get on. Locally, I suppose I’m not as much of a, part of a community around where I live, physically. I mean, I know my immediate neighbours but further than that not, not really. I like to support my local community and the local businesses and shops and restaurants and things, you know. But I’d say the swimming and things is my main community I feel a part of, and again just being a part of the HIV community. It’s a community that has been fully accepting and embracing of me and everybody I’ve met through it and I’ve met people up and down the country when I was delivering that training and it’s just been amazing. And, you know, a lot of them I’m still friends with and, yeah. Oh my god, settle down cat. I don’t think she’s… Because we’ve not had a new person in the house, for months and months and months. She’s very… She’s being very skittish.\n
\n\nSo my safe space, I would say is, in water. I can just picture it in the middle of a big lake or a reservoir with all the trees and the hills around you, just sort of floating in the sunshine. I’d say that’s my happy place. And if I can’t do that then in the bath. In the bath at home is the next one. If I can’t get out to swim and I’m feeling a bit low or down I will just go and have a bath and it just sort of levels me out a bit.\n
\n\nSo I would say I’m quite a confident, chatty person. I like talking and I like conversation with other people. I’m a very social person. What other people think of me does matter, I think, and that’s not about physical appearance either. I’m a very casual person. I’m not one to wear make-up or do my hair much. Yeah, I think I’m… I’ve got crazy curly hair. And I like my face, I’m not that happy with my weight. Yeah, I’d say that’s it.\n
\n\nHIV is just… Part of my life. It’s… It’s, for me HIV has only ever made my life better because it forced me to look at myself and accept bits of myself that I had been, that I’d struggled with for a long time when I was younger, you know, in my twenties. I think part of that is just growing up, you know, people… You do hit these realisations in their thirties. Part of it is being a mother, you know, you see things a bit differently, you know, and, but… Mainly, I think, I’ve never, I’ve never had to force myself to look at how I react to things until I had HIV. Until this thing happened to me. Yeah… It’s, it’s.. It’s very… I’m trying to think of the best way to say it. ‘Cause I don’t want to put people down who can’t, who don’t cope with their diagnosis very well, but… For me, it’s easy. It’s easy to live with HIV. Because medically I am very well and it’s put me a better place mentally than I’ve ever been in my whole life, so… And I don’t… I’d like to think that change would have happened without me contracting HIV but obviously you can’t back so you don’t know. It was the catalyst for change for me so, yeah… I’ve only ever had sort of good things come from it. Including, say, like finding a new partner because it’s a really good bullshit filter, you know? If someone’s not going to accept that immediately you know they’re not really a good person. One of the things I’ve said in an interview before is that I’m not gonna apologise for having HIV and if someone doesn’t accept it immediately I haven’t got time to wait for them and some might see that as ‘oh, well you’ve got to give people time to read, acknowledging it’, and I was like: “No.” They either accept it or they don’t. And yes they can read knowledge and things like that and they might understand it a bit more but in that initial thing they either accept it or they don’t. My partner, he tells me, I met him online over, in… During lockdown, so we met on Tinder so we talked for quite a bit before we actually physically met up and I told him about my HIV before I met him which is not, I don’t always do but I think the circumstances of what was going on in the country… And he did tell me that when he read it first, that bit of message, he said that he was just so sad because he thought: ‘Well, that’s it now, we can’t date, we can’t have a normal relationship.’ But in that one message obviously I told him about my medication, I told him about being unable to contract it from me, all within that one message and he said, so, he read that first bit of message and then he read the rest of it and then he followed me up with a couple of questions and that was it. That’s the level of acceptance I want from people. Fine, have questions. Fine, be shocked because they don’t know about it but that acceptance has to be… Immediately. And I suppose that goes for anything, like, you know, that is stigmatised in society, like for example someone being transgender. You have to have that acceptance from the start and then you can ask questions. Yeah, that’s it. Lovely.\n
\n"},{"id":"iou234","title":"Emily","href":"emily","mainImage":"emily.jpg","images":["photo-107.jpg","photo-108.jpg","photo-109.jpg","photo-110.jpg","photo-111.jpg"],"audioFile":"/static/audio/emily.mp3","shortDescription":"Emily's photos","longStory":"\n\nI am Emily. I am thirty-two. And I live in Bristol with my three-year old son and my long term partner. I have a full-time job. Trying to remember all the things… What makes me me. I don’t know, I’m just a normal person. I am currently furloughed but I do have a full-time job in administration for the transport industry which is… Or the motor trade, should I say sorry. It’s one of those trades that grabs you and you try and get away from and then you never can. Although I love it.
\n\nI was diagnosed with HIV in 2016. And my diagnosis was a massive shock, in the beginning. A very very big shock. I was not expecting that at all. And about... I’d say I went on a kind of six months’ worth of just pretending it didn’t happen and it wasn’t there and telling myself I was coping fine and then I realised I really wasn’t coping fine and then got in touch with our local HIV charity, Brigstowe, and, well, haven’t really looked back since. They’ve been amazing.
\n\nI would say home to me is where I feel safe. It’s a space that I’ve kind of put my own touch on and it’s also somewhere where my family is. Home is family and happiness and definitely a bit of a comfort blanket.
\n\nMy home is full of stuff. My home is often a little bit of chaos mixed with love. Chaos usually, definitely toys everywhere most of the time. I have managed to put them away today, kind of, they’re still running around though. Hello Pooh Bear. And, yeah, we’re definitely not, definitely don’t have a minimalist house, I’d say. I once - our last house that we lived - which was for just under a year in Devon, was a beautiful little village in the middle of nowhere, countryside. You looked out of the windows and it was just rolling hills and sheep and silence. But we couldn’t... we weren’t allowed to put anything on the walls so that to me was the saddest house to live in. There was no pictures of family and crazy horror movie posters. I like having posters or at least something that makes me laugh every now and again. Corey Feldman. I was lucky enough to meet the two Coreys while they were still alive. Well, one of them was still alive. Miss you, Corey Haim. It was at a, it was at comic like book convention many years ago. Yeah. It was a Lost Boys reunion. Although Kiefer wasn’t there but the rest of the cast were there. It was cool.
\n\nSo, when I was diagnosed I was in a house-share… I love, I’ve always loved living in house-shares even though it’s often, you know, it gets too much and you think: ‘I can’t deal with all this mess like all the time.’ But, I loved, I love living with other people and being social and always having other people there to hang out with. But I think after I was diagnosed because I was in a very busy part of Bristol I felt like I couldn’t get away and there was no peace and I really really craved just a quiet space. So in that sense I guess it did change it a little, but home now is a lot different to what home was then.
\n\nI was quite closed about my status for quite a while. It wasn’t until after I’d met people at Brigstowe that I started opening up about it and then… And now I basically just tell everyone. But… So, my closest relationships… I don’t think they were massively affected to begin with, purely because I didn’t talk to anyone about it. And then after I decided to tell close family and friends it almost made me realise that, like, how lucky I was to have them there and have these friends and have family that were so supportive and accepting.
\n\nOnce I started slipping into a depression post-diagnosis, like, the depression was obviously a reaction to the diagnosis but it also was, you know, depression as well, it wasn’t purely because of the diagnosis. Like the diagnosis probably sparked it off and I slowly declined downwards, but… So, when I started feeling really down I’d find myself in some situations where I’d usually be really comfortable, so… I was, I’m a part of a few different groups, drumming groups and also used to go to some gym classes and… So just after diagnosis it almost made me react in the opposite way, so in the beginning I was like: “Yes! I’m still strong, I can still do this and take this on.” And then towards the end of the downward spiral I’d go these places where I’d usually be surrounded by, you know, my peers, my friends, I’d feel so comfortable… I suddenly started feeling like an outsider and… yeah. So I had a bit of a break from my usual groups and things. Which was, which now I realise it was just because I wasn’t talking about it. And after I did talk about and everyone in the groups now knows why I suddenly had to leave and just have a bit of breakaway, they’re… Yeah. they’ve become really supportive too.
\n\nI do samba drumming so it was a big group of drums. A big family. But yeah, but things like that were always, that’s… Is something that’s really important to me. It gives life that extra spark. I try to, try to do what I can. We’ve got a little local community here. I mean, it’s not been… I’m surrounded by really lovely neighbours so I’m very lucky. We haven’t had much going on this year, obviously, through a lockdown. Yeah. And it’s something you kind of… You’re not forced to but I think you just naturally fall into that once you become a mum. You just have to start meeting everyone… Meeting local mums, and hang out with mums.
\n\nLuckily I haven’t had many negative reactions. I think if I have I’ve just forgotten about it. And I think if I have had any negative it would have been from people I might, I don’t really know so their opinion doesn’t really matter to me anyway. But I’ve definitely got a few positive ones. I say the, the ones that I always feel proudest about is when I’ve told someone about my status and it’s made them think twice and they’ve said: “I didn’t think this could even affect someone like me, I’m going to go and have a test.” And I’ve been like: “Yes!” That’s what I want, that’s, my work is done.
\n\nSo, those are my favourites. I’d say one of the very first people I told was my, now long-term, partner and he, when he first heard, said that: “It doesn’t, it doesn’t change who you are.” Which I thought: ‘Oh thanks, that’s nice.’ And then he went a little bit quiet which I totally expected and at this point I’d prepared myself to just accept that I can’t control what he then does. So while he was being quiet he had actually gone to the, I think it was a sexual health clinic or his GP possibly and asked them about HIV. And that was just, you know, above and beyond what I’d expect anyone to ever do, so… Yeah. Well done, sir. He’s a keeper.
\n\nI’ve had plenty of other, plenty of others but… Trying to think, trying to think. I’ve told hundreds of people, so I can’t remember... It all becomes a blur in the end. I’ve heard some terrible stories and I can’t believe people are like this. But I’m very very very lucky.
\n\nI think safe space isn’t just a physical space. It’s definitely like a mindset, ‘cause sometimes, sometimes, like for instance, I love being at home but I also get really bad cabin fever. I have to, I have to get out. I’m quite lucky because there’s quite a few nice… I guess Bristol in itself has got quite a lot of nice green spaces. So yeah, I think safe space starts from your own head. I guess safe space follows you around wherever you go, you just gotta, you just gotta remember that.
\n\nI think most people would know what it feels like to think: ‘Oh I’m fed up and I just want to get away from here.’ But at the end of the day, you’re still you…
\n\nI’m a strange individual. I’m definitely very smiley. I’m just, I think I’m just smiley and happy and weird. Mainly. Smiley, happy, weird… I definitely, I think I’ve become stranger since having a child because I’m more outwardly strange now, whereas before I’d tend to… I mean, I thought I kept a lot of my like strange noises and thoughts to myself but actually now I think about it I don’t think I did because everywhere that I’ve ever worked people always either called me a clanger or ‘there’s the crazy cat-lady that’s always miaowing’. ‘Cause I’m often making different noises. But I think I do it without realising. Sometimes.
\n\nI like to think of me being a little bit wonky. But then I like people’s wonky. People are too obsessed with being, like, perfect, and you know, just, dunno, my boring… And everything people think is a flaw to them I always appreciate. I like people’s strange quirks.
\n\nI guess the only other thing I’d add would be about people’s reaction in general… So, usually when I’ve told like close friends and family and my peers about my status it’s generally a positive reaction but I think the general public, or general people, would, would often… What am I trying to get at? They often don’t really have a good thing to say. And I think general people can be quite judgemental. And myself, for myself, I don’t really often, you know, what other people say, you know, to me if people have to say something or be negative about something then that’s what they have to do, you know. Thanks for your help but carry on, it’s not going to affect my day. And I think a lot of people these days just, I dunno… I almost feel like they’re obsessed with… I feel like I’m part of a blame culture and they’re obsessed with just letting everyone else know that they’re absolute saints and we live in a nation of virgins who all wear condoms every time they have sex, so… I think to, to, to people that aren’t in the HIV-community, to… No, I won’t say that. Just shut up! No. Just, I dunno, maybe, if you’re not going to be helpful and you don’t want to help our future generations of people then, then just go and find something else to whinge about, you know.
\n\nWe’re not all perfect. And flipping no-one’s perfect. But for some reason everyone thinks they’re better.
\n\nThis is the thing with the general public… I think most of the people who go out of their way to try and set other people straight and say: “Well, y’know, you know there’s risks, you should have thought about it...” You know, are the type of people who I don’t think we’re ever going to change the opinions of. They’ve got their own opinions for everything so we’re just going to have to accept that and try and get to the people who, you know, we might change the minds of or we might educate them about…
\n\nSo, I’ve seen quite a few different, like, AIDS-related documentaries and films and most of the time I’m just like: “Ugh, let’s turn it off.” It’s too much all this, trying to spread the flipping wrong message. I’m getting the wrong idea with these things, you know. But, I don’t know, I can imagine reviews for ‘It’s A Sin’ being kind of 50/50 of, you know, look how far we’ve come that AIDS doesn’t really exist in the UK anymore and, obviously, there’s going to be the flip-side, there’s going to be homophobic reactions, you know…
\n"},{"id":"1as4r2","title":"Florence","href":"florence","mainImage":"florence.jpg","images":["photo-9.jpg","photo-11.jpg","photo-16.jpg","photo-18.jpg","photo-112.jpg"],"audioFile":"/static/audio/florence.mp3","shortDescription":"Florence's photos","longStory":"\n\nMy name is Florence Obadeyi. I’m 49 years old, I’ll be 50 next year and I’m half-Nigerian, half-Jamaican and I’ve been living with HIV since 1999, so that’s 21 years ago I was diagnosed with HIV. And I have a son who is 20 years old. He lives in Hull. He lives in London and I live in Hull.
\n\nHome is this country. Although I was born in Nigeria - and my father was Nigerian and my mother was Jamaican - I came to the UK in 1997 and I’ve lived in the UK ever since. I lived in London for fifteen years so home was London for a long time, but then I married my husband and he’s from Hull. He’s from Willerby, near Hull, and so we decided to come and live in Hull and home is Hull now for me and, yeah… Home is Hull.
\n\nMy home is home because I’ve got my two cats. I’ve got Pinky who’s a confident cat that goes out and comes back into the house. I’ve got Chelsea that is not so confident, who likes to stay in the house. I live with my husband at the moment. My son lives in London, so he’s not with us. So home is… What makes home for is my husband really, he’s the only one. And the cats. Yeah, my husband is nice, gentle man and I’m very happy with him. We have a really good relationship, we’re very close and we do things together. In my house, when you come in to my house you will see lots of fishing objects because my husband likes to fish. He does it as a hobby. In the garden, we have, my husband, he’s got a motorbike. So he likes going biking and I sit on the back of the bike and we do that in the summer and so I enjoy doing that. We go, he’s part of a group, a few different groups, that go on rides. They just meet at a certain location and then go off and ride into the countryside for hours and hours and hours so… Yeah, so you see that in my home my kitchen is full of vegan food because I’m vegan. I’ve been vegan for about fifteen years now. I was vegetarian for… I’ve been vegetarian for about twenty years but vegan for about fifteen years. My husband, when I met him, tricked me into letting me think he’s changing to becoming a vegan but then we got married and moved into Hulll, moved into the house and we’re living together he suddenly now, suddenly say, demanding chicken and meat. “I’m bored, I want chicken, I want meat.” So, I’ll say I’m not a very strict vegan. I’m strict with myself but I allow other people to choose what they want to do. So my husband has meat. He cooks chicken and everything, so he does that. He’s a good cook, he used to be a chef so he’s a good cook. So he cooks his own food and sometimes he eats what I cook, my vegan meals as well. So you find that in my
\n\nkitchen.\nUpstairs in my bedroom, you’ll find all my clothes. I’ve got lots of wigs because I’m African and we like to wear extensions. I’ve got lots of wigs! My husband say “...no, no, you’ve got enough wigs, not another one!” I’ve got short ones, I’ve got long ones. Also, I have lots of clothes. I’ve got casual clothes, I’ve got clothes I like to wear when we’re going out in the evenings for a meal, although with COVID now I’ve not been able to dress up and go anywhere so I just wear my jeans and my jumpers when I’m at home. What else? Yeah, my son’s room is vacant at the moment because he’s living in London. He left home when he was eighteen, he went to university and his room has just been empty since. So fingers crossed, we’re not sure, we have plans for the future. We might be thinking of maybe fostering or adoption or anything, something like that, yeah? But we’re not sure yet. And then, in terms of HIV, the only evidence of HIV in my home will be my medication so I keep my medication upstairs. Just on my sidetable and my husband keeps his on the sidetable as well, so we don’t need to hide our medication we’re very open about it. We don’t often have many visitors because Hull is very quiet. We tend to go and visit people more. There’s a Nigerian community in Hull and I’m part of that community. There’s a Nigerian restaurant, we go there once in a while, just for a different vibe ‘cause there’s Nigerian music and there’s Nigerian food and things. So, I think that’s all I can say about my home. I’d love to have a bigger house. So, I’m working towards that. So I can have a walk-in wardrobe, I’d like that! So, I’m really looking forward to hopefully moving to a
\n\nbigger house in the future.\nBefore my diagnosis my plan was to come to the UK, maybe work for a while, make some money and then try to relocate back to Nigeria. But that’s totally changed, because when I got diagnosed I just knew there was no way I would survive in Africa so, and, I have a long story about that because when I was diagnosed my visa was running out, so I had to quickly find a solicitor to apply for asylum for me and we put in an application in two-thousand-and… 2000, and I didn’t get a reply ‘til 2010, when eventually I was given a ‘leave-to-remain’. So for ten years I was living as an asylum seeker and I only got forty pounds for myself, twenty pounds for my son, because my son’s dad left us when I was pregnant when I told him… I told him I was diagnosed with HIV and that was the last I saw of him. So I brought up my son by myself ‘til I met my husband now and my husband now is like a dad to my son. But for those ten years I couldn’t work. So what I did… Not long after I got diagnosed, in fact the week I got diagnosed, I rang up HIV charity Positively UK, used to be Positive Women in those days and I spoke to someone that invited me to support groups and I went to support groups and that increased my confidence and so I started volunteering, any opportunity I had to volunteer casually. It was a bit difficult having a child ‘cause I had childcare issues. But whenever I had the opportunity, like when he was in school, I would go and volunteer. So, it was really difficult. Very difficult. But the good thing I did was volunteering because it’s also helped my application to the Home Office because it showed that once I get the right-to-work, work permit, I will not be on benefit, I will be working and that’s exactly what I did. Since 2010, when I was granted ‘leave-to-remain’, I’ve been working as a carer and I’ve not
\n\nstopped since then.\nYeah, I missed home a lot. A lot of things happened, actually. My Mum died. She died in… She died in… That was… She died in 1998, so I couldn’t go home to see her, to bury her, yeah. I couldn’t attend her funeral and then my Dad died in 2005. So I lost both parents and I never went to their funerals. I sent money home. I made sure that they had enough money to have a good funeral at home but my brother went home, my sister went home, but I couldn’t go. And that’s because if I’d gone back home I wouldn’t have been able to come back to the UK and with HIV I couldn’t, just couldn’t, it was just too much risk. So, if I… Because I’d put an application in to the Home Office to say that it’s not safe for me to live in Nigeria with HIV. I couldn’t go there and trust it’s not safe. I might not be able to get my medication, and stigma is really bad in Nigeria and things like that. So that changed for me, so home… After, once I was diagnosed I just knew I was going to have to live in the UK ‘til I die, really, and that’s what I plan to do now. And also, my son is born in the UK, he’s born in London, he’s a Londoner. I’ve got nowhere to go. I have to stay where he can find me, see me easily. Africa is just too far away. And I’m really grateful for all the help and the support I’ve got through the Government and I’m really grateful I get free medication and I’m able to take care of myself. I’m
\n\nreally appreciating all of that.\nWhen I was diagnosed with HIV I decided to tell one of my ex-partners. I rang him up. I preferred to do it on the phone, so I rang him up and I said “… oh please, I’ve just been diagnosed with HIV, please go and have an HIV test done.” He turned around to me and said: “Florence, if I have a test done, if it’s positive, I’m going to get a gun and I’m going to shoot you.” And that was a big shock. That really scared me. That was in London where there’s gun crime, there’s knife crime. So, I… Luckily went and tested and came back negative and came back and told me on the phone, called me and told me on the phone that he’s negative. I didn’t think, you know, I didn’t feel safe around him, so I kept away from him. And then when I told the father of my son as well, he kept in touch with me from… ‘Til my son had his last test, when he was eighteen months, to prove that... his tests to show that he was negative, just to make sure he didn’t pick up the virus from me. And that was the last time I heard from him and then he changed his number and his number was just gone. I had no contact for him and so I’ve had to bring my son up without him. So, that’s a bad
\n\nexperience.\nAnd for the first ten years, when I was trying to date, get a partner, I told people and they’ll just stop calling or stop picking up my calls. They… The relationship was… I couldn’t build a relationship. People were too scared, you know, of HIV. And we did not have, in the first ten years of my life living with HIV, we didn’t have the information about U=U, about undetectable equals untransmittable, which means if you are on medication there’s no way you can pass the virus on. So, now I feel more confident because I know that I have that to back me. I have that research, evidence to back me. That I’m not infectious.
\n\nI cannot pass on HIV. Yeah, so...\nPositive experiences I’ve had living with HIV… I’ve told people and, okay, I told a friend and she just, she doesn’t think it’s a big deal, she just thinks, oh, she’s so nice and she’s an American and she just says to me “… why don’t people just read things up on the internet? It’s there on the internet.” ‘Cause when I told her about U… When U=U came out, so when you can’t pass it on if you’re taking medication, when that was… They proved that, medical doctors and medical professionals decided to tell people that actually, you cannot pass it on. And I told her that and she said, “Oh, it’s on the internet!” ‘cause she looked at it and she saw it and she read it. So, she’s been nice. She’s okay. And there was another one I told, she’s English, she was very nice and she still is very nice. Both of them are still my friends. I told a potential partner as well and he’s been okay about it, he’s alright about it. That… I knew him before I met my husband and I told him before I met… So this was going back to 2005, 2006, that time… And I’ve gained a lot of skills from volunteering, in my HIV. The public speaking I do with my HIV, with THT Positive Voices, that has built my confidence. Now I know how to speak to a crowd of people. And I can tell them my story, so that’s positive. And my son knows that I’m doing all these things so that’s all very good for him, as well. So he sees me as a positive role-model. And I’m hoping that it helps him cope with knowing that his Mum lives with HIV. I asked him the other day, I said, I told my son when he was five, and, but when I told him I had to say to him as well, I had to say to him, I said: “Please don’t go and share Mum’s health condition,” and I explained the reasons why because I’d already spoken to him about sex, that’s where babies come from, so it wasn’t that difficult to explain it. And he did keep it quiet, he didn’t tell anyone. But the good side, the good thing about that was when he was growing up with me, when we were back in London, we used to go to support groups a lot. Those support groups really helped him a lot because I told him, I said: “Remember, all those are your friends in the creche.” Because when we go to support groups they had creches for the children and I said: “Their Mum have all got – Mum and Dad – have got HIV,” and he says “… oh really?” First time I told him he was really surprised and I think that gave him confidence, so now when I’ve asked him, when he’s twenty now and living in London and I asked him and I said: “Have you told any of your friends?” And yes, one day he was drunk, he told his friends and everyone was sorry for him. So, so that’s been positive. I think living with HIV has given me confidence as well. I’m determined. I’ve got determination. Yeah, I want to achieve in life and I’m trying to do things that achieve in life, yeah.
\n\nDefinitely.\nMy family members… for a long time I didn’t know what was going on when I was living in London with my son as a single Mum. I just noticed that every time I told my sister she was like “...oh, so so so Auntie at the party, so so so niece at the party, so so so nephew at the party,” and I just used to think ‘… oh, maybe she just thinks I’m not that age group that’s why she never invited me.’ It took me a while to realise that she wasn’t inviting me to parties because of the HIV. I was an embarrassment to the family. The worst one she did, when she was turning fifty, she told me, two weeks to the birthday party, and it’s not just a small birthday party it was in a hall so you can’t plan that in two weeks. And my brother was flying down from Ireland, as well. Before all that, my relationship with my brother was better, with my sister… It’s always been a bit dodgy with my sister because she didn’t live at home when I was growing up, but I always tried to make amends of that by overlooking the fact that maybe she treated me not very nice sometimes. But yeah… And my cousins, when I told my cousin… I used to go and sleep over at her place. Now, every time when I call her and say “Can I come?” she gives me an excuse. Yeah. So many things
\n\nlike that, yeah. Definitely.\nHIV definitely has affected certain, certain spaces in my life, yeah. Yes. Definitely it did. For a long time, ‘til I met my husband. That’s why I’m very close to my husband because we both know what we’re going through. My husband was diagnosed in the ‘80s and he was going to die. So, it was just when medication came out and they gave him medication and that saved him. But he actually had tuberculosis so he was very ill and, did he have... He had shingles as well, so… But he’s been well since then. Yeah, so we support each other. I get my support from him. It’s… again, like I said, my confidence has grown but before I met him it was difficult when I met people and I was going to date them. I had to say to them at one point, I had to say to them “… I’m living with HIV,” and like I said in the past, early on, it just broke the relationship. It just did not work. I think people are just too scared, people don’t seem to really understand the way it’s transmitted. They still think it’s like COVID, like you can get from sitting next to the person I’m talking. Or you can get from sharing cutleries and things like that. People are scared. I think the Government should have on telly adverts, like they have for diabetes, for high blood pressure, for heart disease, there should be something modern and relevant to this age, about HIV, they should. Because people are going out… There are a lot of people out there that have not been diagnosed, don’t know that they have the virus and they’re passing it to their loved ones, all the time, it’s happening every day. So it would be cheaper for the Government to actually have adverts or a campaign out. It’s cheaper in the
\n\nlong run than having people on medication.\nI’ve got the vegan community and, at one point, when my son had some problems at primary school, I home-schooled him, so there’s a… I have a whole group of home-schoolers in London… I’ve kind of lost touch with some of them but I used to be a part of that community. Yeah, I’m definitely of the HIV-community. Yeah, the HIV-community is a big one for me. I’ve got lots of friends from all over the world. The beautiful thing about HIV is that it’s spread all over the world so I’ve got friends from Kenya, Zambia, Zimbabwe, you know… Nigeria, as well, but definitely from other parts of the country
\n\nas well - of the World - as well.\nI think being with my husband... Yeah, I trust him. He’s very trustworthy. We have clashes sometimes because sometimes he’s just being a man and he can’t connect to emotional side of things sometimes, but yeah, he’s my… He’s my rock really, yeah. Since I met him. I’ve been able to achieve a
\n\nlot of things since I met him. Yeah.\nI would describe myself as caring, loving, understanding, open-minded. I’m interested in other people’s cultures. And respected. I’m an atheist, I don’t believe in God, but my family don’t know that but they’ll probably find out now! Yeah, I like to dress up, I like to take care of myself. I like to be well-presented. I’m reliable, so if I say I’m going to do something I try to stick to it. I don’t let people down. I am good at organising things, so I’m quite organised. My house might look like I’ve got a lot of things but if you look at the things they’re all arranged. So, I’m tidy. I like a tidy space. I’m colourful, I like colours. When I dress up I like to wear bright colours. I don’t really like wearing black. I like to wear red, green, blue, nice yellow colours. I like glitter. I’ve got a glitter bag, I’ve got glitter shoes, I’ve got glitter… Sequins dresses. I like glitter. My favourite time of the year is this time of the year, Christmas-time. I like Christmas a lot. It brings back good memories of when I was growing up. ‘Cause when I was growing up, Christmas-time, my family, everybody would come home. Grandmother, auntie, uncle, niece, nephew, we’ll all come together and have a big meal together, so… I’m not able to achieve that here but I still celebrate Christmas so I have my lights up, I have my my tree up. Cook special Christmas dinner. I’ve adopted a lot of the English culture. The thing is, being half-Nigerian and half-Jamaican was a… Has been a challenge so far. I can understand that with my son as well because he’s half-Nigerian and half-English, or British. So, the Nigerians, when I clashed with them, or when I had a disagreement with them when I was living with them in Nigeria they’ll turn ‘round and say to me: “You’re not even a Nigerian!” Because my Mother was a Jamaican. And then when I came to the UK, and I met… I actually dated a Jamaican. The man who said he was going to get a gun and shoot me was a Jamaican and I dated him and… But he always used to see me as, like, I’m African, I’m not Jamaican as him. So somehow the Jamaicans didn’t really accept me either. So, I’m just in between. So, I don’t know. When I get my British passport I’ll say I’m British. So, it’s complicated. I understand what my son is going through now. Because he’s mixed race, he’s neither here or there. He’s mixed-race, that’s what he is. I’m mixed-culture, as well. Same race, same black race, but the culture is different. I picked up a lot of Nigerian behaviours, the good ones, the good behaviours, like respecting all the people, being kind and caring to strangers and things like that. I picked all that up. And then from my Mum I picked up the food, rice and peas, ackee and salt fish - I don’t eat that now ‘cause I’m vegan – ginger beer, curry, yeah, so I picked up the food and a bit of the culture as well. And I’m open-minded when it comes to music. I like music a lot. I like music and I’m very open-minded when it comes to music. So anything that sounds good, yeah. My husband is into rock, rock music. And I didn’t know I was into rock music ‘til I met him. Because when he puts on the channel on MTV, and puts it on rock, I’m singing to all the songs. I’m looking at him and thinking ‘… oh, so?’ It’s actually… I didn’t recognise it when I was growing up, that it was rock music, I just thought it was music and I just enjoyed it. So, yeah, I enjoyed that. Because he’s a biker, we’ve been going to, he’s been taking me to rallies, biking rallies and they have music there, as well. They play rock music and ones where they’re banging their heads like… I actually really enjoyed it. So, I like, so I can like rock music, even... Reggae, I like reggae which is Jamaican. I like hip-hop, Nigerian hip-hop music. And I like music from the ‘80s and the ‘90s. Yeah, so I&
\n\nrsquo;m very open-minded that way.\nJust a little message to people to say that we can stop the stigma around HIV. And… People need to feel safe. When people get diagnosed their biggest fear is their safety, their personal safety actually. Can I walk on the streets and tell everyone I’m HIV-positive without being attacked? And unfortunately in this world we’re living in people are still… You can still get attacked and that shouldn’t be happening in this day and age, especially with knowing that once you’re on medication, effective medication, you can’t pass it on. More people… We need to educate people more and that’s why I enjoy going to schools and talking to people, talking to the children in schools because I know they will take it home, tell their parents, their parents will tell their family members and that way it will spread and if we can start with the young ones it will be easier for them to take it in as adults. So that’s what I’d like to say and I’d like to advise mothers living with HIV to try and tell their children when they are young because when they become teenagers they’re dealing with all sorts of hormones and relationships and it’s just too much for you to break that news as a teenager, that Mum or Dad is HIV-positive. I think the earlier they know… I never hid my medication from my son and that was how I told him actually. He asked me: “What’s that medication?” and I said: “Oh, actually, you remember the programme we watched on telly about HIV?” ‘Cause we watched a programme on telly and that’s how I broke the news to him. He just laughed, he thought it was funny. And then after a few months he came back to me and said: “Oh, do I have it?” And I said: “No. I told you. I explained to you. You don’t have it.” And then, he’s been okay about it. Yeah, so we need to break the stigma so that’s why I’m just saying to people to please understand when someone living with HIV does not want to say they’re living with HIV it’s because they’re protecting themselves. And their relationships. And their family members. And they don’t want that stigma for their family members. So… Be kind to people living with HIV. Be supportive, just as you would support someone who has been diagnosed with cancer. That’s the same way you should support someone living
\n\nwith HIV as well. Yeah. Thank you.\n"},{"id":"121sdf","title":"Harun","href":"harun","mainImage":"harun.jpg","images":["photo-42.jpg","photo-44.jpg","photo-45.jpg","photo-57.jpg"],"audioFile":"/static/audio/harun.mp3","shortDescription":"Harun's photos","longStory":"\n
\nMy name is Harun. I’m living in London. I’m from Turkey originally. And I’m living with HIV since 2016. I am working as a volunteer coordinator at Positively UK at the moment. And that’s me in a nutshell.\n
\n\nHome means safety and somewhere you can run away from everything and hide yourself and feel safe, secure and relaxed, you know? And you can, you can put everything in your home without even, you know, you can you can... You can have… Whatever you face outside you can bring it back to your home and then you can think on it and I always think that I have boxes at home that I put different things in it. Like if it’s an anger moment you put, you just think and put in a box, just… Like a little storage of feelings, you know? So that place is home for me.\n
\n\nOf course I’m going to quote from my favourite artist Dido, but, you know, I can’t, I can’t feel like I found a place that I call home because I really never stick around quite enough, long enough to make it. I moved a lot. When I was living in Turkey I moved from one city to another so that was, you know, changing houses, changing your environment, changing works, changes your move too. So… And then I… Five years ago I moved to the UK. Again, another adventure, another place you are looking for to call home. And just yet settled in the UK. So I really can’t feel like I’m at home, so far. But I’m getting there. Let’s say I’m getting there.\n
\n\nIf you come to my home you would see lots of technology in my home. I won’t lie because I’m a big tech geek and my life turns around technology a lot. This is a good and bad thing, I won’t discuss this right now, but, I like to have this technology that making your life easy so my place would be quite a tech-geek place. Also, you would smell lots of food and, you know, cooking, because, well, I love food but who doesn’t though. I love cooking, I love food, so… I try to cook every day, almost every day and I really… Sometimes it’s a bit heavy but it just makes it home, you smell food, you know? I’m not talking about just sticky fish smell or something, you know, but, you know, kitchen… I also like the… I’m obsessed with those clean linen sprays or candles, you know, that feeling, ‘cause you know… You take a shower, you get into clean sheets and that smell is… I like to feel that all the time during the day so I use those sprays or candles a lot. My home place would look something like that… You would have lots of snacks and drinks, to be honest. Yeah, they’re, they’re always there around, in the kitchen, in the room, you know. You can always find a snack. That place would be home for me. And I won’t lie, I just… I love, I love shop- . I love, I did love shopping before pandemic, so my place was a huge kind of wardrobe because of shopping. But now I’m kind of trying to change my life in a different way and making my home much simpler place with less stuff, less clothes, less stuff around. Less furniture, you know? So that changed right now, so that’s what I would call my home if it was before.\n
\n\nBecause I always lived alone but I never thought home was a place, was a really sacred place that I want to be alone. I always loved to have people around. I always love to have guests in my home with me, so, but with HIV, the HIV diagnosis I realised that actually sometimes I really need my space. So, the meaning of home changed a lot because to run away from those sometimes negative behaviour you face during the daytime, you just run back to home and you just shut everyone and everything out. So, it’s kinda a little cave you can run and you can hide or you can get ready for a battle, you know? And all your weaknesses, all your strength is at home. It’s just… It’s why home got this meaning for me. But before it was a place to sleep, it was a place to, you know, spend time, invite people over, but now it’s a place to share things about myself with myself. So, yes, it changed a lot.\n
\n\nBecause I chose to be in the HIV-sector after my diagnosis it was my self-cure to myself. It was the only way to help myself, to be honest, by helping others. So I, I was lucky because I mostly faced positive reactions because many people were living with HIV or recently diagnosed and I helped many others that are struggling with their, you know, status, with their diagnosis. So, I mostly got positive reactions. And it was very empowering. But I must say, London makes a huge difference. I’m sure it wouldn’t be the same if I was in Turkey. In here I can openly or freely go in a corporate or into a school and share my status and people asking questions and that is a very positive thing ‘cause they ask and you reply and they learn something and you see their faces change as they… It changes like when you answer because they learn something new. Or you change their mind by sharing your own experience. There’s a huge positive experience, huge positive feedback for me. And they’re always supportive. They are always really nice to you. Even if they ask something that may sound rude but you know they’re asking because they don’t know it. But on the other hand, as a negative reaction. I can say, still, again, in London, it’s quite surprising in the UK, when in health sector there are doctors or health advisors or anyone working in the health sector actually, they don’t know much about HIV and my GP, when I first, after my diagnosis, when I went to get a flu jab, she asked me if I’m taking any regular medication, you know, and I shared my status and I said I’m on medication and she stepped back and she said: “There’s no such thing as undetectable.” And that nurse is working as a GP practitioner, in the middle of London and I was a bit challenging and interesting and I had to educate them in the moment. However, their reaction like putting double-gloves on is something negative you know? It’s kind of heartbreaking because you expect people working in the health sector’s, actually, you know, have that knowledge. But again, I believe, those peole were educated years ago and there wasn’t… HIV was different twenty years ago so I believe they were stuck in that moment and they didn’t have any refresher. But we are here now to refresh everyone’s memory and knowledge, to be honest. So that was the one negative experience that comes to my mind right now.\n
\n\nI will be really open and honest here, like no offence to anyone, but being gay is already difficult and I always struggled to find my place in the scene. I really struggled. I’m not good at the first interactions of going and introducing myself. And that’s always been a struggle in my life. And on top of that, HIV came. And it made it like, ultra, super-dooper difficult for me, because you’re always in your mind -. Of course, it’s not 100% like that right now but it was. It was taking a big part of my life before, because I always got worried. I can’t even meet or date a gay guy in normal times and I have to explain my HIV. When is a good time to share this? Or, is this guy serious with me? Should I really share, you know? That kind of thoughts obviously sometimes you feel like it’s too much hassle, too much work to do and you step back . And you prefer not to be in that environment, rather than be at home in your own environment. So, it is a bit challenging and in my, my… My friends all moved away but before I had a large group of friends here. Most of… Many of them are Turkish and it’s difficult to explain in the straight community that don’t have much information about HIV, so you have to get ready for a battle. Or, you have to get ready to fight to change their minds or answer their questions and… Sometimes it doesn’t happen. Sometimes you don’t want to get in there and do that. And their misconception, their lack of knowledge, you don’t, you don’t feel ready for it so of course I step back and, I shared I moved from London to Turkey, and it’s already difficult to keep a relationship from long-distance with your friends and when HIV happened I excluded myself from all my friend group thinking they would judge me, which cost me lots of friendships right now ‘cause none of my friends wanted to reconnect again. And that exclusion’s taking its toll right now. So, you know, yes, you exclude yourself. Sometimes on purpose, sometimes not on purpose but it happens, you know.\n
\n\nI don’t want to sound wrong at this point because living with HIV normally shouldn’t change anyone else’s life rather than taking a medication and going on healthy in your life. Because I chose to help myself with being in the community, the HIV-community, that’s why it changed my life. Because I started to volunteer. After four years, I ended up working in the sector, so of course my living situation changed a lot. Before then, I was just a gay guy and working in places, and just, I don’t know, ‘having a ball’ would you say? But now obviously changed a lot, like, it always takes, because I’m working in the sector it takes almost 75% of my life, so, but again it doesn’t have to be like that. Not everyone living with HIV does that. We know there are thousands of people living with HIV but they don’t even, you know, they don’t have to change their lives. But my life changed because it was my self-help to myself. And I’m happy to do so because it made me much stronger and, like, fighting alongside with so many strong characters it just taught me so many things and I’m still learning. And my scope, my perspective to other things also changed. That’s why when COVID came around I wasn’t as anxious as I expected to be. And actually, you know, I was ready to help others with their anxiety as well. Or in normal life, when, you know, someone annoys you at work or something happens with your friends, you, your reactions changes because in my daytime job I’m facing those reactions in different ways so it changed my point-of-view, to be honest. So, yes, it changed how I live, it changed how I approach some things.\n
\n\nI just don’t want to say, I just don’t want to say… It’s really wrong when you say HIV makes me: no. HIV is something that lives with you but how much space it takes is in your hands. I just found this. I like to be in control of that situation and when you’re in control that makes you happy. You know, because it’s not controlling you, you are controlling it. And also again just, I told you, helping others, seeing people’s faces change in a positive way. I’m still thinking about it when I’m talking. Just that moments, it makes me laugh, it makes me happy. I think that, also, you feel … You feel yourself useful, somehow. I think everybody loves this sense of ‘what am I doing?’ Rather than go to work, making money, eating, sleeping. What else am I doing? I actually feel like I’m doing something, you know. So, that’s why I think I look very happy when I’m talking about it.\n
\n\nThe first strike was friendships. I lost so many friends. Not because of HIV, but because I was far from them, and because this communication, this connection was lost. Because I wasn’t ready, I wasn’t reachable, I didn’t feel like I want to talk to anyone. And they thought that I don’t want to be friends anymore. And many of them didn’t want to reconnect. Or sometimes I felt like, because I came out second time with my HIV, and I felt like they would understand and then I tried to reach but I couldn’t get the reaction I expected. So, yeah, when it doesn’t happen it doesn’t happen so yes, in that way it was a loss. But, I also made many friends ‘cause of HIV. Not because of thanks to HIV. Like, I started to volunteer, I met new people. They are really caring, they are really, you know, that community sense, it, it sometimes feels very very valuable. Someone checking on you, just thinking that you’re having a bad day, you know. And I had this after my diagnosis obviously. But also, again, in the relationship-wise, you know there is I feel myself lucky, this new TV series ‘It’s A Sin’ came out telling the stories from the ‘80s, we are lucky we are not dead. So I feel extremely lucky. And because we had lots of knowledge and improved science, for that, and also in the community everyone is aware of that. So, when, when, for example, if I want to hook up with someone, one-night stand whatever, when I if I want to share it then I share it. Most of the time, let’s say 80% of the time, the reaction is: “Oh, okay cool. I’m on PREP anyway.” Or, we are using condoms anyway. But of course there are some times actually I saw a guy, I told him I was undetectable, HIV-positive undetectable, and he run away faster than Road Runner. So Road Runner is actually really slow next to that guy, you know. Picking up his stuff and leaving, so, those moments, again, like, it doesn’t affect me like it affected me before that’s, that affects your relationships, you know. It teaches you something. And also it makes you angry, like, how can you be so blind? In a pool of knowledge around us, you know. Surrounds us. It’s a fact I can’t posit to you or why... Or why you are reacting like that or running away from me like I am spread of COVID to people, you know. But it’s just the same happens? But my friendships mostly get, got stronger. My friends also giving me feedbacks in how much stronger I got, ‘cause, yeah. When you face those kind of negative things, you just kinda, making… HIV also helped me to make my relationships stronger too, ‘cause my friends even telling me, giving me feedback, saying: “You actually became really strong, you really changed. Your approach changed. You’re enjoying the little moments in life more, rather than worrying.” I’m still kind of a worrier though, but, you know, but not as much as I was before so they feel much closer to me because I’ve been more open, more honest with everyone. I’m just saying well, I’m just quite, what else I can keep hidden from people anyway, you know? So they feel much closer to me, if I’m more sincere to them. But yeah, I enjoy their feedback anyway. But yeah, this is how it affect it.\n
\n\nBecause I could never find my home I never felt like I belonged to somewhere, I didn’t have this sense of community much in my life. Like, if… Do you belong to a Turkish community? No. Do you belong to an LGBT community? Well I would say yes but many people label me as ‘not-gay-enough’. Or some people may say: “You are too gay.” You know, it’s just still, but… Do I want to? Yes, I want to. But there is always something. You move a lot, you have language barriers. You meet new people and you don’t understand what they’re talking about. After thirty years old, twenty-five years old, I think it’s a bit difficult to be a part of the community. Until, obviously I got diagnosed with HIV because then you see there are some communities, they are some conditions that actually doesn’t listen, doesn’t care age, doesn’t care sex, doesn’t care who you are,, what you do, what you eat, you know? It just doesn’t matter. So, and because everyone kind of walked through the same path, different experience, everyone knows or guess what you can think, what you are going through. So, it was a, it was an important moment for me. Like, after my diagnosis for six months I shut down. And then I reached out to my now really good best friend Andy and ask him to participate in Pride with them. And then I went there and that was the first time we met with Andy, actually, and he invited me and we went there and I saw all of the people living with HIV and having a totally normal life. I said: “Oh my god! This is what community, you know, should make you feel. Like, I think I belong here,” you say. That’s why, right now, when someone is recently diagnosed with HIV we recommend them to join those workshops to meet other people because when you are lonely you lost this, you lose that sense. And that, that I feel like this must be a community. This must be something that I haven’t felt much. Because my friends were mostly straight so I didn’t belong to that community as only gay guy you were always on the spotlight and not in always good way, and then, gay community I told you. That nation-wide, I’m an immigrant here, you know Brexit happened, how they are, you know, looking at you in certain areas, I don’t know. Let’s don’t go in there, but… Again, how, where can I feel myself at home? Like, where can I feel myself belong to a community? So, yes that, I still can’t give you the answer. ‘This is a community or not.’ But it must be the community, like, I can feel I belong to that. Even if I couldn’t find my home yet! I just kind of feel like I belong to somewhere. And because of my achievements and positive feedback and achievements and I see development for years and when you belong to a community I feel like you give something back and I feel like I’m giving something back. As much as I get from it. So I think this must be community, right? Yeah. Must be. Should be. But we’ll see. We’ll see.\n
\n\nFor my personal experiences, lived experiences, kind of taught me that nowhere can be 100% safe. So, like, I will say life kind of taught me to protect myself even if there is nothing to protect of myself. To put my guards up all the time, just in case. So this is something I can’t 100% leave behind. So, I can’t say I’m feeling 100% safe in any environment. Even with your most-trusted friends... it doesn’t mean you don’t trust your friends. It feels like anything can go wrong in any minute and again I know this can happen to anyone at any time but for me, because of those guards always up, you know, it’s just sometimes it’s really difficult to let it go. And feeling safe is kind of the feeling I miss, actually. I think if I find my home or the people who makes a home, makes it home, I think that feeling will, will come back. The safe feeling will come back. But right now, too many changes, too many moves, so many peoples just left, went away. So, just new people I’m meeting every day that’s why… Everything is changing right now, you know. That’s why guards are still up but I hope, I really hope, and I really try, that I’m going to feel 100% safe at some point maybe in my home. In the community, maybe, but… Yes. It’s not the community, it’s not the definition of home, it’s the definition of me. And my experiences.\n
\n\nI love to be cheerful or happy, you know? If I had a chance I would be a party-girl. Like, this, this is how I would describe myself. But because of keeping, because of those safety-home feelings I always try to keep myself in a place where everything is balanced. But still if you ask many people... I would say very sarcastic, sometimes can be too much. Fun, you know… Loves to eat and loves to drink and please don’t let me mix drinks up. And passionate, I would say. If I want to do something I really go and do it, if you know what I mean. Again, I always go. But that how I would describe myself. But also I would say like, yes, I am one of those people that people come to and ask advice when they wanna buy new tech and gadget, or something. I kind of secretly happy about it, but… If you need anything, love, you always come to me, you know? You need a new recording device, or something? Just ask me. ‘Cause even if I don’t know, just, you know… Looking for it, researching makes me happy about tech.\n
\n\nYou know how many devices looking at, listening to you? Like 1, 2, 3, 4. It’s just they’re all listening to you. So this is me, this is me, I’m very interested in it… But yeah, it’s just… I can be very emotional, easily. Like, just play me a song and I can find me something to cry about it. Well, you know, it’s just, yeah. I can go from high to low, low to high, so I can control that because I love to feel my feelings. I love to know my emotions and live in it. That is that. That is me. Like some food, drink, emotions? Passion? Yeah I can get everything you want.\n
\n\nThe one thing I would add, like, what I learnt is, I know I’m just not that experienced maybe, not that old with lots of life experiences, but I think I been through a lot so I feel safe enough to say that… There’s… There are really, really dark times but unfortunately sometimes you have to find those times yourself. But, there are little sunshines, you know, just coming through somewhere. If you can just kinda make it to that point, everything can get a little bit easier, even in the most difficult situations. And it’s really interesting when it comes from me because I’m mostly, you know, feel very desperate when I’m having a difficulty at the moment, but, and at this point I learned the value of the friendships. It doesn’t mean that you have to have a family. It’s not the family you were born into, it’s the family you make along the way. And that family you make a long the way is really worth the friendships and those people who actually helps you to find this little sunlight, sunshine, in the darkness and holds your hand and pulls you up that way. They don’t necessarily carry you they just show you the way. Look there is a light. Having those one or two people in your life is really valuable. It, it worth a thousand people. You know, you don’t have to have lots of friends. I would love to have lots of friends. I lost lots of friends. But now, I value a lot those one or two or three, I dunno, people in your life, you know. They are very valuable. The point is just making the right choices when you add someone in your life. You know? It may change everything. So, yeah, that would be one thing. So don’t think you are alone. ‘Cause you know… You never know what’s going to happen, who’s going to come into your life and make it valuable for you. Yeah. That’s one experience I can share.\n
\n"},{"id":"sdfpol1","title":"Jide","href":"jide","mainImage":"jide.jpg","images":["photo-6.jpg","photo-19.jpg","photo-21.jpg","photo-22.jpg","photo-23.jpg"],"audioFile":"/static/audio/jide.mp3","shortDescription":"Jide's photos","longStory":"\n\nI’m Reverend Jide Macaulay. I’m the founder of House of Rainbow, an organisation that supports black lesbian, gay, bisexual, transgender and queer people of African/Caribbean descent. I’m also a priest in the Church of England and I’m also someone living with HIV for the past eighteen years. So, a lot of my work also includes supporting black men who have sex with men, especially gay, bisexual and trans men living with HIV. This is an area of specialist support that I work on.\n
\n\nYeah, I mean personally I qualified as a lawyer and I, you know, worked for the Crown Prosecution Services for about twelve years of my life, then I went into work for the private sector for Price, Waterhouse & Coopers and I gave all of that up, you know, to go study theology and become a priest, which is really what I always wanted to do. And I’m also a poet, I have written a book of poetry and I still write and I still perform. I have won several awards for my work, you know, basically as an activist. I’m currently nominated for a Top Ten Outstanding Contribution to LGBT Life by the British LGBT Awards, so. I’m very proud of that. I also do a lot of voluntary work. I currently, in voluntary capacity, am the chairperson for the International Network of Religious Leaders Living with HIV, in Europe, and I’m also the vice-chair for One Voice Network, which is an umbrella organisation for black-led LGBT organisations in England because we want our voices to be heard, that’s why it’s called One Voice. I’ve also been involved… I’m also a trustee with Kaleidoscope Trusts which is an advocacy lobbying organisation that is thinking to change the laws against homosexuality in the Commonwealth, and actually two more voluntary works that I’m so proud of… I’m also what it is called a champion for an organisation called Africa Safeguarding Children charity. I love that charity a lot because they focus on children’s well-being and, of course, one more - and I’m sure it’s not the last, I’ll remember another one later – is Mildmay Hospital in Central London which focuses on HIV-care and treatment, so, those are my areas of work, yeah.\n
\n\nI think in perspective, my voluntary work is also my passion so when I’m in the voluntary space I’m pretty happy doing what I’m doing and if, you know, the outcome is always joyful and celebratory. I mean, I’m not saying that some of them are not difficult, yes, it can be work. I mean a good example is the Network of Religious Leaders Living with HIV. It’s still a challenge in Europe that religious leaders living with HIV don’t show up, so… I’m working with people in Sweden and in other places that… I don’t know that many in the UK so we’ll see how it goes, yeah. Maybe we’ll press and get people to be more involved and… It doesn’t really have to be religious leaders living with HIV they could be, you know, allies as well, which I think is important. But I think that visibility of religious leaders with HIV is, is, it breaks down barriers. That would be great. I don’t know any Black African or Black Caribbean priest who is HIV-positive. I don’t know any. So, today in 2021 I think I’m standing alone and standing graciously and with great humility. So… I don’t know anyone. I’m really really trying to think. I mean, if anyone is listening to this podcast and knows somebody please make an introduction, ‘cause we got work to do.\n
\n\nWhen I think of home… Wow. For me as a Black person ‘home’ means so many things. Well, actually, home means so many things to me as a Black African, a Nigerian, and also a Black British. I think as a British, I mean, my home is my castle, so they say, and it is true. I am very very particular around my home. I like my home to be welcoming and I’m also someone that loves to welcome people in my home. I mean, I give you a quick example. For example, you know, I mean obviously I am living in a rented home at the moment so if I have my own personal home it would have smaller settees. One of these chairs would be a seater-bed because I am always preparing for a sleepover or to be able to make sure that someone who stays is comfortable. Home is where I find comfort, is where I get away from everything. And as a Nigerian, as an African, you know, even though I was born and now live in England, Nigeria is still home, where I always think about going home to Nigeria. But of course, you know, I’ve had a very different journey in life, even though I recognise both England and Nigeria as my home I still feel excluded and ostracised from my homeland in Nigeria, because of the homophobic laws and because of the fear of even stigmatising me with my HIV status, the fact that I won’t get the higher standard of care in in the health service in Nigeria does worry me. It would have worried me regardless of the fact that I am living with HIV, it really doesn’t matter, every other illnesses or health incidents, you know, could be just as traumatic, let alone someone living with HIV that you have to be in constant communication or relationship with the medical team.\n
\n\nSo, home for me is sanctuary where you find comfort. As a person of faith, as a Christian, I also see the Church as my home. But it’s rather unfortunate that I now feel uncomfortable to call the Church my home, because I have experienced homophobia by er… I have experienced homophobia, xenophobia, racism, HIV stigmatisation within the Church setting. I have experienced rejection. I have been kicked out, you know, at Church, so I don’t know if I can be comfortable to call it home. But then, of course, you know, when I then come to my own personal home… This is where I find joy, this is where I find a lot of peace. I don’t have any restrictions in my home. I actually do feel free at home. You know, the other thing again is in all honesty I’m actually a naturist so when I’m at home I just feel free to be myself, you know, without the inhibition of clothing and things like that and make sure that the temperature is right in my home. When the bill comes we pay the bill because I know that I felt comfortable. And the reality is, you know, that before the pandemic I travelled a lot and when I meet with people and other colleagues on the journey they’re always talking about them missing home but I’ve never actually missed home like other people miss home. When I travel, everywhere I go, I feel at home. I make home in the places that I go. I’m not a big fan of hotels so I try to look for homes, like, you know, the AirBnB is a good example, for example, where you find personal homes that are for hire. During my stay I like to stay in communities. I like to stay in retreat centre where it feels like home. I like to stay in other people’s home because I like to connect with those communities and of course when I travel as well I’m not a big fan of my British food-life fish and chips so I eat local food. As long as they’re edible and they’re delicious, I’m willing to try. And actually it came to my mind, it was Ethiopia, I’ve tried Ethiopian food, I’ve tried Ugandan food, yeah… Some foods are bland and some are great but it is what it is. I mean, not to try would defeat the entire purpose. It’s always good to try. Yeah, I mean, I think, when it comes to food, my goodness me, I enjoyed the food in Côte d’Ivoire. I enjoy the food in Côte d’Ivoire so I found home in Côte d’Ivoire as well. But I ate in Liberia and felt sick, so, well, goodness me, I had food-poisoning in Liberia, so, which wasn’t great. But, you know, coming to the question of home, you know, even though I’ve travelled extensively, I still like, you know, the sense of home I get when I travel. So I, actually, I don’t know, I’d like to know there are other people but I feel that when I leave my home in London and I travel everywhere I don’t actually look back to say: “I’m missing my home in London,” no. When I’m on that journey, I’m home. But nonetheless, the comfort of my home is very very important, so that I feel comfortable and not vulnerable in my own space.\n
\n\nTo make the home-away-from-home feel at home, I think it’s just me being there, me in my person being there and, you know. One of the last trips I had before the lockdown, I went to Portugal for the first time and I remember walking around and felt totally at home. It’s a different culture, a different language, but I felt at home, you know? I found a restaurant that sells local food and, you know, I enjoyed it and I just made it my own and, you know, I’m always waving to strangers and saying hello like I’m the mayor of the town, so I think that for me it’s also the people and a good example is when I visited Lesotho, Botswana and South Africa just to name a few, where I’ve already got to know people. So, it meant for me in that particular scenario that I make home. Actually a good example – and I don’t want to sound like I’m so arrogant about this – it was Eswatini. Before going to Eswatini I’d already made friends in Eswatini and I said: “Look, I’m actually coming to your country because I want to visit it for a few days, you know, can I stay by your place?” And I stayed in a friend’s home. They were actually students, which makes it even more fun. So they had residence on the campus and they also had a home in, like a house in Este, so I stayed in their home and it was very very meagre, very simple, basic and that was okay, so. I’m not a big fan of luxury, super-star hotels… Maybe if I was in a very dangerous country that would have been necessary but when I travel I really try and blend with local people, I try to do things the local way and I think for me the advantage – and this is actually a privilege as a black person – around Africa you will not stand out until you speak, seriously.\n
\n\nBut if you stay in hotels it’s very quick for them to work out that you’re a foreigner. The other thing that makes me feel comfortable and maybe at home in places, I also jump on public transports. When I am abroad I actually do not have the innocence of fear. I probably have more fear in London, you know, than when I’m abroad because I mean, we take care of myself. I’m not saying I have no experience of any kind of danger or trauma abroad, which I’m just grateful to God for that, but I try to do my best to feel at home so I don’t feel like an outsider. And I do hang around with local people, I really do. Just as I’m talking I’m just remembering many places where, I mean, after a conference I’ll hang out with local people, we probably walk down the road to go to the local food place, you know, the street food place to go and get dinner, you know. Rather than being served in a five-star or three-star hotel, I mean it’s like, you know, and yeah… I do make, I do love to make communities, be part of communities when I’m outside of my home.\n
\n\nMy HIV-diagnosis really changed the perceptive of home. I think that I became, you know, I became more sensitive about who came to my home. I… I was very worried and concerned… I mean that was a time where I had serious personal internalised stigmatisation. So, I was very worried to be quite honest. I mean, at the time I wouldn’t visit people, I wouldn’t let anyone visit me. I kind of isolated myself but that didn’t last for long because, again, my home also became private, sacred, because, um, yeah… I mean, I did remember in the early days of my treatment that I used to hide my medication. I don’t anymore, so, you know, if you walk into my bathroom and you find my medication, you got questions: let’s talk. And I think that, you know, my home, I think it took me, because I was on my journey with HIV, it took me about six years before I really got comfortable, you know, talking about living with HIV. In very rare occasions, I will only share my HIV-status with people that I’m having a sexual relationship with and I will share it with them before anything happens because sometimes it’s maybe I don’t really fancy them anymore I just want to get rid of them or to be quite honest it’s never actually to get them to go, because most of them are quite reasonable. But of course, I mean, if I really really like you then I will tell you because I just want you to be informed. And even at that stage was the time before this amazing ‘undetectable equals untransmittable’ because then we don’t have that information, so for people like myself that have been living with HIV for eighteen years, you know, probably in the first two years of our medication we were already undetectable but the scientists haven’t come to that conclusion, they haven’t done that research up to that point, so we still carried a lot of stigma, so...\n
\n\nMy home, you know, was a place of safety. Because when I’m at home then I can be all that I am, including my HIV-status. I don’t have to apologise to myself when I look at myself in the mirror. And I don’t have to explain to myself. But, outside of home, when you’re engaging with people or interacting or even when you hear a conversation that is about HIV stigmatisation you don’t get involved with it, because you might not be able to justify why you’re so defensive. I don’t think I got to that point where I was either bold or courageous to address those issues, but that has all changed now. You dare not say anything about people living with HIV in a rude way or a stigmatising way. I will challenge you right there on the spot and I’ll make a big deal.\n
\n\nPositive reactions… Goodness me, there are so many over the years. Do you know… I mean, the very first one was on the very same day that I was diagnosed with HIV. It was the second call I made. The first call… The second call I made to a friend, the first call was not a good one. The second call was because I just needed to tell somebody and I was on the phone for less than five minutes when I told my friend that I had an HIV-positive result and they came over to my home and picked me up and took me back to their own home. They had a one-bedroom flat as well, so, I mean, they allowed to me stay in the room… Actually, around the whole flat for me and they made me a meal but I’d lost my appetite because I was just in the clouds and thinking about what had just happened. They made me very comfortable. That to me is a positive outcome, I think it’s one of those moments that actually enabled me to, you know, to continue to find strength, so… But I think that, you know, more so, more positive outcome is the more I share my story the more people get in touch with me to say they need support and that is very encouraging, I find that very supportive. And you know, you know, some of the relationships that I’ve had since I’ve been HIV-positive has also been positive because I’ve never felt discriminated against.\n
\n\nI think another very clear positive outcome is that, I’ve been positive for over eighteen years now and I did disclose publicly and as someone who is a priest in public office who is also a very popular gay-rights activist I felt a responsibility for me to be more visible around my HIV-status. So it was actually World AIDS Day of 2018 that I decided to make a post on my social media platform: Instagram, Facebook, I believe on Twitter, you know, that I posted quite detailed message about living with HIV. And I remember when I posted it I went to bed thinking that the whole ground will open up the next day and I will be swallowed up but for me that action that I took, that courage, bravery, bravado, everything that you can think that I did, I thought this was going to kill me because I haven’t shared my HIV-status personally with my family, you know, personally with the Church, personally with other people but I felt that in that moment I needed to put this on the record. And I remember waking up the next day and just reading all the comments. The comments were 100% positive. Now, what got me thinking is that every time I make a post or there is a post about me being gay and a Christian, I get hate mails, I get, you know, private messages of condemnation that I’m going to hell, but I think I can safely say that when I shared my HIV-status I did not get any sort of hate messages. They were 100% messages of compassion and ‘well done Jide, congratulations, this will mean a lot to other people.’ And I think that that is increasinly positive, but I’m still bothered, I’m still concerned, that my sexuality, you know, gets more condemnation than my HIV-status, so… I mean, if I was to flip the coin is that for those that have said ‘being HIV-positive is a punishment for being gay,’ I think that the further I got 100% compassion actually reversed that. So, people are quite ready and willing to condemn me for who I am but have compassion, you know, with me living with a virus.\n
\n\nI mean I’ve seen it a lot with the work that I do. I’ve had a lot of gay men who are HIV-positive that I support who tells me that their family are aware that they’re HIV-positive but they don’t know if they can deal with the fact that they’re gay. And you know, so, I mean gay people are HIV-positive like other people and people around them know that they’re HIV-positive… I think that the problem is always when families know that you’re gay and then you’re HIV-positive. I think the gay person who becomes HIV-positive is now worried that: ‘Oh my god, my family hate me for being gay and now I’m HIV-positive is this just going to get worse because they’re going to realise that ‘know we know that God is punishing you,’ but with the reverse, where families know that you’re HIV-positive and they don’t know that you’re gay you still have, you know, some journey to make with them without the condemnation and… It is interesting. I think that’s an area that I will probably look into and maybe talk a little bit more about, about the hypocritical nature of it and I think that, yes. Even for gay people, for myself as well as a gay man, you know, I think I contracted the HIV virus about eight or nine years after I came out as gay and even at the time that I was infected with HIV I also in that moment internalised the fact that: ‘okay, this is God’s punishment.’ But, as a queer Christian theologian who is always having questions and who I have a very good relationship with God and I prayed about this and I studied more, I, you know… I had mentors who were HIV-positive and priests long before me so they were already in the sector so they know what they’re doing, I was within them, I was within their circle and I learnt a lot more and that’s how I became, you know, the chairperson for the Network of Religious Leaders Living with HIV. Because of the courage to speak out and speak truth about what is life, you know, yeah… I think that knowledge is definitely important, you know, as we talk about HIV and sexual health. In the absence of that knowledge we will make judgements and we will make mistakes.\n
\n\nI think the negative experiences were… No, it’s okay just, let me explain this – [MG: No-one is peeing in the background?] No, we’ve got these fridges installed, so… You know like if you have like a fridge that stands on its own? You know, it’s built so that the water will drain automatically. This one is actually built behind so I believe that all the fridges in this building goes all the way up so when all of them are shedding the water, it goes behind in some parts. And I think that the builders should have made it like insulate so that it’s less noisy. I mean I am actually used to it but every time I have people here, so: ‘what’s that?’ It’s getting, it’s getting flooded. Yeah, um. The negativity that I have experienced with HIV has come from unlikely sources and for me it’s always unfortunate that the two incidences that I have experienced is actually from the Church. When a priest was telling me that: “Oh, you’re HIV-positive, we don’t know how to handle that here and, you know, people might not want to take communion from you.” I think that my reaction was, you know, to educate them, instantly and I think I remember, you know, purchasing a book about ‘Who Cares About HIV’. I said: “Read this book.” But I mean, I mean, the person involved I didn’t think read the book because they didn’t come back to discuss it. I think we just left it there. The second incident was actually at a conference when, you know, there was this conversation about gay people who are HIV-positive and how the Church has treated them and there was a Christian pastor who was in the audience who stood up to ask a question: “Where are the gays that are HIV-positive? They should stand up and let us see them.” And I really wanted to stand up to respond but my colleague pinned me down and said: “You know, Jide, this is not the time.” And I think that it’s rather unfortunate because the language that you put out there to condemn people who are HIV is going to keep them away from you. And I think that when you put a positive message out about the care and understanding and the offer of pastoral support then people will come to you. Not when you put out bad energy, people are not going to come to you. You know, the other negative reaction actually happened here in London, you know… I’d been to an event and again, you know, this conversation, this was all before lockdown… I went to an event, you know, with the gay community with celebrating and there was a cute guy there and we got chatting and we exchanged phone numbers and then, I think about a few days later, I was in town and I was chatting with him and then I think we kinda agreed that we would meet up, so he already gave me his address that I should travel to this location blah blah blah to meet up with him and, I think, before I went further I said to him: “I’m HIV-positive, you know, would that be okay?” and he immediately cancelled, you know, our meet-up. And I think in that moment, I think I took it graciously. What concerned me was that this person also works for the National Health Service as a nurse and it really bothered me a lot. But I mean, I didn’t do anything about it because one, I didn’t want to cost him his job, it was a personal situation. I was hoping we would go on a date, and that happened and I felt rejected. I didn’t feel totally angry but if that situation had been that he was my nurse treating me then I would make a big deal out of it.\n
\n\nActually, now that I’ve shared a personal circumstance let me also share a professional circumstance. … In which I experienced HIV stigmatisation. I think it was December 2018. I had a terrible toothache and I needed to have it addressed and taken out and, you know, obviously my dentists were too busy and they kept on postponing it and I was getting increasingly in pain. Now, King’s College Hospital, is it? King’s College.. Yeah, King’s College in Denmark Hill – have I got that right? - they have an emergency walk-in clinic. So, you have to go there very early in the morning to queue up. So I was there pretty early, queued up and then I think I was the fourth person on the queue. I got in, and you know, and got enrolled and, you know, I was met, obviously it took me a long time before I could get treatment, I was there at 4am I think they opened at 6 o’clock or so. I didn’t get to the treatment point until about 11 o’clock, so I was really in pain and this was after I, you know, I really made a big deal about I need to be seen but what I realised is that, you know, they actually gave me an appointment for another day and I said: “No, this is an emergency that’s why I came here.” So when they went to treat me they said I asked too many questions because they were already notified on my form that I was HIV-positive so they wanted to speak to my HIV-consultant, they needed some more reports. I said: “I’m here for my toothache and, you know, my HIV-positive, I’m undetectable,” I was telling them all of this. They wanted to know what is my viral load, what’s my CD4 count, and they need some report from my consultant before they can carry on. And I really really made a big deal. I think there was one of the dentists in the practice who intervened and they actually, you know, put me on the list of people to be treated. So when I go into the treatment room I was really really surprised that the dentist and the nurse that were going to do the operation. We were talking about my HIV-status quite openly within his presence and the dentist must have said “He’s HIV-positive” about a dozen times within the space of a few seconds and I was pretty angry and nervous, you know, and then they came, you know, to do the extraction almost as if they were going to treat Ebola. And this is London and I felt so humiliated in that moment. I did report this, you know, to the Southwark Health Watch. I don’t know what came out of it, but I have talked about it many times, so I’m sure somebody knows this story. So those are the times and I think, you know, when I think about the HIV negative situation within the framework of the health service and within the Church, these are the two places I least expect any form of HIV stigmatisation, it is just… It is not the right place. So if the communities and societies in my opinion can be more compassionate, why not the professionals? I mean, I still advocate that NHS staff at every level should be educated around HIV and also every priest-in-training should be educated about HIV. I, particularly priests, well, all of them, but I still feel that no priests in this century will leave a Church and not have a member in their parish – I’m not saying in their congregation, even in their congregation, that is not HIV-positive. There are 40 million people living with HIV around the world and there is no corner of the world that is exempted. Even if you live in a village or in a county with ten people, there’s, there’s a chance that somebody is HIV-positive, neighbour. So let’s not live in a world where we are continuously ignorant.\n
\n\nI felt excluded from places that could have been home or that are considered home and that is also, it is also places where, you know, peer support takes place. When I was diagnosed with HIV there were rarely or even any peer support communities for black, gay men. Even when I was diagnosed with HIV I still felt like I was the only black, gay man who was HIV-positive and when you go to services you don’t find other gay men because I’m thinking: ‘Goodness me, what’s going on?’ But I think that, you know, it took, this took me six years because, you know, I was also on different journeys, you know, I was pursuing my career, you know, as a Christian minister. I mean my HIV-status, excuse me, my HIV-status triggered so many things for me, you know, it was also the time I went into training for ministry then I went back to Nigeria to start the House of Rainbow Ministry and so I was literally train myself in a very different direction rather than, you know, focus on being HIV-positive and, I don’t know, I think that because I went on to pursue my career, you know, I think in a way it did not allow me to get to a place where I will have an increase mental health crisis because I was focusing on career, I was focusing on activism, I didn’t have time to even take care of myself. And I remember in those three years between, actually up to six years I would say, between 2003 and 2009. You understand me, I really lost weight. Even though at some point I was on medication, my diet changed because I couldn’t keep my food down, so quite often I’d be sick, sometimes I’d have diarrhoea. I literally had to change my diet altogether. I think there was a time that I was probably a vegan, because I couldn’t eat meat, I couldn’t eat fish, I couldn’t eat chilli, you know, everything, nothing would agree with me but I just knew ‘I’m still alive.’ And sometimes when I look at pictures in those times I really do look sick, but I was very courageous, just to carry on with life, as if nothing else was happening.\n
\n\nI think when I, I mean after my work in Nigeria changed because, I mean, in Nigeria we were called the ‘gay church’, so when we were exposed the government came after us, the communities came after us, so I was advised to leave the country. So, when I returned to England, you know, I was very depressed for about almost two years and it was in 20- 2009 that I now discovered a group, a peer support group for newly-diagnosed with HIV. I think the programme went on for about six weeks with the same cohort of people. That was the first time that I got the support that I needed. And even in that space I still didn’t feel included because there weren’t many black people in that space. I think there were two of us and I can’t remember how many… Maybe a dozen or more. But again – and when I think a lot more about the activities that I’m creating within the House of Rainbow communities – I’m creating space for black, men who have sex with men, who are HIV-positive. So, I mean, this pack here – I’m just referring to this, is a programme that’s taking place tomorrow. So, it’s an outdoor programme because of COVID restriction, where you know up to about ten, you know, black, self-identified gay, bisexual, trans men living with HIV will come together, you know, for peer support and of course in this bag I’ve got several things, you know, it’s a goody-bag so I’ve got ex-folio masks, I’ve got you know peels, you know, all the information, sanitiser, face mask, you know, all of those things, you know, that’s to say ‘well done guys for what you’re doing’. And I think for me it’s really important. I mean, it’s also creating those spaces that is applicable to culture and traditionally appropriateness. You know, I think the other spaces are great but as a black person you will feel lost in a space where it’s occupied by white people. And it’s not to say your services are irrelevant but they just don’t speak, you know, confidently and that is why a lot of black people don’t return back to services, but when you create something like we’re creating the House of Rainbow it’s very holistic, you know, so… Yep. And I’m very proud of that because it’s a game-changer in itself.\n
\n\nHIV affected the majority of close relationships in my life and I’m not talking with lovers, I’m talking friends and family, yes. And I’m also talking, maybe with… Actually I mean there was a friend of mine, very good friend of mine, we’ve been friends for over two decades now, you know, and the way I came out to him about my HIV-status was very funny, yeah. I had been probably HIV-positive for… When did I come out to him? I’d been HIV-positive, goodness me… Probably ten years, yeah. More than ten years, yeah before I told him. And he’s always been my friend but I’d just never told him. And I think the question that I asked him is, you know: “What is the Church doing about people living with HIV?” And he just asked the question: “Are you HIV-positive?” He didn’t give me the answer to the question that I’d asked him. Then I said: “Yes.” His response was one of the best response and I wish I’d a done it ten years earlier, you know. He just reached out and hugged me and he goes: “This is not a conversation. There’s no conversation to be had.” And he still loved me just the way he did the first time he got to know me and I think that to me is very important. But it did affect other relationships, yes. The relationship with my own family – and let me quantify that – my DNA family, I did not discuss my HIV-status with anyone in my family, but I believe now they know because I put it all on social media and it didn’t bother me because… Part of the reason I kept it quiet and private for so long is because I was concerned for them, but because they were also very homophobic towards me, I say: “This is the people I’m trying to protect? They don’t even have any care for me.” So I went ahead and , you know, shared my HIV-status to those who it is important to. If it is important to my family then we can have that conversation later, but we still haven’t had that conversation and it’s because we don’t have a relationship. Who else would it have impacted? I mean, when I came out with my HIV-status I was not in any formal employment elsewhere, I already was working for myself and I was creating House of Rainbow so I didn’t have to, you know, come out to an employee or my employers, anything like that so I had a very clear, you know, stream of water to navigate without any more challenges. Erm, yeah, who else? I mean, my family of choice, again I, like I’ve said DNA family, family of choice, the people who have given me family, you know, I think I had conversations with them, not in an early stage. I think I had conversations with them either around about the time when I put it on social media or shortly before then. There was not a single backlash at all. They all embraced me and continued to love me to this day. So… I think to those who matters it makes no difference. If it’s a problem for somebody they probably just avoid me. But I’m not going anywhere so now I continue to do the work that I do, to continue to support others, yeah… I mean, what I really really enjoy now is when people hear my story and then contact me and through my work at House of Rainbow and they say: “Jide, I’m HIV-positive, what do I do, you know? How do I navigate life?”\n
\n\nAnd I have many positive things to say to people, you know? HIV-positive does not change anything at all. It doesn’t. And you don’t have to disclose. But I’m also mindful that people live in hostile countries, they live in hostile environments, even their own home could be hostile whether it be here in England or anywhere in the world. But the reality, like I was saying earlier on is that, for those that are gay being HIV-positive just makes things more complicated with their sexuality, especially if they’re not being accepted at home or they live in countries where it’s still being criminalised. So I can understand that but HIV itself is not a problem, it’s the society, you know, that is full of stigma, shame, denial and discrimination that really makes it a big issue. Disclosure is not compulsory. But I would say, of course, I mean if you’re falling in love again with someone and you’re going to have sex with them it is obligatory that you actually have that conversation with them. If they run from you they’re never interested, they don’t love you. They’re not capable. So don’t feel judged, don’t feel pity, just be grateful that they ain’t hanging around. I mean, the other thing again is that, I think that, you know, by virtue of me being open about my HIV-status then I’ve also helped a lot of people by being open, you know, reduce or change their thoughts of suicide, because there’s a lot of suicidal thoughts when people are HIV-positive, “Oh, Jide, I want to kill myself,” I’m not telling them that, you know, your life is, the only thing that’s changed is your HIV-status, nothing else has changed. You can still be that medical doctor you want to be, you can still be a pilot, you can still have all those jobs that you’re dreaming of. Don’t stop, you know. Don’t let this get you down. The people who are going to stigmatise you truly and honestly really don’t care, they don’t care for you. HIV is just an excuse they are going to use, to continue the irrelevance in your life, so don’t let that stop you. The other thing, again, is that on a logical level I always say to people that, you know, being HIV-positive is not a punishment for your sexuality. It’s not a punishment because you’re sexuality active. It’s not, you know.\n
\n\nI’ve always shared this example of, let’s just assume, two girls and they’re twins and, well: two girls. I just say two girls and both of them are sexually active and – this is not anything against women, but – let me just say two people, two people that are sexually active, maybe it’s from the same family, one got pregnant and the other one got HIV and the reason I always use female is because of the pregnancy, and… So, one got pregnant and one got HIV. I’m sure in any family in anywhere in the world those two young people would definitely have a lot of answering to do. Somebody’s going to do all the talking, especially the mother or the father, or the elders in the community are going to say: “You’re wrong for having sex, now you’re pregnant, what are you going to do with a baby, blah blah blah?” but the reality of it is that in nine months of that pregnancy a child is going to be born and they are going to celebrate that they have a grandchild. Now how about the person who is HIV-positive? How are we treating them? The fact that is that, you know, whatever you do negatively it’s going to impact on their mental health. They’re probably going to suffer post-traumatic, you know, trauma, you know… All of those things need to be avoided because they’re both sexually active and even the one who’s pregnant could have been HIV-positive, the one who’s HIV-positive could have been pregnant but I think that the reality is that we have to have a sensitive way of approaching these matters. And for me, as someone who’s HIV-positive, I would rather that, you know, we have a much more sensible conversation and approach about how we deal with all these matters because sexual activities have consequences whether it be pregnancies or STIs. If you’re sexually active something’s going to happen. Unless you are… You know, you have all the knowledge or you’re taking precautions and, you know, it’s not like being OCD about it, you know, you can’t be OCD around sex, you know. It’s either you’re in it for the fun or you’re clinical about it. You can’t be over-clinical about sex you’re just like: “I’m going to clean everything before I dive into anything.” It doesn’t work like that. And I think it’s really about the knowledge and the information that really really matters. And talking about knowledge and information, I have done a lot of work around, you know, information about sexual health and I always talk about three categories of people that we should always look out for… Okay. The first category of people includes me: people who are HIV-positive and who are on their medication and are, you know, on effective medication.\n
\n\nSo we really just need to take our drugs. I would say to people who are HIV-positive on their medication that: “Every time that you take your tablets, don’t stigmatise yourself, in fact: praise yourself. Praise yourself and say I’m a champion, because I’m saving the world.” Every time you take a tablet you are saving the world because you are not going to pass HIV onto somebody else. It is impossible. Every time you take your tablet it’s not really about you, it’s about other people that you are saving because whoever you are having sex with, man or woman, you are not going to pass on the virus. So let’s get that right, okay? Now, of course, the second group of people are those who also have information, okay? They have information about sexual health, HIV prevention, STI prevention, so they, they have information about how to use condoms, you know, how to have safer sex and maybe they’ve also considered PREP, and they’re also on PREP, PREP meaning ‘pre-exposure prophylaxis’ so and they carry on about their lives. So those group of people will not be threatened by those who are HIV-positive because if you are using condom you cannot get HIV from the person who’s HIV-positive and if you’re not having sex with condom, even if you’re not on PREP, with somebody who is HIV-positive and on effective medication you cannot get HIV. Now, if you’re on PREP because you’re not sure about your sexual partner’s STI or HIV-status, you are also helping prevent the spread of HIV or the possibility of catching HIV. Kudos on you.\n
\n\nSo these are two groups of people that are absolute champions. Now, the third group are those who are completely untested, don’t want to have this conversation and totally ignorant and is ready to stigmatise anybody and who ask ridiculous questions like ‘are you clean?’ and ‘are you safe?’. These are the ones that really annoy me. Now, this group of people are the most dangerous people in any way you can think about it because they don’t have the knowledge, they’ve not tested, you know, and they ask silly questions and, you know, they avoid having sensible conversations about HIV or sexual health itself. These are the people to look out for, to be quite honest. I mean, if you’re going to have a sexual relationship with me and you’re still asking me if I’m clean, are you, have you – ask yourself, or have you actually done any tests? At least in the last three months. Minimum. Yep, so… And I think that for me that’s really important. And we can do a lot more to, you know, bring HIV to zero. I mean, if everyone that is sexually active tests for HIV in a day we would eradicate HIV like that [clicks fingers]. And for me that is really key message, so, and the reason that I really like the message around PREP and even PEP and even U=U because it actually removes the burden from people who are HIV-positive because we don’t have to answer those questions, we don’t have to explain why we’re HIV-positive, you know. I mean, if I wanna have sex with somebody I don’t even have to talk about my HIV-status but, you know, have they taken all the precautions themselves? Have they taken PREP? Are they prepared to use condoms and things like that? All those things need to be there otherwise we’ll be going around in circles. Over and over again. And for me in this day, in time, I feel very optimistic that people living with HIV can and will have our lives back. We will not be subject of discussion and debates because everybody else needs to take responsibility, as well.\n
\n\nI’m actually part of several communities that supports people living with HIV. I’ve created my own community as well of people living with HIV as well, I’ll start with them. This is a peer support for black men who are, er, men who have sex with men who identify as gay, bisexual and trans men, you know, who are HIV-positive. It’s a fabulous community. And a good example of that community, and we do things that are legal and safe and everything, but we also do things that are unconventional. And I’ll give you a quick example, I mean it’s nothing out of the ordinary. There was one weekend which was a bank holiday weekend and I personally had just realised that I’d ran out of my ARV tablets. So, and I was contacting the clinic frantically to see if I could get an emergency supply and I was thinking ‘Friday, Saturday, Sunday and Monday,’ that’s four days I’m going to miss my drugs, so I contacted people within my peer community to say: “Can anyone spare, you know, these tablets, I’m using the one, a similar tablet.” I mean, there were three people who responded, you know, and it was just one bus ride from my home for me to collect seven tablets that would tide me over, you know, until I get back to the clinic. That is what peer support community is also part of. Peer support community’s also part of having this conversation because someone who’s HIV-positive who’s black and gay is more likely to feel comfortable to talk to other people about being black and HIV-positive or in any other subject, so I created a community called ‘Accountability Partners’ within the House of Rainbow community where we paired two people together to become partners, befriend each other, you know, to limit this whole isolation and feeling like an outsider and also, more importantly, to help remind each other when they’re taking their medication. I mean I take my medication around about 8pm everyday. I get a text message from my accountability partner: ‘Have you taken your medication? Don’t forget.’ And that’s cool. And I do the same as well when it’s the time for their own medication. Now, the other group that I’m actually a part of, you know, is actually a faith-based group that supports people living with HIV, so… Soon as I became a priest, before I became a priest, I was a part of that community, they knew that I was training and since I became a priest I have been called upon several times, you know, to lead prayers, you know, to celebrate amongst them and everyone in that community know that we are HIV-positive. I think one or more people within the community passed away during COVID and again I was called upon as a priest to come and lead the programme, not just for HIV but as a community, as part of that community. And of course, you know, I’m also part of another community where I volunteer, that’s what I said earlier on, I didn’t even mention this earlier on. That’s where I’m actually a volunteer for HIV-mentoring, you know. So this is with Positive East, where I volunteer, you know, as an HIV-mentor. So I support somebody who is newly diagnosed, they match me with someone, we have a great conversation, to help them and I do that already working with the House of Rainbow.\n
\n\nWhich other communities are there? So, unless I remember more… I think for me it’s just so important and with all of this, with all of this, there is also the importance of privacy and confidentiality. And also, I mean to me privacy and confidentiality comes second nature and it’s not surprising that six months, twelve months down the line somebody come back to me and say: “Oh, Jide, did you remember this?” And I say: “No, I don’t.” It’s simply, it’s not because I choose to forget it’s because my active mannerism of privacy and confidentiality is very important so I don’t retain information and if I do forget it’s because I’m practising that. I mean, and it’s not that I forget everything because sometimes when I’m talking like this I use examples as well and just make sure that I continue, you know, with privacy and confidentiality so that people are not easily identified or exposed, but it’s almost important… But I’m part of various communities that has been a great strength to me. I’m also part of the community of Religious Leaders Living with HIV, not just in Europe but on a global basis, so…\n
\n\nMy home is my safe space. And… I mean, before the lockdown yes, there are safe space within the communities, there’s safe space, you know, at House of Rainbow where, you know, we come together I think weekly or every fortnight. Just creating space, I mean space around food, around the communities and sometimes when I watch people in the safe space especially if they’re coming for the first time, they’re always a little bit apprehensive, they’re always quiet but when you watch them halfway through the programme and the end of the programme everybody’s really full and you know quite happy and to for me is also creating those safe spaces. And also, safe space mentally, emotionally, psychologically. My safe space is also when I go for walks. I do like the, what do you call it? Solitary space, you know, and I prefer, now that the weather’s getting better, I always prefer early in the morning, something like 6, 6:30, when it’s still quiet, you know. There’s less people and less rush, you know? I create my safe space in that time. Yeah, so. Yeah, I mean, before the lockdown like I said, there are communities where, you know, I do participate and, you know, we do meet up, yeah… Yeah, there’s quite a few. But again, I don’t necessarily just binge, but strategically I’ll go to those places because it fills me up, it really strengthens me. Yep.\n
\n\nI would describe myself as the ‘happy, holy, homosexual.’ And you know someone reminded me of that this week and I’m not always happy all the time. But, you know, I remain very positive that I’m deserving of happiness and I am the creator and the author of my own happiness. I do not expect anyone to make me happy. I expect myself to make myself happy. And, you know, it’s not that I don’t have problems or issues that bring me down but even within those ones, you know, I’m always thinking of how quickly I will get back to my feet and what are the solutions but at the same time I try to look for happiness. And if anything has tested humanity, it is actually the pandemic. And in the pandemic I’m so grateful that the question of home became poignant because three months between July and October I was homeless. So, I’m sitting here talking about my home. The space that I called home for about six or seven years became hostile to the point that I was asked to leave. I was ejected because I didn’t have the security of a tenancy it made it difficult for me to fight, even with the protective laws that, you know, landlord cannot kick you out, and the coronavirus they need to give you three months and I didn’t get all of those because I was considered a lodger then one minute I was considered a trespasser, so… And I didn’t have the energy or I didn’t want to carry extra burden of fighting with this person, so, I moved, you know? I moved a lot of my properties into my office and I then went to find a home where I can pay just to sleep. And, you know, it was really difficult even though I was able to get support. So now that we’re talking about safe spaces I cannot over-emphasise how much I feel safe in my own home. And then I’m looking forward to even create a, you know, a sustainable home, somewhere that I won’t have to worry about being kicked out or being forced out, you know? I mean, I’m renting! Which is great, I can afford to rent, but I think my hope is maybe get social housing or, or buy. So, you know, that safety net needs to be there. At some point.\n
\n\nYou know, most stories of people living with HIV often begins with a great, a great, a big great cloud. The fear of ‘what do I do, will I sustain this?’ The trauma of the news itself. And I know that things are changing because of course, you know, there are people that are HIV-positive and it’s just: “Okay, I’ll just take a tablet a day, yeah, and get on with my life.” It’s not always that easy for many people, in fact the majority of the people that get an HIV-diagnosis feel traumatised. And for me my hope is that people will be able to move, you know, very quickly from that place of trauma to a place of hope and just continue with their journey. And now I wanna make it clear: HIV is not a crime. HIV is not a sin and you can achieve all of your goals even with an HIV-status. You can become who you want to become and don’t let, you know, the external challenges and forces hold you back. And disclosure’s not necessary. I mean, I do, I’ve said to people: “Look, if you feel uncomfortable having your medication in its original bottle, buy yourself, you know, vitamin bottles and just swap it. And it’s okay. Your HIV tablet is just like vitamins, it’s going to keep you healthy, it’ll keep you safe. And you’re going to carry on with your life, you know. And even the question around diet, or do I change my food? And I said: “No, don’t change your food but eat more things that are more healthy for you.” More fibres, more fruit, more vegetables, just eat more of those things. Don’t change your food. Especially people from different cultures, you know, “Oh, I can’t eat that anymore because I’m HIV-positive.” And some people even when they get little rashes, it’s like: “No, not everything that happens to you now is HIV-related so, you know…” You can still get other rashes, you can still get other illnesses, so it’s completely unrelated so slow down. For me it’s just to make… I was going to say to make HIV sexy, maybe we should own that. Yeah, I think we can make HIV sexy, we can make HIV more inclusive, we can make it more acceptable, we can make it something that we can talk about and it’s okay. If I introduce myself to you and say: “I’m Jide Macaulay and I’m HIV-positive,” I think it should be celebrated, not, not… Ostracise me and make me feel shame, no. I mean, I’ve done that before, that’s worse. I did it to a total stranger.\n
\n\nActually that’s a good one for a positive outcome! We’re friends today. It’s so funny right, I mean... It was on an aeroplane, I mean goodness me talk about travelling a lot in this conversation! It was on a plane, it was coming back from South Africa to London and it was a direct flight and, you know, I was sitting on one of those seats where there are four seats, so there’s I believe a mother and a child in two seats and the seat next to me was empty and you know… The plane was filling up and it was close to where you think the doors are going to close and I’m thinking: ‘Oh! I’ve got a spare seat next to me so I get to spread out.’ And then this guy showed up and said that’s his seat. So he sat down and he had his headset on and he was listening to music. So, we had little introduction at that point and then he, when the flight, I think we’ve now taken off and then we started talking to each other, almost as if we knew each other, and he started asking: “So, what brought you to South Africa?” I said: “Well, I came for a meeting for Religious Leaders Living with HIV, I’m HIV-positive blah blah blah” in that one line and he just look at me like: ‘That’s too much information, did you have to tell me that much?’ So he went back to listen to his music. And then I remember, he came, he took off his headset again and he said: “Oh, can you listen to this music?” I’d already told him I was Nigerian. So he said: “Can you listen to this music and see what it’s saying?” So he was listening to Fela, which is a popular Nigerian artist and so we started talking about Fela’s song and then things started falling into place. And it was surprisingly, because it was a long flight actually before we both decided we needed to sleep, then he told me his own story that he was actually flying out of South Africa, that he’s going on a cruise liner from Southampton and he’s chef, he’s a pastry chef. So, we got so interested in the conversation and then he now told me his own story where he was eighteen years old, or seventeen, yeah, he was eighteen years old, just come of eighteen years old, or seventeen, eighteen years old and he’d actually had sex with one of his classmates. Now, of course in his country, actually in South Africa, in South Africa it was considered underage so he was actually charged for rape, statutory rape, even though there was consent between him and the girl. And then he was actually in jail for four years without trial. So the case went forwards and backwards and he was never convicted and then he was finally released because the girl refused to go to the trial. And then it was while he was in prison that he learnt how to, he became a pastry chef. So he said to me that when I told him that I was HIV-positive for example, he was just wow, there are so many stories in this world blah blah blah and he decided to share his own story. Even though we were still trying to find where the common ground is I still felt, the fact that I felt so comfortable sharing with him something that people still consider private, so he then shared with me. And by the time we’d got to London we became friends and we are actually still friends today, seriously. I mean, we’ve not seen each other since then because he was on the liner and then coronavirus broke and he was in South Africa anyway, so he was actually on the liner when corona broke and then he was delayed, quite a lot, because, you know, the borders were closed and he couldn’t travel back to his own country. A lot of the money that he earned he then spent more than half of it outside his country because he was on that trip to make money for himself. I think he’s got two kids? It’s such an interesting story. I mean, he’s still friends with his, the mother of his kids and he’s now got a new girlfriend… Life’s so many stories. We still share stories, it’s so crazy. So that’s actually a very positive one and, yeah… Two, three years on we’re still friends. Fabulous. I mean, I really do respect him a lot and I like him a lot.\n
\n\nI think for me, in closing, I would like to say to people who question HIV, who, you know, call HIV punishment for immorality. Those who believe HIV that is a punishment from God, particularly to the gay community. Those who are highly ignorant and, you know, negative in their response. They should get the knowledge. That in this moment where they are discriminating and they are ostracising people living with HIV: the tide could change. And they could be the one who would need the support. And I would say to them that I will always be here to support them as well as support others. I will never judge them, I will never look down on them, but I really hope that they will not shun people, stigmatise them, discriminate against them or even deny their existence because of HIV.\n
\n"},{"id":"lnl23jdf","title":"John","href":"john","mainImage":"john.jpg","images":["photo-38.jpg","aphoto-196.jpg","photo-97.jpg","photo-390.jpg","photo-40.jpg"],"audioFile":"/static/audio/john.mp3","shortDescription":"John's photos","longStory":"\n\n My name is John Lucas, I am 67, I live in Stockport which is just outside Manchester.\n
\n\n When I think of home I think about safety and security, I suppose. So it’s somewhere where I can go away from anything that I want to escape from, be it people or stresses of work or situations and come in, lock the door and it’s safe, or sit in the garden and it’s safe, especially at this time of year.\n
\n\n I suppose it’s the comfort, ‘cause when I’ve moved house, and if I move into a house that needs lots of work doing to it, I think the most important things are the bedroom, somewhere to sleep, and the bathroom; somewhere to wash, with hot water. If the living room doesn’t get done quite so quickly I can cope with that and in fact when I moved into this house six years ago, there were builders here for several months and I lived upstairs. There was no kitchen. I can manage with that. As long as I’ve got somewhere to wash and somewhere to sleep.\n
\n\n The house I’m living in is a two-bedroom Victorian cottage, I suppose, in the suburbs of Stockport, but when I moved in I had lots of work done to it so that ground floor is now completely open-plan. Some people think it’s very odd that the kitchen is in the middle. So, I have a sort of Victorian parlour at the front, a quite modern kitchen in the middle and the back wall of the house is three glass doors which open up into the garden so I can walk from the house into the garden and as we’re now in June the garden is probably at its best and we can hear the birds. And the flowers are out and a bee just flew past my face, but the great thing is I can walk… And even in the winter I can sit just inside the glass doors and look out into the garden and see how things change during the seasons, so it’s lovely.\n
\n\n At that time I was living in a flat just off the sea-front when I was diagnosed, in Brighton, and it was at the back of the building and I painted the whole flat grey. And it had a grey carpet. And after I was diagnosed I was eligible for social housing, so I applied and I was given a flat at the top of the hill in Brighton where I could see all the way over the town to the sea and it was flooded with sunlight and I hadn’t realised how much of a difference it made to my mood. Going from this very dark grey space into somewhere that was so different and it felt so much better. So since then everywhere else I’ve lived has had bright colours in it.\n
\n\n I was diagnosed in 1989 with HIV, so it was very different. At that time, you didn’t want anybody to know, you were told you were going to die quite soon and many people did. So it was very much something to keep quiet about and people were frightened of you, I suppose. I mean I remember once walking into one of the bars in Brighton and word had obviously got out because as I walked through the door everybody turned and looked at me and the whole place fell silent. And I thought: ‘Okay, I now have two choices: I can run away or I can walk up to the bar and buy a drink.’ Which I did. And I sat there and I drank it and nobody came anywhere near me, for the whole time I was there. Fortunately things are very different now but that was, that was the way things were in 1989. It was quite scary. And of course it’s quite scary being told you’ll probably be dead in five years. So you spend all that time thinking ‘oh’. Every time you felt slightly ill or you had a cold you thought: ‘Okay. Is it just a cold or is something different?’ And there was no treatment so there was nothing you could do. So having had the test and being told it was positive was actually at the time not a good thing at all, because there was nothing anybody could do and you just knew that you had this virus that was probably going to kill you. And fortunately I survived long enough until the treatment was available.\n
\n\n After the diagnosis I suppose I excluded myself from places. You stop doing things because you think there’s no point if you’re not going to be around, there’s no point in thinking about progressing at work, there’s no point in thinking about pensions. There’s no point in thinking about relationships because you’re dangerous to other people. So you stop doing things and the more you stop doing things the harder it can become to then start again because after… after five years, when I still wasn’t ill I thought: ‘Oh, okay.’ And after eight years I was deeply in debt because I thought I wouldn’t be around to have to pay it back. And I still wasn’t ill. And the bank called me in and asked me what’s happening. And for the first half hour I wouldn’t tell them. And then I told them and they agreed a repayment plan and I carried on working. I carried on working because at the time the advice was ‘stop working, claim all the benefits you can – which were worth quite a lot in those days – because you won’t be around for very much longer.’ I thought: ‘No, I don’t want to do that.’ And of course when I left Brighton in 2001, so twelve years later, I was still working. All the other people I knew who were diagnosed at the same time, had stopped working, were having quite good holidays, but they were, you know, in the bar from lunchtime every day ‘cause they had nothing else to do. And they weren’t ill either. But they got to a point where they couldn’t work anymore because they hadn’t worked for such a long time, they were drinking far too much and they had nothing to look forward to apart from dying and of course they weren’t dying. So that was very difficult. Y’know, the plan was you were going to die quite soon so you adapted your life to that and then you didn’t die. And for these people who’d given up working and doing everything it was very very hard, so I’m really glad that I didn’t stop working. And my attitude was I will carry on with life as it always was until I can’t do it anymore. And of course that point never came.\n
\n\n Moving to Manchester was nothing to do with HIV. I’d worked for the same organisation for fifteen years. It started off with six-and-a-half staff running a 23-day arts festival - which was great fun - and then by the time I left we’d taken over the local arts complex. They were 80 staff. I was not really supposed to leave the desk and do anything, any of the fun things, so it wasn’t fun anymore. And I thought: ‘Well, if I don’t get out of this soon, I’ll be too old to do it.’ So I just decided it was time to go.\n
\n\n My diagnosis didn’t really affect my living situation because I was living alone so it didn’t affect anybody else. I, ooh, carried on – we have a visiting cat – I carried on working so financially the only affect was that I was getting into debt on the basis that I wouldn’t have to pay it back. The two people I told about my diagnosis, who I knew socially, one was a woman, the other one was a gay man, they were both older than me and they both had a number of partners, and when I told them they said: “It’s your responsibility now to make sure you don’t infect anybody else.” I thought: ‘No, it’s not ‘cause it takes two.’ But that was their attitude and I don’t think I saw them again after that. They didn’t want to see me after that. ‘Cause they were afraid, because they knew they were having several sexual partners. I had no idea what they did with them but they were afraid and they were afraid because somebody they knew had become infected. And that was really the… The main reaction then was fear because obviously it was in many ways a death sentence, for many people. And the AIDS Memorial Quilt - I think it started off in Brighton - certainly some of those panels are commemorating people that I was with at the time and were my age.\n
\n\n I think the word ‘community’ is a strange one ‘cause people talk about the gay community… Gay men are not very nice to each other. The only thing they have in common is their sexual orientation. Then there isn’t a community apart from the fact that in times gone-by there were specific bars, men-only bars, which are now very few and far between because of equality and things like that, but that was the only real… the only real community was the fact that there were, I suppose, safe spaces for gay men to go to and meet each other. And obviously this was all before the internet and before the mobile phone, so life was very different and in many ways much more fun. Whereas nowadays I think it’s become much more solitary because people can stay at home, use computer, use an app, go onto a ‘dating site’ I think they’re called, and spend hours and hours going through photographs of people that they’re not going to meet because they don’t tick every single thing on their list. And therefore they reject them. And you end up… you can end up spending a whole day and not meet anybody and I think it’s really really… I think it’s really much harder. Especially for younger people.\n
\n\n Attraction isn’t just about what somebody looks like is it? And somebody can have a great photograph and really not be very interesting or not very nice. And somebody who doesn’t look quite so good can actually be really entertaining, good fun, you want to talk to them, you want to spend time with them, and you don’t get that from a very small photograph on a screen. Which is why in the days when you, people went out - because you had to go out to bars, there was nowhere else to go - you know, you might buy somebody a drink, you might chat a bit, you might decide to move on or you might decide to stay with them for the rest of the evening. And it was much more fun. And it was much less like hard work, you know. The digital stuff can be almost like an online interview. And if you don’t pass you don’t get the job, you don’t get the date.\n
\n\n I suppose home is the safe space and because I live alone I can make it the space I want it to be. And I suppose that always has been very important to me, that home is a safe space that I can, if I want to, shut myself away in. But I did learn a long time ago having… all those years ago when I was first diagnosed, the instinct was to go home, close all the curtains and sit without any natural light. And I learnt all those years ago actually if you’re feeling down and depressed the worst possible thing to do is to exclude the sunlight. So ever since then I’ve… I live in a house now that doesn’t have any curtains. It’s got blinds that let the light through. And in fact the large doors at the back of the house have no blinds at all, because I realised how much the natural light, the daylight, and sunshine, affects how you feel. Which is why having a garden to sit in is also such a bonus.\n
\n\n When I was diagnosed, which was a long time ago, 32 years ago now, the perception was, it was people are going to become ill and die and lots of people did. The very nice health advisor who told me my test was positive, then said: “You’ll probably be dead within five years,” and then said: “Many people given this diagnosis decide to become completely celibate.” And I thought: ‘That’s what you want us to do because that means we’re not going to infect anybody else,’ but the other way of looking at it from my perspective is ‘well, I’ve got nothing to lose now, have I?’ So I didn’t become completely celibate by any means. And again it was something to be ashamed of, it was… people were frightened of you, it was still the period when people were not wanting to share cups and share plates at work, so it was… It was… People were afraid of you, people were afraid of the virus, the condition and there were no treatments. And nowadays I suppose living in Manchester where there is a, I think, second-largest population of people living with HIV in this country, people are much more relaxed, people are not so afraid, but it’s still the case that if you’ve got the choice between somebody with HIV and somebody who doesn’t have it, you’ll choose the person without HIV, naturally. But we’re now getting to the point where people are living, we’re told, a normal life expectancy. They’re not being ill. And rather than having a diagnosis and being told you’re going to die and you should stop work, people are being given a diagnosis and being told: ‘Take the medication and go, go… Take the medication and you’ll be fine, just go away now and carry on with life.’ Which in some ways is great, but the impact on the people is still… The stigma is still much the same. And the support is now very different because when I was diagnosed I was automatically, it was arranged I would see somebody once-a-week for the first six weeks, I think, and I was taken to the local HIV-support charity. Nowadays, your test result’s positive, here are your pills, bye-bye. And people come to our local HIV-support charity because they’re not worried about their physical health, they’re still worried about ‘do they tell their family?’ Do they tell their partner? Do they tell their employer? And people are still being pushed out of jobs because of it. So, physical health it’s changed enormously, the stigma has changed a little bit but not nearly as much. I think, you know, the specific gay venues are relaxed and don’t really think about it much. But, you know, one of the things I do is, through the local charity, I go – we have this thing called positive speakers, so people living with HIV go out and speak – and up until… Up until the last three or four years, let’s say, there were very few people who were prepared to do it. And I’ve done it quite a lot and I actually spoke at the World AIDS Day vigil one year and to a huge crowd of people who were much younger than me and I said: “One of the reasons I’ve been asked to do this today is because there aren’t very many people prepared to do it and I’m sure that out among you there are people living with HIV who are still too afraid to stand up here and talk about it.” And that’s something that needs to change and is still happening incredibly slowly, because people… People who are old enough to remember the well-known tombstone adverts still don’t think… You know, that’s when they got their knowledge and information about HIV and because they don’t think it’s relevant to them their knowledge hasn’t changed, their perception hasn’t changed. And in workplaces, you know, people are trained by somebody who almost always is older than they are and they pass on their way of thinking. And if the workplace is thinking, you know, that people at work living with HIV are to be treated with caution, shall we say, and they’re… and all the training follows that down attitudes aren’t going to change. In the public sector obviously it’s much better, but in the private sector it’s still… it’s still wouldn’t be something you’d want to talk about and I’ve, I’ve talked to teachers who’ve had to leave because they couldn’t cope with the gossip in the staffroom. I’ve spoken to people who work in the big chains of coffee shops who’ve basically been pushed out of their jobs ‘cause, you know, the staff didn’t want them there. The management didn’t want them there because they perceived them as a risk. And obviously now people who are on effective treatment can’t pass on the virus so there is no risk. But that message is going through very, very slowly.\n
\n\n I suppose I am possibly, you know, one of the first generations who has been able to live as a … Openly, as a gay man, because I remember the 1967 partial decriminalisation, so I remember when men having sex together was illegal in this country and obviously now I’m nearly 68 and we’re getting to a point where there are people like me who’ve lived all their working, all their life as an openly gay man and now getting older, which is interesting. And obviously I never thought I would live to be this age, which again is quite interesting and still, you know, we’re starting… We’ve just started a new project at George House Trust – the charity I mentioned before – about, for people over 55 living with HIV, because of course up until quite recently there weren’t very many and now I think the proportion of people living with HIV in this country, between 40 and 50% of them are over fifty. And obviously that percentage is going to go up as new diagnoses reduce and the people living with HIV live for a very long time. So we may be approaching the point that anybody with HIV is going to be old, or older, as it very possibly dies out. So it’s very interesting to see how the HIV pandemic in the developed world has progressed while we’re living through the new COVID-19 pandemic and seeing how that’s progressing.\n
\n\n I’ve long ago come to terms with the HIV, after 32 years. I’m very lucky that I’ve survived long enough to be able to have treatments, treatments are now effective, I’ve never really had any significant side effects, so I’m now expected to live a... It depends who you talk to, either a normal or near-normal life expectancy and I’m pleased to say I’m fit and healthy and I go to the gym twice a week and life hasn’t really… Apart from that initial eight-to-ten year period when things were difficult and impacted, I’m very lucky that I’ve carried on working, so since then life hasn’t really changed. I got to a point where I thought: ‘Ooh, you’d better plan to have a pension ‘cause you might live long enough to have, to need one,’ and that was, you know, something I hadn’t expected to have to do, and now I do have the pension and life is good. I talk to my personal trainer and he says: “You could live to be ninety or more,’ and I think: ‘Ooh… I’m not sure I want to live to be ninety or more but…’ Maybe I will. My father was 92.\n
\n\n I’ve had cancer, I’ve had cancer and other treatments and yeah… That was actually more frightening that the HIV. I seem to be quite robust.\n
\n\n I suppose it’s about how things have changed in the last 32 years and how HIV is no longer – in the developed world, in this country - something to be afraid of either if you’re living with it, or for other people to be scared about coming into contact with people with HIV because in the last, what? Three, four years, now we have u-equals-u. Undetectable viral load equals untransmittable, can’t pass on the virus. We are theoretically approaching the 2030 target when there could be no new HIV infections in this country. And that’s something to be celebrated. And we should, we should be very thankful to all the people who campaigned in the early days, some of whom are still around, grateful to them and all the work they did to getting us where we are now. Obviously to the medical profession as well for having produced the treatment, but I think it’s just as much about the people who campaigned and did all that fundraising I suppose.\n
\n\n I suppose something that is interesting is that we are sitting in the garden doing this interview and, y’know, the houses either side are quite close and probably, well, certainly thirty years ago I certainly wouldn’t have done an interview in this situation because the neighbours might hear, but they might not and I’m not really thinking about that, which is something which has changed over that period of time.\n
\n"},{"id":"24mlnk","title":"Jonathan","href":"jonathan","mainImage":"jonathan.jpg","images":["photo-1.jpg","photo-5.jpg","photo-15.jpg","photo-17.jpg","photo-98.jpg"],"audioFile":"/static/audio/jonathan.mp3","shortDescription":"Jonathan's photos","longStory":"\n\nHello. My name is Jonathan Blake. Just choking on a nut. On a piece of homemade boiled fruit cake, with almonds on the top. There. Yes, so my name is Jonathan Blake. I was born in July 1949. I’m now 71-plus. I was diagnosed with HIV in October 1982, actually it was called HTLV-3. Human-lymph-something-adenopathy-something-virus-3. I don’t know what the… I don’t really know what it was. I could look it up, but I haven’t… But then it became known as HIV in, I think it was about 1987. Originally, it was HTLV-3 in this country and in the United States and it was LAV in France. But I think it was Luc Montaigner who actually finally kind of discovered the virus. I think I’m correct in this and so they decided that they wanted to rename it so that it was simpler. And so they eventually called it HIV which is human immunodeficiency virus and I’ve been living with that for almost thirty-eight years ‘cause October 82 to well, here we are, December 2020. I’m one of the lucky ones. Yeah.\n
\n\nOh, home. I mean… I think it’s the place where one feels safe. So it’s a safe place. And it’s where one can just be one’s self, let your guard down, feel sad if you’re sad, weep, just be who you are. And for me it’s, it’s something that is really really special. And I suppose that some of that is because having chosen to be an actor, which is kind of what I wanted to be, I suppose I wanted to live in make-believe and I was very fortunate in that I was one of three boys.\n
\n\nMy mother, who was born in Swansea, south Wales, the second daughter of the rabbi who lived there. She was born in January 1914 but in the March of that year they emigrated to Canada and they went to live in Winnipeg in a house that was built on stilts because of the snow. And they kept chickens because you need eggs so the chickens, but also in order to feed themselves every so often a hen would be taken for the pot and being that it was a kosher household they just used to chop the heads and so the chickens would run around with their wings flapping and my Mother could never stand flapping birds and I remember as a child being given by a great aunt, well, an aunt who was married to a great uncle so that made her a great aunt even though she much younger than him, Ray, but she liked parrakeets and budgerigars and she gave me a budgerigar and every so often I would let the budgerigar out because I knew that would freak my mother out. God, I was an awful child. Oh dear. And then of course it would be my mother who would have to catch it to put it back in. Which she did, so, that’s fine. But yes, so… I was born in Birmingham which is where my father’s family were from. My mother’s, basically, my maternal grandfather – who I said was a rabbi, he was orthodox – they moved to Winnipeg and then for some reason and I don’t know what the reason is and I would always love to know, he turned Reform in 1924 and they moved from Winnipeg to Montreal. And to a Reform synagogue there, and my mother always remembers how the joy of a) skiing down Mont Real in the snow but also suddenly they tasted bacon because they were no longer from, they weren’t orthodox, so there was all this tres-funky meats that they could have. And that was great because also she loved shellfish and so we were introduced to shellfish at a very early age.\n
\n\nAnd we were very fortunate in terms that my father had a house furnishing business in Birmingham so I suppose we were just a middle-class family but what was fascinating was that his family and sort of extended family would go to the orthodox synagogue because they originally were orthodox and one day, one Friday night, the rabbi berated people “… who they know who they are in the congregation...” who not only break the Sabbath by opening on a Saturday, they sell unclean meats because they had a grocery business and they felt they should cater for the population so they sold bacon, they sold ham, because that’s what the people who shopped there wanted. So, there were ten cousins, brothers and cousins and being as it was orthodox the men sat downstairs, the women sat upstairs. They got up as a body, they looked up at the women and children up in the gallery and they walked out and formed the Reform synagogue, the liberal synagogue in Birmingham. And I remember that there were even times when people in Birmingham who if they saw my parents coming down the street they would cross over. I mean, it’s just… religion is… Just… What a mess. So yes, so anyway, my mother was born in Swansea but emigrated, but then her father died so in 1926 - so they’d moved to Montreal – in 1926, he was 44, he had a massive heart attack and died. And they were basically left penniless. They had to sell everything that they had bar a few books. There was my maternal grandmother and my aunt, my mother’s elder sister and Annie was probably about twenty or even thirty years older than my mother. She was to become a journalist. So they had to sell up everything and move back to this country where my maternal grandmother’s aunt had married a man called Louis Silkin and they lived in Dulwich, so they moved to Dulwich. Annie was alright ‘cause she had a job, she was a journalist, so she used to go out to work but my mother, even though this man Louis Silkin had three sons who didn’t lift a finger, they had servants, manservants, maid-servants, what-have-you; my mother was made to skivvy, to earn her keep but what was fascinating was that when I moved to where I live now which is in this lesbian/gay community of Brixton Housing Co-Op and there are five houses on Railton Road and there are three houses on the road behind, which is Mayall Rd which has this wonderful communal garden and when I moved here I thought: ‘Oh god, how am I going to tell my parents that I live in Brixton, Burnhill Brixton?’ because all they’ll think of is riots, but this is where I’m living, they’re going to come and visit so I need to tell them, so I remember saying “...oh, this is where I live,” and my mother went: “Oh, I used to walk down Railton Road everyday.” From 1926 she would walk down Railton Road actually walk all the way from Dulwich where she would walk down Railton Road to get to the bus stop outside Morley’s, which is a big department store there, because she was at school at Elephant and Castle so she would take the bus to Elephant and Castle. So she remembered Railton Road when it was kind of posh and middle-class. It was never a problem in her head, you know. I’d come home. Which is amazing. I just love that idea that there are all these connections, so many in my life, it always seems that there are just so many connections. But I ramble on.\n
\n\nWell I would say [my home] that it’s probably cluttered but everything that I have in it holds a memory so there is nothing, I don’t think there is anything, that I have in it and… That doesn’t mean something but personal to me. How would I describe it? Well, it has basically a living room and a kitchen that sort of are connected. I love cooking so there are lots of cooking pots around and bakeware. Lots of objet, potted plants, there’s a sofa bed and a sofa. It’s really difficult to… It’s lived in. It’s really… It’s, it’s, it’s… It’s lived in. And I have. I’ve lived in the place where I am now, I’ve been here for almost thirty-five years, because October in 1985 we moved in to this current house. So yeah, I’ve been here thirty-five years and it kind of tells because there is just all this – probably people would say detritus – but it isn’t, it’s all… I have a work table which is up against the wall and comes down because I retrained as a tailor so I was able to use that as a cutting table. I used to have a big leather sewing machine but basically after I had to sort of… My health gave out, when I was a... I’d retrained. I’d been an actor in my former self, pre the virus, meeting the virus. Then the business seemed to have given me up, so that was that, and I retrained as a tailor. Eventually. I went to a – it’s an amazing story – Nigel, my partner, who I’ve known and lived with now for thirty-seven years, he and a friend of his were going to do a trouser-making class and I said: “Oh, that sounds fun, can I come along?” And he said: “Yeah, yeah, the more the merrier,” and we paid our pound to go and do it. We arrived at this adult education centre nearby, nearby, near to Brixton where we lived, called the Strand Centre and we were up on the fifth floor in what had been the old chemistry laboratories so these tall tables and there was this lovely elderly Jewish tailor called Harry and the first thing that Harry said was: “I want you to sit cross-legged on the table,” ‘cause that’s how tailors used to sit. My father used to sell furniture. If you ever sat on a table you were screamed at “… get off the table, chairs are for sitting on not tables!” So Harry, with one phrase, had given me permission. I was up there sitting cross-legged, you know. Originally, you would have a board across your legs and that is what you sewed on. And the reason for that was you paid for your table-space. And that was like the cheapest way that you could so you’d have a whole number of tailors all sitting on a big table. Chatting together. Anyway, so I thought ‘… this is great, but how many pairs of trousers do I need?’ Really what I need to do is learn how to make a pattern. So one of the other people say: “Oh! They do a pattern-making class at the London College of Fashion.” Well, I thought: ‘I’ve paid my pound, I can do any number of courses. So I headed down to the London College of Fashion, this was at Shoreditch, this is where the tailoring section was, which was the old garment area of the City of London. And I enrolled for this pattern-making class and I loved it, I really thought this was great. And while I was there one of the tutors said: “Oh, by the way, I don’t know if you might be interested, but we do this three-year diploma in tailoring, City & Guilds.” I thought I’m going to be dead before I finish that but yeah, it’ll keep me busy. You see, I’d been a member of Lesbian & Gay Men’s Support the Miners and involved with the miner’s strike in 1984-85, which was amazing ‘cause for me, once I’d got my diagnosis, to me the most important thing was as long as I could keep busy I didn’t have to think about the virus or I could, you know, I could have displacement activity. That’s what my survival technique is going to be all about. Displacement activities so I’m not having to deal with the issue of, you know, this virus. It’s enough, I will have to deal with it, but, anyway… So lots of displacement activity and this was a brilliant displacement activity. Anyway, I enrolled, I managed to persuade Lambeth Council to give me a grant - it then was still grants, we hadn’t got to the dreadful situation of today of loans – so I got a grant and I was able to do some work, there was a local restaurant we used to all work in, Bon Ton Roulet, which was fabulous and Sally Sherritt who owned it was brilliant so that kept us, you know, fed and watered and what have you. So I did and, you know, my parents were thrilled because suddenly I’ve got a proper job, you know? It wasn’t about, sort of… Not, not that I was necessarily sort of, you know… How was I going to get a job as a tailor? ‘Cause, god, I knew I couldn’t work down Saville Row, I’d kneecap ‘em rather than make clothes for them, but you know, there we go.\n
\n\nBut actually, eventually, I did get a job, and I got a job making costumes for English National Opera and that was fantastic, ‘cause like, sort of, theatre held no mystique for me because I’d been an actor but opera: I loved it. It was so overblown, you know, but the music… So that was just, that was wonderful. And I started off there as freelance, full-time freelance, wanting a, wanting to be full-time there, you know, paid member of staff because I knew that holiday pay yes would have been important, but sick pay: I knew I was going to need that. You know, at some point my health was going to give out. But actually, you know, amazingly, I managed to get through… I started working there in 1988 and eventually my health gave out in 1996. So, I was incredibly fortunate.\n
\n\nMy experience in the theatre stuck with me, in more ways than one. I enrolled in drama college straight after leaving boarding school. My first acting job was in 1970, and for the next decade, I bounced seamlessly from role to role. Chauffeured in a private car, of course. It was semi-fantasy. If ever I had a break from the stage, I would travel. I bought a return ticket to New York, for eighty pounds, and flew. NYC in the ‘70s certainly live up to its colourful reputation. I went to the first night of Grease on Broadway, I went to Bernstein’s Mass, I saw Bette Midler in her first concert at Carnegie Hall. My head was turned. Totally turned. So I went back. And this time, I managed to wangle a colleague’s empty apartment in the Upper West Side’s Ansonia Building. The Ansonia was spacious, glamorous, and above all, it was home to the city’s infamous Continental Baths, famed for its all-inclusive hedonism, and was reportedly visited by the likes of Andy Warhol, Mick Jagger, and Alfred Hitchcock. It was great, really phenomenal.\n
\n\nIt was after my return, and whilst working at Joe Allen’s – a London restaurant famously staffed by out of work actors – that I began to notice something was wrong. I got ill. Every single lymph node in my body was enlarged. I couldn't put my arms by my sides and I was basically walking around like a gorilla.\n
\n\nI was diagnosed with a virus which caused ‘persistent lymphadenopathy’ in October 1982 which ater in 1985 was called HTLV-3. I was 33. I wasn't the first person in the UK to be diagnosed, but I was one of the first. The doctors had no idea what they were dealing with. Nobody did. At the time, it was terminal.\n
\n\nI mean, I have been amazingly fortunate in terms of what HIV has dealt to me, yeah, ‘cause god I’m 71 now. And I’m still here. And I didn’t start taking the combination therapy until 1996, ‘cause my health had given out in 1996 and at that point... I’d been at the Middlesex initially, then the Middlesex closed down, the famous Broderick Hall, all of that disappeared. We were all moved across from James Pringle House at the Middlesex to Mortimer Market, which was part of University College Hospital. I, in 19... I think 80… it was either ‘86 or ‘87, had been asked to part of the Concorde Trial, and the Concorde Trial was where they were wanting to see what the effects of the use of AZT, this failed chemotherapy drug which actually killed people rather than doing anything for them. But anyway, so, I was asked if I would enrol in the Concorde Trial and I asked them a, to me a very simple question, and that was: “I understand you have a cohort and cut the cohort in half. One half gets the pill, AZT, the other half gets the placebo. So, are you going to match people up so that someone who has a similar build or sort of metabolism to me, we will be paired up, one of us will get the pill the other will get the placebo?” And they went: “Oh no, that’s far too complicated.” I sort of saw red and I got a bit, sort of, belligerent. I said: “Well.” I said: “If you could put a line down the middle of me” – this is ridiculous – “if you could put a line down the middle of me, give one half of me the pill and the other half the placebo and we’ll see which side does best, that I think is a trial. But, if you can’t be bothered to do that, I can’t be bothered to do your trial.” And that I believe is the reason I’m still here. Because everybody was being given three grams of the stuff. So a gram in the morning, a gram at lunchtime, a gram in the evening. The dose of AZT when it is now used – and it’s being phased out – is 1.2 milligrams. I mean, three grams… And basically old chemotherapy drugs what they do is they wipe out your whole immune system, so they wipe out the cancer but they also wipe out all your T-cells, so it leaves you open to opportunistic infection and that’s what was happening to people who were taking the AZT. Their immune systems were wiped out. They had nothing. An opportunistic infection may – mostly it was PCP, pneumocystispneumonia – would come along, they’d drown in their own lungs. Or they would get CNN-retinitus, go blind. I mean, you know, and…\n
\n\nI’m still angry about it, all these years later. So when I basically, in 1990, 1989, my T-cell count fell to 200 and that was considered to be an AIDS diagnosis, and I freaked. And because I was considered a difficult patient, ‘cause I hadn’t joined the Concorde Trial, I never saw the same consultant or registrar twice. It was always different. I was seen, but, you know, all those things that initially had happened when you’d had MRI scans and all kind of things, all that stopped. And I… So I freaked and I didn’t know where to go. I was really fortunate in terms that I had a younger brother. I have an elder brother and a younger brother. Now, my elder brother and I didn’t speak. I came out to my parents in the late 60s on my 21st birthday. The gay male age of consent was 21 until 1994. I remember visiting the theatre with my mother when I was a child. I was completely bowled over. I turned to my mother and said: “I’m going to be an actor,” and she looked at me: “Well I hope not like John Gielgud”. I didn’t know what on earth she was talking about. It was years until I discovered the actor had been arrested for cottaging in 1953. Despite what I thought, they reacted remarkably well. I thought that they would be horrified. When I announced at the age of 21 that I was gay, I was homosexual, my parents accepted it, in fact my mother actually said “… oh, but we knew,” to which I replied: “Well, why couldn’t you have told me then we could have done away with all the subterfuge!”\n
\n\nBut my elder brother said: “I can just about deal with you but any of your friends I would smash their faces in.” So I said: “Fine. We won’t talk.” And that was it. We didn’t talk, you know, I would be civil to him when we went to, sort of, family gatherings but we absolutely no, we just didn’t. Right up until the point that… My mother predeceased my father and when my father died then I told him that I was HIV-positive. I saw his face just drop. But I wanted that to happen, I wanted to shock him. Mean. But anyway, so, so, so he had said that but my younger brother he knew, so it wasn’t an issue. He had, gone to Oxford, done – I think they call it Greats, it’s Latin, Greek, Nature, History, Philosophy, god knows what – anyway he left there, finished, got his degree, worked at the Home Office, and suddenly thought: ‘What am I doing here? I always wanted to be a doctor.’ So he retrained. He went to Birmingham Medical School. Then came up to London and went to the Westminster. The Westminster closed down, became the Chelsea & Westminster. Part of the Chelsea & Westminster was...\n
\n\nBasically, he had worked at the Kobler. So I fled to the Kobler, ‘cause that was like the only other place that I knew. So, when I got my HIV-diagnosis I eventually told him, not, not immediately but after I’d… Basically in the December of that year I’d attempted suicide but my mother had said: “You clear up your own mess.” So, that was it. I’ve digressed. Anyway, so I went to the Kobler. They wanted to put me on the medication, they were brilliant in terms of sorting out benefits, disability, living allowance all of that, but they wanted to put me on to pills and I was still so angry about the AZT I didn’t want to do that. What was amazing was that in 19... I think it would be 1997, I think that I’m right. There was the ‘Don’t Die of Ignorance’… no, maybe it was 1987 actually, 1987. Yeah, ‘87. There was… the Government produced this, what I considered to be pretty horrendous, the ‘Don’t Die of Ignorance’ campaign, but they did it. To me, it was terrible because all it did was instil fear, it didn’t give education to people. But… What they did do – which was amazing – they put money into drop-in centres so there was this wonderful place called the London Lighthouse which was created, you know, and on the top floor was a residential unit which basically was a hospice where people would go to die with dignity. And that was really, really special.\n
\n\nAnd there were other drop-in centres, so, there was one locally called the Landmark and we used to go there. So I would go to the Landmark because it was a safe place and... So you could go there and you could get information. They get help with benefit information and housing information, just everything. And it was a place to go to and there would be food, there would always be food there, because one of the things that happened that people were. When they started on the medication developed this lipodystrophy or lipoatrophy where all the fat drains from out of your arms and your legs and you might get the dowager hump or it just disappears or it just goes onto your organs. So, you look like, y’know, you’ve just come out of Belsen. This dreadful sort of gaunt, gaunt look. And so they would produce food because the idea was if you ate food that would build you up. They hadn’t realised that actually the muscle wastage: it’s gone. All the fat has gone, y’know. You’re not going to get it back. That was, you know, one of the many side-effects of the medication. So we’d go there to eat and I remember going there and saying: “I don’t know, I need to find a new HIV consultant because they want to put me on the pills and I don’t wanna go on the pills and I don’t know what to do.” And somebody said “… oh, I’ve got this wonderful doctor down at King’s College Hospital. King’s College Hospital is down the road and around the corner from where I live. I’m crossing half of London to get to the Kobler. So, I make an appointment to see this man and… I won’t say his name, but he was just amazing. I went to see him. He listened to my story and he said: “Alright.” He said: “You keep getting shingles and herpes, so I’m going to put you on acyclavir prophylactically,” because that was the pill that was used when you get shingles to stop it and fight it. And he said: “We’ll see if you can tolerate septrin.” Now septrin is a really inexpensive antibiotic which if you can tolerate – and a lot of people couldn’t, so that was the sadness – but if you can tolerate it that would keep PCP, this pneumocysticpneumonia, at bay and that was, sort of you know, one of the major killers of people. So, he put me on that and that’s what I sort of basically survived on up until 1996.\n
\n\nWell, in 1996 my health gave out. I got shingles internally on the phrenic nerve, hiccup non-stop for ten days. And then after that I had got no energy. I would literally… I would wake up in the morning, I would peel myself out of bed and I would come and lie on a sofa in my front room. I would then get off the sofa, I would go and lie back down in bed. I mean, I just… I had got no energy, I was completely lethargic. And… Eventually my HIV consultant said: “You know, Jonathan, you are now going to have to bite the bullet and start on combination therapy.” I thought ‘...well, alright.’ So he worked out a regime which was twice a day. I can’t remember how many pills there were. There was DDI, D-40 and I think something called nevirapine, I think was the three that I had. First week, nothing. Second week, nothing. Third week, still nothing and I think: “Why am I putting all these pills inside of me, I mean this is just…’ I did. I woke up on the morning of the fourth week I had got so much energy it was like Lazarus raised from the dead. It was like Atlas. I could carry the world on my shoulders. I had got so much energy that I got up and I laid a patio outside my French windows. I mean, I’ve never done anything like that in my life. There used to be this wonderful grassy mound. I mean, it’s incredible. And... I was good for eleven months and then suddenly I had got such pains in my hands, such pains in my feet, so much so that I would... I would go to the supermarket, I would hang off the trolley keeping my feet off the ground thinking that way I wouldn’t feel the pain of course. Of course I felt the pain ‘cause I’d got peripheral neuropathy… it was the nerve endings in my feet and my hands. My partner Nigel was going on this amazing trip with a dear friend of his, they were going to fly to Seattle and then drive through the Rockies to Montana and I thought ‘...you’ve got to go. A) you’ve got to go because I want you out of here. I don’t want to be around you, what have you.’ And I just want to be ill. I feel lousy. So I pretended everything was fine. He left. The moment he left I got on that phone to my HIV consultant and said: “I am so… Feeling so awful with these pills, I’ve got such pains.” So I went down, I saw him. He said: “Right, we’ll change your combination.” So he then put me on to something which was combivir and something else. And I was so nauseous it was unbelievable, it was just… Ugh. Anyway… So, I’m feeling awful. Nigel, happily, has gone. I ring up the consultant, I say: “This is not working, I can’t bear this. I don’t know what…” So he said: “Alright.” He said: “You’re obviously worse on the pills than off, take a drug holiday.”\n
\n\nNow, I was on something called combivir. Combivir had AZT in it. Now whether this was psychosomatic… I don’t think it was, but it’s interesting. Anyway, I then had a fifteen month drug holiday. What was amazing was that this is 1997. In 1997, viral load testing comes in, so they can now test how much virus you’ve got. So, every couple of weeks I would go and have my bloods taken and eventually, when I had only got 70 T-cells left, I had got over a million bits of, parts of virus in a millilitre of blood, I mean… It’s just… You can’t imagine that! How on earth can they all be in there? Anyway, he said: “You know, now’s the time you’re going to have to start back.” So, then he worked out a regime and basically I’ve been on the medication ever since. It’s slightly changed, but… Yeah.\n
\n\nI think that because, as I say, having been an actor and you’re going out on tour, so for me having somewhere that I could call home, even if it was just a bedsit, somewhere I could be me, that I could entertain, I wasn’t having to perform or what-have-you, was really important and I think it’s always been important. I think maybe it became even more important, perhaps the very fact you’re given a terminal diagnosis, your perception of what is important changes. So, having a roof over one’s head was und-. And that’s where I’m being incredibly lucky. My meeting with Nigel, as I say I got my diagnosis, attempted to commit suicide in December of 1982, couldn’t, since I couldn’t then nice Jewish boy if you can’t kill yourself you’ve gotta get on and live. How you’re gonna get on and live? So, I used to go out to pubs. I wanted to be with people but I wanted to send out all the vibes not to come near me because I’ve got this killer virus coursing through my veins. I’m a modern-day leper. You do not want it. So, it was really really difficult.\n
\n\nAnd I remember picking up this newspaper – Capital Gay – seeing this tiny advertisement, ‘Gays For A Nuclear Free Future,’ running a coach from Gay’s The Word to go to do this stand together. Went there, met Nigel Young – I think I’ve said all this before – but anyway, so, the very act of meeting him just changed everything. I mean, that to me was probably the best day of my life and the fact that we’re still living together all these years. Well, you’ve heard on the tape ‘cause he came down and I had to send him away, but…\n
\n\nI saw a call to action from Gays for a Nuclear Free Future encouraging people to join them on a protest. I decided to go along. That was going to be my re-entry into society. As soon as I got close, saw the coach outsider Gay’s The Word, my courage failed me and as I turned to flee this man came up to me. He was wearing green wellington boots, a fair-isle sweater and he had a mop of black hair. His name was Nigel. We spent the whole day together. The next day, Nigel came round to my flat with a bunch of flowers and a box of doughnuts. What more could you want? Almost 40 years later, we still live together.\n
\n\nSo, home is just really really really… It’s… It’s special and here I have been incredibly lucky because I live in this gay and lesbian community so there are four houses on one street, five houses on the other, there’s a big communal garden. For twelve years, I got to plant this fancy garden. Nobody was interested. Suddenly people got interested. “Ooh, can I have a place?” “Ooh, is this a communal garden? Are we all part and parcel of it?” I would come indoors, I would stamp my feet. It was like my best toy had just been taken from me. I was so angry. But no, I mean, it’s been amazing and there are now a number of people who are involved in keeping the garden and looking after it and tending it and so it’s, yeah, it’s, y’know...\n
\n\nPositive reactions are very simple and straightforward because for the most part, I’ve never felt kind of ostracised but I never told anyone of my HIV diagnosis when I was working at English National Opera until much later because, you know, one’s working with sewing machines. It used to terrify me, the fact that I might get my finger stuck in the machine. What was I going to do? Could there be blood everywhere? How was one going to deal with it? But what was amazing was that when I went for my interview there, I remember, sort of, being told to sort of go and wait in the workroom and everybody is busy working there and I really didn’t want to engage in conversation with people, I’m feeling nervous and what are you’re going to say? So I’m looking at, around the walls and my eye hits on a letter on the notice board and it was from St Mary’s Hospital, Paddington thanking everyone in the workroom for all their support to Peter, Peter who was the head cutter there who had just died from HIV/AIDS. And I thought: ‘I want to work here because when I get ill, they’ll understand. I’m not going to tell them, it’ll all be by osmosis, but, you know.’ It was so that… I felt I was at least going into a safe space even though I wasn’t necessarily going to share it with them.\n
\n\nSo, that’s a really positive thing. Really the only negative one, is really, you know… When you go on to – and I have gone on to – these sites like Grinder and the shite that you get ‘cause I like to be upfront about my HIV diagnosis ‘cause I kinda feel that people have gotta make an informed choice and I wouldn’t want to have to sort of get to that situation where I’m going to meet someone and then one has got to tell them. I think they need to know so they can go, you know, “… er, no; not for me.” Well, you didn’t just get ‘no, not for me,’ you used to get just the most unbelievable hate and shite and of course, sort of, you know, they didn’t understand and then I would send huge messages explaining to them the realities of living with HIV and what it meant and, you know, whether one was safe and blah blah blah. I mean, it probably washed over them. So, that is, to be honest, I think that those are the only areas where I’ve ever kind of felt, you know, a really negative impact but at the same time I’ve been really fortunate in that all the people that I know, know. I went to drama school and there are a few people from drama school that I still see, they all… you know, I told them. So I’ve always told, I’ve been very open about my diagnosis, ‘cause I just think it’s important. I think it’s important to be upfront and I’ve been in a really, I suppose, privileged situation of being, you know, in safe environments, so when I finished working at English National Opera in the wardrobe there, had to finish, I used to go and volunteer at the Landmark, which was this wonderful drop-in centre. So… And I used to work on reception there, ‘cause I kind of felt like you’re there, you’re the frontline, people are coming in in crisis, you know, hopefully I can make them at least feel comfortable and they’re alright, so… I did. And I enjoyed it. There reached a point that Nigel, my partner, in… 2013, yeah, had a stroke. And at that point, the Landmark had been taken over by Terrence Higgins Trust so I had left there, ‘cause there were too many changes. But then, Nigel needed to get support ‘cause he got diagnosed in ‘96 and he had Karposi’s sarcoma, so, I remember him taking off his t-shirt and me seeing the Karposi’s mark on his back and thinking: ‘What am I going to do? How am I going to tell you?’ But we got through it and, you know, what was amazing was the fact that the medication was already there so he was seen and it cleared, you know. So… sort of… God, that’s also, perhaps that’s also one of those not-so-good moments, but it wasn’t, you know, he and I, sort of, sexually we hadn’t been compatible so I knew that it wasn’t, that I hadn’t passed it to him. So… Yeah, that was… But anyway, so, the Landmark had closed down. It had been taken over by Terrence Higgins Trust. They had opened a place in Waterloo called Lighthouse South London, because they’d also taken over the Lighthouse, rescued it. And so I went down with Nigel to, for his appointment, and the woman on reception was, had been the manager at the Landmark and Jeanie said: “Oh, hello! You wouldn’t like to volunteer here would you?” And I thought: ‘Yeah, why not?’ So I started volunteering there and was there for about, I don’t know, about ten years or so. Until Nigel had his stroke and I thought: ‘No, I… This is where my priority is so I need to sort of... do that.’ But I still do the odd, sort of, I’m part of something called Positive Voices. So, we go and talk in schools about living with HIV and try to educate, you know, kids or youth clubs or… I’ve been doing them on the Zooms and what-have-you. We did one with someone for the Ralph Lauren organisation, which, basically was being recorded there. At one point there were, I think , 87 people on the Zoom but they were recording it and going to be playing it to the whole organisation so, you know, hundreds of people would have seen it. So, yeah… It’s one’s way of giving back, you know, for all the support I’ve had from my community I suppose.\n
\n\nI suppose so in terms that, you know, I would go to gay bars and you know… I think I excluded myself. I’m not so sure that I would necessarily… You know, it’s a difficult one. There is always this thing that, you know, would they have excluded you? Or did you exclude yourself so they didn’t need to? You know… It’s a difficult.. But, I mean, yes, there were times it was difficult. But what was interesting was that when I was a member of Lesbian & Gay Men’s Support the Miners and we went and supported the miners in south Wales, because again, for me south Wales was really important not only because like, kind of, going there and because of my mother but also my first television that I did was something called The Regiment and we’d done all the studio scenes and they were then going to do the external scenes and I’d got a pantomime and it was in Swansea, the Swansea Grand. And so, they decided the external scenes they wanted to shoot was for the Veldt and they used the heath above Neath, sorry it’s a rhyme, but yeah, so the heathland above Neath. So a car would come and collect me from my digs in Swansea, take me to do the filming and then bring me back to the stage door of the Grand. I mean, it was amazing. And what was extraordinary was that it was during the first miner’s strike and there was the three-day week where you would get electricity for three days and four days off and so the theatre bought a ship’s fog light and a generator so the show could go on so there were four days where you had this blinding white light. For Anna-Lou and Maria to do their dog and pigeon act. It was amazing, it was fab. Loved it! But yeah, so south Wales. I was connected with south Wales with my mother, with the pantomime, and the filming and then down in south Wales, and everybody there knew, so I was out about my HIV status. So for them it was an education, of course. And people were just so generous it was amazing, given the hardship they were going to they couldn’t have been more kinder or generous in what they offered to us. Amazing experience, absolutely amazing.\n
\n\nI mean, I was always out about it because I was able to be out about it and I was in a safe space and I was in a safe community, I lived in a lesbian and gay community, so, people knew, we were all being affected by it. So in those terms, you know, a lot of those places, you know, that were important to me, weren’t affected. But I remember that, you see my younger brother knew, so I knew my parents never did know ‘cause I decided I wasn’t going to tell them, you know, they’d had enough dealing with my coming out, you know, when I was 21, why should I put them through this? My younger brother knew and I knew that when I got ill he would be able to explain the realities of it. Not all the misinformation that the right-wing press was pumping out. So he knew, so that was good. But, my elder brother never knew up until when my father died and then I said ‘right’... But what was extraordinary is that it did shock him and it winded him and he then used to ring up to check that I was alright, which was amazing. What was even more amazing was that when Pride came out, he rang me up and he said: “Oh, our local rural cinema is going to be, have chosen Pride and they’re going to show it in our village hall.” They don’t know that I know you, will you come down for it? And I just thought: ‘That is amazing.’ And I said: “Of course.” And I also wanted to see where he lived. And I remember going down there and he’d arranged to have me put up in the most wonderful BnB that was run by friends of his. And I thought: ‘Oh, that’s a shame. You couldn’t put me up where you live.’ Well, the next day he said: “I’m going to take you to where I live.” Well, he took me to where he lives. He lives in a little sort of flat on a farm. It was such a tip. I mean, there was filthy washing in the sink that had gone on, obviously for days… I mean, it was just disgusting. I mean, I wouldn’t have stayed there if he’d have paid me. Oh, it was just… I felt really sad for him. And he was someone that… I mean, he always felt that, like, as the eldest son he was responsible. He and I had had a really difficult relationship because he’s three years older than me and then I come along and take all the love that he feels should have been for him. But he’s very kind of conventional and conservative with a small C and what-have-you. And, he had been in love with some young woman and my parents didn’t approve and put the kibosh on him, so that all fell through. Then he married someone who was already, had been married and already had a family and there were two young girls or young women even at that point, who, really ‘cause he is a chauvinist and was a chauvinist, so… They had no truck for him, but she also had a young son. He and my elder brother were absolutely… Just got on. And then Jamie was killed in a car crash. And that absolutely devastated Dick. Absolutely devastated him. So, for him to have made that move to invite me there was just amazing. And, you know, we kind of, you know… So, we do, we speak every sort of couple of weeks or so. I see him from time-to-time. He’ll go down, or used to go down and have Christmas with my younger brother, who lives down in Devon. He become an oncologist, but dealing in radiography, so zapping the cancer, not as a surgeon. So yeah… As a family we’re still sort of, I suppose, relatively close. I know Nigel’s family, sort of, there, and we’re sort of close. Yeah, so sort of… I can’t think that, it’s not really that… Well, I choose who I tell and I tell most people. So, I’m comfortable. Well, I should be after all these years. But I’m amazed. I never thought I would see forty. I mean, I hit 40 - I was diagnosed when I was 33 - had a wonderful party here, when I was 40 and I was working at the ENO. It was great. And a lot of people that I worked with came. And then 50 and then 60 and then I had an amazing 70th in the garden. It’s a brilliant space for parties. I’ve been incredibly lucky. Incredibly lucky. Absolutely blessed. And I don’t know why, I mean you know… But, yeah… Who would have thought it?\n
\n\nPart of the safe space and the fact that there is this, you know, this communal garden, you know, which I just love, ‘cause for me, you know, when you’re given a terminal diagnosis the fact of having a garden… There is always something happening, whether there are plants that are dying back or, you know, there are buds for next year or, you know, there is always something happening, in that, so it’s… It’s very special and it’s really sort of fed me. You know? And it repays. And what is lovely is that, you know, people enjoy it so it’s something to very easily sort of share. Yeah… So, I love going out and sweeping up the weeds, the leaves. That I didn’t do when you came, I should have. I suddenly realised I should have. Anyway, but I didn’t, I hadn’t totally manicured it. It’s really really special and, you know, as kids we were really lucky in terms that we had, or my parents had a gardener, Gardener Hill, and he used to breed auriculas. He named a few after my mother. Which is sort of extraordinary. He would take us to the, sort of, the Natural History Museum. Which was wonderful, you know, it was like kind of… I’ve always had this love of nature and we were fortunate we lived in Birmingham – I was born in Birmingham – but my parents, you know, we used to go to north Wales, ‘cause north Wales is the nearest coast to Birmingham. And we would go and take over a boarding house. And then, you know, friends, relations would come and stay and then my parents decided this was silly, you know, it was so expensive but why didn’t they buy? There was a relatively expensive house comparatively. So they bought a house there, so we used to go down and spend our, sort of, you know, Easters there and Whit there and summers there and, you know, my father would go back to Birmingham to work but we would stay which used to drive my mother mad, so every so often she’d get really angry and put pudding basins on my hair and give us a haircut as punishment. Good old Golda. But yeah, no no, it was really, it was ideal. And my father loved trains, he had a train set, which sort of used to come down off the wall a bit like my tailoring table, come down off the wall and there was a central hole where he could be, you know, directing the traffic and he’d have all these trains going around. I mean, what was interesting was it was just track. He never bothered to, you know, some people, you know, create landscapes and what so… No, no. For him it was about track, it was about the actual engines and the trains and I remember sort of, you know, when we moved from the house in Birmingham and they eventually sort of moved to, out to, to a place called Knowle, then Lapworth and he had a little, a Z-gauge, which is a tiny train set, that literally was on a board that could sit on a table and then be put to one side if the deck was needed. So, he always, you know, his train set was really important to him.\n
\n\nHow it [the group that supported the miners] came about? Basically. There was two people. Mark Ashton and Mike Jackson and both of them worked at switchboards, so they were sort of connected and they decided that - they were highly political, you know. Mark was a young communist, Mike was always sort of, you know, a member of the Labour Party, trade unionist to the core, both of them – and they decided that when Thatcher was attacking the miners that they needed, you know, the miners needed support and it was then a question of how were we going to, where were we going to put our support? Because we needed to find sort of colliery or collieries where maybe there were connections. Well, it just so happened that in south Wales, the south Wales miners had already had connections with the young communists so there was already this kind of connection between communists and the South Wales coal fuel, so when it came to organising that where would we go to offer support that would be the obvious place because there was already a connection so what happened was that Mike Jackson sent a letter… Now in the film - there’s a film called Pride - it’s a phonecall. It wasn’t a phonecall, it was a letter that was sent and what was interesting was that Sian James told us, probably about sort of ten years ago, what actually happened. So, the letter was received by the community and they sort of received it and they were reading it out and there were all the batty-boy jokes and all of that and all of a sudden they kind of stopped and thought: ‘What are we doing?’ Now, this is a group that is highly political anyway in terms of, you know, their politics. In 1923 when the mines were privately owned, there was a strike and the mine owners brought in Galician miners to break the strike. When the Galician miners arrived there and realised they had been brought in to break a strike, they joined the strike. And there is a row of cottages called the Spanish Cottages named ’cause that’s where they lived. So, they have this politics. When Mao Tse-Tung finished the Long March they sent a telegram to congratulate him on completing it, completing it. I mean, so, you know, they’re absolutely rooted in politics. So, they stopped and thought: ‘What are we doing with all these sort of jokes? No, we will accept their money.’ And they said to everyone: “If you have a problem with the gays , as we were called, the gays coming down, you will know when they’re coming and you just make yourself scarce. And basically, we had no idea ‘cause we were just welcomed so warm-heartedly, you know, so like I say it wasn’t until recent past, you know, once the film was out that one heard what had actually happened whereas in the film it’s a telephone call and, you know, they get to meet.\n
\n\nHow could I describe myself other than… I don’t think about, sort of, I just like… Just a regular bloke. No I’m not. I mean, you know, I’m opinionated but I’m very loyal. I am loyal. So, like you know, I have, I have no friendships from when I was at school, but I still have friendships from when I was at drama school, so from 1967. They’re… and I am. I am very loyal, but I am my mother’s son and she was… She could be hard. And I can be hard, you know? Demanding. You know, opinionated. But at root I’m sort of alright, I just think, you know… I don’t know. How on earth can one sort of describe yourself, you know? I can’t say 6-foot-3 eyes are blue ‘cause I don’t going to have that I ain’t 6-foot-3 but… You know. I’m warm. I’m sort of generous but if I take against you god-help-you ‘cause I’m not nice, you know. Oh, I don’t know. Who knows?\n
\n\nYou should try my lemon drizzle cake… I mean, that was what was amazing was that I remember, sort of, Stephen Beresford ringing me up and saying: “Oh, hello Jonathan, the director and the actor who’s going to play you would like to meet you, is that possible?” So I said: “Yeah, when were you thinking?” And he said: “How about tomorrow tea-time?” Oh god, there’s just enough time to make a lemon drizzle cake… “Yes! Yep, that’s fine.” Because you can’t have people to tea without cake. And I remember, sort of, he arrived, and he’d got this amazing bouquet. “Oh, are you going to a wedding?” “No, they’re for you.” Thrusting this bouquet of cabbages and cabbage roses. I mean, just exquisite. So I said: “Where are the others?” “Oh, they’re at a costume fitting they’ll be along.” “Right,” I said. “You can come in, you can have tea but no cake ‘til they arrive. So, we’re chatting away and then the doorbell goes, so I go to the door and this man thrusts out his hand and introduces himself as Matthew Warchus, the director, and over his shoulder I can see McNulty from The Wire and that’s when I knew it was Dominic West. Amazing. So came in and Matthew was brilliant he just, we were all sitting down and we had tea and he as just asking Nigel and I to tell about our histories and how we met and just, you know, our politics blah blah blah, which we did. Then after about an hour or so Matthew, Stephen said: “Why don’t you take Dominic out to see your garden?” ‘Cause he knew how I loved the garden. So, we did. We just went out and chatted, he’s really, just a… A genuinely lovely lovely mensch. And that was great and I suppose if there are any characteristics of mine in the film then he got them from, you know, outside in the garden. But yeah, so…\n
\n\nI think that there is so much misinformation and I think what is really, really important to understand is that we now have, we have no medic- no no vaccines, you know, it is amazing around this COVID the difference between HIV and COVID in terms that COVID there’s been this vaccine in no time at all, whereas, you know, there is no vaccine for HIV, for whatever the reasons and I think that it’s probably because COVID is so quick, in terms of you get it and you present symptoms and then: bang. Whereas HIV is a slow-burn, so it can take at least 18 months before you necessarily show any signs and even then it becomes a longer way, I think, of actually getting ill and your T-cells being depleted and opportunistic infections… And there is, you know, amazing advances that have been made in medication...\n
\n\nI have a theory about why these advances in medicine materialised when they did. When Thatcher was told by Norman Fowler - the health minister at the time - that HIV had entered the heterosexual community, she freaked. What he didn't tell her was that it was in the heterosexual intravenous drug users of Edinburgh. If she’d have known, I don't think she’d have acted quite so quickly.\n
\n\nBut the big thing is this whole thing around stigma and that is the battle. That is what needs to be waged. And I think it’s really important and that’s what I think is so important about this project, is that the more that we talk about it, the more that we’re able to be open about it, the more that people get to understand it that we don’t have three heads, that, you know, it is incredibly difficult to pass this virus, it requires, sort of, you know, the needle-stick or just, you know, some way that it’s got to get into the bloodstream, whether it’s sexually or what-have-you, you know. So… But, there is so much misinformation that this stigma has appeared and it is the stigma and sometimes it’s self-stigma that it is what needs to be battled and the way I think, the best way of battling it is in terms of talking about it and, you know, it’s in a way the forgotten epidemic, because there is the medication, you know, which is fine for, you know, people in the West who get access to it but there are you know, loads of countries that don’t have access to it or that the drug companies have, you know, patents and they make fortunes from it, you know, whereas there are amazing, generic drugs which are relatively, in comparison, inexpensive. Well, that is what is needed and, you know, it’s like really important that these vaccines, you know, become, you know, accessible to everybody. Globally accessible, not just to the rich countries around. So, I think that, for me, the most important thing around HIV is about stigma and is about dealing with stigma and is about talking about it and getting people to understand, you know, that… Yep.\n
\n\nI’m passionate about educating the next generation about living with HIV. I’m one of the Terrence Higgins Trust’s Positive Voices, and I visit schools to talk about the misconceptions surrounding the disease. Sex education was so damaged after Section 28, the law enacted by Margaret Thatcher prohibiting schools from ‘promoting’ of homosexuality. I think it’s still damaged, but what's amazing is the number of young people that know their sexuality and are out. That is phenomenal.\n
\n\nWhen I was diagnosed, I didn't think I’d have a life. And if I hadn't have made the choice to go on that demonstration and meet Nigel, I can’t imagine how it would be.\n
\n\nHow do I feel when people call me an inspiration? I’m just lucky. I’m flattered. I just live my life the only way I know how.\n
\n"},{"id":"opipo123","title":"José","href":"jose","mainImage":"jose.jpg","images":["photo-55.jpg","photo-69.jpg","photo-74.jpg","photo-75.jpg","photo-77.jpg"],"audioFile":"/static/audio/jose.mp3","shortDescription":"Jose's photos","longStory":"\n\n Hi, I’m José Mejia. I’m a brown, gay man from Colombia, hence my accent. And I, yeah… I work, love, enjoy, live, dance, not very good but I do, and that’s it.\n
\n\n When I think of home I get, like, a cosy feeling, that’s kind of the first thing that happens. I need to have that comfort. That’s the first thing that comes to my mind, that comfort, calm, etc. It’s just, home has always been like my safe space. Yeah, I think, I think as a gay man it was a place where I used to hide but also protect myself I guess. Yeah, as a young gay man from being bullied at school and things like that, so home was always like a safe space for me and the same happened for me then later on in life with my HIV-diagnosis, the same. It was where I used to hide and be myself and process things. It’s a place where I process, where I explore, where I sort of find myself. Yeah, and then more in terms of visually I think green, I like plants a lot, so I like it to be green and airy. I like the windows open and so, so, that’s why I struggle in the winter when I just feel like I’m trapped and there’s no air flowing, and… But yeah, what else? Yeah, I think it’s where I can be with myself but where I can also host people and invite people over and feel comfortable with people around and yeah, it’s just a space where I feel comfortable I think.\n
\n\n So I think in order to feel at home I need like… Quietness, like I, yeah... I tend, my space tends to be very quiet. I play music but in many other times I’m just in, like, complete silence and I quite like it. I think that’s one of the things I need to feel at home. I need to feel loved to feel at home, so I feel at home here in my house. I feel at home in my Mum’s house. I feel at home, in my partner’s house, I feel at home, yeah, in my dad’s house, in my sister’s house, where I feel loved, I think that’s one thing that makes me feel at home and… Yeah.\n
\n\n So… Yes, so it’s a small studio flat, a square-shaped studio flat with a really nice floor-to-ceiling window, wall-to-wall, so a really nice view of the city. That makes the space really bright, which I really like. You can see the view is really nice, you can see bits and pieces of Parliament and the, like, the London Eye and some few landmarks of the city. It’s full of plants, there’s a lot of plants. There’s, like, different sorts of frames with pictures that I’ve got from different places, travelling, or from magazines and things, stuff like that. Yeah, it seems like a ‘70s sort of flat and then yeah I think it’s very smart in terms of it’s a small space but it has all I need. I have my bed, it has a little sofa, it has my desk where I’m working at the moment because I’m working from home. There’s a nice kitchen, a nice bathroom so yeah, it seems to have everything that I need. There’s also a lot going on because I have a lot of stuff, like things, a lot of clothes, a lot of, like, crap I guess, like things. So yeah, there’s a lot going on but I try not to worry too much and I do my spring-clean every so often so there is more space. But it feels… Yeah, I don’t know. It feels vibrant and alive a little bit.\n
\n\n Yeah, I think my perception of home might have changed after my diagnosis. I’m trying to think how. I’m sure it did. I think, as I said before, I think partly, yeah, my diagnosis made me go more inwards and in that process of going inwards, whether it was, for good, for good and for bad, because a lot of it was good, it was a process of reflection which brought many benefits, but it was also a process of isolating myself which brought some not very good things. So in that process of going inwards and going more to myself and hiding and like sort of sheltering a lot, well home was really that space where I could do that, you know, where I didn’t have to face the outside, where I didn’t have to face other people, where I didn’t have to face the reality of what was happening and the things that I was living. So, yes, I used to go to the clinic and I use to hate it and I used to come back home and it was that space where I could just cry and cringe and hate and be annoyed with myself and be annoyed with the world, without needing… Yeah, without needing to put that mask on, or put that face on, or that smile and just know I could be myself and that was what I did at home was process and reflect at what was going on. So, yeah, I think it did. I think probably before the diagnosis it was more of a little bit of a party place, I guess. I was young, I was very young so I was still very social and stuff and then after the diagnosis it became more of my sort of temple rather than a party-place, yeah of course. Then with the years and moving forward and those things and I got to a better place – well, I still make parties and I still invite people and I all of that – but yeah, home became more of a temple for myself and my body and my mind to be honest.\n
\n\n So I think a positive reaction to know that I was living with HIV… I mean, I think they didn’t happen very quickly. I think it took me many years to find the positive things of living with HIV. I now, on reflection, can say that a lot of things are positive, like my lifestyle has changed for the better. Yeah, I think I feel medically more looked after than a lot of people. I think the one thing that I knew from the very beginning – and it just wasn’t the right time then – is that I wanted to work on the area, that I wanted to learn more and I wanted to do something about this. And I verbalised it to the first doctor that treated me and he said: “That’s great, keep that in mind, just keep that in mind.” And I did that, I hold onto that thought and that happened many years later.\n
\n\n So I think the other positive thing is that it has given me a career, a professional thing to do, at least for a few years in London. And I think the other great, well, the other two things that I find great is that it has made me a resilient person. I feel much more resilient than I used to be, I feel now that I can face anything. I think that I have gone through very dark things and the whole process was very difficult and it has just made me stronger, I think. And the other thing is the sense of community. You know, I firmly believe that I belong to a wide and diverse community of people living with HIV and whether I know those people or not I feel a part of that community and I felt welcome and I felt embraced and I felt nurtured and I feel looked after. And I try to do the same with others because I feel a part of that, so yeah; I think that’s been the nicest thing from the whole thing.\n
\n\n The community of people living with HIV is a safe space. It is for me. Yes, I’ve always felt protected and I think I… When I think… I mean, I’m not saying there’s… There might be mistakes and we might think as a community that we do wrong and there might be things which as a community that we disagree on, and we don’t agree with one other and… So, I just don’t want the fact that I feel it’s a community doesn’t mean that it’s just cohesive and perfect and all of that, it’s… As any other community: complex, complicated and… But, I feel safe. I feel that we are looking after one another. I feel that… Yeah. And I think I felt very well- … Since I started, it was feeling that process of belonging to a community that would make me feel even more comfortable talking about my diagnosis, so… It was first realising that there was a community that I could tap into and then realising that I could be vocal within that community and I could share my story within that community and that my story was going to be welcome and that my story was going to be, yeah, just appreciated. I mean, embraced for whatever reasons, so yeah, I think I feel safe.\n
\n\n I’ve had many negative reactions. I mean, not many and then like if you think in perspective I’ve heard of others that are even worse so I mean… It’s hard to say because I don’t wanna minimise it but I don’t want to exaggerate it either so… It’s just been… There is negative reactions, or let’s say it’s not right to phrase it in negative and positive things. There’s been challenging situations that I’ve faced as someone with HIV, within my own family and the closest, yeah, my, closest family. No… Partly because of a lack of information and a lack of awareness and at that time my lack of awareness. So, it was really, so, we did a process together of learning about the condition and learning about the things that I was going to go through and learning about my medical, sort of, treatment and so it was a process that I did very closely with my family, of course, with separation and with reservation. I did my part, they did theirs. But it was a joint sort of work, let’s say, and I am very fortunate of that, but that came with some initial, yeah, uncomfortable and challenging situations and conversations.\n
\n\n I’ve had negative experiences dating and with other gay men. I’ve been stigmatised by and, or discriminated by other gay men. There’s been assumptions of the type of person that I am, the type of sex that I have, the type of behaviours that I engage in. Some of them right, some of them wrong. There’s been, yeah, rejection and guys telling me they’re not interested in having sex or dating someone living with HIV, like myself. So yeah, all of that’s been negative but even within that I’ve, like, yeah, the latest thing to happen not very long ago is that I had, like, a situation in which I was rejected or discriminated online and then probably a year later the guy came back and apologised and that was nice to experience as well and it was an opportunity to have an open and honest conversation about the whole situation but then there is… Yeah.\n
\n\n Yeah, I really appreciated, it was very… It talked a lot about him, you know, it was like I was very shocked when the whole challenging moment happened because it was bad and I heard things that I didn’t need to hear and that weren’t fair or okay. I, in those situations, I don’t stay quiet, I don’t just…. Yeah, if I get annoyed I’ll express how annoyed I am and if I get sad I’ll show how sad I am and, so I don’t hold my emotions I guess. But I also don’t feel that I have to change anyone’s mind or that I have to change anyone’s perception because I don’t, because that’s their problem and their process and I don’t mind and I don’t need to convince anyone about anything. I know where I’m standing. But, yeah, so when it happens, knowing that that happened without me having to be that person was quite nice and that he took- … Because he didn’t have to. He could have learned and changed his attitude or knowledge or behaviour but he could have not say anything to me but he came and with each other that was quite nice.\n
\n\n I think, my HIV-diagnosis have, in a positive way, affected my closest relationships. I think with my family, well, my family and in my closest family, with my Mum, my Dad, my sister, like, they all know, they’re all supportive or they’ve all been supportive throughout the process when I was within my darkest sort-of place and now that I’m in my brightest, sort-of, moment with the whole thing, they’ve been very supportive. They’re very supportive of the work that I do as well, so that’s also really nice. But I think in general terms it just brought us closer, you know, it was… Yeah, it was just a process of getting to know each other better and getting to know what we – ...and yeah, they didn’t have to either, they, like many other families do they could have just not engage or not care or rejected me, because you hear those stories, but they didn’t and they did their part in learning and educating themselves and I did the same so, yeah, I think the whole thing brought us together and we now have a much more honest and open relationship because of that. Yeah, and it was interesting because I think it was also being gay it was a sort of two-way process and I’m not saying they’re the same but I came out as being gay and then I came out as living with HIV, those two processes and for them it was like a realisation of just how honest I am, I’m just not good at hiding things. I just can’t live with secrets, that’s not my thing. So, I just didn’t do it, I decided not to do it and I think that was appreciated and that sort of… we built it from there.\n
\n\n And I think with my partners, with my exes, I have a little collection of exes – no, I’ m joking – but I have a few exes and I think… Yeah, with my exes it’s the same. There have been challenging moments or there was challenging moments with some of them but again, it was another bridge we crossed in the relationship and it’s been fine. I think it has also helped me build healthier… My latest, sort of, relationships or my newest boyfriend, it’s a healthier relationship because there was that level of honesty and openness from the very beginning and I think that helps, yeah, building trust and building rapport and getting to know each other quicker and in a more open way, so, I think… It has helped with my friends. I think I wouldn’t be here if it wasn’t for a very small group of friends that I used to have in Colombia who were the only ones I used to share things with in the very beginning and they just stick by my side, like, I get emotional and everything when I talk about it but they stick by my side and when I say: “I don’t want to do anything, I’m just going to stay at home, I’m not going to the party, I’m not doing anything,” and they were there like: “Come with us, come with us, we’re gonna pick you up, we getting there, you’re coming to us, we’ll see you here, come, come, don’t stay, come, do something.” And, like, yeah, it was annoying many times and it was difficult for me, at times I hated the idea of them knowing what I was going through but if it wasn’t for them I wouldn’t be here. They just hold me so much and they just hold the space for me so much and they just pick me up when I was down and they were just supportive and there all the time and, again, those were the relationships where I think I’m probably still very close, well very close in the distance I guess, but very close I had with all of them, I don’t talk often with all of them but it’s memories that I will always, sort of, cherish and my perception is they feel proud of how far I’ve come and of what I’ve done in terms of just my own life, just, just moving from that very dark place in which I was, at some point.\n
\n\n If I’m asked to describe myself I would first ask if they wanted to know about me, how I look, or what I’m made of, if that makes sense. Yeah, because I can describe what I look like and that might be easier than, than, actually, yeah, who I am. So it depends.\n
\n\n So physically I’m not too tall, I’m brown-skinned, I have, like, big bushy eyebrows. Yeah, I think I have a nice smile that I don’t use very often or that I use sometimes cheekily. I have, at the moment, kind of short dark hair but it kind of grows sort of, yeah, sort of different lengths. I’ve lately gained some weight so I’m looking a bit bigger than I use to but I’m sort of liking it actually and yeah, I’m just like, not thin, not big, just, yeah. Normal sort of complex. Yeah and my eyes are, my eyes and my hair are black so that’s kind of what I look like.\n
\n\n And then who I am and how I would describe myself, I think I’m… I think I’m a caring person. I think I’m very, sort of, passionate about things, for good and for bad. That passion sometimes drives me into action, sometimes it drives me into inaction. I just get so overwhelmed that there is not much I can do, yeah, I just don’t know where to start. I think I’m a mix of, like, being like, being very gentle but very rough. I can be very rough with my eyes or with my hands or with how I talk sometimes but I’m very gentle at heart and I don’t mean any… Well, yeah sometimes I get angry as well, but I think that’s the other thing I would say I don’t know how to hide my emotions, like you will know, you’ll know what’s happening. You’ll know… Yeah, you’ll be able to see how I’m feeling somehow. Either because I’m trying to hide it and I’m not very good at it or because I’m not trying to hide it and I definitely will tell you how I’m feeling. So I think I’m very honest as well. I think I’m very impatient or I can be very impatient at times. And… I’ve sort of allowed myself to be vulnerable in many situations or scenarios all through my life and that by association and that has come with other things as well, throughout, as an example, yeah, at times feel shamed or ashamed or both. And I feel calmer than I’ve felt before and, like, more at peace with myself that I’ve felt before. And that feels like quite an achievement from my youthness in which I just didn’t know what the hell was going on. So, yeah...\n
\n\n I think there’s just two things that I would like to add. I mean, is one don’t, don’t... One be kind, like, to yourself, to others. Two, like, sort of don’t judge a book by its cover and just like, yeah. What you see is not always what you get and I think there’s many layers to all of us, so, so dig deeper into all those layers. Well, with myself and with people again don’t judge me by these words or by these photos because there might be much more than this, that you might like or not but there’s more. And there’s always more in people and I think that’s, kind of, yeah… Important.\n
\n"},{"id":"po123dsa","title":"Josh","href":"josh","mainImage":"josh.jpg","images":["photo-35.jpg","photo-62.jpg","photo-63.jpg","photo-64.jpg","photo-68.jpg"],"audioFile":"/static/audio/josh.mp3","shortDescription":"Josh's photos","longStory":"\nMy name’s Josh Compton. I’m 26-years old. I come from Andover in Hampshire, but I currently live in Stockholm in Sweden. I am a Master’s student and a teacher at the minute, in, in a middle school.\n
\n\nHome is a very multi-facetical concept. So, I mean this is my home where we are right now. This is where I grew up. This is the one place that has been in my life, for my whole life. So I have a strong attachment to this house, to this village, to this town. But home goes… It goes beyond just that. So… Obviously there’s the expression ‘home is where the heart is’… At the moment I’m, as I said, I’m living in Stockholm. Is Stockholm my home? Is Andover my home? Is Leeds – where I studied at uni – my home? So I think home is, is the place, you know as we become adults it’s the place we decide to make our home. And we do that by establishing connections and putting roots down and making a life somewhere. So I think for me that’s… That’s what home is and… Yeah. A home wouldn’t be a home without family. So curious.\n
\n\nWhen I think of home in like a general concept then it will be here, where we are right now. And this place is a… Is a village in the countryside in southern England. It’s, for me home is... lush rolling hills dotted with beech and oak forest. It’s warm summer days and lots and lots of time outside. And cats have always been part of my home. I mean, obviously when I’ve not been living with my Mum or I’ve been, if I’ve been elsewhere then I’ve not had pets but we’ve always had pets here. But... I need to highlight as well because, because I live in Stockholm so there’s, so I have this dual-perception of what home is. And so this is… This is like what I could call my real home. And in Stockholm is kind of like my now home. And if I think about… Like, for example, if I’m talking with any friends here in England then I say: “Oh, I’m gonna, I’m going back to Stockholm on Sunday, I’m going home Sunday.” Then for me that’s a whole different concept of what home is. But I guess more generally speaking I would say, like: “I’m going back to Stockholm.” I wouldn’t say I’m going home because I am home here.\n
\n\nMany things did change, but what I classified as home never changed.\n
\n\nI mean it’s a physical change. Regardless of whether or not you perceive it. You know, I do have a virus in my body whether it’s controlled, it’s still there. So, there is a physical change. There’s also the… There’s the perception change as well that somebody who is diagnosed then lives because, well… I shouldn’t generalise. This is my experience. I’ve found that for years and years I was trying to avoid getting HIV and I was always thinking about what I can do to minimise my risk and then you get it, or then I got it and I was kinda like: ‘oh, well now what?’ So, I think also my diagnosis, personally, came at a time when I had a lot of other things going on in the background that were really significant. And, yeah, it was a lot to deal with because I felt that I had enough to deal with as it was.\n
\n\nBut, as we were saying previously about trying… This isn’t what you think when you’re diagnosed but this is what you learn as you live a positive, a positive life. You do find that there are still obstacles in the path. And it’s those little things that change. So… Like, I had, I was offered this job to go and teach in China and it was my dream. I’d been working towards it, studying Chinese for three years. I was quite good, well, I still I am I guess. Just a bit rusty. But, yeah. I couldn’t go in the end. So that’s just one way about… That’s just one example of how many different ways in which a life can change. But my concept of home is still the same.\n
\n\nI think here in the UK… I mean, I was actually diagnosed in Brasil believe it or not, and I was on holiday in Brasil whilst I was studying and living in Chile, so in a roundabout way I managed to, like, start treatment here although I was diagnosed over there. And here, much the same as in Chile and in Brasil as well, like I didn’t find any exclusion. I didn’t see… I mean, it’s not something that I go around proclaiming to people and it’s not something that I did go around proclaiming to people. So I kind of, in a way, I was never excluded from spaces but I felt that in certain spaces I’d have to be a bit cautious about what I said. And with this example that I said about China I mean, yeah. I had a job there. I was paying for my visa and it all fell through. So, in that instance that was a big exclusion.\n
\n\nI just, I feel like there’s so much stigma surrounding HIV and there’s so much expectation. Well, this is my perception. I feel that there is a lot of weight on young gay men’s shoulders about getting HIV and as I said it was something that I really tried to avoid. And then I got and I kind of felt like another statistic, like: ‘Oh another one.’ ‘Cause I was under 25 at the time.\n
\n\nAnd also because, people -. The public knowledge isn’t there. So, I guess it’s kind of like if you’ve got, if you’ve got some kind of progressed form of cancer and then you go telling everybody the ins-and-outs of your treatment and what that means and, like, people… Like, you just wouldn’t do that because number one, these people don’t need to know all that information, number two, it’s probably very scientific and a lot of people won’t follow and with HIV it’s kind of similar. You don’t, we don’t need to explain to other people what it is. But… Well, possibly some cancers do but cancer don’t have the same stigmatisation as what HIV does. So, that’s a difficult one. And there was a time, after diagnosis – maybe like a year after diagnosis – that I was like very happy to speak about it in conversation even with people I didn’t know very well. Because I wanted to be one of those, like, stigma warriors but I got tired. It’s something now that I currently, like, in this phase of life that I find myself I’m not happy with the fact that I’m HIV-positive but I can’t change it. So, I just… Obviously I’ll talk about it with my close friends or, you know, if I’ve got a doctor’s appointment “… oh yeah guys, I’ve got a doctor’s appointment or whatever,” but it’s not something that I’ll just chit-chat about because… Yeah. People judge.\n
\n\nI found, in my personal experience, that after I was diagnosed I… My life completely changed because it was something that I tried to avoid for so long and… I didn’t get it by being a saint. I was taking a lot of risks and I was exposing myself and when I kind of woke up from the trance I was like: “Josh, why are you behaving like this? Stop.” It was too late.\n
\n\nYeah, so basically I feel that I have, that I put the label on myself, like… You’ve been diagnosed with HIV therefore you need behave in this way. And since my diagnosis I’ve really struggled with lots of things. In a certain perspective you can see that that’s me creating like a self-fulfilling prophecy. Okay, I’m HIV-positive therefore… Which isn’t the case. Obviously my personal situation is like an interconnected web of many different things. This is just like one of the strands.\n
\n\nI think also… at least in my experience, I feel like I had a very good sexual education when I was in school and I think that most ‘90s kids in the UK could probably say something similar. And so, like, part of this neo-liberal political economic model that we’ve got in place, like a major factor of that is the individualisation of responsibility which is like a political stance that the Government is taking, so the Government – and I’m not saying that the Government should protect us from HIV or that they should do… that’s not what I’m saying – but what I’m saying is, like, with making people responsible for their own actions and choices and whatever, then it puts the responsibility on the person if something goes wrong, such as a diagnosis. And so I think that with HIV because of this, like, taboo, because it’s sexuality and because of, like this, political programme or whatever you want to call it, as well as many other factors that I’ve probably missed… it makes it difficult for people to talk about it and for people to break down the stigma and also I think, like… The Government in the ‘80s and how they dealt with the AIDS pandemic, like… I mean I didn’t live it, I wasn’t there. I can only go from what I’ve heard other people say that they lived or experienced. And from what I’ve seen.\n
\n\nAnd you know, there’s… I don’t know if you’ve seen the film ‘Pride’? Yeah, so there’s a bit where – what’s the young kid’s name? Is it ‘Sutton’ they call him ‘cause he comes from Sutton? And he lives with like just a normal middle-class family and they’re sat around watching television and it comes up, like, AIDS, and the father’s like “… anally-injected death sentence.” And it’s like: not necessarily. So there’s a whole image that’s… that was created due to the political model of the time which was Conservative, right-wing, neo-liberal, traditional, like… black and white, male or female, like… And society has progressed but the way of dealing with this virus is, I feel it… In certain respects of course it’s progressed a lot but in the way that it’s viewed I still think it’s... I mean, it’s always going to be tainted by that image because that’s how it came about.\n
\n\nYeah also if… At the end of the day the original image and message that was put out there was by the Government and the media, like probably from order of the Government. Are the same powers going to do something about it now? No. Any change is going to come from the bottom up. So, this is where on a societal level I feel it’s different to an interpersonal level because I can be talking to my mates and you know with some of my closest friends we make jokes about the fact that I’ve got this and it’s not an issue. But then with some of my other friends like I wouldn’t even dream of mentioning it. So, everything’s contextual, everything it varies. But in order to have, like, the public knowledge that I feel is lacking about the virus. The only place it can come from is up, so…\n
\n\nYeah, I’ve been reading a lot into – well, a lot – I’ve been reading a bit into philosophy like the past couple of years and it’s interesting seeing that if you look at society as being a base – which is us – and then a pillar which connects us to the, like, overarching superstructure – which is, like, pretty much anyone with power, so like the State, pharmaceuticals, oil, landowners, techies, in like a contemporary context, and everything that we’re… Everything that we live and everything that we do and everything that we see is a created reality according to the benefits of... or according to the viewpoint of those who benefit most from the system. So, I think that, like, the reason why this controversy came about is because in the ‘80s obviously people were struggling for queer rights and things like that. It was very easy to scapegoat that group of people. And today we have a whole host of rights that we never could have imagined having back then and society has progressed and I can walk down the street holding hands with a guy and probably not get any harassment. But this… We’re still part of this structure, so…\n
\n\nAnd there are so many different parallels that you can draw and I think, like with corona, I think, like there are so many things that if you like read between the lines or if you look at the fine print or if you don’t just listen to the mainstream media, if you like look around and question then – at least this is my opinion; I’m sure there are many people that would say something else – there are… Something’s not quite right. I feel like an image is being created for a certain end and something very similar happened with HIV.\n
\n\nYeah it… It’s like me coming back to the UK from Sweden where we’ve had pretty much all the freedoms that we need, come back to the UK and I’m having a discussion with my Mum and she says, Josh, like: “You can’t go out. If you go out and the police find you they’ll fine you.” And I’m like: this is a dictatorship.\n
\n\nOkay. So I mentioned I was diagnosed when I was living in South America and then that was in my sandwich year whilst I was at uni and I was at uni in Leeds. So when I finished up in South America I spent the summer here in Hampshire and then I went back off up to Leeds and I went to the virologists – is that what you call them in English? It’s, er… There are a lot of words that I learnt first in Spanish and I’m, like, virólogo? Virologist? So I had an appointment with my virologist in Leeds and I just like broke down into tears. And they’d said to me a couple of times before, like, let’s hook you up with Leeds Skyline and Leeds Skyline is an NGO that works with the HIV-positive community in Leeds or in West Yorkshire and… I always said like no no no no no, I don’t need that, like I can manage this. I also had a certain image about what that place could be like and the kind of people that might go there and at the time I was like, how old was I? I was 22, you know I was a uni student, I didn’t… The image that I had didn’t represent how I saw myself. When I broke in, burst down into tears, as I just said, the nurse was like: “Okay, Josh. I’m going to call them and you can speak to them and if you decide that you don’t want to go then that’s fine, but I really want you to speak to them.” And I spoke to them and they came to the hospital and they picked me up and we walked a few blocks and we walked to their office and they told me about this, like, group therapy session that they have called PACT, which is Positive and Coping Together, which is a GBT men’s group for HIV-positive men. And I speculatively went to one session and I felt incredibly uncomfortable because I was the youngest person by about 25 years. They had a certain queer charisma that’s characteristic of gay men of that age, that I didn’t identify with and I felt uncomfortable, but I went for a couple of weeks.\n
\n\nMy Mum taught me when I was kid like that first impressions are super important but if it’s something new then try it for a good few weeks and then decide. So I went, for a good few weeks and I… It used to be the highlight of my week. Eventually. Because I found a space in which I could like really speak freely, about what I was living and what I had lived previously to that. And… Not only did we have this space where we offered, like, I don’t know, like sessions to deal with, how to deal with their mood, and sessions that dealt with prioritisation skills and whatever, like workshops, but we also had, like, heart-to-heart sessions where the co-ordinator would go around and say: “Okay, like, person 1: how was your week? Person 2: how was your week?” And, that year of my life was very very fucking difficult. And so it created a space for me to be able to voice these things that I was going through because I couldn’t speak to my family about them, because I suffered some horrible discrimination from my family when I came out with HIV.\n
\n\nSkyline is like the most positive thing that came out of my diagnosis and it’s something that I’ve constantly looked to replace when I’ve been somewhere else. And when I moved to Spain the first place I went to was – what’s it called? The Comité Anti-SIDA – and I was like: “Okay guys, like, I come from Leeds and they have this organisation and I had a psychologist before and I used to get massage sessions and group sessions and what can you guys give me?” and they’re like, they went: “We don’t work like that.” They basically… Obviously they have a certain degree of like pastoral care and support services that they can offer. They’re more of like an info provider and they’re more – I feel, at least – they’re more political activists than what they are, like, a care-giver. I feel like the care-giving goes on the side.\n
\n\nAnd then when I moved to Stockholm as well I was like: ‘Okay, like, what organisations can I find that can support me?’ Because I found that it wasn’t just PACT at Skyline, but it was the other services that they offer that allowed me to interpret what I was living and what I had lived because I was sexually abused as a child and… That basically fucked everything and… It wasn’t until I started going to Skyline that I accessed that period of my life as abuse. It was a period of my life that at the time I just ignored and like never wanted to speak about it again and then it – after having gone to a few sessions in Skyline I was like, the penny dropped and boom, like, okay this is an issue that I need to deal with. It’s an issue that I haven’t been dealing with properly and it’s an issue that has caused me other recurring issues but, yeah, these… Rome wasn’t built in a day. And these issues can’t just be unpicked in a matter of months, it’s going to take years of work, so…\n
\n\nI see a psychologist in Stockholm who I’ve been seeing since July and I am going to be, or I started in December, to see a nurse and a doctor once-a-week as well and we’re going to drum up some kind of plan or whatever that will deal with, like, the psychological trauma, the drug issues and then everything else that comes because I have psychological trauma and drug issues. But yeah… Yeah, as I said it’s all like an interconnected web of things\n
\n\nYes, I found places. But no, I haven’t found the support just yet. And that’s part-and-parcel because of many different things. Corona, being one thing. Another thing being my timetable’s not been matching up with the appointments being offered me. There’s one organisation called NOAXIKE and they – I don’t know if it was an email or I just saw it online - but they have like a young person’s service or whatever, but in order to be, like, welcomed in, you need to have like a – what do you call it? - like an orientation. Which in corona times you can’t have. And so they tried to have like a digital one instead. But obviously I’m working full-time, I’m studying part-time too, I’m trying to find time to have a social life. So, I have found the organisations and actually in December we left on a note to say ‘okay, let’s get in touch in Jan’, so the ball is rolling.\n
\n\nThere’s another one… Oh yeah, it’s called ‘PositHIVa Gruppen’, like positiva which is Swedish for positive and HIV in the middle, PositHIVa Gruppen, and they have a group called Young & HIV and this group they, like I’ve been to a couple of their events actually. We had an art therapy session in October or November, which was rather delightful and we were supposed to go in December to like a house in the Stockholm archipelago and stay for the weekend but it got cancelled. Corona-cancelled. So, like there are a couple of things that are kind of in the pipeline that haven’t really surmounted to anything just yet but I’m in like the whats-app chat group for this Young & HIV group. I don’t know any of the people there yet because we’ve not met, but these are things that I know will unfold and will, like, blossom into something this year. But I think as a young person and as a person who comes from a background where there’s been trauma, especially in the childhood, I think it’s imperative for me to find that support because, yeah… I just can’t manage. So… And also, like, I can’t expect, well… I do expect but perhaps I shouldn’t expect my family to offer that because you know they’re not trained in this stuff, at the end of the day. So… Hm.\n
\n\nYeah… Any affect that HIV had on my closest relationships I’m going to say was temporary. I’m not sure if those relations would say the same but that’s how I see it. And initially, when I came out to my family and I told them that I’m HIV-positive – and I’m happy for this to be published or whatever – yeah I was met with discriminative comments and a lack of understanding and absence of care that I needed. But then, you know, over the following months, I could see that they tried to make things right but I wasn’t so perceptive to them trying to make things right because I was too hurt. And in my own way I still am. But that’s only family.\n
\n\nAll of my friends, like, they only expressed concern. Like: “… we’re concerned, we’re concerned that your future might not be so healthy.” Whereas my family was more the image that being HIV-positive carries with it. So, I would say that all of my… None of my friendships were affected by it and if anything it kind of drew me closer to my friends. It allowed, it encouraged me to be more open with them and also, like, for example my final year when I was in Leeds I was living very very promiscuously as like a coping mechanism and, you know, there’d be guys coming in and out all over the place, whatever, and they would never express like discontent with that or like disgust with that or anything. All they’d say is like: “If you’re behaving like this because you want to, fine. If you’re behaving like this and it’s covering, like, something else up then we want to help you to fix that.” So I would say, if anything, it kind of strengthened my friendships. But, yeah, it did definitely temporarily have a negative impact on my family relations.\n
\n\nThis past year in Stockholm I have been in a very bad place. I was kind of love with this guy who I met studying in Chile who lived in New York and I went to New York to see him in March. And I was in a really bad place mentally at the time. I wasn’t happy living in Sweden, I had no money, I wasn’t happy with my career prospects, with my future outlook in general. I was taking a lot of drugs. My mental equilibrium was just like not there. And when I went to visit this guy who I was, like, kind of in love with, he just wanted one thing and I wasn’t in the position to give him that thing at that moment and I tried to explain that very expressly and because of the way that things turned out regarding consent between the two of us, I came back to Sweden or I went back to Sweden heartbroken and in a worse position than I was in. And then I lost my job in May and I had to find another one which I did get so that’s fine, but… All of these things really knocked me sideways and so I wouldn’t say that my space that I have in Stockholm is my safe space.\n
\n\nAnd because of the turbulence in the relationship with my Mum, I also wouldn’t necessarily say that this is my safe space either. So, I guess, like, my safety that I construct for myself is routine and it’s more of a – what’s the word I’m looking for – it’s more of a conceptualised vision of space rather than a physical vision. And so I’m feeling safe if I’m exercising like five days a week. I’m feeling safe if I’m sleeping properly. I’m feeling safe if I’m eating properly. I’m feeling safe if I’m not going out and getting shit-faced and going to orgies and having unprotected sex with people I don’t know and whatever. And as soon as one of those things gets knocked off then the safe space, be it not physical but conceptual, disappears. So, yeah. I think… I mean, I’m moving house next week when I go back to Stockholm and with all these things that I have in place with the doctors and the nurses and like I reached out to work for support as well and they offered me support and with everything, then I’m hoping that I can… My new physical space can be my new safe space. We’ll see what happens.\n
\n\nI think it will because I’ve got no more patience to deal with it, not being that way. So, I think it’s time for that lasting change.\n
\n\nI would say I’m very… I’m very outgoing, I’m very chatty. I’m very friendly. I wear my heart on my sleeve so I’m very emotional. I’m very sensitive, very fucking sensitive. I’m… I have so much love to give and that is shown in how I relate with my friends, in how I might touch my friends like, instead of, like keeping a… Especially living in Sweden which is a society very much of personal space like I’m always, I’ll put my hand on my friend’s shoulder or I’ll like play with their hair. I’ll use little words of affection, I’m a very affectionate person.\n
\n\nBut also… I feel like I have a lot of contradictions in my life and those contradictions sometimes lead people to have an image of me that isn’t accurate or isn’t wholly accurate and sometimes because of the coping mechanisms that I have generated for myself to deal with my childhood traumas and then my diagnoses and all these other things that have happened in my life… I feel that simultaneously it creates, it creates a different, a different like version of me, kind of. You know, if I’m, if I’m in a bad place and I’m making poor decisions and I’m going out and buying drugs and then like staying out all weekend or like not eating properly or whatever then the people that I meet in that window of time will have that image of me. But actually, like, you know I’m Mr Compton, I’m a teacher, I have a position of respect in the community and I go to school and I banter with the kids and… I received a gift actually for Christmas from school and it’s a little, hand-drawn, like, framed piece of paper and some of it… A kid has just drawn a stick-person and it says ‘Mr Compton you are strict but you are right.’ So, on the one hand there’s Josh who, like, goes out and parties and… I don’t need to go into all the ins-and-outs but… And then on the other hand there’s teacher Josh and there’s student Josh and there’s family-guy Josh.\n
\n\nIt’s not just, yeah. It’s not just one label, one box, one category. It’s, you know, we are diverse and dynamic beings, we’re constantly changing. Oh yeah, like how I would describe myself. But yeah like… I’m very outdoorsy. I like to go hiking, I like to go camping, kayaking, cycling. I’ve even started running outside thanks to corona, ‘cause I can’t go to the gym. Even if it’s minus-2 degrees. Yeah, like… There are so many things… I love to bake. I’m always baking. I made a banana bread just a few days ago. I baked mince pies in Sweden. I have friends over and I, like, it might be like six or seven friends and I’ll make a massive Thai curry. Or I’ll do like a huge Shepherd’s Pie or something and we’ll have drinks and we’ll play cards. I’m very, I’m very social. I live off being with other people and keeping busy and doing things and getting out there and… I have a thirst for knowledge. That’s why I love to travel. That’s why I love languages as well. I speak twelve languages.\n
\n\nSo, to like some degree of fluency, bi-lingual English and Spanish. Totally. And then to varying degrees of fluency we have French, Italian, Portuguese and Swedish. And then I can speak, like, kind of good but now very rusty Mandarin. Bist keine Deutsch sprecken. Because I live in Sweden. And all the Swedish has pushed the German out of my memory. Because they’re so similar. I mean, Swedish is very similar to English anyway. But I had a couple of German classes at school that I was covering and I was talking to the kids and I was trying to speak German and I just spoke to them in Swedish and they were like: “You do realise you’re speaking to us in Swedish?” And I’m like: “Ah!” And then I can speak, like, kind of like basic conversational Polish. Like introductory Arabic, Hebrew and Mapudungun which is the language of the Mapuche people from Chile, which I studied when I was out there studying. So, yeah… I like my languages. I really want to work on my Arabic. I need to get my Chinese back up. And I’d like to learn… I always said Hindi, but maybe Sanskrit would be a bit more useful because if I learned Sanskrit then it would be easier to understand the other Indian languages I think.\n
\n\nI was at the Bishopsgate Institute and then obviously when I left London that was that. I mean, Stockholm has a massive Arabic-speaking population and it’s very easy to learn in Stockholm, but I don’t have the time at the minute, so, you know, I’m taking some time last year and this year to focus on me and my things and my progression and my, like, personal development and until that’s done I’m probably not gonna… I mean, obviously Swedish will come because I’m living there but I shan’t be embarking on any new learning adventures. I don’t think.\n
\n\nI… London’s so cosmopolitan, obviously, and I never met anyone from Mongolia until I went to Stockholm. And there are a lot of Mongolians in Stockholm. And I was in a pub with a friend of mine and there were these, like, kind of central, East Asian-looking people that were speaking a very funky language and I was like: ‘What the fuck are they speaking?’ And I listened and I listened and I listened and I… So many new sounds that I hadn’t heard before and I’m like: ‘What language is this?’ And I asked them where they were from and I thought they were going to say something like Tajikistan or Kyrgyzstan and they said they were Mongolian and I was like: ‘Ohhhhh.’ And ever since I spoke to those people and I asked them where they were from and, like, like I can figure out… And it was two women and they said: “As long as you don’t think we’re Chinese then that’s fine.” I said: “No, you don’t look Chinese.”\n
\n\nBe it necessary or not, HIV incredibly negatively impacted my life. It turned everything on its head. My relationship with my family changed, albeit temporarily, but the.. on my side of the, of the coin I guess, the temporary changes that then kind of sorted themselves out for me had more longer-term impacts. And yeah. Ever since that happened, my relationship with some members of my family is different. It.. That doesn’t mean to say that it can’t change again in a positive light and that is what I’m looking, at what I’m working on now. But I think… If all of a sudden you’re diagnosed with asthma, you’re not going to turn around and say: “Oh, fuck. My life is ruined!” You’re not going to think: ‘Oh, like I can’t talk about this in public or I can’t, I can’t, like…’\n
\n\nYeah, or be an activist for Asthma UK or whatever the charity’s called. But, you know, as soon as you decide to affiliate yourself with… What’s the one that we have in the UK? The… AIDS, HIV/AIDS charity? The national one? Terrence Higgins Trust, that’s the one. Oh my god, I’m becoming a foreigner in my own country. The… yeah, like as soon as you affiliate with that and you say and, I don’t know, you’re at work and your colleagues invite you to the pub and you say: “Oh no, I can’t. I’ve got a meeting with the Terrence Higgins Trust.” Like, it’s, that is like telling them that you’re positive and it’s an invitation for them to create a judgement about you. But the reality of HIV, if it is well-managed and if you’re medicated as you should be, and if you’re undetectable then HIV is much easier to live with than asthma. I know because I have both. Or diabetes. And, you know, there are people who will happily say like: “Oh, I can’t have those biscuits I’m diabetic.” But there’s no way in hell I’m going to turn around and say: “Oh no, I can’t do this because I’m HIV-positive.” Because number one, there’s no need for that anyway because it doesn’t change anything but number two, because you don’t want to invite those people to make those judgements. And so, yeah… What you said earlier about inclusion and exclusion – and like the discourse about creating space - I’m a human geographer, so I think a lot about sociological issues and space all the time - and when I was, in a way – temporarily or not – rejected by some members of my family I had to find another way to create a space that was safe for me in order to be able to progress and process everything. And…\n
\n\nYeah. I mean, in hindsight, potentially I could say it’s the best thing that ever happened to me because it allowed me to see my life through a different lens and highlight long-standing issues in my life like my child abuse which I didn’t access as child abuse until I was positive and I began to question: Why am I positive? Why did I take those risks? Why did I put myself in those situations? Well, let’s trace it back.\n
\n\nSo, I mean it created a very very negative outlook for me and especially when I lost my job in China, which I had been studying specifically for, for three years and I was… You know, I fucking studied Chinese in Chile from Spanish in order to, like, facilitate this. You know, I was really destined, like, not destined, but like I was really driven to go and do it and then I couldn’t because of HIV and that leads you to have a very poor image of yourself because there’s also the voice in my head that’s like: ‘Oh, you could have used condoms.’ This was my case, obviously there… Not everyone who gets HIV gets it because of sexual decisions they take. But in my case that was the case. And, it’s so unnecessary to have any of this discontent and any of this heartache with an HIV diagnosis. So… but you know, this is what, this is what we have to deal with. And this is why I want to participate in this project, because it’s – as I said – true, like, lasting change has to come from above but that is absent. So, the resort that we have is grass-roots, bottom-up, doing things like this. So… There are so many different things that happen all around the - . I went to New York, as I said in March, and I walked past the AIDS Memorial. You know, that’s another way. There’s so many different ways of, of creating a new reality for HIV-positive people. There’s no reason why it has to be a negative reality.\n
\n\nMaybe not necessarily the stigma but breaking down the, like, social myths. Yeah. And, like, I’ve done many things in my life that I’m not proud of and I don’t, maybe there are some people who could consider that when I talk about having been sexually abused as a child I use it as like, as like a get-out-of-jail-free card, like, oh, well, you know, I lived through this so therefore, you know, it’s okay. And it’s not. But it helps people to understand and it’s through understanding that we can, we can create better futures and brighter futures because, I mean, if I didn’t get the grades I got, thanks to my Mum who really encouraged me academically at school, I don’t know what the fuck I’d do stuck here in Andover. Working in a factory or a warehouse and having to just get on with a mundane life.\n
\n\nSo, it’s important that we take these things into consideration and obviously as a teacher, I got into education because I really enjoyed school. At the beginning. But I’m still in education because when kids are swearing at me or when kids are being little shits and cellotaping their eyes closed and trying to cut it off with scissors or any sort of attention-seeking behaviour it’s because there’s a problem. And, I’m just a substitute teacher, like, I’m not even like a contractual worker. I don’t have a salary. I’m just paid by the hour but when I go to school in Sweden and I see that this kid who’s usually problematic is being, like, extra, or he’s starting fights or he’s… I should probably say ‘they’, or they are like just being more, more difficult to deal with than normal, it’s because something else is going on and because I’ve lived through it and I… The arguments I used to have with my Mum when I was a teenager... and that came from the imbalance of power in the parent/son relationship because I was having a different relationship with a man and there are so many different scenarios that can cause kids to behave erratically and it’s, yeah… And people who come from backgrounds like mine need to be in education because they can see.\n
\n"},{"id":"joshdsasdfa","title":"Joshua","href":"joshua","mainImage":"joshua.jpg","images":["photo-27.jpg","photo-33.jpg","photo-54.jpg","photo-81.jpg","photo-105.jpg"],"audioFile":"/static/audio/joshua.mp3","shortDescription":"Joshua's photos","longStory":"\n\nMy name is Josh, I’m from Swindon and I live with HIV.\n
\n\nWhen I think of home, I feel it’s a comfortable place. Hopefully, a stylish place. It means acceptance, doing the things I want to do, no judgement, safety, comfort… Support. Family. Whatever that means. I feel at home with my family, mainly. Whether that’s in the UK, or Hong Kong, or New Zealand. I like to talk, I like to feel like I’m emotionally intelligent. So, I think that being able to talk about my feelings, especially with my family, that makes me feel I’m home. To talk about difficult subjects with them and to get support from them on the difficulties of life. That for me is when I’m at home, whether that would be at one of my parent’s houses or in my brother’s flat in Hong Kong or my brother’s house in New Zealand or in my own home with whoever it is, could be some of my best friends or with my family members.\n
\n\nSo my home is a little bit edgy, maybe. Have wooden floors, dark grey walls. I like to think I have a little bit of an eye for design or trying something a bit different. But also, for it to be comfortable and lived in to… Be a nice place to go, to wake up in the morning and come downstairs and be able to enjoy nice things in life, nice food, nice wine with friends, or a partner.\n
\n\nIn my home I always try and have nice smells, so I burn incense. I have a lot of reed diffusers. I buy lovely smelly candles, like Russian leather candles. I love oud as it’s a woody smell. A lot of the smells I try and add to my home are oud-based. For me, music is a big part of what makes a home so in every room of the house I have a speaker. I even have a speaker that I take with me all around the house to listen to music on. I love that, I love to hear chilled music, relaxing music, Classic FM and then also some more faster dance music, drum-n-bass, things like that. So I always have like a strong connection to music in my home.\n
\n\nMy perception of what home was historically had always been my family home, which I lived in until I was early-20s and that’s where I told my Mum about my HIV. Very, very shortly after I was diagnosed, so I told her on the Sunday after being diagnosed on the Friday. I was living with my brother and his wife at the time in London and they were my rocks, like, they were so supportive and I told them on the Sunday night, I think it was. So I told my Mum in the day and I told my brother and his wife in the evening. And that was just this flat in London, so that flat will always remain as the place in which I told them of my diagnosis. It wasn’t… It was our home but it wasn’t a home for very long. It was a home for a year. It wasn’t something that we’ve then taken with us and it’s not remained a constant in my life. The family home was a constant, but now it looks like it won’t be a constant as life develops and parents separate and things. And now my perception of a home is my own home, the space that is mine and that I’ve kind of built on over the last three years.\n
\n\nSo, a strong positive experience for telling someone that I have HIV would be one of my partners in like the last couple of years. Telling people you have HIV when it comes to the romantic sense or a sexual relationship can always be fraught with challenging conversations or rejection or whatever it is and I’ve had it a couple of times where I would tell a guy and he would just be like: “Okay, cool. Let’s get on with it. Let’s carry on as we were.” That sort of thing. And I love that as a positive response because it is what it should be. It’s just another thing and it doesn’t impact anything in the relationship. It may be something that you might have to consider at some point, but mainly ‘Oh, have you seen my pill box?’ or ‘Have you seen where my pills are?’ Not anything like that should be judged or have some morality attributed to it. The strong negative reaction is also similar. The strong negative reaction is usually: “Oh, thank you, like, for telling me, like, that you have HIV. I dodged a bullet there.” As if me telling someone that I live with HIV... I’ve saved them from getting HIV when we know now that the science is clear and me taking my medication means I’m undetectable and it means that I can’t pass it on to anyone even if I have unprotected sex with them. So for these people that I’ve met where I’ve had very strong negative responses, when I’ve told them about my HIV, they’re just in this land of ignorance, of fear, of a virus which is actually, it’s managed now and they don’t need to worry about those things and I feel like they’ll continue to live in this negative world of denial of what HIV is and what it isn’t and… It was difficult to go through that especially in the early days of being HIV-positive because that was when I needed to be accepted the most and it was when I was rejected the most. And now I’m myself and comfortable with myself and comfortable with my HIV-status and I don’t need anyone’s approval, disapproval or anything and that’s when I finding the most acceptance.\n
\n\nSo I guess as a gay man it’s not like I feel I’m in a space when I’m on Grinder or a dating app, but with gay bars closing down and gay clubs closing down we don’t really have a space that we really mix in and it seems to be all online and I’ve definitely felt excluded from those spaces when I’ve put my status on my profile, because people wouldn’t respond to your message or people would say ‘no thanks’ and some people would say, explicitly, like: ‘No thanks, you’ve got HIV.’ Or not even ‘no thanks’, they would just say the most horrific things to you and in those ways you do feel rejected in a space where you felt like you could meet other people and potentially other people like you and all they’ve done is narrow in on an attribute on your profile and then they’ve rejected you based on that which is incredibly ignorant anyway but… And also you would go through the second-guessing yourself of ‘maybe this person didn’t reply because they can see my HIV-status,’ so then you take it off your profile because you think people will message you more. And sometimes they do. Or people would forget you were the person who had HIV the last time you were online and so now they reply to you.\n
\n\nI would say HIV hasn’t affected my living situation. I was flatting with friends and ex-colleagues at various points when I was living in London and it wasn’t an issue. They knew that I had HIV. I had told them about it. I came out quite publicly at work. I told people at work about it so working with these people and then living with them it wasn’t, it wasn’t an issue at any point but I could understand how it might if you haven’t been as open as I was that, even hiding your medication or anything like that, of a very practical nature, how it can affect your living situation.\n
\n\nHIV did affect my closest relationships, not in a way that it destroyed them or they stopped being my closest relationships generally. It actually brought me closer to a lot of my friends. People responded in really strange ways like going from thinking I was going to die to having this more admiration and respect for me as a person because of the hardship I’ve been through. Some people, like, it wouldn’t be a good thing, it wouldn’t be a bad thing, it would just be another thing to the relationship and that’s totally fine as well but I definitely felt closer to a lot of my friends after I told them, and continue to feel close to those people because of the, kind of the shared trauma because they were with me when I was in the thick of it when it was really challenging for me and they’re with me today as some of my best friends still.\n
\n\nI would say that I’m part of the HIV-community. Through volunteer work in London and in Swindon. We create this weird network of people and the one thing that we have in common is that we all have HIV. I remember being in a pub in London where someone was looking at our group of mismatch people; disabled, abled, young, old, men… It was a gay men’s HIV group, and they were like: “We’re trying to work out how you guys all know each other.” And we were like: “Well, we’re all gay so that’s why we’re all here together.” And they were really confused by the answer. But it was a total mismatch group. It was so diverse and we had all races, all abilities, young and old, and we were all there because we all had this shared thing that for a lot of us it was traumatic and, but we were dealing with it, we were meeting others like us and coming together to create a community and that’s like one of the biggest things that I’ve got out of being HIV-positive is that sense of community and sense of belonging and in some ways I wouldn’t change my HIV-status because it’s given me so much more in life than I had before I was diagnosed with HIV.\n
\n\nI feel quite safe wherever I go. I don’t know if I have a safe space. I feel like I can live quite openly, quite authentically, so I don’t necessarily have a need for a safe space, or, if I do then I know where I need to go to get it and that would be with some close friends or family. I feel like I can be myself and be myself in front of strangers as well which is quite a powerful thing to do, especially with regards to my HIV.\n
\n\nI would describe myself as, I guess, passionate, thoughtful and kind. I would hope that me as a person that I can challenge people, but hopefully with a smile on my face. Hopefully get people to think in different ways, not to kind of accept the world that they see and live in but to get to a closer understanding of what that reality really is, to hopefully talk about things, the challenges in life. So I would describe myself as someone who can hopefully bring that out in people, does that answer? I don’t know.\n
\n\nI guess the key for me is, if I could speak to an audience who are from all walks of life who don’t necessarily have exposure to people with HIV, they don’t understand it, they’re scared of it like I was scared of it, so they don’t engage with it, what would I say to those people? And I would say that people who live on… I would say that people who live with HIV, who are on treatment, who have an undetectable viral load are basically HIV-neutral. They’re not HIV-positive, they can’t infect you with HIV. That is the biggest learning that everyone in the world needs to understand because that’s like the biggest step to removing stigma from people who live with HIV and it can help people to understand that when someone tells them they have HIV that they’ll know that they’ll live a long live and they’ll be healthy and they’ll be looked after and they’re not going to be infectious to anyone.\n
\n\nI guess, for me, I felt like it couldn’t happen to me and through my own ignorance and where I was at, it did. So I think that that’s something that people need to be aware of. It’s the same with other viruses that we’re seeing today. You go to a house party, ‘it wouldn’t happen to me’, but it does.\n
\n\nSo one of the questions that people on Grinder when they don’t really know what HIV is, one of the questions they feel entitled to ask you is: ‘How did you get it?’ And if I was to be really honest about the reason why I got it, it was because I didn’t have respect for myself. I was in a place where I didn’t really like myself. And not that I sought it out and not that I was engaging in risky practices, but I think it was all around my self-worth and so I think that’s why it happened to me and I think it was a catalyst for me to then look at my life and to change things that I didn’t like and to look at what was going on and how I was sitting in this world and what I wanted out of life and HIV was a thing that made me put all of that into perspective and to then go on and do the things that I wanted to do and engage in the community which I never had before and to work on myself, like, therapy and speak with people and volunteer and mentor others and, like, leave a bit more of an impact on the world, and do something with it. So, for a lot of people, going through a HIV-diagnos can be a really challenging time and not everyone deals with it as I dealt with and part of that is down to my family and support network, but it’s kind of what you do out of it, it’s what you turn something into, it’s... If something challenging happens to you in life what are you going to do about it? Are you going to pull yourself up from that? And I think that is one of the biggest things that HIV has given me and I wouldn’t change it, because I’m a better person today. Done.\n
\n"},{"id":"msdfrew","title":"Martin","href":"martin","mainImage":"martin.jpg","images":["photo-100.jpg","photo-101.jpg","photo-102.jpg","photo-103.jpg","photo-104.jpg"],"audioFile":"/static/audio/martin.mp3","shortDescription":"Martin's photos","longStory":"\nMy name is Martin Burns, I am a writer and HIV activist. I’ve always been the former in that I never chose one day to be a writer I’ve just always done it, in fact I think I was doing it since before I could talk. The latter profession came with my diagnosis, almost instantaneously actually. Yeah, I’d say I became an HIV activist almost the very second that I was diagnosed with HIV because I suddenly felt like I… had a fight on behalf of others, not just myself. I mean I knew what was attendant with that diagnosis... because it was a surprise but it wasn’t a surprise. I think deep down in my subconsciousness – very very deep, like right at the back – I knew what was coming, so it brought a lot with it including the activism. It brought that out. And really that started to inform my work, it kind of gave my writing a much more authentic voice to it. I suddenly had a tribe to write on behalf. It definitely made my work… It’s made my work, you could say that. It’s also made my writing going from being something really selfish and, y’know, quite teenage and just writing about me me me me me, to a much more selfless thing because there’s a lot of people who are still too frightened to talk openly about HIV, understandably so and… That activism was instantly brought into my writing because how else can I be an activist except to write about it? And speak, as well.\n
\n\n
\nI’m half-Irish, half-English, all-European. My Mum is English, my Dad’s Irish. I’ve always said that... the only drink my Mum can drink is champagne and obviously my Dad was raised on Guinness and if you put Guinness and champagne together you get Black Velvet. So, that is me in drink form. FYI. I don’t think anyone drinks Black Velvets anymore. I was born in Royal Leamington Spa and it was ‘royal’ when I was born there. I think, I can remember like in 1989-ish, somebody seemed took the ‘royal’ away, they thought it was a bit un-PC or classist, so suddenly it just became Leamington Spa and as a twelve-year old I was outraged. Which probably tells you what the childlike-me was like. I was born in 1977. That makes me forty-plus. I’m on the right side of forty, although you can’t do anything about your age, I mean, you are what you are and I kinda think especially when you’ve gone through a diagnosis like the one I did, you are just grateful that you can call yourself forty-something. 44, if you must know. So, that is me.\n
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\nHome for me is a really abstract concept actually. I mean, I have different views about of what home is. First and foremost, home is me, y’know? I am always me and I’m always comfortable or I’ve almost always been comfortable with who I am and where I am and I think I’ve carried my home around with myself and have done for a long time. Mostly because I am, physically as well because I am a traveller. And I do believe in the old adage of, y’know, home is where the heart is because wherever my home is and wherever I feel comfortable and I feel safe I can call it home quite quickly or quite instantly. I think that might seem a little bit fickle to other people like my family home that I was raised in, which wasn’t in Royal Leamington Spa it was in Coventry because that’s where I went to school and my parents moved to, that was home, but that stopped being home in 1995 when I went to university to Bournemouth and that instantly became my home because that’s where my life was, so… Yeah, home is where my heart is but home is where my life is as well. I currently live in Bristol and have done for – do the math – six years, no, five years. And Bristol really is home on so many levels. I feel so comfortable here and feel really safe. I just feel like a part of the fabric of the city in a really kind of, yeah, comforting way. I’ve only just moved into my new home which is in Easton, also known as the ghetto. No, it’s not really. I love Easton. I love the community feel here. It has such a great… vibe, and I know that’s a real Bristolian term. And, all my stuff has been in a storage unit for over two years so it’s like Christmas and birthday to get all my belongings – not that I own that many – in one place and just… in front of me and kind of easy to access. So home feels like a really poignant idea because I haven’t had one for two years. I’ve kind of bandied around staying at friends’ houses, which I am very grateful for, of course. The storage unit was useful because I knew all my stuff was safe.\n
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\nThere are certain objects that I keep with me almost always. Which are like a reminder of when you had a home, or when I had a home, and next time I will put roots down, which is current, currently. My world map comes with me always, just so, y’know it’s the first thing to go up basically on a wall, which is kind of the polar opposite of establishing a home, is having a map to remind you of where you’ve been and where you can go next. I guess they’re two quite conflicting ideas actually, which is me, so you’d better get used to it. I have the bag that I usually travel with which has all my flags sewn on to it which are my souvenirs. Which perhaps is the same theme as having a world map. It just kind of reminds me there’s other places to go, people to see, it’s a short life.\n
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\nSo… Things that I keep with me… There’s Tigger, of course, who I got when I was 12, in Disney… Whichever the one is in Florida, Disneyland I think, or Disneyworld, whatever. He comes with me everywhere, he’s like my little familiar. And I didn’t actually realise, I was in kind of… The last place I moved out of I was in such a kind of… Not a rush to pack up, but I wasn’t really thinking straight when I packed all my belongings up because I was just coming out of the end of a long relationship, so, I didn’t really know what I was doing. This was last August and I packed Tigger just into a, like, a dustbin back of clothing and chucked him into my cold storage unit and it was only when I went down to Cornwall to visit a friend and she has the same Tigger and bear in mind we’re both over 40 so judge that how you will… And she was like: “Oh, have you not got Tigger with you?” I was like: “Shit, no, he’s in storage, how callous!” Like, how awful of me! So it was the first thing I did when I got back to Bristol: “Oh my god, I have got to go all the way down to my storage unit just to unpack him.” But you attach sentimental value and, y’know, memories to things which is why it felt wrong putting him in a dark storage unit.\n
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\nBut for two years of my life there was a part of me in a dark, storage unit. But I was on the road so much and not settled, it was something I had to deal with. I like going on my adventures. I don’t know if that’ll get less the older I get, but I do also require some safety I guess. I don’t really know why I’ve rebelled against staying still and actually having a home for longer than…. I don’t know. Three years seems to be the average for me. I kind of feel that there’s something about just having one home that I might… It might be a little bit like I’ve suddenly been pigeon-holed, which of course I have fought against for years, y’know, when you come out and you become a homosexual everyone thinks that’s all you are and when you’re diagnosed with HIV: that’s it. You become an avatar, or any condition really. And I’ve really fought against that because none of us are like that. We’re all everything, y’know. We all have so many facets and different aspects to us and I have a feeling that I’ve somehow transposed that idea onto the concept of having just one house or one home, like that’s it: you’re done. Like as if you’re locked in for life.\n
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\nSo I guess in a way you could say that travelling is my home. I love being on the road, I love being in transit. Y’know, lockdown has been very difficult in one respect, ‘cause I just had to get out every day just to go for a new walk somewhere, just to feel like I’m exploring something. That really isn’t much to moan about, I know. I definitely get that from my Dad because he was a traveller. I mean both of my parents still are. Yeah, I’ve had this escapism, I guess, since…. Well, forever actually. One of my earliest memories is – well it’s not one particular moment, but it’s a repeated memory – is being driven home late at night and, whenever it was dark anyway, it might not be late, usually from seeing family members... We have other family who also live in the Midlands, or even, y’know, coming back from Surrey which is where my Mum’s family is from… Sitting in the back of the car, being really sleepy, and really toasty, and really warm and looking out at the motorway and of course all you see is black, but off in the distance, like you’re not looking at the lights of the cars, but… Almost as far as you can see, off, occasionally, you know, I’d catch a glimpse of like a light on in a cottage in the middle of nowhere, just a very small kind of square of orange and I’d think, or I used to think: ‘Oh, I wonder what’s going on in that kitchen? Like, who’s in there and are they having a nice time?’ And y’know they’re all warm by the fire in this, wherever this cottage is and it’s a weird thing for a kid to have because I’m sitting in a warm car with my family being driven home, y’know… That’s the safest kind of travel there is, so it’s strange that I was always looking, even at that age, as early as I can remember, like four years old or earlier, always looking to find out other people’s homes, I guess, what’s going on in them. It’s definitely one of my if not earliest memory.\n
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\nLondon was my home for a long time, about ten years on-and-off. I lived in the south of London for most of it, the bulk of it, but in my last year I decided to move to the north of London because I’d never lived there and I already knew it was like a different city and I wanted a different taste, a different flavour of what it was like. And it took me thirteen months to try, you know, well of trying in fact, to find somewhere to live. So during that last spell in London essentially homeless for thirteen months… I lived in hotels. I’d, y’know, I’d stay at my friends’ houses… I’d carry my bags with my while I was working, I’d take them to work, I’d ask a friend if I could stay on their sofa, y’know. It was a very dark year, which was 2016, just before I came to Bristol. And there’d be nights where I’d sleep under London Bridge because I just had nowhere to go, I was spending a fortune on hotels. And if I found like a hotel or a B’n’B that I could stay at for kind of four or five nights it was like winning the fucking lottery. Anyway, eventually after thirteen months of this , or that, I found somewhere to live in Finchley, in North Finchley and I was so… over-the-moon, basically. And it was a gorgeous flat, way beyond my price bracket but, y’know, I was desperate for somewhere to live so I went for it… Unwisely, it would turn out, but… It was in North Finchley and when my parents came down to visit me, it was my Dad who was like: ”God, this is so weird! This is where I moved to when I left Ireland.” I mean, he left when he was a teenager at the time of the Troubles and he came over to London and he came to North Finchley and moved there and of course all the pubs were ‘No Blacks, No Irish,’ so… I mean, when I found out that story that was kind of first glimpse of prejudice. I’m digressing completely here but, y’know, I am a child of someone who was, who experienced a lot of prejudice. But, when my parents came down to North Finchley to visit me that time when I was living there, my Dad was like: “God, it hasn’t changed!” I mean, the pub he worked in was still there. It was kind of very much same-same but different and during that trip my Dad was like:”I’ve got to show you where I was living.” Which essentially I was going to be shown the place that I was conceived and… I’d grown up not realising that I was conceived in Londoner – in Londoner! - I was conceived in London, so in a sense I am a Londoner, which is maybe why, I don’t know, it felt like home. And, y’know, a lot of my family members when I moved there for the first time, they were always kind of: “It was only a matter of time before you ended up there.” So we went for a walk and, for my Dad to show me basically where he used to live and we took a, like, we turned off the high street, down a road that I used to walk down probably about four times a week, four to six times a week because it was where the tennis courts were. The minute we turned onto that road I knew, without knowing it, I knew where it was that my Dad was going to say he lived in. I knew exactly what building he was going to point out because we were walking down – and bear in mind I knew this road quite well – walking down it and there were like three or four apartment blocks, quite 60s, or 50s, quite brutalist, and they each had a name, like a woman’s name but ‘something-House’, so it was like Barbara House and Felicity House and, y’know, each one was this woman’s name and then ‘House’ and I knew what the last one was called because I’d walked past it so often and I knew it was going to be the place… That I, that he lived in because… Because it was called Wendy House and you can’t make that shit up! I mean, a homosexual conceived in Wendy House is poetic and it’s true what they say, y’know, writers don’t need to make things up because it’s all out there and it’s interesting and funny enough. So, even me finding that flat in my last year at London in the place, like just around the corner from where I was conceived, without any knowledge of that, I had no idea it was North Finchley, was quite… odd, in a kind of serendipitous manner, for want of a better word.\n
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\nSo, my homes have always had this feel of kind of returning places or finding places where I feel really comfortable. You know, Bristol… I’ve known Bristol for fifteen years before I moved here and it’s always had that feel for me. And funnily enough while I was living in Bristol, London actually became home for me again because my partner at the time was living there. Because I was living in Bristol but travelling up to London a lot to see him and in my defence I was doing the lion’s share of the travel, which in the end took its toll, but… London was then partly my home again because he was my home. So his house was home to me, y’know, not necessarily the actual house or the actual garden it was just the fact that the person I was in love with was there. I never would have moved in. I mean, the house was just not big enough for two people, but you know, I guess that’s kind of what I feel about ‘what is my home?’, it’s quite abstract because that person and their life can become part of your home as well as yourself. I think that’s about it actually, you know. My writing which is me because it’s inextricably linked and I rely on it. My imagination and the worlds that I create, they can be your home and maybe that’s one of the reasons people become writers because they’re trying to find themselves and find their place in the world. And writing, you know, is an exploratory act of yourself and the world and your place within it so surely that’s almost the very definition of home I guess. Yeah, this is going to be a ramble.\n
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\nSo, yeah, I’ve had lots of homes, over the, over the years. London on-and-off, like a decade, was, although I kept trying to escape, but… Like my last year in London was in North Finchley but it all came crashing down because my boyfriend at the time, obviously this is a different one, Sam, who I was dating while I was in Finchley, he, he went and died on me. Not on me, obviously, he went and died on himself, but… Well, the doctors said it was Sudden Adult Death Syndrome but I have to say I still think that’s a generic term for doctors not really knowing what happened, y’know, it’s just they haven’t found a name for it yet. But that really pulled the rug from under my feet, actually, and almost single-handedly ruined London for me, well it ruined myself so I took it out on London and I just went off, completely off the rails. Y’know, London became a dark place for me because I became dark, in that I didn’t handle the fact that Sam just suddenly wasn’t there very well at all. Yeah, so… He suddenly went, died… It did ruin London for me and, like I said, I got into a very dark place and, y’know, if home is a state of mind then my mind was completely shot at that time so so was my idea of home.\n
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\nAnd, y’know, I looked for all the escapism that people do, the drink, the drugs. Twice I tried to… I don’t even know if it was like a half-hearted suicide attempt, I just was done and was looking for the ultimate escape route. Once, I think it was East Finchley cemetery, cemetery, symmetry? Sorry, symmetry’s a whole new image! In East Finchley cemetery with a bottle of No Frills Gin and some paracetamol, I mean how clichéd, in fact it makes me feel a bit embarrassed to think about it now but when you want out you want out because it’s easy and my home was falling apart around me at the time. And the other, the second attempt was... I just started walking from my flat in Finchley down the Greenway that goes all the way down through Hampstead, and comes out in Regent’s Park. And it’s a green walk for… Probably takes about two hours, and I didn’t really know where I was going I just knew I had to get on a … I knew I had to get on a train and I… I had two options in my head. I was either going to get on a train go to the coast, I thought Brighton because it was near, and just pull a Virginia Woolf and keep walking. It is so clichéd. Or, for some reason I remember thinking, or not thinking because my head was all over the place, I was thinking I’m just going to get on a plane and go to Latvia. Fuck knows what I was going to do in Latvia! Maybe I thought the cold would kill me… And, I mean at the end I was arrested in Hyde Park because I’d left a note in my flatmate’s living room. He’d gone onto full alert. I was unaware at the time that he had actually lived through another flatmate killing themselves. He’d found him in the wardrobe. I didn’t know this. If I had’ve known that I obviously would have thought twice about doing what I did, but…\n
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\nI guess this kind of shows how you can attach home to other people, so, you know… Sam was a little bit like that for me, before he died and, you know, my last ex there was a similar theme. And your friends and family become your home. You know, my friends and family are my home as well. Yeah, there’s lots of different aspects of life that make up almost a kaleidoscope of what home is for me. I think romance is home in a way, ‘cause I was raised on it. My parents met in the most romantic of ways, y’know, so I believe in romance because it was always there, like background radiation for me, in a good way. And you know with my ex, when we split up he always said that romance was never enough to base a relationship on but of course, in the back of my head I was always thinking: ‘It is! Because it worked for my parents have three kids and they’re still happy together.” It’s a bloody good start, but… It wasn’t enough. And maybe with all relationships it isn’t, sometimes they come together in a different way. So, I think if I had to summarise it I would say mostly home is myself and I kind of love that because y’know I’ve survived a lot, so, your home survives with you and if home is myself, y’know, if I invite you in I expect you to respect it like you would respect another’s home. Don’t leave a mess. But yeah… I have my home and I think it’s me.\n
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\nI think almost everything was probably coloured by my diagnosis. My diagnosis actually came from travelling and, as I’ve said, travelling and home are inextricably linked for me. I was working in Thailand in 2005 after the Tsunami for a charity over there and when I eventually returned to the UK, my health deteriorated really quickly, literally went off the precipice and I went down to like 4-and-a-half stone, which is what? Twenty-six, I don’t know what that is, it’s 4-and-a-half stone and yeah, I just became skeletal and looked like a leper, my skin was falling off. You know, I was not in a good place and I was like that for about two years.\n
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\nAnd I had two years of misdiagnoses as well, from 2005 to 2007, bearing in mind, y’know, people had iPhones and it was a very progressive time in some respects, feels very modern, excuse me, but nobody was talking about HIV, it was still a taboo subject. No medical professionals mentioned it to me and, let’s be honest, I’m not the straightest, butchest of guys and somebody must have thought: ‘Hang on, this homosexual could very well have, y’know, HIV.’ But, I didn’t want to admit it to myself because admitting something of that magnitude to yourself is a really frightening thing to do. But, I did what so many other people of the time did, I put two and two together and just got a bloody wrong number basically because, because I was working in Thailand in waters that were diseased because they were full of body parts and dead bodies and we were identifying the victims, clearing the villages etc., it was not a sanitary environment, so I assumed that I had picked something up from the water and kind of rolled with it and my diagnosis came out of that assumption, because I had a friend who was a producer on one of the ‘Embarrassing’ series, ‘Embarrassing Illnesses’ or ‘Embarrassing Bodies’ and they were doing an episode on tropical diseases and because no-one had cured me or found out what I had, I was just getting iller and iller, approaching death’s door…\n
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\nWhat was I saying? She put me forward, or asked me if I’d like to be put forward as a candidate to go on the programme and maybe they will find out what I have and of course, I was like: “Yes! I’m just… sick of being sick. I’m so bored of looking terrible, looking like a leper.” Y’know, I’d gotten so desperate that I was doing that thing of ordering wacky products off the internet. I ordered silver tablets from a US company - I was going to say ‘pharmaceutical company’ but I’m doing that inverted commas thing with my fingers – I mean, it was like literally looking for a silver bullet to shoot a werewolf. I just wanted a cure, I didn’t care if I was going to be on TV, looking as I did. And, so, I had a meeting, well an interview really I guess, set up with Christian Jessen, who was the host, or the presenter, but he wasn’t well-known at the time, he was just breaking into TV. And… So I stepped into his office in Harley Street - which is like the Palace of Versailles - and he took one look at me, and thank god that he specialised in sexually-transmitted diseases because he just took one look at me and said: “Has anyone given you an HIV test?” And I said: “No.” And his exact words were, he said he was flabbergasted. Now, obviously, I had an instant crush there and then because a man used the word ‘flabbergasted’ to me and I was thinking, all the way through our talk, our consultation, I was kind of thinking: ‘Hm. Is this the time and place for me to ask him out for a drink?’ But, you know, I didn’t.\n
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\nSo, we had a quick-fire like rapid HIV test, which is a tiny prick to the finger – I would make a crass joke about tiny pricks being the cause of all this trouble – and it came back in like 15-20 minutes and y’know he said: “You haven’t just got HIV, you’ve got it in spades. You have to go on medication immediately.” And from that moment, I mean everything changed but certainly my concept of how I was going to live, or even where I was going to live… Because, you know, I had to go back to the flat I was living in, which was in Streatham with a really dear friend of mine, and I was shit-scared to tell her ‘I’ve got HIV now,” thinking: ‘She might kick me out on my ear, she might not want this under her roof.’ That was nonsense, of course, because y’know she’s such a decent soul. But ever since that, even now it triggers something, because for years after that every time I lived somewhere or moved into somewhere new there was always that: ‘Oh, god I’ve gotta tell ‘em what I come with. Do they want this in, y’know, within their four walls?’ Which I don’ think many people have to think of, so... Yes, it changed everything really.\n
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\nIt’s funny thinking about it because for years, and when I say years I do mean decades, I would tell people that I had an HIV diagnosis but actually I was given an AIDS diagnosis in 2007, which comes with a whole other set of worries and information. I think one of the… The biggest changes for me was, not panic but, I was given a mortality rate, y’know they used to do it, I’m sure I didn’t imagine this, they would do your figures and they give you an estimate or a guesstimate of how long they think you’re going to live and funny enough the consult-… This wasn’t Christian Jessen, but the consultant at the time said 77 to me which I loved because I was born in 1977, like, wow, really nice symmetry. Finally I got symmetry into the conversation. And also I was thirty at the time and I didn’t think I was going to make it to forty. So I was like: “My god, I’d be happy to get to sixty-seven, let alone 77.”\n
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\nBut the upshot of that is that it, y’know, I’m not a morbid individual but it suddenly makes you realise: ‘shit, the clock is ticking.’ Like, it puts a counter on your life. I did screenwriting at university and, y’know, one of the oldest tricks in the screenwriting book is ‘put a clock on it’ because it makes it exciting and it excites the audience and it ups the drama and now, with this diagnosis, it was like the film of my life had a clock on it. So I suddenly went into this kind of ‘must live with a capital L’ and almost instantly all bullshit just kind of was dropped, like I have no time for that now, you know I’ve got to be as authentic as I am, which is kind of why home is is me because you, you’re suddenly diluted into, no not diluted I mean the absolute opposite, reduced, like reduction almost, you become like, like when you compare vinegar to balsamic reduction, you get the analogy? It’s like you become the most intense, authentic version of yourself. And that’s what my diagnosis did, so I was only ever going to be in places where I felt at home after that.\n
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\nAnd I didn’t have as many places to choose from as well because at that time the travel ban was still in existence for those of us with HIV and suddenly with my diagnosis my travel was curtailed, so a) makes it easier to choose a destination I can go to but it changed my perception of travel, which like I said has been a home to me as well.\n
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\nNegative reactions to being someone living with HIV, in a sense, in a sense I’ve been quite lucky. I haven’t had any violence, I haven’t had any attacks, verbal abuse actually quite little. I’ve had quite little verbal abuse for being gay as well, I think, because I speak up really vocally which usually can diffuse a situation. Like, I don’t think people expect that. If you don’t take it lying down, suddenly it’s like bullies’ll stop. So I’ve been really lucky in that respect ‘cause I have heard some horror stories.\n
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\nI’ve had… You know, it crops up all the time, somebody’s reaction even if it’s well-meaning… For example, I worked at the Old Vic in Bristol for a bit and, bearing in mind this is an environment populated almost entirely by gay, liberal actors, mostly, and I’m really vocal about my status, in case you haven’t guessed, and I was talking about it with one young gay guy, I think he’s like 22 or something, and I told him I was living with HIV and he was like: “Oh, I’m sorry.” To which I was like: “Well, I’m not sorry,” because y’know, he said it like I’d just lost an aunt or something, or a limb. I’m not sorry because it’s been the making of me but the fact that he is sorry on my behalf because he thinks it’s something that deserves sympathy and that’s not his fault, that’s just misinformation. But it’s negative because in the sense that you’ve got to then go through that, like: ‘Oh god, I’ve got to explain to you,” especially somebody so young and gay and liberal and, I thought, well-educated. But it’s not a horrific reaction. It just has an effect on you.\n
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\nAnd I’m thinking of a really good friend of mine actually, we were talking about it one day – and I will name-check her, her name is Zenna - and she said that she’d brought up the conversation HIV in the office that she worked in, because she’s a great ally for my community basically, which is yes, something that we need, but yes, she brought it up in the office she worked in and one of her colleagues who was kind of mid-to-late twenties, again liberal, well-educated, very Bristol… When Zenna mentioned HIV, this other girl, turned around and said: “Oh, HIV? Isn’t that what gay man get and then they die?” I’ve used that question a lot in the speeches I give because it sums up people’s perception of what HIV is, y’know. A) gay people. Gay men, in fact. And B) it’s a death sentence. Those two things couldn’t be further from the truth but you are fighting that tide, and it’s really prevalent in the gay community which is such a surprise.\n
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\nObviously, negative reactions in the dating world, of course. I’ve had people leave in the middle of a date, not even finish their drink, just get up and out of the door, y’know, and you do find yourself saying, like: “Oh, come back boys, please.” But, you’re just looked upon as a disease. And as being infectious, which is so ridiculously archaic. But, y’know, I’ve had that all the way through my sexual and romantic career since my diagnosis, but and I had it... with… I had it kind of again with the break-up of my relationship because on our first date, when I told him, when I mentioned HIV he did this thing that I have named the reflinch because I’ve seen it so often, it’s a reflex in the form of a flinch, you know, people can’t hide it, someone totally give away their opinion of HIV there-and-then when they do this... Their body spasms as if they’re reacting to those three letters and I should have clocked it there-and-then, that that was the reaction I got from him, because that was the warning sign. Immediately. And for a long time afterwards, for a long time after that relationship dissolved I was most angry at myself because I’d seen the reaction and I had years of experience of it and I still chose to ignore it, y’know. That’s like the danger of hope, I suppose. But in truth he was a lost cause from the beginning, because… I was never going to win him over.\n
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\nBut in that sense there can be a background radiation of prejudice which in a way is more insidious than vocal, out-and-out prejudice. It’s not worse, it’s just different. You know, over two-and-a-half years he always said he could never tell his parents about my HIV status and: look, HIV does not define me but it is something that is intrinsically me and has made me the man I am and if you’re not going to tell your parents about it it’s because you’re embarrassed about it or you have shame or other emotions it might dredge up. But it was really painful at the time and in the end he admitted that it was true, he had stuck around with me to prove to himself how noble he was. As if, dating somebody who is HIV-positive is an achievement badge, like you get when you’re a scout. Like, oh yeah, sew that on my lapel now, I’ve dated someone with HIV, and I don’t need to do that again. And if that doesn’t dehumanise you, I don’t know what does.\n
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\nY’know, I have made myself a really strict vow that I am never experiencing that again. I will not have somebody leave me because of my status. And that should work across the board. If someone’s unaccepting of you and trying to change you – and until a vaccine comes along you can’t change the HIV facet of my life – but it’s also important to know that you don’t need to. Yeah, it’s funny, I was thinking about this interview and talking about HIV in relation to the people in my life and I made a conscious effort to not talk about those in my past who haven’t stuck with me but in a sense HIV has been one of the reasons why a lot of people haven’t stuck with me, so it’s important to kind of bring it out into the light. I’m not naming-and-shaming, I’m just a bit kind of… There was a point where I was really tired of that, it’s exhausting, to have… You know. I mean, my last ex left for a lot of reasons, but HIV was the ghost in the relationship in a sense. You know, never comfortable with it. I mean, he was unaccepting about lots of things about me but I think that... not most of but was certainly up there. So that was probably the most negative experience I’ve had of living with HIV but the outcome of it is that I had to rediscover the like basic emotional arithmetic that I believed in, which, y’know, I mean two things really. I’ve always said if someone leaves you then they don’t deserve you. It’s so simple. I know why he left and it’s his choice and I respect anyone’s choice but it does show somebody’s true colours. You find the people that you do deserve. And you don’t deserve me if you leave me, it’s really that simple. Because if somebody can’t see your worth, they’re not worth your time. I mean, that sounds like something straight from a Hallmark card, doesn’t it? But… that is what I believe.\n
\n\n
\nAnd then the positives from being positive… I mean, the puns practically write themselves. I know it sounds counter-intuitive but you hear it a lot with illnesses and diagnoses, but my diagnosis was the best thing that ever happened to me, hands-down. To date. It’s definitely made me the man I am. My health is so much better, it’s probably better than when I was fourteen. So much so that I had a consultation… Gosh, I want to say like a couple of years ago but COVID has changed all of our understanding of time so it’s probably about three years ago now and I was sat in my consultant’s office here in Bristol and she was looking at a clipboard of facts and figures and data from my bloods that I’d had taken like a month earlier and she was just reading it, silently, looking over it for probably about two minutes and two minutes of silence in a doctor’s office is… I mean, that’s torture. And in the end I broke and just… I needed something, I needed an adjective or a sentence or some information. I was just not handling the silence. And she kinda looked at the clipboard and was musing over it and she was like: “Oh, this is good. This is good, Martin.” And I instantly thought in my head: ‘Oh, she means this is good for somebody who’s living with HIV.’ And then I vocalised that, that’s exactly what I said to her. And she’s like: “No, no, this is, this is really good for a human being. This, these stats are like… These are the kind of statistics that Iron Man would have.” And they were her words. I mean, Iron Man. That’s how she described me. Obviously I was hoping for Catwoman, y’know, being Michelle Pfeiffer’s younger brother, but… He wishes. But still, I walked out of that office so smug I would go so far as to saying I was smugnoxious. I mean, it was… It was, kind of, not a relief, it was just like the medical version of a lottery win. And that’s thanks to the medication, of course, y’know, my meds are like what spinach was to Popeye. And that has been a major positive.\n
\n\n
\nI think one of the biggest things has been my activism, actually, because not only has it, like I said, given my work a real voice, it definitely craft- … given me my voice as a writer, but I have seen how inspiring it’s been to other people and it’s such a, like, unbelievable feeling to know that you’ve inspired someone to break out of something that’s harmful to them. Or to break out of their own fear, if you know what I mean. I mean, like, on one day, this is last year I think, I had a message from a young guy in Chile and a young guy in India who had both basically told me the same thing, that for the first time ever on Instagram, I think it was Instagram they had decided to talk about their positive status and kind of come out publicly about it and been proud of it and they said it was all because of the work I was doing because… I don’t have the time or the patience to be scared about doing anything, which can get you into a lot of trouble in certain situations. It’s not bravery, it is just impatience. Y’know, I’m going to do it, I’m going to put it out there, I’m going to talk about it. Maybe I like the attention, I don’t know. But that’s not the truth for a lot of people so for these two guys in particular – and I’ve had a lot of people contact me who… If it’s helping inspire people to talk about their status and talking about HIV is what will normalise it and take away all the fear and shame and embarrassment and prejudice, y’know? In theory, it’s an easy goal but in reality of course it’s not. But that has been really amazing for me. It’s made it feel, well it’s made me feel really worthwhile, actually.\n
\n\n
\nAnd it’s nice to see… Not that everyone needs validation but you do need your work to be recognised so this year… Yeah. Still get confused about the years… The Bristol Post e-mailed me and asked me if I would like to be on their Pink List, which is… They do it every year, it’s like the city’s most influential people in the LGBTQ community which I did of course scoff at when I read the email, they must have been scraping the barrel. But then I kind of clocked the work I’d done in the last eighteen months-slash-fourteen years actually and how hard I’ve worked at being an activist because, you know, there’s a lot of unfairness out there. So it was kind of, yeah… I felt really privileged that people out there were recognising the work. It’s a bit of a cliché but if it helps one person, you’re doing something worthwhile I guess. That’s how I feel about that.\n
\n\n
\nI think the most obvious space – or spaces – that I felt excluded from was the dating world, because even now, but especially 2007 you’re really kind of kicked out, you know? If you’re going to be vocal about your status it really trims the wheat from the chaff as to who is going to continue with you whether it’s just flirting in a phone conversation or agreeing to go on a date. And HIV was, and still is, too much of a problem for people, you know. I said earlier the HIV was a ghost in my last relationship. It was like the third person. And it led to so many problems. But I think with HIV comes.. I don’t know. For me I kind of rebelled against that instantly because I kind of thought: ‘Why should I have to date HIV-positive people?’ I shouldn’t have to date a positive man, y’know, I hate being restricted like that and there’s no need for those restrictions, certainly not nowadays. Obviously, if I fall in love with somebody who is positive: great, I don’t care. But you shouldn’t have to be limited. Or, again, put in a pigeonhole.\n
\n\n
\nYou know, I’m really happy to say that I’ve been dating someone who just… HIV never comes up in conversation and he’s seen a lot of my activism and it’s so relaxed that it’s not an issue. And it’s a bit like, you kind of want to be like ‘Hallelujah!’ Like it can happen. We only ever talk about it when we’re talking about my work, so it is possible. And it’s hard for me to not compare the previous exclusion that I had in what I thought was a real relationship, from like a wider family almost, you know. The last day I spent with my ex, we were talking about everything, we spent the whole day together, you know, in a way it was still quite a nice day, and he said that he’d had a conversation with his sister about telling his parents about me and what had happened the last two-and-a-half years… I mean, two-and-a-half years of not being mentioned, you know? And his parents had seen pictures of me on Facebook for two-and-a-half years and photos of me all around his house and not once asked, like: “Who is this blonde guy in all these photos who looks like he’s making you happen?” But, when he said to his sister about telling them she said: “What’s the point?” And it was, so, it was like taking a bullet. What’s the point of me? What was the point of me for two-and-a-half years? Y’know I always thought his sister was really, like, an advocate of mine, obviously she’s going to support her brother because he was hurting at the time, but… To be suddenly like wrapped up into a box and dropped to the bottom of an ocean is how it feels. I mean, that is exclusion. And when he left me, he took everything that we had built together and the home we were making together. Yeah, there was definitely an exclusion involved in that. Yeah, I think.\n
\n\n
\nY’know, yeah, because of your diagnosis you become excluded from a whole variety of things. Which I’d like to change for the next generation. But apart from that I think it is, yeah… It’s mostly all kind of revolves around other guys in the dating world or in the gay community. But apart from that I think I’ve possibly got away with it quite luckily. Maybe...\n
\n\n
\nI mean, HIV affects the closest relationships when it comes to what I’ve said to dating. You know it’s the ultimate litmus test and I’ve heard a lot of positive people say this. It’s like if you don’t pass that test on the first hurdle, you’re – with regards to dating or romantically – you are dead to me. I personally am not living through that again. There’s so many levels to it. You worry that maybe it was you that ruined that relationship. Maybe it’s not the HIV. Maybe it’s… You transpose it on yourself and start doubting yourself. You know, I don’t do doubt. But you do think: ‘Oh, what am I doing wrong?’ But the things I’m doing wrong are stemming directly from the fact that someone’s not comfortable with who you are as a human, y’know. Whether that’s HIV or part of your personality. You’re walking on eggshells and as someone who’s living with HIV there was a time where you’d walk on eggshells around people you fall in love with you because you’re so used to them leaving. It’s a bit like a vicious circle. You water yourself down and I did for two-and-a-half years. That was with muggins. I will not be doing that again. If the information that I’m living with HIV does not gel with somebody instantly, you’re off the Christmas card list. In fact, we’re not even talking about Easter or birthdays. So, that is a lesson that I have learnt.\n
\n\n
\nIn fact, it does make me think of a date I went on recently… I say recently, it wasn’t it was probably about four months ago now. And, we had our drinks, we’d sat down and we started talking. And when you talk about career obviously I mention writing and activism and when it’s activism HIV comes into the conversation and I saw that action. I saw that reflinch. I clocked it. And I have to say that a) I was relieved that I’d clocked it so quickly and I knew… In, like very nerve ending knew that I cannot take this date any further. So, I necked my Guinness – bear in mind that I can neck a Guinness in like a minute; thanks Dad – and he obviously thought that I was going to use the toilet or something, so he asked me, you know: “Oh, are you going to the toilet?” And I said: “No, I’m going. This is just not going to work. I saw your reaction when I mentioned HIV. They say don’t mix business and pleasure and you are essentially a job to me. You’re one of the people that I’ve got to like change your mind.” But there’s no way I’m continuing a date with somebody who gives me that reaction. So I really learnt the lesson and when I walked out of that bar it felt so empowering. I was like: ‘No. You are not the man for me.’\n
\n\n
\nSo I guess when it comes to personal relationships you could say that my relationship with myself has been strengthened. Like, you get complete ownership over every part of yourself. Hm. Yes, that’s how I feel about that. Um… As for other relationships or other close relationships? It’s funny my friend who I was living with when I was in Streatham, when I came home and I told her, and we sat down in the lounge and her reaction I still remember to this day, her reaction was basically, she just said: ”What do you need?” And that is the support you need to be shown. Utter loyalty, in a sense. And if I mention loyalty it might so hypocritical to some people but actually the first person you have to be loyal to is yourself, which is tricky at first when you’re living with something that has so much stigma, ‘cause you kind of want to placate people so that kind of comes back to the whole idea that you can strengthen your relationship with yourself.\n
\n\n
\nAm I part of a community? That’s interesting. I’d say yes. I’d say mine. That’s kind of across the board. Yes, is the short answer to that. I feel like I’m a part of many communities that overlap. I’m a part of the gay community. I am obviously a part of the HIV-community and we are worldwide y’know, there’s, what, 39 million of us? 38 million of us. And that’s a great community because you meet all walks of life. I’ve been introduced to people that I may never have interacted with, if it wasn’t for HIV. I went on an HIV peer-mentoring training course and it was myself, another gay guy, a bisexual guy, all of us were white, and then I think it was about twelve or thirteen older ladies of either African or Caribbean background. Amazing women, amazing women, but women I never would have spent three full days on a training course with probably, if it wasn’t for the fact that we all shared HIV. So, I definitely have that community.\n
\n\n
\nI’ve always had the restaurant community, over the years. I’d like to think I’ve stopped that, but you never know. They really have been my support system, just because there is no bullshit in restaurants and I’ve always said everyone should work in them once, it would teach people how to talk to each other. Primarily my community is a community of loved ones, those that you have a two-way relationship with you can offer something to them, you can give them something, they give you something in return, like very reciprocal. So it’s not necessarily a narrow community, it’s just… Yeah, all the people I keep.\n
\n\n
\nDo I have a safe space? I mean it’s a short answer, it’s very similar to the fact that my home is me, so my safe space has to be me. If you’re not comfortable and you don’t feel safe with yourself then you are in trouble, I think. As long as I’m happy with myself and happy with my friends and I know that they’re there as a support system even if they’re not physically with me, and you have your safety net, excuse me sorry… too much green tea.\n
\n\n
\nY’know, I’m a bit of a loner, but I’m a contradiction as well, I love being social. So I feel safe in both of those environments, whether it’s me doing something I love or doing something I love but with lots of other people that I feel secure with. I would also say safest spaces is on a tennis court actually. I think when I step onto a tennis court I think that’s probably the most joy I ever feel in a moment, like an acute sense of joy. I think it’s because you’re so living in the moment and you’re thinking only of this tiny luminous yellow ball that’s coming at you at like 90 miles-an-hour or whatever. It’s so kind of primal and essential. So a tennis court is definitely one of my safest spaces and I can’t wait to actually have a home that has a tennis court.\n
\n\n
\nI have this future safe space in my mind which I’ve had for… Probably since I was about fourteen, of like a beach, a kind of one-storey small villa-slash-bungalow kind of estancia kind of thing. White sand, blue water, water that is also the temperature of a bath, a warm bath obviously, and a hammock, because there is no-one that can do a hammock like me, that I am convinced of. This is a mental image that’s a safe space and one that I’m working towards. And I’ve had it like at all times in my life, no, I’ve had the experience at different times in my life and I’ve always felt just blissfully at ease, so I’ve kind of extended it into a future safe space. And I’m going to be simple about it: sunlight. I’m, I’m not even a sun-worshipper I actually follow the sun, not metaphorically but literally. The person I’m seeing at the moment calls me girasol, which is Portuguese for sunflower and actually a lot of my friends call my sunflower so there must be something there! You know, if I’m working at home, which obviously that’s what we’re all doing at the moment with COVID but as a writer you work from home a lot anyway, I will sit myself in a patch of sunlight like a cat, doesn’t matter if it’s on the floor, and I will move as the sun moves, which often means gathering my laptop and my books and everything up and shifting them like a metre to the right. And I lose a lot of time doing this, I think my work suffers doing that but I can’t not. So, I always feel safe in sunshine, I guess it’s the vitamin D working its magic. I don’t know what I’m still doing living in England. Anyway, go figure.\n
\n\n
\nAnd yeah, my new home that I live in now, that is a safe space. It’s in Easton which is somewhere I’ve mentioned I feel really comfortable in but there’s a lot of love in this house. I live with two friends who I… Who I feel very supported with so that makes the space become safe because love is a safe space in that respect, I think. I don’t mean romantic or sexual, but genuine, honest, friendly love for another person. So yes, I think they are my safe spaces.\n
\n\n
\nHm. If I had to describe myself I am… I’m great. I think, yeah, I’m fucking great. I don’t know… If you don’t think that about yourself, like I said, then you are in trouble, but I think I’m one of my favourite people I’ve ever met, actually. I’m also the kind of arsehole that can say shit like that, because… Why not? It’s almost like the thing you’re not allowed to say, but I see it reflected in the friends that I have and how my family loves me and the relationships I have and the people that stick with me. They’re like a mirror to you and they’re great so I must be. And, like, probably all of us I’m one-of-a-kind. I love that. Y’know, I try to be as honest as possible, I try to be as kind as possible, I’m fun. I definitely have my own way of thinking about things. But I’m sure we all do, really. I am definitely not a sheep. I don’t know if anyone is really, but, of all the people I know, along with some of my friends, y’know there’s not that many of us who are quite so… I’m a vagabond, I think is probably the right word. I’m definitely quite committed to going my own way and I think that authenticity came from my diagnosis. I am even more authentic now because a succession of relationships watered me down, so coming out of them it made me feel nauseous to think I had changed myself for somebody else in retrospect, and so many of my friends were, when I told them, were just really shocked at me, of all people. You don’t do that.\n
\n\n
\nAnd a lot of my friends would say I am really authentic, fiercely so, about anything I believe in. Not only my activism, but, y’know, all my friends know how I feel about religion. Even my religious friends, which is amazing they put up with me. But I don’t walk around on those eggshells anymore on any of those things.\n
\n\n
\nI’m… Let me think. Not vain, ‘cause I have had vanity levelled at me before, I, but, I would say I’m really body positive, which sounds like a bit of hot-topic term, doesn’t it? But, I looked so bad when I was at the nadir of my health, so awful, then when I found my physical health again and my skin cleared up and I looked good and I felt good, and my body found its proportions and my health came back, I realised how much I loved this body that I was given. So, it often looks like vanity to outsiders but it’s not, it comes from a place that’s much deeper than that. Excuse me. I’m tough. I’m much tougher than I look, you know… The things I survived, not just HIV, but... A that relationship nearly killed me. And I’m, that’s one of the things I am proudest of, that I survived that relationship. Which is saying something when you’ve lived through an HIV diagnosis. Not only lived through it but lived beyond it. In fact, even with regards to that diagnosis, that I mentioned briefly earlier, the penny only dropped last year – and this is amazing because this is fourteen years after my diagnosis – but, it occurred to me when I was diagnosed, the thing that… the piece of information that really hit home was that my CD4 count – bear in mind that an average healthy human being your CD4 count I think somewhere between 750 to 1200m, that kind of mark – my CD4 count was 23. I mean you could literally line them up on a shelf and name them. And that was the moment when I was like: ‘Shit, I am in trouble.’ You know, I was weeks away from probably not being on this planet. So yes. So it occurred to me last year or the year before that actually if your CD4 count is under 200, that was classified as an AIDS diagnosis. So I had AIDS, it wasn’t even HIV. I mean, I was on death’s door.\n
\n\n
\nSomething should be clarified, I suppose, the difference between AIDS and HIV. HIV is a virus that you have whereas AIDS is an abstract thing. It’s an umbrella term for a collection of other diseases or opportunistic viruses that can kill you. AIDS isn’t actually anything that you can literally put in a Petri dish. But if your CD4 count is that low you are given an AIDS diagnosis because you are expected to succumb to what could be a common cold. But it seemed that… Not seemed, but I think for me, I was not willing to go. I mean that is toughness, I think. And having that realisation was really something else, you know.\n
\n\n
\nHow else would I describe myself? I’m quite uncompromising, in respects. I haven’t had to compromise with any of my friends or family and look at my life; I mean, I love the people in it. I love my life, so I think that is… Keep other people in consideration but stick to yourself. Y’know, I don’t want to exhaust or wear my friends down by being totally uncompromising but I know they get a lot from me by me just being myself. Yes, in that respects I am, I guess, a glorious contradiction. I’m really contradictory. I think we all are. I am accepting of the fact that I’ve got a really dark side and I think a lot of people don’t and brush it under the carpet and that’s a place where a lot of trouble comes from. Y’know, I’m really… I’m a great loner, I love being on my own, but I love being with my friends and family.\n
\n\n
\nI’m patient, but impatient. I mean, you ask my Dad I am the most impatient fucker around. I have no patience for the smaller things, but I have the most amount of patience in life, for like my career and my writing and my work. HIV activism is a lifetime job. It’s the only job in the world, being an activist, it’s the only job in the world where you’re trying to put yourself out of work because when I don’t have anything to do that means my job’s done, but then I won’t have anything to do. But with my writing career, you know, I’ve waited – which is quite a nice pun, because I have done a lot of waiting in my life – for it to happen, y’know, and I’m enjoying the momentum and I can feel it coming together, finally. And I’m ambitious for it but my ambition has always worked at my own pace. I work at my own pace. So I guess I am more patience than I realise, maybe. I’m proud, really proud. I’m selfish but selfless. I’m loyal, which again some people might scoff at but if you stick with me I’m really loyal. I’ve had friends who I’ve just mistreated and vice versa but we come back to each other. I’m blessed that they have. They know who they are, they know how thankful I am. What else? I guess I’m a bit of a paradox. I love people. I have lots of love. Yeah, I have a lot of love, really. We’re all great in our own ways, even the ones that infuriate you.\n
\n\n
\nI was going to say I’m forgiving but… I don’t know how I feel about the concept of forgiveness ‘cause I kind of feel it’s, I kind of feel like it was invented for the person doing the forgiveness, to let them off the hook, or… Who is it for? You know. I’m forgiving but I’m not forgetting. I think as an activist it’s part of your remit to not forget. Y’know, I came out of the tail-end of the AIDS crisis and I’m not going to forget how our community was treated by others. That’s about it, I think, about me.\n
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\nI’m independent. I’m curious. I am a big cat, I am a Leo, even though I don’t believe in horoscopes. I kind of think that horoscopes are man’s ego at its very worst. But… I am a big cat and you know what curiosity does to it. I’m… I feel I’m an inspiration to people which I really like, I enjoy doing that because if it helps people it’s good. I’m a flirt. In fact, I am one of nature’s great flirts. I’m an other, I’m not the other. I think language is important. I think the other is dangerous, ‘cause that is a type of exclusion actually, but we are all an other. We can be united in difference. Yeah, I think, I’m happy, basically. Yeah, especially in the last few years, with COVID slowing the world down and kind of brought the world down to my pace, ‘cause I’ve always been somebody who, you know, I’ve always wanted to be the simplest version of myself, actually, so… Seeing the rest of the world get a glimpse of that in tandem with being given the time to do the things that I love and also, you know, discovering I actually had been given an AIDS diagnosis and make me realise what a resurrection I’d gone through, all of this has come together to be… Yeah, I’m happy. I don’t know, I don’t know if I can explain how that makes me feel. I mean, it’s all made me me. And what a me! He’s the only one I’ve got. So, yeah...\n
\n\n
\nYou know I really think that COVID has given us a great – shouldn’t really say great – but a great kind of parallel to the HIV/AIDS crisis, y’know. There’s lots of parallels to be drawn, lots of differences to be drawn. I think one of the main ones was kinda like: ‘God, haven’t we learnt the lessons yet?’ Y’know, any pandemic, I mean it starts with the word pan which means all. We really are all in this together. There’s no prejudice to a virus. They don’t have prejudice. And I just don’t feel like we learnt that enough. I think…\n
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\nWhat else? Yeah, I feel like… I dunno, I feel like sometimes I take my activism a bit too far because I’m so belligerent with it, but I’m also sick and tired of people not being accepting of it and things and being accepting of others. I mean, I’ve said before it’s my goal to make the other an extinct species. It just shouldn’t exist any more. We’re all on one planet as homo sapiens. Some of us are lucky enough to be homosexuals. Sorry if you’re not. But we are all in this together and I’ve had a real shift of like ‘if you’re not on board with this, I’m calling you out on it.’ I think… Who is it who said…? Oh, I’m totally going to misquote someone here I think it was Eldridge Cleaver that it was attributed to, you know he said like “… if you’re not part of the solution you’re part of the problem.” And it’s so simple. And I know things aren’t black and white but, you know, that really rings true for me. So I am quite belligerent. I’m not hateful. I think, people worry that my reparation has an element of hatred in it, or bitterness ‘cause I certainly sound off against the straights, and straight white men a lot, but I don’t mean it. I think I should be adding more but I don’t really know what to say really. Just, you know, people living with HIV are not defined by it just as nobody is defined by anything. You wouldn’t say somebody with asthma is asthmatic and that’s it. Or, a vegetarian is a vegetarian and that’s it. Or a Muslim is a Muslim and that’s it. Or a woman is a… it’s the same thing, you could list any type of person… We are all everything. We’ve all got our hopes and our fears and our dreams and our worries, they’re all very similar. They all come from the same place. I think, yeah, I’d rather there were less people in the world that I feel I have to work on to convince that we’re actually just all the same but we’re just not there yet are we, really?\n
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\nYou know… being an advocate for love and peace and equality is all very well, but just being loving and peaceful and magnaminous about it… I don’t know if that’s enough. I think we’ve got to be a little bit more… Break some plates on the floor. Or smash some vases. I’m not inciting riots I just mean metaphorically. Some people are going to be upset but that’s the only way we can change things. And it is upsetting, to some people, to change, you know. When it comes to, like… Obviously I wear my HIV ribbon all the time, my red ribbon. I would encourage other people to do this as well: I wear it upside-down because I intend to turn the stigma of HIV on its head. That is one of my ambitions. And kind of my life’s work now. And I wear it upside-down not only because I want the ideas to be turned upside-down, but also when people see it often they say: “That’s upside-down,” and then I will tell them I do it intentionally, I wear it intentionally like that and then of course they ask why and then that opens up the narrative for me to start explaining why everyone’s ideas about HIV are usually often times wrong.\n
\n\n
\nI think, y’know, there’s that one piece of information, that really sublime piece of arithmetic, that’s come out, which is u-equals-u, which is of course is undetectable equals untransmittable and that’s such a game-changer that piece of information that if people can take that, spread it to – spread is an unfortunate or maybe apt choice of word – to ten other people… And they can tell ten other people. I mean, it needs to be… I can’t believe there hasn’t been a Government-backed campaign to share this message. And if anyone from the Government is listening to this I’m getting onto you. I’m getting onto your back soon. I want to get onto them to get this message out there. Because it’ll just take away all the stigma and fear and prejudice of HIV really quickly. If kids are taught this in school within a generation we’ll have no more hate for it.\n
\n\n
\nI think, yeah, you know, the message, the language, how we talk about it, it’s all really important. It’s all vital. When I was living in Tokyo for a spell, for shy of two years, no not even that long, and I was an English teacher and the company I worked for – Berlitz – despite the fact that you are teaching English, my god that company loved an acronym, for everything. If there’s anything they can put in an acronym they will. And I fucking hate an acronym. In fact, I’d say I’m acronymophobic. I became an English teacher because I love the English language, that’s why I’m a writer. It’s the most rich, beautiful language in the world. Anyone who has a problem with that come and see me about it, ‘cause I’ve got the linguistic science to back that up. Y’know its richness is unmatched by any other language. And there’s a lot of things I’m not particularly proud of about England but its language I am, because it’s not English really is it? It’s worldwide, it’s made of all the other languages. So, I hate an acronym and I hated the fact that I was working for an English school that specialised in acronyms, I was like: ‘Just say the words!’ Y’know, don’t be so fucking lazy. I laugh out loud, I don’t LOL. So, HIV obviously is an acronym and nobody likes saying – deep breath - human immunodeficiency virus, even I struggle with that and I’ve had it for fourteen. So, I changed it. And I want it to stand, for me it now stands for Hope Is Viral, because if we can give people hope, especially the newly-diagnosed. And there’s a lot of hope to be had out there, because you live a normal, healthy, wonderful life with these three letters in your bloodstream.\n
\n\n
\nAnd I think we have to continue spreading hope and hope is really infectious and not just about HIV but all this shit that we’re in at the moment. Climate change, systemic racism, divisive politics;, sexism, still: which really is flabbergasting. It’s all going on. So, we’ve got to keep the hope and that’s viral, so… Spread it on. There is something else I’d like to spread, actually, because a) I can’t spread HIV anymore, so, I’ve got to put something else in the world, but talking about the language we use I think is really important and, you know, I’m entitled to change the language about HIV because I live with it. It’s my prerogative. Also, I’m a writer so I deal with language and I love playing with it but yes, it’s also something I live with so if I can’t call myself what I want to, who can? And on that note I now label myself as HIV-neutral, not HIV-positive, because positive implies it still has some power and it still makes people think it’s got a quality about it which is kind of forceful or can take an action against you whereas neutral totally diffuses it. And I call myself HIV-neutral because the virus has zero power over me anymore. It came, it arrived, it was dealt with. The medication did its work, still does its work. Obviously you have to adhere to your medication. And now HIV has merely left its autograph in my bloodstream, you know. It’s like… It’s kind of like the UK at the Eurovision Song Contest: it has nil points. Or I give it nil points. So, I describe myself, I label myself as HIV-neutral now because it’s just one of the many facets about me that do no harm and I think that’s probably quite a nice place to leave it, so: thanks for listening.\n
\n"},{"id":"mie9sdxc","title":"Michal","href":"michal","mainImage":"michal.jpg","images":["photo-2.jpg","photo-4.jpg","photo-7.jpg","photo-10.jpg","photo-14.jpg"],"audioFile":"","shortDescription":"Michal's photos","longStory":"\nHi, my name is Michal. I’m from Poland. I’m thirty years old, kind of. And, yes… I live in London for five… Five years. I hate London. I really hate London. When I was a child I had two dreams: to have a iPhone and to live in London. Now I hate both. Thank you. It’s kind of like when you come to London, you don’t have a choice, you know, because London have a choice for you. And London can easily destroy you with loneliness, with everything. So, yeah. It’s so difficult to live in London. You have to be really strong person. Not independent, strong.\n
\nMy home is… Is a good question, actually. Because, I don’t have parents. I do have parents but they kind of don’t exist for me and I don’t exist for them. A few weeks ago, I – before Christmas – I tried to speak to my Mum and she said to me I’m dead to their, to her. So, yeah. My parents are kind of difficult. That’s fine. We all have troubles. So…\n
\nWhen I, when I was a child I never felt safe. I never felt like home’s a home, but when I came here and when I met Steve, when I met José and we spent Christmas together, my birthday, every single time when we spent together… It actually makes, like, it makes like a home. I never felt like a home before. And it was crazy. I was... I didn’t realise what home actually means until I came here. So, yeah. When it comes to home you need to feel very secure, you need to feel very comfortable. You need to feel safe. That is the first thing. Very safe. When you come back to home you need to feel like, yes.\n
\nYes. There’s a place where I am at the moment. I have really good friends. I have really good life now. And... and I look absolutely gorgeous. No, it’s not about that. It’s that… I love my life now. I really do and I have a really good friend who is Steve and I can always count on him. I have really good friend Jose, he’s amazing person. I have amazing friends and I have a good job, I have a nice life, so... And Tomas! Oh gosh, I love Tomas, my dog. Oh, he’s amazing! He’s like 11 years old but he’s like an old and grumpy man. I’m not even joking, he’s like, when I say to him: “Tomas, let’s go,” he’s like: ‘Hm, no. What are you talking about? No.’ So, yeah. Tomas is, Tomas is amazing. I love Tomas.\n
\nIt’s different. It feels really good. It feels like valuable, you mean something, you’re part of someone’s life. You feel like, yes: place. Let’s do it. You feel like you wanna wake up next day and do something. You feel like, next, every single day I create a plan for myself. Which is, you know, tomorrow I’m going to wake up, oh, I need to walk with the dog. I need to go to work. And then after work I’m going to spend time with Jose, I’m gonna spend time with Steve and even though I hate them – it’s not that, actually, it’s not that thing that I hate them – it’s kind of like a hate/love, you know? It’s like having a child. I’m sorry, it’s just, it’s like having a child. You hate this child but love him so much you would actually die for him. You know? So, so yes. It’s like, it’s that feeling you’re really looking forward for it, but when you come home and you’re so tired and you’re like and it’s like: ‘… oh god, just eat shit and die.’ But you want, but you really, you were looking for that. So, yeah.\n
\nSo, I didn’t have like ‘… oh, wow, bow-wows, let’s celebrate because you’re HIV-positive!’ Crack the champagne and… I didn’t have that, I, but I remember a moment when I was a little bit tipsy, hashtag drunk-as-fuck… And I message to my sister. We didn’t speak to each other for years, when my brother died I decide to message my sister and we, we didn’t have like absolute gorgeous beginning, like, you know, happy-ever-after, we had, kind of, like, harsh beginning and we spend time together and, yeah… So I messaged to my sister and I said I have to tell you something and it’s kind of killing me and I’m a little bit tipsy, hashtag drunk-as-fuck, yeah. And she said: “What is it about?” And I said to her... You know what, because the point, the whole point was she wanted me to visit her. I’m from Poland and in Poland we have like 1960 the country full of cows, cabbage and vodka, clearly, and they know nothing about gay people, they know nothing about, like, HIV, and I thought my sister she wouldn’t understand so she wanted me to visit her and I didn’t want to go because, you know, deep inside I knew there was something wrong with me and that something wrong is my HIV status. And… So, I said to her I cannot visit her, “I cannot visit you because I am HIV-positive,” and her reaction was absolutely cool, absolutely amazing like outstanding gorgeous. She said to me: “Are you okay?” What? It’s like, what? And then it’s like: “Yeah… I take tablets.” And she said: “So you’re undetectable?” And I was like: “Whaaaaat? Girl!” And she said: “Yes, so you can come now.” It’s like, um, oh god, seriously? Girl. Yeah, so. She knew, she knew better than me. Hm, girl. Yes. She was amazing when it comes to that. We are very close to each other, that is the only family I have… Which is good, which is good when it comes to Christmas. Which is absolutely amazing when it comes to Christmas because, you know, I haven’t only one sister, I don’t have parents, my brother died so I have only one sister. So when I go to Selfridge’s and I say this is for my sister… yeah go for it. Yeah, she’s absolutely gorgeous. She’s a mother of, she’s a mother of two lovely kids and she’s got an absolutely amazing husband and as a mother with no parents she’s doing absolutely great. She’s doing amazingly great. No, but I mean like the relationship with your sister’s close because it’s… I have a very close relationship with my sister and it gives me a lot. She’s the one that I call when I’m really down and low. When it comes to that point we are not on a completely different level. So, I wouldn’t speak to her. So, she doesn’t want to open up herself. She’s not private, she’s absolutely closed… person. She doesn’t talk about feelings at all. I know, she needs a therapist. She’s a bit like Bridget Jones or something. (sings) “All by myself.” Yeah, I know. Yeah, she doesn’t want to talk about feelings at all, no, no. Not even for a second, not even for a split-second. And I know why. She’s doing it for kids. Because she’s trying to do best for her kids. And she doesn’t want to have a child who, who like, to have to protect her kids like we had. Horrible. With no Santa. Santa, who is that?\n
\nMy whole life changed, actually. My whole life changed because, I remember that day and that was horrible day. I am… I’m usually very private person and there is two parts of me, yes? Which is I know what is the difference between personal and private life. My personal life is outside of the door. My private life it’s inside the door. So when I was diagnosed I tried to keep calm as much as possible… And when a doctor say you are HIV-positive I was: ‘… okay, that’s fine.’ Deep inside me, I knew I wanna cry, I wanna scream, and… And I wanna hug, you know? It’s kinda like, yeah, so yeah, so… I was kind of devastated, but I didn’t want people to notice and, erm, yeah. When I left after a few hours and lots of blood tests and everything, I felt like everything is in a slow-motion. I hate it. I hate it. I felt slow-motion in my life but I decided to walk to home. And so I walked. And when I get home, I, I didn’t say anything. I just went to bed. I watch movie, but sooner or later I knew I’m going to explode. And I did, eventually. In the worst possible way. Yep. So, I explode with my ex-partner which. He didn’t do anything, I just explode for no reason. It’s like, yeah… but I didn’t want to talk about for a while. But, yeah, for a while. And still some kind of like a part of my life I don’t feel really comfortable with it. It’s just because I feel like people would judge me every single time when I actually do it. When I say it, it’s like, a) I’m HIV-positive, it’s not like some status on Facebook you want to do, it’s like, you know. I’m single, in relationship, I’m complicated, I’m HIV-positive. So, you don’t want to change status on Facebook for erm… Because you know deep inside you people will judge you. It’s exactly the same like, you say I’m gay, people say: “Oh, such fun, yay, wow, WOW, you’re gay! Let’s bring high heels!” No, it doesn’t work like this. It’s, when you’re gay and when you’re HIV-positive you’re absolutely grounded and you lost it, so, yeah.\n
\nI, when it comes to me, I try to keep my life as private as possible so this interview today is massive thing for me. And, you knew, because before we start I say to you how anxious I feel. So, yes. So I try to keep as private as possible and, and when it comes to my friends I always don’t want to upset them. And I don’t want to upset myself, but there is nights when I, when I sit alone and when I cry thinking about: ‘Why me?’ You know? What have I done to deserve it? And yes, and, I didn’t say anything to, to my friends. I said to only like a few friends but not to everyone. I only said to like very close friends, yeah. It must be because when it comes to now, 2020, hello lockdown, and… Everything is about social life. It’s about Instagram, Facebook and, you know, Grinder, yeah, let’s hook up. It’s so... So if you want to speak to your friends now you need to message on Facebook, Messenger, What’s-App, Instagram, and you don’t want to do it. You just want to be you. You just wanna be like… You just want to feel like you’re valuable person and you actually exist. Yes. So… and carry on.\n
\nI didn’t have negative or positive reactions because I didn’t talk about it much. It’s just, it’s just because I’m from Poland and we are not very well-educated when it comes to HIV. We didn’t know a difference between HIV, AIDS, undetectable, use condom, don’t swallow or anything like that. We don’t, yes. So I didn’t think different. So when it comes to that point I felt like I have to be excluded. I have to stay away for a while. And even though that people, like, tried to explain to me, you didn’t have to, you’re on the tablets, you are undetectable. I didn’t know what means undetectable until actually I joined a group, yes, which is like I joined a group and I was like: “What are you talking about you gypsy-whore?” So, yes.\n
\nIt was, it was something I need to have it in my life. Something that actually changed my life. Something like… [message alert] Sorry. Fucking phone. It was the Instagram, people! I think, like, I create some kind of, like, bubble protection which was good for me, which was absolutely, which protect me really good. And I think when you look good, when you present yourself very well people don’t ask about your feeling. People always say: “Oh my gosh, you look amazing! Oh my gosh, what cream did you use?” And it’s like, you know, people don’t ask about your feelings. That’s why, that’s why… That’s why you present yourself as a really good-looking person because you try to avoid feelings and try to avoid express your feelings. And… So, yeah. I didn’t feel excluded. I want to be excluded because I had no knowledge about HIV, being undetectable, or anything like that, so… And I didn’t want to talk about it.\n
\nWhat changed? When I joined the group I met a lot of lovely people. I’ve met people like me hashtag: yes. I… I didn’t feel different, I didn’t feel like: ‘Oh my gosh I don’t belong here.’ It was, it was a little bit like, I felt like: ‘… wow, I look like one of you.’ And I want to be a part of it. It was like, like that thing on the television, like Channel 4, Channel 4 is like ‘Deal or Not Deal’? Deal. Yeah, let’s go for it. So yes, I did it. And it felt extraordinary amazing. I had a really, really good time. For the first time in my life I actually had, I can honestly say I had fun. I did belong to something and I was part of something. Which was amazing, so… That feeling for the first time in my life actually was crushing. I felt like I was invited to a lovely party which is like a fucking country club. Yes. No, it, it’s… I felt really good. It was like a band of people with a nice sense of humour. I didn’t feel exclusive. And I really miss that, to be honest.\n
\nI remember my first day and… Don’t get me wrong, but every single time when it comes to me I try to find some kind of, like, what’s the name of it? Yeah, good gosh, I lost myself! When it comes to me I always try to find an excuse to not be a part of something, yes? So, when they say to me you can join to the group and you can be part of the group, I’m... and I say, I say to myself: “What a bunch of losers. No, I don’t want to go there. I look better than you. I’m absolutely gorgeous, just go, stay away from me!” And deep inside I knew I’m actually don’t want to go there and feel absolutely anxious. So I went there and we had some kind of, like, like questions, like introduce yourself and say when you were diagnosed. And it was like, oh, and when it came to me I was like: ‘No no no no no no, I wanna die, just like, no!’ So, my first day was really really bad. My anxiety was really, really high. I couldn’t even speak. So… But when we finished I kind of felt good, really good. And I was like, oh yes, let’s do it again. So next Saturday I came back and then my anxiety was, wasn’t that bad. It was actually good. I felt comfortable with myself. I introduced myself. I didn’t want to talk about my status so I said I don’t want to talk about it, but I said my name, for the first time. And… it felt really good. After that, they say they’re going to the restaurant to have some kind of dinner and drinks, but I said I don’t want to go. I wasn’t ready for that. I’m not. I didn’t feel ready for like weeks. So… After a few weeks I did.\n
\nI have imagination! Imagine a husband, three kids, and you know, future. But I have a nanny for them. No when it comes to… When it comes to safe space I don’t have…\n
\nI think I don’t have safe space. I still feel very unsecure. I would like to find a safe space for myself. I’m kind of like very fresh with that kind of thing. This is why we have this interview. This is my first interview ever. I would never do it before… I would like deadly never. You’re the first person that actually I do with some kind of…\n
\nI like to be on my own. I really like to be on my own. It’s just, it makes me feel safe, it me makes me feel good, it makes me feel like I don’t have anyone. I… Because when it comes to me, my brain doesn’t work with my mouth so I always say something before I actually think… So… So I don’t have a safe space yet and I’m kind of, like, old, so I should find that place. I’m only 21. Hashtag I’m-lying.\n
\nI’m like, like a bubble. I’m mixed of everything. I can be sad, I can be happy. I can be… It depends of the person to be honest. Depends who’s asking, to be honest. And, erm, yeah. I… I think because of my past I lost my future. I’ve spent years pretending someone who I’m not. And now I become a person I don’t know who I am. And I need a tissue!\n
\nI would love to say thank you. I would love to say thank you to you. I think the project actually you make is not about people, it’s also about you. And… And you’re fucking strong, you’re so fucking strong. And I thought I’m a strong and independent person but I nearly cried like five minutes ago, five seconds ago! But you’re so strong. You come into someone’s house, you interview this person and… You doing this amazingly well. So thank you. It makes me realise, actually, I have no idea who I am and I lost myself. Yeah. That’s fun. Yeah…\n
\n"},{"id":"phisdf32w","title":"Philip","href":"philip","mainImage":"philip.jpg","images":["photo-31.jpg","photo-34.jpg","photo-46.jpg","photo-56.jpg","photo-59.jpg"],"audioFile":"/static/audio/philip.mp3","shortDescription":"Philip's photos","longStory":"\n\n My name is Philip Baldwin. I am a human-rights activist and writer with a particular focus on HIV, LGBTQ+ issues, homelessness, asylum and faith inclusion.
\n\n I was diagnosed with HIV in January 2010 when I was 24 years old. The HIV diagnosis took place over my lunch break from work. When the nurse told me that I was HIV-positive it came as a complete shock. It took me about three years to come to terms with my HIV. It was not until the end of 2012 that I had the confidence to tell my employer or my parents that I was living with HIV. Sometimes it can be hardest to tell the people you love the most. From about 2014, I began to get involved in HIV campaigning as I wanted to help and advocate for other people living with HIV. I was fortunate in that I was offered a column by the Huff Post discussing what it is like to be gay, HIV-positive and working in financial services as a lawyer, which was my job at the time. My activism snowballed from that point. I now write for many different publications and am also a trustee of a number of charities. I know that I am very fortunate to have the voice that I do on HIV and LGBTQ issues. My HIV was at first incredibly frightening but I now feel more empowered than ever before.
\n\n Home for me is my apartment in London. I’ve lived in London since my early twenties and have always felt at home in the city. Coronavirus aside, it always feels alive. It has a special energy. It’s a joy being close to museums, theatres and other cultural institutions. There are many other parts of the UK which have special memories, such as where I grew up in Cumbria, Edinburgh – where I went to school – or the universities where I studied. London is home, though, and I would say that my apartment is my sanctuary.
\n\n My apartment is contemporary in design and I’m surrounded by books relating to my degrees and LGBTQ campaigning. I’ve lots of photos of my friends. I live alone and don’t really cook so in terms of smells I’m afraid it doesn’t get more exciting than the occasional scented candle. I live near the river Thames and you can often hear the boats making their way up and down the river. Importantly, my home is somewhere for me where I feel safe. As a writer, I do often spend days at my desk in my apartment and it is a place of nourishment, comfort and inspiration.
\n\n I wasn’t actually living in my current apartment when I was diagnosed with HIV, back in 2010. I moved several years ago. I don’t believe my perception of home changed as a consequence of my HIV-diagnosis. It is worth noting that following my diagnosis I left the sexual health clinic and made the short journey back to where I was living. I curled up on the sofa in a foetal position and cried. I went back to my apartment because, again, that was where I felt safe. At this time of crisis, my apartment is where I sought shelter.
\n\n In terms of positive reactions, I’ve had people I’ve never met before come up to me, tell me I’ve read my columns or an interview and they confide in me that they’re HIV-positive and haven’t told anyone else. I always emphasise that they should reach out to peer-support services but it’s touching to know that I can have impacted even a few people in a small way. In terms of the strongest negative reaction, I went on a date with a guy a few years ago. We were sitting at the bar and had just ordered some drinks. I hadn’t… I mentioned that I had been writing something about HIV the other day and he asked me if I was HIV-positive and then flipped out. It was really strange, He called me dirty and a slut in the bar, loudly in front of lots of other people. He left shortly afterwards but that really shocked me. It demonstrates how real stigma of HIV remains.
\n\n For the first few years, following my HIV-diagnosis, I didn’t tell my employer about my HIV-status. I had previously felt comfortable in my work environment but now I suddenly had this secret. I felt I had to be furtive about my HIV at work and that changed the dynamic in the workplace a bit, although I never felt excluded. In terms of my living situation my HIV status has never impacted this.
\n\n My HIV-diagnosis has actually brought me closer to my parents. I’m lucky to have their support. However, my friends were the first people I spoke to following the HIV-diagnosis. I needed their support. They were very kind, one of them even accompanying me to my first appointment at the specialist HIV clinic.
\n\n I have another safe space now. I am gay and Christian. Around 2013, I began to explore faith and I was fortunate to find inclusive churches in London. I am very aware that many LGBTQ+ people have not had this journey, some being rejected by their faith communities and families on account of their sexuality or gender identity. The church I attend most often was built at the end of the seventeenth-century but has a modern interior. It’s quiet, contemplative. I was confirmed in 2015. The churches I attend are Church of England churches and I get a lot of support from my priests and the congregation. Church for me is a place of peace, prayer and community, but also where I gain strength to push forwards with my campaigning. I see a happy and confident young man who is trying to do his very best.
\n\n I’d just like to thank you for inviting me to participate in this project. If anyone would like to find out more about my campaigning, I can be found on Twitter and Insta @philipcbaldwin.
\n"},{"id":"rah3e21rdfs","title":"Rahim","href":"rahim","mainImage":"rahim.jpg","images":["photo-86.jpg","photo-87.jpg","photo-88.jpg","photo-89.jpg","photo-90.jpg"],"audioFile":"/static/audio/rahim.mp3","shortDescription":"Rahim's photos","longStory":"\nMy name is Abderrahim El Habachi. I go by Rahim. Everyone knows me here as Rahim. I am originally from Morocco. I am 28 years old. Yeah, I live in Cardiff. I’ve been living in Cardiff for… Actually, I’ve been living in Wales for four years, in total. And, er, yeah. And actually the most important part I’ve been living with HIV for eight years now. Okay.
\nSo today actually we are in Bute Park which is the central park here in Cardiff. It’s been around since centuries now and I always like find it peaceful to come here and just relax and do sometimes yoga or just meditate or read or, because it’s like a walking distance from my house and… And actually this park was the first park I visited in Cardiff when I came here and I was like exploring the area and what-not and I found this amazing, magical, big park that was actually, you’re in it. As a Moroccan we don’t have enormous parks so, yeah… Especially greenery, it makes you feel calm and grounded.
\nI think home for me takes a lot of meanings as especially I’m a refugee, so I had different homes and I had different amalgamation of that word. I think for me home at the beginning was next to my Mum, next to my brothers, having, having and getting along and having cooked meals and what-not but as I grew up and actually exploring my sexuality as well, a lot of that… The meaning of the word has changed so much, so when I was seventeen my home became outside of my house, which was supposed to be home. And home became me meeting my friends, my queer friends and like chatting without any, any fakeness and be myself and be who I am and I think that definition grew more and more and more, as I grew up. Until I decided actually to live, oh not to live, to leave the big home, which is Morocco, and then coming to Europe and find actually a safe home and with that safe home is also the community that comes with it, like what we say ‘the chosen family’ and having that chosen family and feeling like supported, you safe and every version of the word makes me feel home. I dunno, this is a long definition of the word home but this is how I feel.
\nI think for me I’m not materialistic as such, I can adapt in any environment or geology or whatever, weather-speaking, and… I get familiar with the place really easy, but I get bored when it’s not like a community. For me, community equals home and I think I’ve told this story so many times when I moved to the UK and… Because I was heartbroken because I came from the Netherlands. I choose that as my home and then the Netherlands were like: ‘Okay, you have to go,’ because the law is, and I came to the UK and the UK was not even my first choice because I know nobody here, but literally – even when I was sent in Cardiff – I didn’t know that it existed in the map, where it existed in the map, so… And then I started to like from depression locked-in my room for six months and then I started going out to meet new friends and build a community which was like for me at least I’m lucky to have that capacity to have of building a community because I think that I’m approachable and I speak too much and I speak with everyone and, so, it was easy for me to find a queer community here and bond with them and find home and then the Home Office decided to move me without any previous notice to another city.
\nI think I was so lucky to have only positive reactions, you know? And, so, like I told you, I’m lucky to have… Okay, I’m going to repeat. Because I said ‘like I told you’ … So I was so lucky to have only positive reactions except from a couple that I don’t like to mention because they are like just 1% in like 100% and I just remember, like, the first time I got diagnosed and the doctor told me: “...you are living with HIV”, the first thing I thought of was like: ‘Oh my god, what am I going to say to my Mum?’ She’s the first one that I thought of and luckily I have - I had, at least - I had a good relationship with my Aunt and she is the same age as me so I told her and she really reacted positively at first and she was crying but crying for the right reasons, not for the wrong reasons. And then we, and then she asked me: “Can I tell it to the other sisters?” And I was like: “Yeah, sure.” I have a big family, by the way, and she said, and I said: “Yeah, sure, you can tell them,” and she told them her way. And that made it easier for me. But, I made sure that I would be the one to tell it to my Mum. So when I told it to my Mum, I think I had this speech prepared, and that I’m ready to leave the house if you want me to or what-not, and she was like: “Don’t be silly. I’m just shocked, and I think you should be, it’s natural to be shocked.” And we had an open conversation that allowed me even to open up about my sexual orientation to her and why I am who I am and she asked like questions about that and this and this and this and that really really was really important and having the reaction of my family and the support of my family was amazing. That’s why I think pushed me to go on TV, on national television and speak about it openly in Morocco, in 2014, and ‘til this day it was my proudest moment… is not only to get the support of my family but also to bring light on people living with HIV because before I did it there was only people talking about it with hiding their faces and for me it was like I didn’t do any crimes to hide my face, why are we hiding our faces?
\nI’m going just to talk about it… Oh, probably because I was too young and reckless! And I thought: ‘Ah, I’ll do it!’ but I don’t regret it because it was an amazing moment and a lot of people, ‘til now, I did it in 2014 and we are now in 2021 and people are always reaching out to me on Instagram or Facebook or something like that who are newly-diagnosed and they’re looking for answers and having that, someone who talks about it in a positive way, sharing his experience or sharing my experience in a positive way, even though there was some hiccups even though I choose to deliberately say the positive ones because I think it will create a snowball of only positivity, if someone’s family saw me and her kid or her husband or her son or whatever and is like: “Well, his mother accepted him, his sister accepted him, his brother accepted him, why on earth can I not accept my…” So that was my, my, my idea of it.
\nBut like, although that I have positive reactions, of course I had negative reactions and one of them is my older brother, who was literally: “No.” But, the reason is I didn’t get to tell him myself. He learned it and he learned it the horrif- the horrifying way. I think if I had the chance for talking to him, sitting down with him and telling him that this has happened, this is why and this is who I am now. I don’t think, I think he will shout at me or he will have a bad reaction but he will not be so dramatic. Because he’s just stopped talking to me. Period. For two years, or three years, after that. And even though we were living in the same house, like we would cross paths, our eyes would not lock, and anything. And also another reaction, bad reaction that I had is from one of my closest friends, who, first of all, first of all I told my best best friends that I’m living with HIV right away and they were amazing about it. They even went with me to the hospital to get my treatments and get everything done and they drove me there and they hold my hand and all that. But a few of them were spreading it like fire in the community: “Watch out, Rahim is living with HIV. Watch out, don’t share these things with him, don’t do with him. If you have a sexual partner make sure he knows that Rahim is living with HIV.” So that was like a bad thing, a negative thing.
\nAnother part of that is me going to national television as well and my neighbourhood finding out that I’m living with HIV and I heard stories that they were trying to make me suffer when I come home. They said they were going to wait for him. And of course the attitude changed towards me in the neighbourhood. Which was like: ‘Okay I didn’t have a relationship with you to begin with, why should I bother myself with you all?’ It’s just like the looks and all that and, of course, the hairdresser as well stopped receiving me. I think one of the reasons that I have long hair is just because of that memory. Even though I am over it. Actually, I like my hair long. I digress, I digressed. But, yeah, it was like I went, it was my regular barbershop, and I went there for my haircut and he said:”I am sorry, we are full.” And that’s when I realised: ‘Oh, okay.’ And, of course, another Aunt, as well, when I decided to go to national television she was like: “Oh…” Before that she was like: “It’s okay, we support you, living with HIV is like having diabetes or what-not.” Then we decided to go out about it and she was like: “No. You should not do that, you’re going to make… You’re going to bring dishonour on this family, you’re gonna bring shame, not dishonour. You’re gonna bring shame to this family. We’re going to disown you if you did that.” I was like: “Go ahead, girl. Because if I don’t go to national television I would not be able to talk to you anymore.” And if… And she said: “Well, your loss.” And I was like: “Well, either way I’m going to lose you so I may as well do it!” And she was like: “Well, if you did it, you’re gonna lose a whole family. But we’re going to lose only one person.” And I was like: “I’m fine with that. I’m really fine with that. And luckily I just lost her, I didn’t lost the part, the other members of the family. And also, like, again, I don’t try to focus on that negativity because I think that if I did focus on it, I would not be reaching what I reached, everything that I reached today. And like, and even though I lost some relationship, the most important relationship that I gained is with myself. Is trusting myself and trusting my guts and knowing my worth and knowing who I am and not letting just a virus control me. That was the most important thing that I was going with and everyone who was asking me about my diagnosis I would just look them in the eye and say: “Yes, I am and do you have any questions?” And that’s how… I don’t think I got this community against, because of my serology. ‘Cause I think I showed strength and resilience.
\nLike I said, there are some who’ve been there for me like since forever and there are people who like: “No, I’m not going to associate myself with him because if I am his friend people will think I am also living with HIV.” You know? So, of course. Especially in the community, the gay community and the gay community in Morocco is very small. Everyone knows everyone. Even if you are the newest member of the LGBTQ community everyone will know about you, you know? And being associated with someone who is living with HIV is like… the plague. You know, literally. Like, everyone thinks that you have HIV as well. And funny enough - which is like a positive thing to have – obviously I’m not going to mention it, it’s okay.
\nSo, like I said, coming to the UK was very daunting to me because I didn’t know nobody here. I didn’t know even Wales. I thought I was going to go and London was going to be my home! You know? But then the Home Office is like, whatever the Home Office wants you to be, you’re gonna be there. And then I came to Cardiff and then I started building this community through an organisation called… No, it’s not an organisation, it’s a social group, it’s called Glitter Cymru, for LGBT black, Asian and minority ethnics here in Cardiff and south Wales. And I went to the first meeting and I was like feeled so weird about it because there was a lot of people who looked like me there and I didn’t have… Beforehand, a lot of people would say: “You’re an asylum seeker,” and I would have to explain what it is being an asylum seeker and di-di-di-di-di-di-di-di-di- and all that, but with them it was like: “Oh! You’ve been through the same thing? So, I understand what you mean.” You know? And even like… And the importance of that group and that community – because I cultivated best friends now like who are brothers and sisters to me now they come home whenever they want and I go to theirs whenever I want and when I feel bad or happy the first thing I do is share the news with them and through the four years that I’ve been an asylum seeker, I’ve been through hell, literally, from being rejected, from being homeless, from, from, from being refused entry to venues here because of the strange ID that I had. I’ve been through it all. But with them, and it made it easier with me, to, to… So that’s why it’s... Having that is very important and having a shoulder to cry on I think is the real meaning of the community and for me being supportive. You know that friend who you did something really worse than, that you can think of? “I support you!” That’s my community... And if you feel so ridiculous and you did like a strange dance. Or you went to ask someone else and that person rejected you, you have someone to hold your hand while crying. So, yeah. And no judgements, you know, like as well. When I came to here I didn’t have to only come out as a gay man, but also a person living with HIV. And I think I was naïve at first to think there that is no stigma here in the UK and there is no discrimination here in the UK. And of course I was hurt. One of my partners, like, one of my exes broke off with me because of this reason, me being naïve that ‘oh, HIV is not a problem in the UK.’ We are not in Morocco or a developing country. We are in a developed country. And I was wrong, of course, there is a lot of stigma, there is a lot of things… But with the community that I have and my friends and they of course they ask questions because they were not aware of what it means to be living with HIV. But there was not a stigma. It was just: “I want to understand it more, I want to understand it for me to support you more and understand you more.” And that’s how we should be, you know? Not being afraid of asking questions. And to be living together and I think that’s the essence of a community.
\nI think in Wales, in general, having a safe space is really tricky. God. It’s really tricky, especially for an ethnic-minority person it’s really tricky because the community here in Cardiff – I’m not trying to slander anyone, but this is the reality – it’s so white. It’s merely catered for white people. For, and merely catered for the white CIS men, you know what I mean? Even when I was… Even when I moved here that was very noticeable: that the music is for white people, the drinks is for white people, the decoration, the decoration of the venues are for white people and also, like, for asylum seekers and the refugees the drop-in centres and the what-not, they merely caters to the straight man. You know, they are not catered for the women, they’re not – at all! There’s no safe spaces for the LGBT community here. And, and the only safe space going back to Glitter was that. It was Glitter every month for two hours, which was like, and then you’re going to go back home doing nothing as an asylum seeker, where you’re not allowed to work, you’re not allowed to do anything. You’re not allowed to volunteer but the organisation that you’re allowed to volunteer with are not safe for a queer person and it took, I think… And we are working on creating safe spaces here in Wales not only for the LGBT community who are white but also mostly for the ethnic-minority, but for me as someone who really suffered homophobia from the first-hand with the housing system provided by the Home Office and the feeling, feeling like: “Oh my god, I left that community!” and I run away from hate and crime and being not myself to be put in the same house with that, with that hostility. And we are trying to create a momentum of… with the Home Office and Clearspring who are house, who are housing providers, to create a safe space for actually the next generation of asylum seekers who want to be here. But to answer about the safe housing here, safe spaces here, I think every individual creates its own safe space. You know? And my safe space was my room. Now I do have a lovely support in my new house, but I’m getting used to it. It’s not something that I… It’s since like since February, so it’s like trying to feel that I actually am safe in this room and I’m safe in this house and getting over the pitying state that was built up and created over for years and…
\nIf I had to describe myself… If I would have to describe myself I would start with first of all loud. Talented, for sure. Kind. Imperfect. I cry a lot, emotional. And… Energetic in the right time and the right moment. And… enthusiastic as well, and hopeful for the future. And want something… I want something… unity. And I want clarity and I want transparence, something that we don’t have unfortunately in the UK the way I imagined, so… Yeah, that’s how I will describe myself. And of course totally gorgeous and beautiful. And, of course, yeah. Don’t touch my hair!
\nI would like to add to this interview, I think, we always I think for me, what I would like… Okay, I’m going to repeat. What I would like to add to this interview or to this piece is that sometimes we focus on the perspective of the others towards people living with HIV and sometimes we forget people living with HIV themselves this series or this piece of art will hopefully inspire another person living with HIV who had bad feelings about themselves of self-hate, regret, shame, self-blame and all that. That: it’s okay. It’s no-one that wants to put themselves in this position but it happens and life moves on and life’s still beautiful and people will perceive us the way that we perceive ourselves so think of that. I think it’s very important to not self-stigmatise otherwise we’re gonna be stigmatised again. That’s it.
\n"},{"id":"s89df9","title":"Stephen","href":"stephen","mainImage":"stephen.jpg","images":["photo-67.jpg","photo-70.jpg","photo-71.jpg","photo-72.jpg","photo-73.jpg"],"audioFile":"/static/audio/stephen.mp3","shortDescription":"Stephen's photos","longStory":"\nMy name is Stephen Hart, I am an actor and a YouTuber and I have been HIV-positive since 2006.
\nWhen I think of home I think of, I think of home, I think of my home, the place that I feel secure in, the place that I feel comfortable in, the place that has things around me, you know, that reminds me of people, photographs or ornaments or my posters in my hallway, you know, that remind me of what I’ve done with my career and things like that, so this… This home is home for me. It’s kind of… Yeah, it all falls under that umbrella of a place that makes me feel safe.
\nMy home is… It’s a bit like an art gallery, a museum. That’s the best way to describe it. I have pictures. I have all my pictures in my hallway of all the different shows that I’ve seen or I have been in and that I’ve worked on or that have friends in. And then I have a massive DVD collection which is something that people don’t have anymore, but each one of these films has a meaning for me and a connection with a time and a place in my life and then photographs. I’m a big photograph buff as well, so I have photographs of people and places and I like looking at them every now and again, it’s good memories. Photographs, you know, because of the memories that they can stir up, the good and sad memories you know. I think photographs do that, don’t they? They’re very, you know, they can make you feel, they can take you back to a time and a place and… Yeah, so photographs for me are very, very important. That would be the object that I think I would connect the most with.
\nI suppose my feeling of home after my diagnosis it became… It’s always been important, it’s always been very important. I was homeless when I was younger, so home has always been very important. After my diagnosis, I think it became even more important because I had… Once I closed that door, it gave me a place to fall apart, because for the first two years after my diagnosis I needed to fall apart and I needed a safe space to do that because I couldn’t do that… I was still working, during the day I was still acting very normally, you know, and I wasn’t allowing people to see what was going on inside so... I would close the door so my home became that safe space to fall apart in. But as the years have gone on it’s also become a place where I’ve grown so I don’t fall apart very often now. It’s more a place of comfort.
\nI became homeless when I was fifteen-and-a-half. My mother… I was adopted and my adopted mother had schizophrenia and from the age, from when I was about thirteen to when I was fifteen-and-a-half her health was getting progressively worse and it was something that was a secret. It was another secret that I wasn’t allowed to tell anybody about and that she didn’t disclose to anybody, so it meant that behind closed doors our world was falling apart but nobody knew and eventually, by the time I was fifteen-and-a-half, I was starting to have my own opinions and my own beliefs, my own thoughts and things ,and that with her schizophrenia just…. It enraged her, it made her angry and after a huge argument one day she kicked me out. She told me I was adopted, which I didn’t know. So it was kind of a double-whammy and I became homeless and I spent six months living on the streets in Glasgow. And it was really, really tough because I was so young, I was so alone because I couldn’t tell anybody so I continued to go to school for six months. Every morning I would, sorry, get up in the morning from where I was sleeping. I would go to the bathrooms in school, I would get washed, I would get changed, I would be in school for 7 o’clock and I did that for six months and didn’t tell anybody because, because that’s the only thing I’d known throughout my life because I’d always been told ‘don’t tell anyone’, so I didn’t tell anyone for six months and it wasn’t until the end of six months that one of my teachers clicked and started to put two-and-two together and spoke to people at school and then they contacted social services and social services came and spoke to me and it all came out after six months, but living on the streets at any age is tough but being a child living on the street is really hard. So it was a tough, tough time, you know, and especially being cold and scared at night and you know, it’s, it was a very hard thing to cope with as such a young… I was a child, you know? I look at kids now that are fifteen and I think ‘god, they’re babies,’ you know? I just think it’s too young for somebody to deal with that. So yeah, that was my homelessness journey.
\nI think, for me, there was a… I think as a young child growing up in a home where there was a lot of physical abuse, there was a lot of sexual abuse. All that was going on from a very, very young age and I think that there was something inside me that was… It was a survival, it was like survival-mechanism just kicked in and that was what kept me going. There was just something inside me and I don’t know where it came from. I don’t know, I don’t know how I had it and somebody else might not have it, but it was just there and I just kept… I kept… When I was a young child I used to watch television and I would watch these families in these television dramas, you know, and think ‘that’s normality’. And I knew it wasn’t normal because it was television, but as a young child I just looked at it and thought I knew that what I was living wasn’t right or normal, so I would lose myself in television. So I think I was always striving for that perfect Waltons or whatever, you know, the family drama that I’d been watching might have been, you know, type thing. There was… I always say it was stubbornness and… A survival mechanism and stubbornness was what got me through.
\nAfter my diagnosis, I felt excluded from theatre definitely because my agent – not my last agent, but my agent when I first came to London – we were discussing things one day and I don’t know if it was, I don’t know if it was when somebody had died of AIDS or... Something had made the question come up in conversation and she said to me, this was before I was positive, that she said to me “Stephen, nobody with HIV or AIDS will ever be a leading man in a West End show here in the UK,” and I think this was about five years before I became positive but that stayed with me, so when I became positive I was working in theatre, I was acting, I was… but I felt so excluded from that community and that space and I knew that there must have been other people but nobody spoke about it. It was 2006 and nobody was speaking about it, so I did, I felt very… I felt… I kept going back to what she had said, I kept thinking ‘I don’t have a place in theatre anymore. There’s no place for me.’ And I think I began to step back from theatre and I definitely felt excluded from my friends as well, I couldn’t… I became HIV-positive after a rape. It really makes you step back from everybody because you feel nobody understands what I’m going through and however much people try, they can’t get what you have experienced, you know? It was… I really, I felt very excluded. I felt excluded from the whole world. If that makes sense? I just felt as if I didn’t have a place, anymore. And it really made me question ‘should I still be here?’ I really… I felt that definitely for those first two years I used to think about it, listen to music, you know when I came home at night and just think ‘I don’t know if I should be here anymore’. So, from a lot of places I felt excluded.
\nTheatre for me was my world. As a young kid, I’d look to – as I said, I mentioned to you earlier – I looked at these people and idolised what they did and their craft and as I got older I started to learn more and more about it and I wanted to do it as a career but was told “… it’s a hobby.” It’s not a career, you know? So the careers people told me it’s a hobby. When I eventually went to college, trained, left college, came to London, started auditioning and then got my first West End show. It was everything, it was everything. To stand on that stage, you know… There used to be a scene in Bombay Dreams when I would come onto the stage and it would just be in darkness and then there would be a spotlight that would shine down. Now, there would just be me on the stage and I would have this song called ‘Love’s Never Easy’ and I used to look up at that spotlight and I used to think about my life and what had happened in my life and look at where I was now and I kind of used to pat myself on the back every night, you know, and just go ‘look’. So, theatre for me was everything, you know, and to be excluded from that was devastating, you know, because I thought ‘if I don’t have theatre’, I didn’t know what I had, you know, because that at that age, at that time, I didn’t really… I thought… As an actor you’re trained to give everything, your life, soul and all your finances, everything goes into being an actor and I was still at that stage in my life, you know, so… I kinda didn’t realise then how important friends were. That’s something that came as the years went on, so to lose theatre for me was, yeah… Was devastating.
\nWhen I started to tell people it was awful. It was one of the most awful things that I’ve ever had to do because I had to tell these people that I cared about, that cared about me, I had to tell them that I’d been raped and then I had to tell them that I was HIV-positive, so it was like being punched twice, you know, it was… And some of them dealt with it and others fell apart and I think back to it now and think ‘god, some people were so dramatic,’ but it was really, really unbelievably difficult and some people stayed and some people didn’t. You know, I lost friends. I think back to that now and it still makes me sad. I don’t think you ever get over losing people because of something that has happened to you, you know like HIV. So yeah… It was, it was a tough time for me and for my friends as well.
\nA negative of being diagnosed would be losing friends and also there was… I had a friend in my life who was a lot older, she was in her... Molly was in her sixties and I never – she’s passed away now – but I never told her and it was always that secrecy between me and her. I thought to tell her would have devastated her and I just didn’t… I told so many of my other friends and I just thought that I could never tell her, you know. And she died and she never knew… And I’m glad that she never went through having to know, but also when she was here it was hard because I couldn’t tell. But, to lose… I lost one of my best friends when I found out I was HIV-positive and it wasn’t because she was a bad person or… It was simply because – and she told me, we spoke one night when she’d had a few glasses of wine – she said: “I can’t cope with watching you die.” And that was in 2006 and she thought then, you know, that I was going to die and to be honest I thought that as well, you know. For those two years I thought ‘I’m just waiting to die.’ So, it wasn’t, it wasn’t something that I blamed her for but it was, it was unbelievably difficult and it still is to this day, you know, will it occasionally, you know, as the years have gone on, you know, we occasionally text on birthdays or Christmas but I still lost somebody that was a massive, massive part of my life. A massive part of my theatre life as well because that’s how I met her, through theatre, so it was, yeah…
\nI suppose a positive out of it is just that I have… I think just that I have found a strength in talking, you know, I think, I think talking about my life is something that has been a massive thing for me and there was so many secrets growing up as a child and the reason I was homeless for six months was because of secrecy. The reason I became homeless was because of secrecy. My adoption was a secret. There was so many secrets, so to break down that wall of secrecy, not only about my life but about HIV as well is actually a really refreshing thing because it’s so nice to be able to say “… well, I don’t care who knows, I don’t care, let them come to me, let them ask me.” Because I would rather people came and asked me questions so that I could give them the correct story, you know? So it’s… In that sense, it’s very empowering, to be able to go: “Yep, this is me.”
\nMy community was always being with people and being part of theatre groups or other acting-related things so that was… That was my being part of things. I suppose now, obviously COVID has affected us all massively. My communities are smaller. I suppose I look at my friends as a community and, you know, I have fewer friends as I’ve got older but they are good friends and although there’s only a few I know that they’re there and that I can rely on them. I think as you get older your friends tend to get smaller, but… I suppose I am and I’m not, you know, that’s my answer to that question. I kind of feel I’ve never been... Unless I’m there with people that’s my community. I’m not best at being an online-community person or a, you know, so I tend to leave all that to other people.
\nAmongst my DVDs and my two cats and the photographs and all those kind of things that is my safe space I suppose. Outside of that, theatre, you know? To go to a theatre again will be amazing because although I’m in the audience now, I’m not on the stage, it’s still… It still does something for me. There’s still a fire that gets lit every time I go to the theatre. And a reminder of what I had and the life I had there. And there’s also a part of me that thinks, that hopes, that it’s not over, you know? Although I’ve not done it for a couple of years there’s definitely a part of me that still feels ‘I would like this to happen again one day.’ So, it’s… Yeah. I suppose that’s a safe space for me as well.
\nI would describe myself as… Sometimes I don’t like the word survivor, but I am. You know? And I think you can be a victim and I was a victim for many years of many different things but I’m not a victim any more and that makes me a survivor and I’m a proud survivor. I’m a talkative survivor. I’m a mixture of a lot of different things, but I kind of like most of them, you know? I do like most of them now. It’s taken time. It’s taken time to get to this point, but, you know, that’s how I would describe myself.
\nSo, I decided that.. Obviously, my life changed massively seven years ago. I had a transplant and there isn’t any room for you to be an actor and be sick, you know. Casting directors don’t have time, they’re not interested and I knew that I had to create my own community. I had to create my own way of being creative, you know, because the creative juices were still there, however sick I was, you know. So I started a YouTube channel called ‘Hart Talks’. It gives me a space to tell my story, talk about my experiences, my life. But it also really – which is the most exciting thing for me – is it allowed me to open the doors for other people to tell their stories. And that’s what I’ve found I love doing. I love doing interviews with people. I love finding out their stories, finding out what’s happened to them in their life, you know. Quite often I’m just left sitting there going ‘wow’, by people, because I just think they’ve had such a life and they have such great stories and yet, I just think there’s something in that I’ve always… Ever since I wrote my one-man show, I said we all have a story and our stories are important and it doesn’t matter how big or how small your story is, we all a right to tell it. And if you decide to not tell your story, then that’s okay as well. It’s just, I just think we’re brought up with the ‘don’t-tell-anyone, never-tell-anyone’ and that nearly killed me. So… I kind of want to rewrite it and say “… if you want to tell somebody, then my channel will give you that option, to do that. So, yeah.
\n"},{"id":"tim213123","title":"Tim","href":"tim","mainImage":"tim.jpg","images":["photo-24.jpg","photo-58.jpg","photo-60.jpg","photo-61.jpg","photo-79.jpg"],"audioFile":"/static/audio/tim.mp3","shortDescription":"Tim's photos","longStory":"\nHello. My name is Tim, I’m 56 years old. American living in London. I work in the banking world. I’ve a very good job at a German bank for which I won’t give the name, but… And I’ve been in banking all my adult life, so it’s kinda sort of what I know.
\nI’m gay. Gay since birth, obviously. HIV-positive since probably the mid-, say the mid-20s perhaps. Maybe I got infected in, when I was, when I was 21, 22, but I didn’t find out ‘til I was 30, and… But that’s not really who I am, obviously. HIV’s not who I am so it’s kind of sort of in the background now. Back in the ‘90s it was more in the foreground because it was more new and more… Medicine, medicine, medicinal-based, more medication back then. But, obviously, now: I am who I am. And I say I’m a gay man, number one. Number two, my, my… My job, I’m a banker, number two. Number three’s a mix of different things, you know, things I love, people who I love, things I like to do, where I live. That’s number three.
\nTo me, home is where I think I physically am, at the moment. I mean, obviously, home could be for most people where their family is or where their partners are or where their favourite, I dunno, favourite pair of socks are, perhaps, but for me home is where I am physically at so if I literally get up now and get on a plane and go to, like, let’s say for instance, Mongolia and get a flat with nothing just myself, to me that would be home. So I don’t define home as possessions, I don’t define home as people, I define home as where I’m physically at and I’m happy. I gotta be happy there so I think that if I go to Mongolia and I find a place to live and I’m happy that’s gonna be home.
\nFor me, defining home is not materialistic, it’s not people-based, it’s not family-based, ‘cause I’ve lived away from my family since I was 18 and I’ve had… I have lots of friends in London, lots of friends in New York. I used to live in New York in the ‘80s and ‘90s and I left New York to come to London in 2003 and at that time during those decades New York was my home. Because that’s where I lived. That was my apartment, that was my physical effects. That was home. But since I moved to London in 2003, immediately London was home, ‘cause I got a flat, London was home. So, it’s not really… I’m not really held back by family, community, possessions, even job. Where I wanna be is home.
\nFor me home was always basically when I was a young, young kid growing up, growing up living with my parents and my brother that wasn’t really my home to me it was more like my parents’ home. I was forced to stay there because I had no other options but to live with my parents when I was younger. I couldn’t get a job, obviously, y’know, I couldn’t feed myself. I had to live with my parents but living at home with my parents was never actually… I never felt like it was home.
\nIt was only when I moved to New York when I was in my early ‘20s that I got my first apartment and made my first friends in my early ‘20s and started exploring my sexuality and kind of sort of getting my own apartment, to me that was actually my first home. Sure, I lived in the dorms in college but dorms are not really home they’re more temporary accommodation, they’re not quite, they’re not quite home. You have to share the bathroom, share the shower, you have to, you know… Check in the front desk, well, well thats not really home. But for me home is actually for me when I paid my first rent on my first apartment. To me that was home.
\nSo the first strong positive reaction, positive not negative, positive reaction I had with HIV, I think, I dunno, I think the first positive moment I felt was when was I just stopped thinking about it. Before, when I got diagnosed in ‘95 after my partner passed away, the medication was just constant, constant medication, I was just.. I wasn’t working, at that time, and I was a bit sick and it was just constantly on my mind, physically in front of me all the time and I lived in Manhattan, Greenwich Village and you see people all over the place looking sick in the Village back in ‘95. I mean, people were pretty much walking around looking like they were on death’s door. So the first positive reaction I had being HIV-positive was when I actually stopped thinking about it. That’s when I thought, like, I can live like a normal life without actually thinking about it all the time. To me that was a positive thing about it. So. And that probably didn’t happen, ‘til probably ‘97, ‘98, about three years after my diagnosis because the diagnosis was really very sudden and too… Very quick. But after a couple of years you get used to it, it settles down. And then you forget about it and you just take your pills twice-a-day and to me that’s a positive thing. It’s not really going to be… It’s not going to define your life.
\nLike a lot of people that are HIV-positive, the negative reactions outweigh the positive reactions. Negative reactions could be people’s perception, people’s attitude, people’s behaviour, people… Other gay men denying you a one-night stand because you tell them you’re positive. I’ve had that happen to me so many times it’s insane, really, it’s totally insane. I like to tell people my status, it’s their choice to walk away or to stay, y’know, what can I do but I wanna disclose, but… Yeah, the negativity’s, even, even today, you know, obviously in 2021, I find that if I tell a friend I’m positive I expect negative reactions still. Because some people still don’t get it. They still don’t realise that people like myself got infected before we knew what it was back in the ‘80s. So people who get infected now probably maybe less educated, but people still think of it, you know, negative, negative aspect of it. So yeah, even today I hold back on telling people ‘cause I don’t want to get a negative reaction. So it’s their, it’s their attitude, not mine, it’s their attitude.
\nOh totally, I felt excluded many times. I mean a case-in-point was when I was with a friend of mine in London about ten years ago. I was after work and I had my HIV medication in my backpack to take with dinner later that night and him and I happened to walk into a club in Angel and they checked my bag and they found the medication in my bag and they thought, like, it obviously could have been drugs, like ecstasy or whatever, Meph or whatever, but they, I told the guys: “My HIV medication, I need to take it with dinner later blah blah blah, I’m not going to go back home so I brought it with me blah blah…” And then my friend’s reaction was like: “Oh my god, you’re HIV-positive?” He was so shocked. But then we carried on that night with each other but I never heard from him again, ever again after that night. He kind of stopped contacting me, this was about ten years ago. This is an educated guy who works in the City, you know, smart, you know whatever, but he just couldn’t accept, he couldn’t accept it, so you know… That was I think another major negative reaction I had. Disclosing my status to a, not just to a friend but to a stranger. The doorman at the club who also knew because I said that, a stranger, so yeah… He didn’t let us in by the way. We couldn’t get in because of my drugs. They were drugs obviously they were, they were HIV medication, so… Aye aye aye aye aye, sorry… Hm. Anyway.
\nI think in terms of family relationships, I think things stayed the same. I was never really close to my family to begin with, so when I told them my status nothing really changed. They didn’t really, they didn’t really make an effort to like reach out to me more, y’know, help me out more, kind of everything stayed the same which I was fine with. I don’t need them to help me out, you know obviously, I’m a grown man I can help myself out but… So family stayed the same. Aunts, uncles, my aunts, pretty much nothing changed. Friends, like I told you a couple of examples a lot of friends shunned me because they found out I was positive and a lot of, a lot of friends shunned me. Even though I told then, you know, by the way you should know blah blah. But then I had other friends who really embraced me, who said: “It’s fine, I’ll be here for you if you need something further down the road, it suddenly happens blah blah…” Yeah, so relationships… Family stayed the same, some friends walked away, some friends got closer, yeah…
\nI think being a part of a community means being a part of any community. I mean, I’ve got my HIV friends, I’ve got my, my gay, my other gay friends, I’ve got my Latino friends, I’ve got my mix of straight friends, I’ve got my mix of my gym friends, you know, I’ve got my mix of sex friends. So all those are separate communities in my point-of-view, so, you know, I belong to all those communities because I made a choice to have all those people in my life, whether they’re sexual friends, nightclubby friends, bar friends, I’ve got friends I just go to restaurants with, my restaurant friends. My gym friends I see at the gym, at the time, all the time, you know? People that I meet, it just, yeah.
\nI belong to many, many communities. Yeah. Somehow they overlap, but most of the time they don’t, because everything, everybody’s in a box and, I know my sex friends I keep them separate, I don’t want them to meet my other friends because I don’t want them to start having sex with each other, so… You know, I like to hold on to what I have, right. But then the gym friends are purely focused on the gym because that’s where we know each other from and they’d never really want to mix with my restaurant friends, if that makes – [loud phone rings] – sense, yeah? Sorry ‘bout that… Yeah, it’s fine, it’ll go to voicemail. But, yeah.
\nI think, ‘cause I live alone, I find my flat to be my safe space because obviously I live here by myself. It’s a small, one-bedroom flat but I feel safe here, you know, I feel safe. Nobody can be knocking on my door, nobody can be walking in to my flat, I don’t have any room-mates, no partner. So for me this is like my safe space, my own flat.
\nMy flat is actually small. I live alone so it’s really perfect for me, I find my flat to be really perfect ‘cause I’ve got a separate bedroom, plus a separate bathroom with a shower obviously, with a combined kitchen-living room-dining room, with nice big windows overlooking London, with a lot of clouds all the time, very cloudy London. But yeah, for me my flat is actually… I find it perfect, you know, ‘cause obviously it’s centre of town, centre of London. I walk out the door I’ve got ten coffee-shops within a two-minute walk. I’ve got lots of restaurants. I’ve got theatre right outside my door. I’ve got my gym two minutes away, so… You know, my flat is actually the perfect flat for me and my lifestyle.
\nTo describe myself? Obviously that’s hard because I don’t like talking about myself… I really don’t like talking about myself. I’ll say that again, I don’t like talking about myself. But to describe myself I would just say I’m a normal, normal, normal 56 year old professional, gay professional, gay first, professional second, erm… That’s it. There’s really nothing to describe. You know. I like to be social, I like to go out all the time, I like, I like the clubs, the bars, I love the gay scene. So I said before, many times, the gay scene is who I am. Being gay is really who I am. It’s not the colour of my hair, it’s not how tall I am, it’s not my friendships, it’s not my family. Being gay is… I wake up in the morning, I’m gay. I go to bed at night, I’m gay. I mean, you know, I see a good-looking guy on the street, I get aroused and I’m gay, you know? It’s just kind of, sort of, it’s who I am.
\nSo basically in 1990 when I was living in New York, I went to, I belonged to a gym called Jack Le Main Gym and my partner, my future partner was also a gym member there and somehow, some ways, I don’t know what happened but we looked at each other across the room which sounds very, very hokey, it sounds very like a film but we looked at each other and kinda knew, I kinda knew, he knew, it was just we just kinda knew ‘oh, this is the guy I’m supposed to be with.’ It was just the weirdest thing because we’re in the gym with all these good-looking muscle boys working out, sweating, testosterone filling the air, you know, sexuality, homosexuality just bursting at the seams in this gym and then this guy, this normal guy – his name is Carlos – normal guy, not big, not muscular, just normal, normal body, just normal, to me a very good-looking face, we just… We started talking. Then we had a date, like a thing, I mean this is going back thirty years but we had a date that Friday. And then we had another date and we kissed. And I got so aroused I was like: ‘Woah.’ You know what I’m saying? I got really... But he was like: “No, let’s wait, let’s wait ‘til, you know….” He was very smart to say, like, ‘let’s wait.’ We waited to have sex for quite some time. For gay men that’s quite unusual. Because he kinda knew, I kinda knew, it’s probably best to wait because we’re like, what? 23, 24. 24, 25. We kind of wanted to jump into bed right away but just thought: ‘No, okay, you know blah blah, we’ll wait for a while.’ So we waited for a while and then we did it, obviously, eventually, on his rooftop in his building. We did it outdoors. In the New York summertime it was really, really hot so we had sex on top the roof. People were probably watching from the building next door, but… It was dark, it didn’t really matter.
\nYeah, so… He was, he was Venezuelan. I met him when I was 24, he was 24, we were both the same age. He was a chef. So basically he did all the cooking at home. We moved in with each other pretty much right away. I mean it happened, it happened really quick. ‘Cause he had a roommate but his roommate died, unfortunately of AIDS, his roommate died, literally like pretty soon after I met Carlos and so I moved in, moved in with Carlos in a two-bedroom apartment in New York in the Village. Great apartment, great, lot of space. Two-bedroom, really nice apartment. At 24, two guys living in a really big apartment, at age 24 in New York, in the Village. Back in 1990, who… You know, it’s… Those were the days. You can’t do that now, but you know… Those were the days back then. You could actually do that as a 24 year old, you could get an apartment in New York in the Village. Crazy, but, but…
\nAnd he was a chef, so he made all the meals, he never let me cook, I never cooked. Not allowed in the kitchen. So he cooked all the food and blah blah blah. I did all the dishes, but… Yeah, but he, probably a couple of years after we met he started getting purple blotches on his skin and we knew right away it was Karposi’s sarcoma. We knew right away and he knew right away and he knew where he got it from because his previous partner was an older gentleman, like twenty years older than Carlos, and he was sick. So Carlos realised he probably got the HIV virus from… This guy’s name’s Bob. So that’s where Carlos got infected, so, y’know, what can you do, so… Carlos was pretty healthy up until the very end. I mean, he was literally very healthy going out, going to the gym, you know… Up until six months before he passed away. He was just, y’know, normal, but everything happened so fast and…
\nHe died before the cocktail combinations came out in ‘95. People started taking combinations of cocktails in late ‘95, where people would take three different types of medication, where he was only taking one, he was on monotherapy because that was the, that was the routine, or that was the prescription back then. One pill, one type of pill, back in ‘94, just… The doctors didn’t really think about mixing them up until ‘95. But ‘94 he just took one pill a day, made him really sick all the time and he just got sicker and sicker and sicker and sicker and then he died when he was 30. He died on Oscar night in February, March 2000, I’m sorry, March 1995. Literally the year Forrest Gump won all the Oscars. I remember the body was in the bedroom and we had the TV on and the Oscars were on and they were saying: “The winner was Forrest Gump.” Tom Hanks, Forrest Gump, the Best Picture. I just remember people in our apartment coming in and the Oscars were on TV and his body was still in the living-, in the bedroom and in our bed, dead. He had passed away. That night I just hear ‘Forrest Gump, Forrest Gump’ all the time. Plus people coming to visit. Yeah, so he passed away when he was 30.
\nSo, and literally six months after that and I got tested and I found out that I was positive as well. But he, him and I, assumed that I was negative. He always told me: “Oh, you’re definitely negative, I can tell, blah blah…” so I never really told him, he never found out that I was positive. So I’m glad that he never knew that I was positive. You know, obviously, I don’t know if that would have made a -. Whatever. But he always assumed I was negative and I assumed too. Who knew? Who knew? But that was Carlos. He was good-looking. He was a Matt Dillon lookalike. Not Matt Damon, a Matt Dillon lookalike. Tall, totally 50 – 100%, 100% match to Matt Dillon. You know Matt Dillon the actor? Good-looking, dark hair, curly black dark hair, gorgeous, gorgeous: that was Carlos. To a T. But yeah, yeah so… That’s Carlos. And I still think about him all the time.
\nWe had what’s known in New York as a railroad apartment, railroad, so it other words was like you walk in one door and the whole apartment you just walk through, it’s like a walk through. You just walk from one end to the other. So we had the front door, then you had the bedroom as you walked. Then we had a terrace, so you literally can walk through to the terrace and terrace overlooks the little park in Greenwich Village. And we’re on the top of the floor hence the sex we had on top of a roof, because that was right above the apartment, you know? Nobody else went up there, so… But we had it great, we had it made, a gay couple living in Greenwich Village in the early ‘90s, you know, you know, so we had it made but that all came crashing down when he passed away, unfortunately. As most things do. Storybook romances tend to be more disaster movies, you know. We had this beautiful storybook life, relationship, and obviously came crashing down. So, yeah…
\nMy family kind of knew I was gay but I never really told them about Carlos because, I’m not… I was never really close to my family. I mean, my brother not close at all, he’s totally straight, anti-gay. My Dad’s a bit not really gay-friendly, either, as my Mom was very gay-friendly and gay accepting but again I just never really felt close enough to my family to share Carlos with them, y’know, ‘cause I lived in New York. To me family was New Mexico, like a whole different world away. Like I had my life, my home with Carlos in New York. My, my family, I wanted to escape them. When I was eighteen, I left when I was eighteen, I didn’t want to be with them anymore because I didn’t really feel like they were my family, if that makes sense? I never really felt at home at my parents’ house. I never called it home, I called it my parents’ house. Never was my home. So I never really felt comfortable there. I’m not… I just never felt like it was home, never. So I never felt like I needed to share Carlos with my family because Carlos was mine. He was all mine, you know what I’m saying? Not my family’s, he was mine, so. But it was only when Carlos got sick that I had to tell my Mom what was happening because, you know, I was… I thought maybe I should kind of share something about, you know, about my life with them. But by then Carlos was already, you know, sick. Literally he died like probably a week later after I told my Mom he was sick and at that point my Mom probably also figured out that I was positive. Although I didn’t know myself, but you know, obviously my partner was dying of AIDS and I was with him for five years sexually, you know whatever, living with him for five years and obviously it was only just a matter of time before I found out I was. Yeah.
\nWe made sure he died at home. He was, for the six months before he passed away he was in and out of hospital. In and out, in and out. It was like, it was like a factory. Luckily the hospital was down the street from where we lived. Literally, we were so lucky. Right around the corner the hospital was right there so it was easy to just manage him being in the hospital. I’d go home, get stuff for him, go back to the hospital, get him a change of underwear, socks, whatever, you know. It was actually really convenient, you know, so, but yeah, yeah, it was a… Yeah.
\nI think since I lived in the flat after he passed away for another, another, how many years? Six years. No, eight years. I lived there eight years after he passed away. It was home before he passed away and it was home after he passed away. Obviously, because it was my home… You know, it was more home when he was with me alive but it was still my home after he passed away because it was still my flat as well. So… But, it was probably maybe more home with some- with a partner ‘cause we did things together at home, watched movies together, he cooked, I cleaned, you know blah blah. So it’s more of a home when you’re with somebody, but it’s also a home when you’re alone as well. Yeah, so that definition of home didn’t really change, a lot.
\nI think in New York there’s so many communities. A lot of his friends were Venezuelan, Colombian, people that from his, where he grew up, where he was born in Venezuela, so a lot of his friends, a lot of his friends were like living in New York were from that part of the world, you know, so… They all, they all came, plus my friends came as well. So my friends from New York or wherever or whoever were available at that time, on that… It was on Monday night, so Monday nights were, you know, hard to, you know, in general, so people were literally working all day and then came to my apartment to see me because my partner’s just passed away so, yeah. So different types of people showed up. My friends, his friends. The nurse was there who gave him the… Closed the, helped us with the body, you know. My neighbours downstairs were there as well, in my flat, just kinda helping out as well, so, yeah… Yeah yeah yeah. Twenty-six years, I can’t believe how quickly time has gone, twenty-six, he passed away twenty-six years ago. Twenty-six. Yeah, but I think about him all the time. His picture’s right in my foyer. When I walk in, almost eye-level, picture of him and facing the door so when I come in, first thing I see when I turn on the light is him and me. A picture taken in 1993. So, yeah. He’s still, he’s still there. Strange, but he’s still there. Yes, yeah.
\nI think what happens is when people pass away, they’re remembered… People have their own ways to remember people, you know, like, I’ve got my own way to remember people, other people have their ways to remember people, whether it’s a scarf, whether it’s a jacket. I still do have some of Carlos’ clothes in my chest-of-drawers, you know, like his old, well… When I first met him he was wearing these really tight blue workout shorts, which I still have. I kept those, I held onto those. I don’t wear them but I just, you know, it’s his, they were his when I met him so it’s something that I’ve kept for a long time, you know, so… But I think remembering people, people have their own way of remembering people whether it’s through the brain or through the heart. Through physical things, you know, it just depends really. Like my Mom obviously she just passed away, I think about her all the, I mean, literally all the time, all the time you know, so Carlos, my Mom, they’re like fighting for space up here and up here, they’re really, they’re fighting for space, they really are.
\nI think just in general terms of Carlos I think as the saying goes ‘it’s better to have loved and lost than not to have loved at all.’ So I’m just really glad I had him in my life when I did, for the short period of five-and-a-half years I knew him. It was a strong bond, it was just a strong love with each other. I can’t describe it, it was just… We were like two young gay men in our twenties in New York in the early ‘90s and we just seemed to, just seemed to fall into place with each other. It just happened organically, naturally. I don’t think I’ll ever find that ever again but I’m glad to have had it in my life when I did at that time when I was in my early ‘20s, mid-‘20s, you know, navigating New York city as one does in the early ‘90s, you know, and finding your partner, you know, just like at the gym, of all places, you know. It just kind of happened organically, so, yeah. So I’m glad I had that experience with him and I’m sure he’ll say the same about me. He’s, you know, lucky he had me in his life to help him to the next life, if that makes sense, yeah? To the next world, yeah.
\nI mean I said before HIV doesn’t really define who I am now but back in the ‘90s it was all in my face all the time, I was going to the doctor all the time, it was all new to me. Plus, with Carlos, with him going to the doctor it was in our lives all the time and then when he passed away and I became… I knew I was affected, it became my life. I stopped working because I became HIV I thought I was going to die within, within a year. This was ‘95, I got diagnosed in the summer of ‘95 after Carlos passed away on March ‘95, so I thought when I got diagnosed: ‘oh, I got a year to live.’ I literally didn’t think I was going to live to see 1997. I really didn’t, I really didn’t. I just didn’t think I was going to be here. Now, looking on it, I’m 56 now and I still can’t believe I’m still here. So I think I’m living for, living my life for Carlos and for all other people who passed away with HIV/AIDS back through the ‘90s and whatever, ‘80s. I mean, we lost tons of friends. Me and Carlos lost, we lost like a whole section, a group, a community of friends in New York that all died of AIDS and Carlos was one of them. And after Carlos passed away, more friends of ours died. The ‘90s were just, they were just non-stop. They were literally… and I had a cousin who died in ‘95, before Carlos died. He died back home, where I’m from. He died, in Texas. An older cousin of mine, a gay man, he died. And another cousin of mine who back home in my home town had AIDS for like twenty-five years but he just, he passed away in 2010. Not of AIDS, he had a heart attack, but he had AIDS pretty much all of his adult life. Yeah, so, you know. AIDS has affected not just me, my family and my friends. Luckily now, things have changed and people are more healthy and more… taking more medication and things so HIV’s more like in the background now, but back then it was brutal. Funerals every week and people… You’d see guys at the gym you know with… One minute they’re there and the next week they go and they have purple spots on their face or on their back then you see them in the shower, they look emaciated. That was the life back then in the ‘90s as a 25 year old young man, should not be living a life like that, seeing all their friends pass away and seeing people on the street looking like they’re ready to die. In wheelchairs in New York in the Village, you see guys in wheelchairs with a nurse pushing them, ready to die. That was normal, you know? You just, yreally can’t… Yeah, Greenwich Village was like a cemetery back in the late-’80s and early-’90s when I lived there it was just like, it was just like… You just couldn’t get away from it. Yeah. And I hope that sends a message to people right now to think about what we lived through. Sure, coronavirus is right here, right now. It’s pretty severe as well, but this was a different sort of pandemic that affected the gay community. Nobody shut down, there was no, there was no, what is the, shutdown, what’s the word I’m looking -. Yeah, there were no lockdowns or no government officials getting involved, there was nothing. We were on our own, by ourselves, to deal with this big pandemic, epidemic, pandemic, and there was nobody to help us out, nobody to, nobody, nobody to… There was no medication, no nothing. Nothing whatsoever. We did things ourselves. We had no choice, we had to… You know. Save each other. And some survived, some did survive, but yeah we had to fend for ourselves, so… That’s it. I wanna end on that note of: you guys have it made today. Back then Ronald Reagan couldn’t even say the word AIDS. Back in the ‘80s he just didn’t want to discuss it. And, you know, he was President until 1988. And by then it was… People were infected, people were dying, it was just too late. And Manhattan, Greenwich Village was like a cemetery. You know. Yeah. Crazy.
\n"},{"id":"verbar213sdf","title":"Veritee and Barry","href":"veritee-and-barry","mainImage":"veritee-and-barry.jpg","images":["photo-53.jpg","photo-76.jpg","photo-78.jpg","photo-80.jpg","photo-99.jpg"],"audioFile":"/static/audio/veritee-barry.mp3","shortDescription":"Veritee and Barry's photos","longStory":"\n\n Veritee: Hi, I’m Veritee and I’m 68 years old and I live in Cornwall.\n
\n\n Barry: And I’m Barry, Veritee’s husband. I’m 69. So, we’ve been here 35 years or so.\n
\n\n Veritee: Yeah. About 35 years in this house. We were in Ashton before, another village. But before that we were both London -. Well, he was more a Londoner than me.\n
\n\n Home is security for me. Not, I mean I did lead a bit of, a bit.. Not… I did lead a bit of an itinerant life in my early days. I squatted. I was homeless. I moved around a lot, mostly in London but I also came down here and lived in Cornwall as well in the ‘70s, in the early ‘70s. And other places because I didn’t really have any... Often, I would work somewhere and live-in, you know, in hotels and stuff. And I lived in so many places, and squatted, as I’ve said, mostly in nice squats, if there is such a thing, because we did them up and I squatted with the.. In some squats that were actually run by Piers Morgan’s brother. No, sorry, Jeremy Corbyn’s brother. Piers’ ran a group of squats in Elgin Avenue, he was an activist then, he’s a weird meteorologist now who doesn’t believe in climate change, but he gave me a place in one of the squats there, which was all done up. I mean, we had water and we decorated and it was a decent place to live in. A whole row of houses, like huge houses. So, that was a good one but I’ve had really bad squats, you know. And, so, home means security, no one’s going to move me on, you know I’ve got a bed to go to every night which is mine. I don’t have people coming in and trying to use it, use it as sort of... interfere with my life. It’s my security. Which is why I’ve got so many things, I’m a bit of hoarder. It’s peace and security and no one’s going to take me away from it.\n
\n\n Barry: Well, just having this, yeah, because I spent half my life working away, yeah. I mean...\n
\n\n Veritee: At sea.\n
\n\n Barry: Yeah, Nigeria, Ghana, Falklands. China, you know.\n
\n\n Veritee: South America.\n
\n\n Barry: South America.\n
\n\n Veritee: Brasil, where you got HIV.\n
\n\n Barry: That say, I spent half my life travelling, you know. So, having somewhere where I don’t have to go anywhere, yeah, it’s a base. That I don’t have to go.\n
\n\n Veritee: Ironically my dad was a seaman too. Should’ve known better. But he spent very little time, for years, you know. Although he would have leave, it seemed like very little time. Sometimes it’d be months away, sometimes only five weeks. But I felt on my own, you know. I was here on my own with my daughter in the end, but you didn’t spend a lot of time in those years. And ironically it was getting HIV that got him home because they... basically he lost his seaman’s ticket and he couldn’t go to sea anymore.\n
\n\n Barry: They took my medical certificate away and without a medical certificate, you couldn’t work.\n
\n\n Veritee: They wouldn’t let someone on constant medication… A lot, it wasn’t about… Less countries bar you these days but there were more then that barred you from being in their country, so you couldn’t risk that if your boat, your ship, went anywhere, you couldn’t go anywhere.\n
\n\n Barry: Well, I spent quite a few years in-and-out of America, which -.\n
\n\n Veritee: At that time was banned.\n
\n\n Barry: You couldn’t go so that was it.\n
\n\n Veritee: When you were diagnosed. Obama opened it out but when you were diagnosed America was a no-no. There was that side of it. There was also that thing they say – well, I think it was an excuse – they didn’t want anybody on medication in case they ran out and they couldn’t get it - which they needed to keep healthy and alive – so that’s, but… Yeah. But it brought my husband home because he would not have retired.\n
\n\n Barry: Well I would’ve done before now but it would’ve been another few years.\n
\n\n Veritee: And I hated it at the end. I absolutely hated it. I knew he was a seaman, but… Obviously, I knew he was a seaman when I first met him ‘cause he did it for forty-odd years, but I thought he did ten years and I thought: ‘That’s a good stint.’ I just assumed, but I didn’t talk it through with him. Not understanding. I thought he’d do about ten years and then he’d leave and find something else - because he’s an engineer - to do, but he’s not a risk-taker. And, you know, ten years went by, fifteen years went by, and he wasn’t gonna leave. And I couldn’t hack it anymore.\n
\n\n Barry: It’s just there wasn’t any jobs. Yeah, when I first started, the ones that were leaving, there was jobs in hospitals, looking after the plant, power stations, and that all went, so… There’s no work down here, so...\n
\n\n Veritee: Yeah, and we didn’t want to leave our home, ‘cause what it meant for Barry is that after… He’d lived onboard ship in very cramped circumstances - he was an officer so he had his own cabin - but you were on top of people all the time. It was pretty much the accommodation – ‘cause I’ve been on once or twice – are very small, you know. Though it’s a big ship the accommodation is tiny. And he could come here and spend five weeks in this place with beautiful scenery around him, fields, nobody to bother him unless he wanted them to, it was just...\n
\n\n Barry: I wasn’t getting alarms at two o’clock in the morning that you gotta get up and you’ve got three minutes to go and answer the alarm, otherwise all the alarms went off all over the ship and everybody was up. And it didn’t make you very popular if you did that.\n
\n\n Veritee: Anyway, yes, home is so peaceful and quiet. We dread leaving here. I mean, the thing is we’re so used to having all this and peace and quiet and that’s the main thing. And it’s comfortable. It wasn’t comfortable to start with. When we bought it, it was derelict. And I brought up my daughter when she was like eighteen months. Every floor was up. There was a hole in every floor, because we have radon here. We’ve got the highest radon ever recorded in Britain, in this house. We were on national TV because of it. I mean, we’ve got recordings of that. They’re on YouTube if you wanna see ‘em. What was it? Well it was National TV, I can’t remember, two of them, both BBC and ITV filmed us, because it’s such a high radon level in this house, if not dealt with. We became an experimental home for -.\n
\n\n Barry: Building research.\n
\n\n Veritee: - building research establishment. So we haven’t had a quiet life in some ways here.\n
\n\n Barry: No.\n
\n\n Veritee: It’s been a bit eventful in these ways, but in a way that’s alright. I mean, it was exciting, kept me in touch, to have people ‘round. I had film crews here, loads of times, different things…\n
\n\n Barry: When the pony fell down the mineshaft we had two satellite vans, BBC and ITV, parked up in the yard where, you know…\n
\n\n Veritee: You know, ‘cause we made national TV on that. I mean it’s not deliberately, I’m not a self-publicist, I’ve never been. You know, I lead a quiet life but for some reason these things have found us, long before the HIV thing. I only became a bit of self-publicist to start with was when I was diagnosed and realised that there was actually zilch support, especially for women, like me, especially middle-aged old bats like me, there was no support here. Not in Cornwall. And really at that time not anywhere else. There wasn’t any Facebook groups, no one was out on Facebook. So from my little home here I did my best, then. But the other things that have happened in this house I didn’t seek it, you know. It just seemed to come to me. I mean, I’ve been in here, come home from work, really late as I was a youth worker, picked up my daughter from the childminder at ten o’clock – poor little thing you know she’s half-asleep – to find the satellite people outside again for the radon thing, for tomorrow morning. You know, that sort of thing? But I didn’t seek it. That just happens. So, home has been quite exciting as well. I mean, we’ve had a good life here. I mean, we used to have loads of people here. There have been times when there’s been fourteen people sort of around, just turned up, and then another five come to stay in the early days, you know, when people realise you live in Cornwall and everybody and their dogs descends, and I mean their dogs as well. Before we ever let anything out, we didn’t have AirBnB or anything like that, and it was in a state. It was rubble, it was… The walls were falling down. The upstairs bedrooms you couldn’t walk on, because there was nowhere to put all these people, and the cars would turn up from London, you know: ‘Just come to stay for the weekend...’\n
\n\n Barry: And later on when our daughter got older she’d have her friends ‘round for parties and things because it was a biggish house and rather than have it in a little terrace or somewhere, all come here...\n
\n\n Veritee: A lot of her friends only have mining cottages which are very, very small, and so yes, right up ‘til… I think the last one, well, eighteen…\n
\n\n Barry: When she left home, weren’t it?\n
\n\n Veritee: I mean, the last big bash which must’ve been forty, fifty kids here and yeah, in the flat, where you’re staying…\n
\n\n Barry: With a marquee…\n
\n\n Veritee: And a marquee out there for her eighteenth birthday, you know, people camping, a mini-festival thing. We’ve had that for ourselves as well, for his fiftieth, but the last big one was probably for her eighteenth when she did all that. So, it hasn’t been quiet, although we gave the impression that it’s quiet. It is now. And we’re a bit old for it not to be. We like visitors, but not the hordes we used to get. But we haven’t had a quiet life here. People used to say to me: “How can you live up there, you must -,” - who haven’t been - “… how can you be so isolated? In a cottage up in unnamed lane, ages away from any, well outside the village, but an unmade track to get here. They thought I didn’t see anybody. Now, I worked, you know, as a youth worker. I saw hordes of people when I was working, you know, fifty kids or whatever and colleagues and the rest of it. And then I’d come home to a place that was always full. I mean, I had friends lived here, didn’t they? We’ve had friends…\n
\n\n Barry: Yep.\n
\n\n Veritee: We’ve had a couple and their baby, but mostly the woman, who her son Sam was pretty much brought up with mine because they were little bit different in ages, but they lived together. I had a foster-daughter for some years that basically made herself my foster-daughter. She moved in when she was twelve and didn’t go away ‘til she had her own baby. I mean, yeah, in our, ‘round the table a few years ago there would’ve been like… We wouldn’t have been sitting here like this. There woulda been somebody wandering in who might be staying in a van, that was a friend. Well that was only last year because she left last year. People in the caravan who rent it. We‘ve had a guy here who’s only just gone who’s a traveller who’s been living here up until six months ago for about two years. He’d be wandering in. So our life it isn’t quiet, actually seeing it now. It’s… This is really the first time we’ve had it like this.\n
\n\n Because I was homeless I know how lucky I am to have this place, you know. Absolutely privileged. I know we’ve worked for it and there’s quite a few people who think we haven’t worked for it, it’s always like ‘it’s luck’. No, it ain’t luck. We both worked very hard for this place, but I was homeless. A long time ago and squatting and really at one point, you know, and really on at the end of the road with it, you know, when I was very young. So, I’ve always put up people that have nowhere to go. And the caravan usually is for that. They pay rent. We encourage them to get DHS, you know, the housing benefit and all the rest of it, but until recently it was always homeless people that lived in it and one of them – who became my friend – she was in a tent. She’s my age, she was my age. She would now be 70-something, well, a little bit older, 71 she’d be now. When I met her she was living in a tent in Cornwall. And that would have been, what? Late ‘50s then?\n
\n\n Barry: Yeah.\n
\n\n Veritee: She stayed twelve years and she died here. In our caravan. And she became a good friend. So some of that has been really positive, because she was a lovely educated woman, trained-teacher like me but things happen to people, don’t they? You know, so… That was a really positive experience, she was a lovely lady but sadly she had already had a heart attack before she came here and she died of heart failure but… We’ve done it all our lives, but, here… But recently, as I say, since someone, people have realised I’ve got no one staying a van in the yard or somewhere in the fields or whatever, I’ve had five requests. Two have only been to put their vans here for storage, the rest have been to live, because Cornwall; there’s nowhere for people to live. You know that’s something that people don’t realise: lovely holiday area, locals can’t afford to live here. And if you’ve got no family or support, the chances -. Or, and you’re not ill so you can get sheltered housing after being on the waiting list for ten years, you can be homeless just like that. But I can’t do it any more. I’ve done it all these years and we’ve decided that’s it, so we’ve had to say no to everybody.\n
\n\n Barry: Well it starts off fine but after they’ve been for a while they start taking advantage and, you know, and it just ends up stressful so you know, that was… I mean, the guy who was there was only meant to be for three months it ended up nearly three years, you know...\n
\n\n Veritee: And the trouble is that… You see this is all of what home means to us, ‘cause this is what we’ve always done. I mean, when my daughter was young I would have people that had nowhere to live but I got references and I made sure they were okay and some of them were very educated people with training. To live in my caravan, to give me childcare because Barry was at sea, so they’d look after my daughter for, from what? Seven months?\n
\n\n Barry: Yeah.\n
\n\n Veritee: And live in my caravan, look after my daughter, while I, so I could go to work as a youth worker. And it worked out very well for most of us. I mean, all the people that did that with me were fine and got on their feet from doing it, you know? ‘Cause I mean one or two of them had children of their own. I’ve had people with two kids in the caravan doing that ‘cause they’re homeless. So what our home is is a chance to give back as well. You know, because I wouldn’t have got this if I hadn’t managed to get myself back together through the help of other people. And I’m talking about when I’m 25. I’m 68 now but I mean I’ve never forgotten it. You know, they gave me help and so I could return some of it, but it makes me upset because the trouble is is we’ve had too much recently of people thinking we’re playing Lady Bountiful or whatever, that we’re doing it to feel good about ourselves, which we never did. Obviously it gives us something, but we’ve never done it for those reasons, it’s simply because I was in that position myself years ago. And also because Barry didn’t really have a home until we came here, not really. Apart from… ‘cause he was out in, having to work abroad. He lived in his mum’s house when I met him…\n
\n\n Before me he couldn’t even have a houseplant, you know, it’s that, like that. The benefit of having me is he can have dogs, cats, he’s had other animals, not that he necessary -. You like the chickens, didn’t you?\n
\n\n Barry: Yeah.\n
\n\n Veritee: Goats were my idea. He couldn’t have another live thing because of his lifestyle, you know. He certainly couldn’t have had a kid, obviously without a woman or somebody, but somebody to look after all these things, these live things, including, as I say, houseplants. So it’s true really, I‘ve enabled him to have all these things that with his job he would never have had.\n
\n\n Barry: So my house in Ashton was just a little detached two -bedroom house, little garden and a garage that I could put my car in when I went away and –.\n
\n\n Veritee: - and somebody came in and cut the lawn to make it look tidy once-a-fortnight or so.\n
\n\n Barry: Yeah, I enjoyed it. My job I didn’t particularly want to be doing it. It was stressful, the amount of paperwork that was required before you could do anything. Yeah, so, actually, I was glad, yeah, because I didn’t have to go away, yeah, you know, stuck in a hurricane, no communication, don’t know when you’re going to get off the ship, yes.\n
\n\n Veritee: I’ve had him out during hurricanes not knowing if he’s died or not, because he’s out at sea, and not knowing if he’s alive, and one time in Antigua he managed to phone me before they shoved him on a plane. I mean, you know, and I phoned his job, work, and they won’t tell you. Because actually one reply I got was: “A lot of these men have wives in every port. Yeah, you’re married to him but they wouldn’t… That was the, that was the line then.\n
\n\n Barry: Company policy.\n
\n\n Veritee: So I was not allowed… I was his wife but I wasn’t allowed to know. Well, I could have, not being married to him but that’s how it is. You didn’t get told. It wasn’t like people imagine. I mean, there’s some shipping firms where, you know, the container ships where wives go with them but that’s only like captains, that’s not -.\n
\n\n Barry: Well no I could have done You could’ve. because I was an officer and -.\n
\n\n Veritee: But not on the ships, not that sort of ship -.\n
\n\n Barry: You know the ships I was on, when we were working it was dangerous, you know, and no one that didn’t work for the company and were fully-insured and done all the training was allowed on it.\n
\n\n Veritee: I mean the thing is it gave him, it’s given him a lot. He could leave the sea and not feel guilty about it, not feel like he was taking any risks because the risk had already happened, ‘cause he took a risk when he had sex with somebody else, if basically, but the risks -. There was nothing he could do, there wasn’t actually voluntarily walking out of his job, which by then he hated but he loved it when he was younger. He did love it for years.\n
\n\n Barry: Yeah, that’s…\n
\n\n Veritee: But by then not, but HIV has actually, and I hear this a lot from a lot of people – he doesn’t actually say it’s given him a lot, but it has – I hear it from a lot of people who say it’s given them their life back. It’s changed their life, it’s got them healthy, it’s got them off addiction. It’s made them assess where they’re going next and to use the time they’ve got. I hear so many people that that’s how they feel about getting HIV and that’s, sort of, in a way the same for you. It’s changed your life. You like this life, you like it like this. This is what you wanted but you couldn’t leave. You didn’t feel you could afford it, this place, without that money from sea and, so, a lot of people like that. And I often feel like, because sadly I was happy with it was and the last thing I wanted was this and though I’m happy to have him home – I actually thought that eventually I might persuade him to come home, persuade him that we wouldn’t go bankrupt, there are ways, he could never believe it. But I was always hopeful without having to get bloody HIV to achieve it! So, I mean, I was a middle-aged woman with friends and a life and, yeah, I wasn’t doing youth work anymore but I felt sort of… I was proud of myself. I hate HIV. It took so much from me. Sorry, it just did. And though this life’s nice it wasn’t… I wouldn’t… It’s not the terms I wanted it on. You know, I’m one of the few who don’ think, can’t see anything positive about having HIV. And yes, it’s changed my view of my home because, you know, I realise it’s in a way hard won, all those years at sea and… But it’s also meant that it’s more of a refuge than it used to be because I have more, need the security more, you know, because of being at home.\n
\n\n God I sound awful, don’t I? You know, so many women I talk to say they have no problem with being HIV-positive. They don’t even think about it except taking their meds and a lot say all the positive things about, that I just said about having HIV and how it’s changed their lives and been a positive experience. Really they do. Not all, but quite a few. And the others say well it’s nothing, they just take their meds. You get good medical care, you do, there is a positive in that. We get much better, good medical care than before. But that is… And I actually get put down some times when I say that it’s not like that for me. It’s as if because I run a group – or one of the admins on, well I’m an admin on about three HIV groups and I’ve done peer support training – it’s as if that’s not right, that somehow because I’m somebody who does that sort of thing that I should find it all hunky-dory and great and easy to live with and no problems except take the meds. Doesn’t mean you can’t do the work if you don’t feel like that. You know, I don’t see why it matters but it apparently seems to. I mean, when, if you do that sort of support work or peer support. I’ve never been, done it, not doing it from any other point-of-view, I don’t do it any more anyway... I don’t see why you have to have your life sorted out completely as long as you’re aware of what you haven’t got sorted out. And I’m very aware and I don’t see how I need to be fine with living with HIV.\n
\n\n Why is that a thing now? Just because we got the meds. I mean, yes, I know how awful it was before the meds. I’m fully aware. A friend of mine died in ‘84, I know exactly what it was like but it doesn’t mean I’m going to be happy about it. And I don’t see why I should be forced to be happy with it, but that seems to be how people… Or at least more adjusted to it, I don’t know. People say things like ‘you’re not accepting it.’ No, I’m not accepting it. It’s a terrible thing to live with. I hate it, sorry, I just do. Anyway, it’s made my home more of a refuge. Somewhere I know I’m safe.\n
\n\n But someone, and I can’t rem- . Your company and I can’t remember who said: “Actually it’s an occupational hazard with men at sea.” That’s what… And it is, but it’s not talked about. And it was always assumed actually that it was gay men at sea, no actually, there’s lots of women waiting for you on those ports. I’ve seen it. Little shorts brrrr. ‘Come on, land myself a seaman for the night. I’ll get some money tonight or I might even land him.’ You know, so, it’s like that. Especially in places like Nigeria and Brasil and what-have-you. So it is an occupational hazard so they weren’t, sort of, phased by it, his job. It’s obviously happened before.\n
\n\n Yeah, I think my life completely changed. I think women… I made a decision to go completely open, not straight away. I was stuck here - he was in hospital, didn’t know whether he’d live or die – and everybody ‘round here, ‘cause we knew everybody, kept saying: “What’s wrong with Barry?” I kept saying: “Pneumonia.” And I’m not someone who lives secrets, my life’s an open book. I just can’t live, sort of, saying something’s not what it is. And in the end I said: “He’s got HIV. He’s got AIDS. He’s got an AIDS-related pneumonia.” And I tell you, it did change for me. People that would invite me to things… I mean, not with my close friends -. No, it did, in fact it changed more with the closest friends ‘cause a lot of them never really visited me ever again, you know. I mean, I stopped having people dropping in, women coming in. I was a respected youth worker, you know. People used to come to me for advice, knock with their kids. I didn’t want that, but they did, you know? And suddenly I’m rock-bottom, I’m someone, somebody with HIV. I’m not who they thought I was. I’d betrayed them, I think.\n
\n\n Barry: We were renting a stable with someone with a horse and when she found out she come and took her horse away. I don’t know whether she thought I was going to give her horse HIV or what, I don’t know -.\n
\n\n Veritee: I actually spoke to her husband and he did – he was a seaman, Barry – he came back, no, no she actually said to me: “I’m a clean woman.” Right? That was her words as she took, she took, came to get the rest of her stuff and I said: “Why are you going?” ‘Cause it’s only a, it’s a field, she don’t even have to talk to me. She said: “I’m a clean woman.” I said: “So am I.” And anyway a bit later her husband came back to get a bit more and he, he’s a seaman, and he said she’d said: “I’m sorry but I’m frightened it’ll happen to me.” But she judged me to not being a clean woman ‘cause, because her husband might, just as mine might, have sex abroad with somebody while he was working. I mean, it happens. But she was… It was her own fear. But we’ve never forgotten it, you know, that... Little things, there were... I could have repeated so many things years ago but I’ve forgotten half of them. That wasn’t the only thing that happened. So much happened like that. If I’d not been open they wouldn’t have known, I suppose, but I just can’t live a secret. So I didn’t. And so much happened. People didn’t come back. They used to be regular visitors, never have, talk to them on Facebook, but… They’re not my friends. They don’t want to be friendly. You know, they never even basically entered this kitchen since! Quite a few, really. So…\n
\n\n So I’ve still got me husband. That’s really, that’s positive. And it’s been really positive meeting all the women, especially, all the people with HIV that I’ve met on this journey. Not so much now because I really can’t travel to London and I had to do that, or Manchester, and a lot of other places, I had to travel to meet these people because I couldn’t meet them here. Activists, rather than people that are keeping it a secret, because that’s the experience of mine here, that people with HIV are very secretive and I needed to meet people like me that weren’t. And I’ve met some absolutely wonderful people that I so admire, men and women, but mostly the women, you know, which I never would have met without HIV. You know, they were wonderful women in their own right without the HIV, a lot of them… An artist friend, who’s a brilliant artist, so… So many skills, so many wonderful things they’d done in their lives and I wouldn’t have met any of them if it wasn’t for HIV. I wouldn’t known these people existed, so were in my social group type-of-thing. So that has been really positive. But I had some real negatives as well. I have been refused a tattoo, locally. Yes, other places said they would do it but they refused it. I even went to the Press, I was so appalled. Even got a letter from my consultant to say I was -. It was before U was proved to be equal-U but it was after the Swiss statement but we all knew that, controlled on drugs, you weren’t going to pass it on, especially if you used universal precautions etc. But they weren’t having it, I even tried taking it to the Commission, you know, European Commission. Unless I’d had money to fight it… I had no money. I tried THT, I tried everywhere. I said: “Look, this is really wrong. You know, you’ve got to help me with this, just for other people, because this is so bigoted.”\n
\n\n Barry: And all you wanted was a little red ribbon.\n
\n\n Veritee: The reason I had to tell them was because what I wanted, I wanted a red ribbon entwined with a prostate cancer blue one. It was to do with, you know, solidarity written on it, just somewhere. I‘d never had a tattoo. I just thought, I fancied, I just thought I’d have that. So I had to tell them what it was and I’m open so I told them why. And they refused. And anyway there’s a form you fill in and most people with HIV have tattoos and they don’t tell ‘em, but I do. So a lot of people say to me you’ve got HIV and you could avoid all this if you didn’t tell them. Well, I think that is… That is buying into the stigma. I won’t do it. I absolutely fucking refuse to buy into that stigma. So I tell, try to treat it like it would be if I had cancer or anything else you’re on daily meds for, you know. I refuse to treat it any other way in terms of that sort of thing and medical stuff. And… But it ends up backfiring on me because I’ve been refused massage, I’ve been refused laser therapy for hair removal because I’m an old lady who grows hairs on my chin now and I could get those removed. But I’ve been refused it. So, there’s some things. I’ve had nurses in hospital when I was on IV – ‘cause I got a splinter in my arm, my finger – and I’ve had them been scared to touch me and I’ve had IV antibiotics and actually spouting all sorts of shit, the nurses, and I’m there with the IV and I’m telling them – by then u-equals-u had come in – and I’m saying: “I can’t give it to anybody, you don’t have to use gloves and a mask and all that.”\n
\n\n I wanted respectability basically because I hadn’t had it, you know. As a young girl, woman, who was going through all these things. I was quite happy to be seen to be a bit notorious, and have a but of an unusual hippy lifestyle but later on I wanted to be what I became, which was a teacher, a youth worker, trained counsellor and group-worker. In London I was the head of a charity, I ran the charity. I mean youth charity. So I was the senior worker there. And when I came here I never quite achieved those lofty heights, but I was assistant co-ordinator to a youth project with what they called ‘troubled young people’, some with real issues. So I had a life that was… I wasn’t doing that anymore but I achieved that and I wanted that respectability, that sounds awful. I wanted to at least be seen that I had a worthwhile life and had done things. And not be seen in the perspective of had I carried on as I was when I was young and nearly died on the streets. I didn’t want that. I wanted a different life and HIV brought it all crashing down. I lost all that, you know. I’m no longer seen as that person.\n
\n\n To be fair, I was very handy. I’m not one of these women that can’t… I did all the maintenance in my flat and built and knocked a wall down.\n
\n\n Barry: When I first met you I said you were struggling putting a washing machine in or something and I said: “Do you want me to do it?”\n
\n\n Veritee: And I said no! ‘Cause I can do it. ‘Cause I was the precise opposite from the women that rely on Barry and always have. ‘Cause the woman downstairs that I met him through relied on Barry. He’s always done this, you see? To do – ‘cause she’s single – to do all her –.\n
\n\n Barry: Maintenance…\n
\n\n Veritee: - maintenance.\n
\n\n Barry: And move furniture about.\n
\n\n Veritee: And I absolutely refuse because I’ve never had that relationship with men and I wasn’t going to start. I did it myself and if I couldn’t do it myself then I’d have to pay someone, but I did it myself. Mostly I couldn’t afford to pay someone so I learnt to do it myself including motorcycle mechanics and ordinary mechanics. I can’t do any of that now so I am grateful to have Barry now because my hands, I’ve got problems with my hands and I can’t stand up and squat down because of my leg and… So sadly I need him now but in those days the last thing I was going to do and I couldn’t understand why all these women did get him to do...\n
\n\n Barry: Well, I volunteered. It wasn’t as if I pushed. “Get out of the way, let me get to that you stupid woman, what you doing that for…?”\n
\n\n\n
\n\n Veritee: I’m afraid in my youth I used to think: ‘Oh that’s it, they can’t learn to change a bloody plug or put a washing machine in themselves, you know.’ I just didn’t understand it ‘cause why does somebody find a man who’ll do it? But never mind, he’s useful.\n
\n\n Barry: Yeah. But at that time they all thought I was a major drug dealer because I disappeared away…\n
\n\n Veritee: Don’t put that in.\n
\n\n Barry: ...and came home in a taxi from the airport which cost a lot of money but I wasn’t paying for it, so it didn’t matter, but that’s -.\n
\n\n Veritee: That was the initial thought. ‘Cause he used to disappear, usually in a posh car to the airport, which at the time was tiny and no one could afford to fly from it, ‘cause Newquay airport was just a Nissen Hut.\n
\n\n Barry: Two port-a-cabins.\n
\n\n Veritee: And these tiny little planes that cost a fortune to get on and he’d go there and that’s how the rumour went around. That somehow – when we first moved here, this was – that he was some high-flying, he was so dodgy, you know, even though I said, when I got to know people: “No, he’s a seaman.” But that’s what the rumours -. But, yeah we did get into... him through me and I did feel I was part of the community. I don’t feel I’ve got any community now. I don’t feel like part of this community at all, you know. I don’t feel included. I don’t know a lot of the new people who’ve moved in in the last ten years. They don’t know me. I’ve never -. I think in several years since I stopped being a part of the community and involved in the village hall and had a child at school, I have not been invited to anybody’s home, actually in their kitchen, in this village or around. Fifteen years. Not since HIV actually.\n
\n\n Barry: But a lot of it’s also because I don’t drink anymore and the pub opening hours. I was never an evening drinker anyway. So they all go down there at 8 o’clock, which is when I’m starting to get tired and don’t want to go anywhere so we don’t actually meet these new people, ‘cause if they go down that pub at 8 o’clock at night I’ve got no idea who they are.\n
\n\n Veritee: Yeah if you’re not… It’s the only meeting place in the village now. If you don’t go down that pub you’re not included, you’re not a part of it. And Barry gave up drinking and I don’t -.\n
\n\n Barry: Well after that -.\n
\n\n Veritee: He gave up drinking because he had sex with somebody because he was drunk and he’s never got drunk since, you know. Me? I started drinking. So I suppose I could go down there and get absolutely arseholed, but I don’t drink in public. I mean, as you saw, drink has a terrible affect on me. Two wines and I’m stupid. So, I can’t drink. I drink too much but I can’t drink in public. I couldn’t go down that pub and have more than two.\n
\n\n Barry: Well the trouble is once you get the taste for it...\n
\n\n Veritee: Yeah but that’s my self-respect. It’s always made me walk out. At that point. I’ve never stayed there. I’ve never got beyond drinking two, and I shouldn’t even drink those. So how these people, the local people, spend so much time in pubs drinking so much, I’ve got no idea. But I do drink now.\n
\n\n But he stopped because he got it. He got HIV. It changed his life, it stopped him drinking, you know. Almost instantly. So… There’s so many positives for Barry, you see? ‘Cause it is a positive. ‘Cause you drunk too much.\n
\n\n When I was first diagnosed, ‘cause being the sort of person that I am, ‘cause I tried to turn a negative into a positive, I mean I had in fact started a… I’ve had a few disasters in my life and the fact that I was a youth and community worker at all is due to that, and then I started a charity because I got post-natal illness when I had my only kid so I started a charity. I always turned it around, try to make it positive for other people and myself actually. And so of course when I was first diagnosed and decided there’s no way I’m not going to be not telling anybody, I looked round to find what there was, that I could join in with. And I didn’t find much at all here, to start with.\n
\n\n So I basically found what was - I think they were called Positively Women, it’s now Positively UK – and what they had was a series, they had meetings for women, they’re encouraging women who didn’t come from London that actually… and women in rural places or outlying cities like Edinburgh or Manchester or out, lived on the outskirts of Manchester, women all over the country who, one of the criteria is we were all supposed to be out and looking to be activists, though that wasn’t the case, a lot women that went weren’t. And they had funding and always used to pay my transport because I used to pay my own a lot, ‘cause there were women who couldn’t pay it but they had funding to pay our transport and our accommodation and food while we were there to attend meetings and they used to sort of dot them around different cities. Sometimes in London but sometimes in Manchester, Bristol, all those places, so we could meet up for a weekend.\n
\n\n Part of it was work, you know, in that we were supposed to be taking out what we’d learned and did learn an awful lot from it, but also it was a social thing, it was to meet other women with HIV who, you know, hopefully, in my case, open and not hiding, which to me that was important to me in the first place, not so much now, and that was like a lifesaver for me for my mental health because obviously there were some women who’d been diagnosed by then fifteen years or something, you know. People who had lived with it, who’d managed to survive the old way before there was treatment and yes at that point treatment was complicated because there had to be injections, that was one of things, it was very complicated to keep people okay who’d been through that then. Actually, all of them are doing okay, I haven’t heard of anybody... And now are just on the same drugs that we’re on, you know, because things have moved on so much now. But it was so reassuring to meet those women. One, to see how they were still alive, you know, I know that fifteen years ago it was no longer a death sentence but it wasn’t so long before it had been, and healthy, most of them, a lot of them working, a lot of them working in the HIV field to be honest in their various cities and towns but not all, with successful careers in whatever they were doing, lives, children, you know, the whole bit. It was so useful to meet up with other women and see that for yourself. Not just on social media, there wasn’t any then.\n
\n\n And I took it back and I started a women’s group in Cornwall and it ultimately failed and we lost our funding, but anyway. And we lost our funding here and that... and there was a little bit of money with the local charity that now and again they’d put on a spa day or something where we can get together. There was one just before the first lockdown, we all went – well, the women who were willing to meet , ‘cause a lot aren’t, willing to meet in Cornwall, but there are a few, usually the same people – so we did have a spa day together which was lovely and we did meet up. There was a little bit of funding to pay for it. But on the whole there’s no funding in Cornwall for that sort of thing and PosFem lost its funding, so there’s no funding anymore to do that. And I used to go to a few other things as well, conferences and other things, for which there was funding to get people from outside to do them, and there isn’t anymore. So all that’s been lost, I think, well I’ve not heard of any. The last thing I did was the Project 100 training, where I did get some money, contribution, not all, I paid for some of it.\n
\n\n Barry: I think they just paid for the hotel, didn’t they?\n
\n\n Veritee: Yeah. Well, that was when I did the training in Taunton but when I went to the conference in London for it, I think they paid some of it, I can’t remember what, they didn’t… There’s occasionally funding. And what I go for was always to try and bring stuff back here but I haven’t really succeeded in doing that because it just… I mean…\n
\n\n Barry: She’s after…]\n
\n\n Veritee: A lot of it is because -.\n
\n\n Barry: Her notes are on the table.\n
\n\n Veritee: - there’s a lot of women in Cornwall are younger now who have it and they’re working, there is that. They’re busy, they’ve got good medication now, they’ve got busy successful lives and they’re working.\n
\n\n Barry: And kids at school…\n
\n\n\n
\n\n Veritee: And kids at school, you know.\n
\n\n Barry: Because you know what children can be like, you know.\n
\n\n Veritee: Well, there is that. The thing about they don’t come out. They don’t out because, you know, I know, I’m free because, well, my child was like sixteen, seventeen -.\n
\n\n Barry: Seventeen.\n
\n\n Veritee: - when I got HIV, you know. She’s in her thirties now. But she was never bothered by it either. She didn’t like, she didn’t really get on with me much at the time. She was a stroppy teenager at the time but that’s… But HIV she never had any problem with at all. So, not really, did she?\n
\n\n Barry: No.\n
\n\n Veritee: They insisted she got tested though which I didn’t understand. It’s fine for her to get tested with her permission, but there was never any way she could have got it off -. I certainly didn’t have HIV when I was pregnant and I certainly can’t give it to her just living in this house whatever I did. So I never understood why they absolutely -.\n
\n\n Barry: They insisted.\n
\n\n Veritee: Insisted, they absolutely insisted and they took her away and wouldn’t let me be with her while she had it. She was under eighteen and it wasn’t her choice because she’s scared of needles. She’s actually scared of needles. She did it, but it was literally, they said to us: “You have to bring her in.” I know. And people didn’t know fifteen, fourteen years ago it did happen, that happened, and I’m in the consulting room expecting to be able to go in with her, or you ‘cause you were there too –.\n
\n\n Barry: Yeah.\n
\n\n Veritee: - one of us go in with her to help her because she’s always been terrified of needles, always. And suddenly somebody said: “Oh we need to ask you some questions Caja,” took her out and did the fucking test without us there. Yeah. And we’re not allowed to be together for our consultants either, we have to be separate.\n
\n\n Barry: No, we could -.\n
\n\n Veritee: No we can’t, I’ve asked, we’re not.\n
\n\n Barry: What even now?\n
\n\n Veritee: No. Well, not now, I don’t know now because I haven’t asked for years but it was insisted we had to be separate, you know? A lot of stuff I don’t understand and I don’t like. And I will say about the – when I was first diagnosed, I hadn’t seen my husband as he was in hospital with PCP, very ill on oxygen, yes he was ill – I had come in to the clinic for my first clinic thing and Barry wanted to support me and I wanted him to support me, but I hadn’t been able to talk to him since he was diagnosed and basically he was straight into hospital, literally. Diagnosed, clinic, from the clinic, straight into a hospital bed. He was that ill. So I hadn’t talked to him, so I went for my first consultation at the clinic and I’d not been able to talk to him ‘cause he was in the hospital with very very sick men and nothing but curtains ‘round us and we couldn’t talk. And this was all a shock to me, I was in absolute shock really. And this was comparatively – what do you call? - it was comparatively private to be in a consulting room with the consultant going in and out. She wasn’t always there. So while she was out I started saying to Barry, he’s sitting in a wheelchair: “I’m absolutely in shock, I’ve got HIV too,” and I said: “Why couldn’t you keep it in your fucking trousers?” and raved at him for a bit. And the consultant came in and said: “If you’re going to abuse your husband…” - believe me I didn’t, I just stood there and shouted at him. I was absolutely beside myself and so upset and I’m an emotional person, and she said: “I’m not going to let you abuse your husband in my consulting room,” or something like that, and she offered you therapy for abusive wife.\n
\n\n Barry: They took me out offering me counselling, you know. Nah.\n
\n\n Veritee: Personally I never got – in my view – never had any empathy for me since I had HIV from medical people, except the consultant I’ve got now who is very good, but because of what happened to me, because of these things, it’s more than that but, and it continued to be like that for about five years but the clinic got better and had new consultants come in and things got better but on that first instance I was threatened that I had to go to Bristol. I really wasn’t that bad, seriously, I’m not talking about, I’m not talking about somebody’s who… I wasn’t drunk, I wasn’t stoned, I wasn’t anything, I was completely and utterly – because I didn’t do that in those days, I haven’t taken drugs for forty years, you know, and I didn’t drink – and I was just upset.\n
\n\n Barry: And then you had to drive home by yourself.\n
\n\n I’ve never been anything but working class, you know, and I just mix with most people, yeah, I mean I did end up quite highly-educated because of my job, the exams and different things but I’ve never really pushed what I… yeah, I’m just me really, basically. You either take me or you don’t. If you don’t, I don’t care.\n
\n\n Veritee: He doesn’t care. Yeah, in that way…\n
\n\n Barry: Yeah, so if you don’t like me, fair enough. It doesn’t even bother entering my head about, you know, it’s just: go away.\n
\n\n Veritee: And your fairness thing.\n
\n\n Barry: Oh yes, I have got a big fairness thing. I mean, my mother – because I bought the house – was going to leave everything to me and I said: “Nah, you’ve got two other sons, I mean, yeah we don’t need it that much.”\n
\n\n Veritee: We can survive.\n
\n\n Barry: And end up them being upset because I’m here and I ended up with all her money –.\n
\n\n Veritee: Which was only her house, she didn’t have anything else.\n
\n\n Barry: Yeah I know, but it was still a hundred-and-something-thousand pounds at the time.\n
\n\n Veritee: Yeah.\n
\n\n Barry: So I persuaded her, yeah, not...\n
\n\n Veritee: Barry’s got this thing about the fairness and that is the sticking point. The one thing he will dislike people for. If someone is not fair and people mistake it for meanness ‘cause it can often involve physical things, or the use of our property, our home, because so many people have used our home, you know, used it… Some people used it as their own. Wandering, take things from the fridge. Just used it. And we’re fine with that. And he’s fine with that.\n
\n\n Barry: Up to a point.\n
\n\n Veritee: Up to a point. And I’ve got that thing as well, so we’ve both got that matching… It’s gotta be fair. It’s got to be reciprocal. Not necessarily the same thing for the same thing but something, you know. That’s… I’m like that too. But I’m not like him with the friendship. It matters hugely that people don’t like me, if people don’t like me. An awful lot don’t. You know, so many women have befriended me and done this thing, like: ‘I’m you’re best friend.’ Ugh. Every time I hear that my heart sinks. You start doing that, you’re going to dislike me, because I’m not a person that’s actually capable of having a best friend. I’ve never had a best friend, you know. I can’t explain it. I’m friendly and I like people and I certainly like women, you know, as friends. But one thing… even as a child I never had a best friend, I don’t do that exclusive relationship, not with anybody. Not really. Not even, sort of, with you ‘cause I’ve always got other friends. I mean, and then the other thing that’s a sticking point when they do that is eventually women who I’ve had as friends start to resent you. You always go out with him but you don’t go out with me. Why is it people who got in relationships do that? And I’m thinking: ‘He’s my husband. I’ve made my life with him. Why are you doing this?’ That’s why I can’t have exclusive best friends with women. Maybe if I was single. But I didn’t, even then have exclusive… I don’t have those sort of relat-. But it matters to me I’m liked. At least liked, I don’t mean I don’t want to be adored, seen as a best friend. I just want to be liked for the things that are likeable. And so it does matter to me a lot. And I’ve found that I don’t have anybody that likes me particularly anymore.\n
\n\n I hoard clothes, he hoards tools. And they’re all up in that big garage which used to be a lorry garage.\n
\n\n Barry: I’ve got tools all along both walls\n
\n\n Veritee: And every screw or bolt or anything you could want, he’s got.\n
\n\n Barry: Well, that’s why, she said, a friend phoned up, they didn’t supply these bolts with the flat-pack. I’ll go and have a look, went up there: yep.\n
\n\n Veritee: I’ve got ‘em.\n
\n\n Barry: I’ve got ‘em, I’ll be over.\n
\n\n Veritee: But it’s what he does and he like... But your shed is your safe space. You disappear up there.\n
\n\n Barry: Yup.\n
\n\n Veritee: You have long conversations with my friend that is now yours. You mooch around if you need to get away from me and you don’t see me. If you don’t want to. When he’s up there. So, that is your safe place in the house, isn’t it? And mine’s my bedroom. Which I should show you ‘cause I’ll show you why it is, because you don’t understand ‘cause you’ve only been downstairs. I’ll show you that. Well, if you… The place was derelict, there was one, two, three, four...\n
\n\n Barry: Five.\n
\n\n Veritee: No, four bedrooms upstairs.\n
\n\n Barry: No, because you’re -.\n
\n\n Veritee: Oh, five bedrooms! This was a five-bedroom house. Damn the money. They were tiny, all tiny, but five bedrooms and by turning it into just three we’ve down-. The house won’t be worth what it could be ‘cause even if they’re tiny if it says five bedrooms it’s five bedrooms. But we knocked… One of them was just big enough, it wasn’t – it was a cot bedroom – you couldn’t get a full six-foot bed, a single in it, it’s so small. But – box room or whatever – but you’d get a cot in, you know. But the place was falling down and all the ceiling was falling down. And I need an en-suite, I need somewhere to have a pee in the night, otherwise, I mean it’s possible to… Our bathroom’s downstairs and since my accident – and it was alright when I lived in the flat – I could do it. Obviously the flat’s got a toilet.\n
\n\n\n
\n\n Barry: Yeah, there was a toilet but you had to go through three doors to get to it.\n
\n\n Veritee: Yeah, there was just a toilet upstairs. And one of the reasons we bought the place, ‘cause I predicted, though I was only 31 that there would come a time when you needed a loo upstairs, you know. But in the end we knocked in two of the rooms into a bedroom.\n
\n\n Barry: Put in an en-suite.\n
\n\n Veritee: Put in a little en-suite, a little shower, a toilet, it’s only got cold water up there, but, except the shower’s got hot, but anyway we knocked it in to that so that’s three rooms gone, we’ve got another two. And we don’t share a room, we don’t share a bedroom. We, you know, people think we’re estranged, we’re not. We have sex, whatever, we agree to meet up. But I’ve got my bedroom and he’s got his bedroom and, so, that is your safe space as well. But I rarely go in there, do I?\n
\n\n Barry: No.\n
\n\n Veritee: So, we’re so lucky, we’ve got a home. I mean, we go away and I share a bed with him, I’ve got no objection to it, but that is my safe space. I’ve got my own room and we’ve got completely different … Well, I’ve kind of merged into his now but we used to have completely different sort of sleeping times and stuff because he was a seaman and they do six hours on and six hours off and he could only sleep for six hours at a time and -.\n
\n\n Barry: Well, not even that it was four hours -.\n
\n\n Veritee: And get up in the middle, what I call the middle of the night, and all sorts of things like that so, you know, so, yeah… We’ve both got our own rooms. And my bedroom – which is far too big for me, for one person, you know, with a big double bed...\n
\n\n Barry: Yeah, but if I moved in there I wouldn’t have anywhere to put my clothes.\n
\n\n Veritee: No, ‘cause my clothes…\n
\n\n Barry: One of the bedrooms has been turned into like a...\n
\n\n Veritee: A dressing room. I mean, it’s not posh. You’ll see it, it’s covered in stuff, the thing is it’s my dressing room. And the other thing I did with it is that I painted it pink. Now, when I was growing up pink was seen as a girly colour and I went through a phase of rejecting all of that patriarchal whatever stuff, very early on, before people thought of it I was a feminist in ‘71 and I went through… I also went through a phase of being a lesbian, I mean, I lived in an all- … I once lived in a totally separatist house, no men were allowed. And it was a big debate whenever someone had a male child. ‘Cause women had children while we were there, it was a big house you know, and some of them had boys. You can’t help what sex your children are gonna be, but it was an all-female house. I’ve been through all that. I’ve had girlfriends, all that. But I’m not a lesbian in that I am… I can have sex with anybody but I can’t, I, you know; I prefer men. You know? But I did it because I just totally rebelled from what I was brought up with. I had been so… You know, until I did that… I don’t think people can really understand what life was for a young woman in the ‘60s and ‘70s. Someone born in ‘53. How you were abused at every single turn. You only had to go to the shops and your bottom was patted. You went to work and you were told you had to wear tights and high heels because... and the men put their arms around you and up your arse. It was… The ‘70s were unbelievable. And even then I knew it was wrong. Absolutely knew that this was not right. I suppose because I was a daddy’s girl, whatever, and brought up to be, to think I was equal. Always. And so, anyways, comes to the pink… So pink was always seen as a, you know, so I rebelled. I’ve got a friend who’s known as Blue, but I was known as Blue when I was young because I wore mostly blue clothes, because the only thing I could find that was sort of gender neutral, I didn’t want to wear black. My daughter wears black, always black, but I didn’t want to do that so I wore blue. And also I took blues which were like purple hearts, so sadly I was called Blue. But then I reclaimed it. I decided pink is a lovely colour. By doing that, by rejecting even a colour, you’re sort of buying into it. So my bedroom’s pink. Very pink. But not prissy prissy, baby pink. Anyway, that sounds ridiculous but it’s my safe place because my bedroom’s pink. And it’s like…\n
\n\n Barry: And you’ve gone -.\n
\n\n Veritee: Gone full circle. I’m embracing pink and all that being a woman means. I love being a woman. I wouldn’t want to be a man, but I spent many years wishing I was a man because of the freedom they had and the lack of… You know. All this shit that women are different, they don’t like sex, they want relationships. Women are, you know, we’re different from… No, I’m not. I fucking like sex and I want to be free to do what I want to as… but sadly we’ve got the pill and sadly now we’ve got HIV, but.. So no one’s free, but... All that stereotypical crap. Anyway, so pink means a lot to me, you know? So my bedroom’s pink. I mean it’s hard to explain really. So I’ve got a lovely pink room, it’s my safe space. I can go up there when I’ve had enough, sometimes I’m not -. Especially if I’ve had a drink, I can’t -. I really can’t drink, why the hell do I drink? Somebody who has two wines and has a hangover for two days. Haven’t today ‘cause… If I had more than two, but yeah… I can go up there if I’m ill. I can disappear up there for days, I don’t even see him, you know. It’s my safe -. It’s somewhere I can go. I thought my she-shed would be my safe place but -.\n
\n\n Barry: It’s too far away.\n
\n\n Veritee: Especially in the rain in the winter. But then also we started letting the field again and I can’t go down there so it’s not mine, you know like I hoped it would be. So, my bedroom is. Got my little suite where I’ve got water, a toilet, a bed.\n
\n\n Barry: A shower.\n
\n\n Veritee: A shower. Everything I need is up there. I could put a cooker in the corner I suppose. But I wouldn’t. So that’s my safe space. I don’t know what I’d do if I had to move into a little old peoples’ bungalow, you know. Wouldn’t have that, would I?\n
\n\n No, I don’t want to sound fucked up, you know basically. I mean, this is going to go all over Bristol. I don’t want to sound fucked up. I don’t want to sound like I’m a mess because I’m not. I’m an emotional person and having HIV, unlike for some, has had far more negatives for me than it has ever had positives. And you know people often talk about the positives that they found from having HIV and I find it very, very hard to drag up any. It probably depends where your life was when you were diagnosed. And I’m not saying my life was great. You know I’d had the accident and I’d had a lot of other things happening to me, but I envisaged my life – ‘cause I was getting older – I’d envisaged my life going into graceful old age as a respected member of the community, with friends, who’d always had known me for years, you know, continue to do an odd bit of voluntary work and the charity I’d started, you know… Yeah. And join clubs with other little old ladies like me, you know, and be accepted. I did not expect to embark on another route of activism, which I did, though I don’t do it – I keep saying I don’t do it now – and try and get things for women like, which I did try in this county but didn’t really succeed but I tried. I didn’t expect to be doing that. I didn’t really want to be, you know. I’ve done my stuff. I’ve had loads of traumas in my life, starting off from a very early age with different things and, as I say, homelessness and the lifestyle I had and ending up in a therapeutic community which, you know, I might explain behind the scenes what that is.\n
\n\n Also vulnerable mental health and I was… I ended up mostly phobic anxiety. I ended up so phobic at seventeen, sixteen-seventeen, that I didn’t leave… I left home at about fourteen and lived all over the place and people’s sofas and stuff. I left home first and… But I was forced to come back, I got ill and a lot of it was to do with my food intolerance. I’d get really ill, I’d be away thinking everything was going fine. I couldn’t be in my home and there’s lots of reasons for that that I won’t tell you and I would come back and, you know, get ill. I’d get really ill. And as a child I was really ill, I mean I was taken to doctors constantly because I couldn’t keep anything down. I have a… I’ve got a phobia about vomiting now because of it. I can’t. I’m terrified, because I spent most of my childhood vomiting and it was so scary and I didn’t get any help. I mean my Dad hated illness and used to hit me for it and my Mum -.\n
\n\n Barry: Say it’s all in your head.\n
\n\n Veritee: Used to tell me all in my head and pull myself together and my Mum couldn’t do anything because she was partially-sighted and very dependent and so I ran away from home and I… If… As long as I ate the right things, and I didn’t know what this was about, I didn’t understand what was happening. There was no help for food intolerances in those days at all, none. And even the doctors said it was in my head. And yet all my childhood I’d been in that state to the extent that when I was young, eight, I had Barium meals, I had full investigations, ‘cause I was ill, you know. I mean, I just wasn’t right. I was so thin… I wasn’t right and it’s not right for a child to be vomiting all the time. I know now it sort of runs in the family. I’ve got a relative that had to go into Great Ormond when she was… Couldn’t even keep soya down, couldn’t keep breast milk down. The saviour of me as a child was that I could be breastfed and I was alright, it was only when I was weaned that it all started. I was fine on breast and my Mum breastfed me for quite a long time, but then as soon as I got weaned, I got ill and didn’t grow and all that. So, and it carried on and I survived but it was awful. Anyway, point is I ran away at fourteen and lived everywhere and then I was forced to go home because I got ill, because I wasn’t living with the hippies anymore and I was eating meat.\n
\n\n Well, it wasn’t meat it turned out to be dairy but I didn’t know what it was and I got ill again and my phobias stem from that. I was a… became phobic. It was always assumed from very young that I was mentally ill because I had this stomach problems, you know. And my Mum didn’t help because she meant well but she used to buy me Complan, which is made of milk, which is supposed to build you up, make you sort of put weight on you… And I’m totally allergic to something called whey, which goes in a lot of these supplements like EaseSure and all that. I used to get given that by hospitals and I’d then be so ill and I couldn’t move for days and... I’m not allergic, I’m intolerant, it’s different. It doesn’t kill me but, but… I had to come home. And I didn’t go outside, I became so phobic and of course my Mum was feeding me this stuff and every time I went out or even downstairs I’d vomit and I couldn’t be far from a toilet and I become so phobic I didn’t leave my room for six months, except to go out… I left, occasionally when I felt well, I went out and I took pills because as long as I was on them I didn’t care whether I was sick or not.\n
\n\n Barry: Well, you didn’t eat if you were on -.\n
\n\n Veritee: I didn’t eat as well, that was the other thing. I took amphetamine. Didn’t eat if I took amphetamine, didn’t ever need the food. But I didn’t eat, I didn’t feel bad. Oh dear. And during one of those things I got into a lot of trouble. I mean, I went ‘round with some guys that were stealing cheques and doing things, you know, doing all sorts of things, like basically stealing car seats, buying, hiring cars, roaming around the country. I don’t think I remember taking a single meal in months because of… So, I felt well. Might be starving, but I felt well. So, I did a few things like that.\n
\n\n Anyway, at the end of the day I got arrested and put on probation for three years. I know. I had, didn’t do anything.. What I actually finally got caught for, I mean, I was roving around and I used to go and live in London in squats. Started in the squat thing very young, on people’s floors, but I got arrested and put on probation for three months and that’s when I came home, you know. And the reason I got put on probation for three months is that when I went to the Magistrate’s… What I got caught for was actually stealing a packet of coffee beans and some Alkaseltzer for my stomach and something else to give to the person I was staying with. And when I got into the police station I got found with some tiny bit of dope in my pocket and actually I’ve never smoked, it makes me sick. It’s not done what it does to a lot of people helps their appetite, it actually makes me sick. That’s another thing I can’t do. Never been able to smoke. I used to pretend, you know, in the hippy days. Never could smoke. Wasn’t mine. Someone had just given to me to put in my pocket. And in those days – these days you wouldn’t get it – those days it was a jail sentence, you know. And I got put on remand and then I got… When I went to the Magistrate’s I was bolshy to them. And women in those days, young girls, they weren’t bolshy to Magistrates. So I got away with not being imprisoned because by then I’d gone home and my Mum was feeding me stuff and I was so ill and I was obviously ill by the time the court-case came about, so they thought I was just mentally ill. They thought all my… And I’d explained what had happened and how when I escaped I didn’t seem to be ill.\n
\n\n And it doesn’t make sense, does it? To anybody telling that story it sounds like I’m a totally mentally ill person, that when I leave my parents or I’m not at home: I’m fine. No one ever made the link that it’s what I was eating. That any of it was to do with what I was eating. But they thought I was mentally ill so instead of putting me in prison, they actually gave me three years probation on the understanding that I saw a psychiatrist every week. But when I got home to my Mum’s, where I had to be... I had to have a set address which was my parents’ - and then I started getting sicker and sicker and sicker and sicker and so ill that I ended up really phobic about being sick and very phobic about even setting outside the door. Really, to the extent… I knew… I use to try and go ‘round the town but I’d get halfway around and I’d be vomiting on the corner or needing the toilet. It was dreadful. I couldn’t go anywhere.\n
\n\n But they thought it was all in my head. Everybody thought it was all in my head. So, one time I went to the psychiatrist, who thought he was Mr Freud, beard like this, he did. He actually did and... They took me… Basically, started asking about my sex life… He thought he was Mr Freud. The point is it was all about this stuff as therapy. And he was a psychiatrist, he shouldn’t have been trying to give therapy to a young woman my age, seventeen. He started talking, asking me about my orgasms. Oh, it was common then. You just don’t believe what… And I don’t… He probably had no ulterior motive, he wasn’t a sexual predator, but… I mean, I’d been abused by my family doctor. I’d been abused by my Dad’s friend from 8 years old, you know. I didn’t trust men, older men… A man sitting there asking me about my orgasms? I mean, for god’s sake. So, I was abusive to him in that I told him to -. You know, go away. You know, I’ve always been a bit mouthy. They called the blue… It was like that thing they’re coming to take me away, out of the cuckoo’s nest. They called the people, put me in a strait-jacket, gave me an injection in my bum, put me in one of those ambulances and took me to the local asylum, which was called Park Prewett.\n
\n\n So they put me in there and they gave me what is now considered to be – and it’s nothing to do with this, I’m just saying I’ve had enough traumas in my life – they gave me something called deep sleep treatment. If you look it up, it’s now banned. They put you in an artificial coma. It’s only given to young people they thought were rebellious, had problems with social, with socialisation. There’re documented things with people, anyway… It was done, it was a treatment started by a guy called William Sargant who was… Eventually killed people. He went to Australia and people died out there, they didn’t here. The reason we didn’t die is that in Britain all psychiatrists are trained doctors before they become psychiatrists. They realised that they couldn’t do his regime because putting people in artificial coma without waking them up to use their bodily functions. Their organs shut down. So, we didn’t die in Britain but we went through this awful treatment, had three weeks in an artificial coma, where they woke you up every two days, you know or, made you go to the loo, gave you laxatives. I mean, I was given – to put in artificial coma – I was given Largactil, usually given to old ladies, five six seven drugs, injection: out. No artificial breathing, we were young. We survived. Most, not all. And they’d wake you up, make you go to the toilet, make you eat something. Make you eat something, I’m not talking about… It was torture. We were made to eat. It was unbelievable, you wouldn’t believe this happened but it happened to me. The trouble is none of us… We’re all old now that went through that and it carried on ‘til about 1979. It still happened. ‘77 mostly. And it has been written out of the… No, hardly. People know it happened here, mostly they think it happened in Australia after William Sargant left the NHS and went there. No, it happened to hundreds of us and we’re all my age. Most of them are older than me, ‘cause I was young, you know. And it’s been written out.\n
\n\n Barry: Can’t find out…\n
\n\n Veritee: Can’t -.\n
\n\n Barry: - hardly anything at all on it.\n
\n\n Veritee: No one’s interested. No one wants to know. My records have been lost. You know, the only record is in my doctor’s records which says I was admitted to Park Prewett for… I had three weeks of the coma and then I had another week, two weeks or so, a week or so before I was discharged. For five weeks or something for counselling. I never got a minute of counselling. I never got anything. All I got was this. Therapy they called it. For therapy. That was my therapy. It was unbelievable, no one would… But the thing, it’s like, none of us have managed to get anything, any apology. And there’s no group, there’s no push for it because most of them are in their eighties or dead, you know. There’s a few younger. And people have tried. They have been a couple of books. There was a TV documentary about it but it did say about Britain but it mostly said about America, sorry, Australia, because people did die there...\n
\n\n Barry: And they did get an apology by the Australian Government -.\n
\n\n Veritee: Australian Government gave an apology but never here...\n
\n\n Barry: Whereas nothing here at all.\n
\n\n Veritee: It’s been written out. It’s only people like me that have that testament. And I tried with that one for years because… I’ve got P-. That’s why I’m so emotional because I’ve got massive post-traumatic stress disorder from several different things. And I tried so hard with that one. And it… brick wall, brick wall, brick wall. At least HIV, people recognise it.\n
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