HEROES IN VULNERABILITY
It’s - erm - been around forever, at least that’s how it feels- HIV. I think right at the beginning as a volunteer on a London lesbian / gay switch board late 70’s early 80s - and in that period we started getting new stories from the States about a strange skin cancer that was affecting gay men - it started getting people really scared. A few years later it became HIV, or the realisation this was what was going on, and actually it was the gay community that was getting the brunt of it. That was almost 40 years ago, I suppose - that awareness. As a community it was something that we knew was coming, and the gay press did really well to keep people informed, because it was very difficult, because in those times we obviously didn’t have social media - we didn’t have the internet. Information had to be shared quickly across the globe, so there were a lot of hard working activists out there making sure that people knew what was going on - that the gay press knew what was happening, and erm… people started getting sick. People would start losing weight would get Kaposi’s Sarcoma appearing on their skin. You were worried about any blemish that you might get, worried that you may have caught something - was the last person you slept with ok? The gay community at the time; those of us who were “out” were pretty much socially aware and responsible for our sexual behaviour, really! So going for regular STD checks was standard. You would do it, because the biggest catch at the time was syphilis or herpes. Herpes was the one most people were concerned about initially. So you would - once every three months - you would go and get yourself checked automatically and often you would bump into people that you knew, because the community was quite small.
People started disappearing. People that you would automatically see at a gay event or at Gay Pride. Something about Pride - in 82, 83, 84, you just felt there were gaps. You’d be marching thinking where’s so and so - I see them every year - guaranteed that that’s the time you’d see them…
it was very strange. People would disappear off your radar. None of my friends got sick until the 90’s, but the 80’s was full of gaps. You just wanted to go on a march with a cut out cardboard silhouette to show that people were missing. The irony about the 80’s was that the number of lesbians and gays who were hitting the streets and marching was growing more and more because people were coming out, but there seemed to be more and more holes as a result. It was really a very strange time. And there was a time when people were afraid because the information coming through was on one level and was scaring people. The government’s campaign with the tombstones and everything, it was absolutely vile.
Aids was seen as a death sentence and it was through the 80’s, people didn’t expect to survive. Drugs were still in development and people hoped that they wouldn’t catch pneumonia and die, because pneumonia was one of the biggest killers and it just – er – yeah. People would just catch strange diseases; strange symptoms would appear, and of course that’s the nature of HIV because it’s compromising the immune system. I knew somebody who’s body erupted in warts - completely! - like everywhere and – er - he just lived with it, really. It was fine (sigh) he was a mate and you just lived with it. Some days it was good and some days it was bad. So the hope came in the 90’s with the arrival of the combination therapy which - that was maybe 94 / 95. I lost my best friend January 94 -
We’d known each other for quite a long time, but hadn’t been particularly close until a few years after his diagnosis. We were friends on the scene and stuff and then we became very close, and he became very ill. These was the days of AZT which wasn’t really working and about 18 months or so before the first combination therapies were available and he just got sicker and sicker. He spent a lot of time in hospital, in and out of hospital quite a lot with various opportunistic infections. Christmas of 93
he was in the hospital so Christmas Day was spent around his bed. I would visit him every day through December - take him a Christmas tree decoration and hang it on his bed, he was my Christmas tree. And then in early January he was released and sent home, and he had care with his parents just outside of London and I would go visit regularly. One visit, I got back to London and I got a call because he had been getting worse and I got a call saying I better get back on the train, so I went back and he died a few hours later. So that was the first time I had ever been with somebody as they die which was quite moving - upsetting. I still miss him. 24 years on and it still feels like yesterday and it was just so unfair. That was it really - that’s the bottom line, it was just so unfair. Such a ridiculous amount of life lost because of one little bug. Just the thousands and millions of people… just… yeah. Everyone’s lost someone.
His cremation was out of town and we were coming out of the chapel, and a mini bus load of SM dykes who got stuck in traffic - getting out of London, all of them in tears. All these hard SM dykes just weeping because they missed his funeral, it was really sweet. He left his mark on a lot of people. And as long as we’re alive I suppose he is too, cause that’s how long people live - as long as they’re remembered.
Shortly after two other friends were hospitalised with pneumonia a few months later and that was the worst year I think - 94, because you just didn’t know how many more you would lose and that it was now so much closer than before. I knew a lot of people socially; people that you would see in gay bars and clubs and you would chat. That would have been the only connection you had. It would have been such and such Steve, postman Steve and Kevin the brickie and the accountant John or whatever and that’s all you knew about them and you didn’t necessarily have any other social contact apart from bumping into people in venues, because the scene was small enough for that.
So you can’t mourn the people you’ve lost because you don’t know how you’ve lost them - because they’re not there and you haven’t seen them to say “you’re not looking well” or “how you doing” because - yeah, people vanished and it was very disturbing. I have friends who say they’ve been to hundreds and hundreds of funerals in the 80’s and I didn’t - I think I went to two. I chose not to go to a lot of them. Once someone is dead they’re dead. If you’d known that they needed support beforehand, then maybe you could have done something then - but yeah, for such a long time it was a death sentence. We’ve lost a lot of people to AIDS that we don’t actually know we’ve lost to AIDS. Heart failure, cancer - an awful lot of heart failure which of course is just the easy way of saying they died, and – no, we’re not going to do a proper post-mortem, they have to be cremated. Ah - ok, so AIDS then. The problem you’d also have is a lot of people wouldn’t tell you they were HIV or that they were suffering, even within their own gay community. It’s like a second form of coming out, but a lot worse, because for a long time it was a death sentence.
The title is “Heroes in Vulnerability”, and you were only vulnerable for a short while, because you couldn’t afford to be vulnerable. You got angry which is why we had organisations like “ACT UP” that were fighting AIDS and the other organisations that grew because you were grieving - and of course our natural process of grieving is anger, and luckily you could take the anger and run with it and it helped hundreds and thousands of gay men who followed because we stood there and shouted that this has got to be dealt with. We had to do things!
The stigma that came from HIV and AIDS was because it was attached to gay sex, and gay sex in society’s view was dirty. So - the AIDS stigma says “I’ve had gay sex”, so then you have all the haemophiliacs saying “I’ve got haemophilia, I’ve had to have blood transfusions, I’ve received dirty blood.”
It was a time when some people decided they couldn’t possibly share a bed with another man again and that they would deal with it in a different way; and other people decided they would just have safe sex - so work out what was going to be safe sex, and what was going to be fun to do and not necessarily going to be that dirty sex that will give you whatever its going to give you.
There was so much misinformation for such a long time and that just fuelled the flames and the stigma about HIV and AIDS. I find it very interesting now that we have younger generations that feel like there is still such a stigma to it - partly because of course, it’s faded from the mainstream eye. You’ve had combination therapy for 20 years which has been quite successful - so successful that even the specialist AIDS services within hospitals and stuff have been closed down or reduced whereas - you know - 20 years ago, there was a whole ward for dealing with people with AIDS in most of the major hospitals in London. It wasn’t just that you had a bed in a room, it was a whole ward - the AIDS ward. It’s where people would come and if they were lucky they would go home again - but they may have come in with something too much for us to deal with, so I get very - I still get very angry about the stigma because the bottom line is it’s your health. How you got it is irrelevant - and you could have got it from the most stupid of places, you just don’t know - apart from the obvious that you do know - but the fact that it’s actually treatable and manageable. Although I have friends who can’t believe they’re still alive and who went through a period at the end of the 90’s early 00’s when they realised that they’ve lived 10 years longer than they thought they would, and what are they supposed to do with their lives, because they expected to be dead, (exhale) and that’s a bizarre state to be in - you know, “why am I here?” because they survived for so long with it. They lost the weight and were reduced to walking skin bags and nothing and then have bounced back over and over again.
No one should be suffering anymore - most people can handle the drugs – they’re pretty toxic. So I think now we have a generation - my generation - who have been on combination therapy now for twenty years, are living with all the side effects of the toxins that they’ve been taking because - they are really toxic drugs. But what do you do? Keep taking the drugs or die? But now they’re getting so old that they’re dying anyway (bursts into laughter) which of course isn’t something to laugh about, but it’s quite nice that they’ve reached the age where they will die maybe because of the fact that they’re old, which is again not something that they would have necessarily expected to happen.
But there was that constant fear that the phone would ring and they would say “have you heard about so and so?” and then you think “OMG what have they done?” But it was nice to know that it was just something silly and they’ve done something stupid, and have been themselves as opposed to they’re currently in the AIDS ward, and which one?…
So yeah - vulnerability was really a short-lived thing because you don’t have time for it if you’re going to survive. Some people see it as heroic, others just see it as “I have to get on with it - it’s not going to get me and I have to live”. And some people have survived 30 years out of sheer will. Others, and I think there were a couple of cases where - a bit like urban legends these days - someone actually died in the doctor’s office when given the diagnosis that they were HIV positive. They just died of a massive heart attack from the shock. It’s like being told you’ve got cancer, but then there was no treatment, there wasn’t chemotherapy and radiation therapy, it was like “Well there’s nothing we can do except monitor you, deal with the symptoms as they present because we really don’t know what bug is going to get you” - because that’s what it was.
It’s just one of those things now I suppose - society just sees it as one of the diseases out there. I’m not HIV, you do have that whole thing of survivor’s guilt - I had to come to terms with that a long time ago. You can’t be ill around your friends who are HIV, because you can’t have anything that is as long term - as life threatening as what they’re going through - not everything but the average illness that you might have - something that will pass, because that’s how most people see illness - as something that passes. And of course, most people assume if you get the flu it will go in a few days - you know it might last a week or two, but it will go. People don’t actually think what happens a month later - you get a diagnosis of something and then you live with it, you deal with the emotional rollercoaster that you end up on, you deal with your friends going crazy, dealing with multiple people in depression, but you just - its life, it’s what it presents.
Many of my friends are still alive and its really good, and most of them are really successful - they’ve survived it, and now we’re just old (laughs) which is a joy! I just find it a chuckle because everyone in their 20’s said “Ah I’ll never see 40”, so when we did reach 40 it was like “Bloody hell! We made it! Let’s reach the next milestone.”