I decided I was gay from about the age of 11. What’s the point of living your life with the light off?  I came out to myself. In the school library, I looked up ‘homosexuality’, and found books by Jean Genet and Andre Gide. I knew I needed to keep very quiet about it, but it wasn’t going to stop me from having fun. We were coming up to the Summer of Love and Flower-Power. By 16, I thought of myself as having a gay identity. I went to the Gay Liberation Front meetings in Notting Hill Gate. I got thrown out of school for being a ‘corrupting influence upon younger people,’ after a GLF march. I ran away and lived in a commune with eleven other gay men where we shared thoughts, clothes, LSD, and money. Squatted houses in the late seventies and early eighties led to Brixton Faeries in Railton Road.

Earl’s Court was the epicentre of social life: the Coleherne, the Catacombs, the Masquerade, the Boltons upstairs on a Sunday with the mad Spanish queens who used to wander round with their big lace fans. In the seventies I’d describe myself as a screaming mad queen who was part of Gay Liberation. The idea of ‘activism’ really only came about with the advent of AIDS and HIV. In the eighties we became ‘activists’ in that very political sense, though GLF activism took place with humour. At a raid on the Royal Vauxhall Tavern in the mid-eighties the police were all wearing rubber gloves because of AIDS. We said, ‘Oh, your gloves don’t match your sho-oes!’ It sent the whole thing up and showed how stupid they were.

I was a volunteer on London Lesbian and Gay Switchboard. From 1981, we started to hear about this strange thing coming from the States: Gay Related Immune Deficiency, or the Four-H disease, a strange new disease that was only hitting Homosexuals, Heroin users, people from Haiti, and Haemophiliacs.

London Lesbian and Gay Switchboard with Capital Gay, our newspaper, were the first to put out information. At that time we knew very little. People from Switchboard and some friends of Terry Higgins, who met in the London Apprentice, decided to form the Terrence Higgins Trust.

At THT we organised the first conference where we flew somebody over from the recently formed Gay Men’s Health Crisis in New York. The papers had already got hold of it and we got pelted with eggs outside Conway Hall because they thought we were all carriers of this new ‘gay plague.’ The crazy thing was – and it just shows you how little we knew – Mark Ashton, said, ‘Do you think this might be a CIA plot to get rid of gay men?’

The person from Gay Men’s Health Crisis said, ‘At the moment we can’t rule anything out.’

So we were really struggling to understand what this actually was. Having just gone through the decriminalisation of homosexuality 15 years before, there were a number of groups and organisations coming together. We were in a very good position in some ways to actually create a community response.

Roll forward a few years and we had tombstones and icebergs and leaflets going through every door in the country. They put the number of THT and the London Lesbian and Gay Switchboard on all twelve million leaflets. However, they forgot to ask us! In 1985, London Lesbian and Gay Switchboard, a completely voluntarily-run organisation based in a tiny room with four telephone lines above a bookshop in King’s Cross, received 260,000 calls. We burned out the telephone exchange. Because actually, there was nothing else. The government was running scared.

We’d identified it was actually HIV by then. We knew a certain amount about the roots of transmission and we knew about onward transmission. We began to bridge that gap into the general public, but it ended with an incredible amount of stigma towards gay men; jokes like: What does GAY stand for? Got AIDS yet.

It also divided our own communities, between those who were working politically on AIDS and HIV, and those who were looking towards civil libertarian issues like gay marriage. We had a movement which was derailed in its civil acceptance by this terrible ‘plague’ that people wanted to disassociate themselves from. It brought to the fore some of the internalised stigma and shame that people felt and hadn’t dealt with.

Become vegan. Go macrobiotic. It’s all caused by poppers. It’s caused by syphilis. It fed into that guilt and shame that some gay men felt: of course something terrible was going to happen to me. This is retribution.

Groups like ACT UP, a more vibrant THT, and Body Positive aimed to remove shame. HIV was a disease that happened to be affecting us. If it had affected another group of people who were not held in such opprobrium by the rest of society, would we be internalising in that way?

The eighties for me was typified for me by activism, but also by burying people. I gave up counting. I lost so many people in my immediate circle of friends, and my friends’ friends. Terry Higgins and Mark Ashton. Later on, four of my lovers.

Michael was the boy that taught me how to drive. I hadn’t seen Michael for a year or so but knew he was ill. He was being looked after by some friends of ours, who lived out in the countryside. I went to visit him on their little farm. He got toxoplasmosis and insisted he wasn’t going to go to the local hospital because they’d treated him badly. We spent six hours on the phone trying to get an inter-county ambulance to get him to Whipp’s Cross, 60 miles away, where he wanted to be. They said no. It was Hastings and Rother District Hospital, 30 miles away, or nothing. The paramedics came and Michael said ‘no’.

We put him in the back of a friend’s Mercedes Benz – he loved cars. At the hospital, a nurse said, ‘You realise your friend has gone?’

He’d died in my arms in the back of a Merc with his favourite tunes going. The lovely Irish nurse said, ‘We’re going to lay him out. You can do it with us if you like.’

Breaking every protocol imaginable, we did.

There were plenty of others.

Richard was in hospital for three months. I used to visit every other week. At one point a person came out of his room. I couldn’t recognise him. In a fortnight he’d changed beyond recognition. I did a complete double-take. When he died, they put the cause of death as ‘AIDS’.

His sister was in a panic about the certificate. There were complications around insurance.

I said, ‘AIDS does not kill people. PCP, cancer, sarcomas do. Go back in there and knock a cup of coffee over the form.’

It’s one of the reasons that the organisation I worked for stopped calling itself The Global Network of People living with HIV and AIDS. Everybody ought to be able to live with HIV.  Some might also have an AIDS diagnosis, but that’s an admission of the world’s failure in treatment. So we changed our name.

I knew all about AIDS and HIV, but in the mid to late-80s I got infected. I was working for British Telecom, helping run the Night Exchange in Waterloo and I was made redundant. I took the money and thought, I’m going to be dead in three years. I spent it on wine, whiskey and song, and lots of travel. There was a certain amount of living at the edge and I knew that one of these days I was going to fall over.
I came back and suddenly realised I wasn’t going to be dead.

What we didn’t know, especially in the early nineties, who were the fast progressors and who were slow. We didn’t know about CD-8, helper cells, natural immunities. We didn’t have viral load tests. We had very imprecise CD-4 counts. We weren’t very sophisticated about some of the other side things going on like Hepatitis C. And, most importantly, we didn’t have effective treatments. We had one little thing: AZT, mono-therapy which actually put an awful lot of people off treatments ever again. There was a certain amount of live for today, eat, drink and be  merry, because tomorrow we might die.

When I realised that I wasn’t going to die, I was unemployed, and working on various helplines. I started realising that I could live off HIV as well as live with HIV.

I ended up working at the UK Coalition of People Living With HIV, running a peer advocacy project, taking volunteers so that when all other avenues had failed for somebody living with HIV – in relation to their healthcare, social work or medical care, had failed – they came to us. We were like dogs with bones about reading the regulations. Why weren’t they getting this or that, which they were entitled to? We were paid by health authorities and local authorities to tell them where they had got it wrong. But we created a dependency culture – additional benefits, disability living allowance, personal care allowances. They were useful for people who suddenly lost all their income, but the assumption was that most were going to die. The argument we’ve always been able to make is that by investing money in giving antiretrovirals, in testing more people, in keeping people alive with HIV rather than dying of AIDS, they’re going to be able to contribute to the wealth of the country. They’re going to be able to continue to work. They’re net contributors towards society. But the minute you get outside that towards the end of your economically-productive life, what do you do?  Ageing with HIV is a problem around the world. If HIV hadn’t come along I might be the boss of British Telecom, or at least in middle management. At the age of 60, probably retired with my own house. People don’t have the safety net they could’ve built up under their own steam. And what are we doing for them? Not very much. It’s a bleak future for an awful lot of people.

London Lighthouse used to have classes with nice ladies and lots of material, showing how you could make an AIDS Quilt. One said, ‘Oh, what are you doing there, James? That doesn’t look very quilt-shaped to me.’

He said, ‘I’m just making myself a new pair of curtains. I’m living in a flat with single glazing and it needs thick curtains, so I’m making the curtains. I need to keep warm this winter. Everybody else can make a quilt for me when I’m dead.’

The person running the class said, ‘You get on with it. Do you want some help to show you how to put the double-pleating in?’

Testaments are nice, but let’s spend money on the living.

Sometimes I’ve thought, is it all worth it? Other times I thought, we are getting somewhere. We’ve seen change – whether that was getting people living with HIV on the face of the Disability Discrimination Act, or getting pills in place at a reasonable price so that people could actually take them. Dickens said it. ‘It was the best of times. It was the worst of times.’