My name is John Lucas, I am 67, I live in Stockport which is just outside Manchester.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.