A journey into a painful part of queer history: the HIV epidemic of the 1980s and '90s.
A journey into a painful part of queer history: the HIV epidemic of the 1980s and '90s. This is the first of several episodes supported by The British Podcast Awards Fund and The Wellcome Trust addressing HIV in the UK, and as such isn't the funniest episode available. It is, however, important, and worth sticking with if you can, despite its considerable length and emotional heft.
For more details about the epidemic, the LGBTQ response to it and all the brave people involved, I recommend checking out We Were Here, 120 BPM, and How To Survive A Plague. They'll break your heart, but also, hopefully, inspire and uplift you.
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Hello! This episode, and a few more to come in this season, were made possible with the generous help of The British Podcast Awards Fund and The Wellcome Trust, who basically gave me money to tell nob jokes. Well, no, actually, they’ve asked me to do some episodes based around HIV, because it’s important, both historically and culturally, to know about this stuff. It’s not taught in schools, so instead of textbooks and teachers, you’ve got me.
This first episode will give a bit of overall context, and a potted history. Next week, I’ll talk to someone who lived through it, and after that I’ll chat with a handsome doctor about what HIV is, how we deal with it, and the myths that surround it.
Please stick with it if you can, because like I say, it’s important.
<History intro bit again - Glad I kept that.>
It would be easy to think that as soon as the first Gay Pride march had happened, suddenly everything was great and now everyone was free and It Gets Better and Love Wins. It would be easy to think that, but it would also be wrong. Because, as I’ve mentioned before, just saying “Love wins!” or “It gets better” doesn’t change anything. Love doesn’t win, unless you get off your arse and do something. It doesn’t get better unless people work long and hard to MAKE it get better.
Still, after the Stonewall uprising in 1969, gay rights movements really began to gather steam and followers and slowly, very slowly, things started to shift. Well, no. Actually, things began to discuss the possibility that shifting might be possible, perhaps, at some point, maybe, one day. And when I say it was slow going, I mean it. Being gay at all was entirely illegal in the UK until 1967, and even then was only partially decriminalised. You and one other person doing it in your own home was no longer breaking the law, as long as there was no-one else in. Seriously. Having a third person in the house at all while getting bummed was illegal. Which is a shame, because what’s the point in having sex if you’re not making your housemates uncomfortable by getting good and loud?
When I say “Things moved slowly” I am not kidding, by the way. It was 2003 before the UK government passed a law making it illegal to fire someone for being gay.
And in the USA, it’s STILL legal today, in the space year 2020, to fire someone for being gay in 17 states. So, yeah, slow progress, but still. Hope, visibility, and a general shift in the minds of the public was beginning to happen.
Anyway. In 1980 and 1981, there were groups of cases of pneumonia springing up in New York and San Francisco, linked to what they thought was a new form of cancer that seemed to attack the immune system, and seemed to be centering on gay men. And cancer didn’t work like that, as far as anyone knew, so this soon began to get the interest of the medical community.
It was even briefly called GRID - Gay-Related Immune Deficiency - for a little while until they realised it wasn’t, actually, gay-related. Because that’s not a thing when it comes to viruses. The virus doesn’t care - it just wants to infect people. It would be like saying only left-handed people get measles. This didn’t stop the disease being referred to as “Punishment from god” by religious nutjobs. It’s amazing the amount of hatred those fuckheads can justify. Jesus may well have spake unto the masses, saying “love thy neighbour, forgive his trespasses, generally don’t be a dick about it, yeah?” but these nutjobs replied “Yerwot, mate? You’re breaking up… Kill anyone different to us? Right you are, squire!”
A big part of the reason that this sort of fuckery was popular was because no-one knew what HIV was, at the time. We know now that it’s a virus, but it’s a certain kind of virus that hadn’t been discovered yet. In fact, we’ve only been studying viruses properly for about 40 years at the time all of this was happening, and it was considered impossible for a virus to do the things that this weird disease was doing.
And because no-one knew what it was or how it worked, there was no way to detect it - you can’t test for something until you know what it is you’re looking for. So, for a good few years, as more and more people died, there was no idea what it was, if or how it got passed on, or anything like that. All that happened was that the fear attached to it grew. We don’t know what it is, we don’t know how it works, we don’t know how or even if it can be stopped. All we know is that it seems to be attacking gay men. Lots of them.
Now we know that it’s transmitted through blood and sex. So while it didn’t actually target gay men, they have been known to love the D, and with cities like New York, San Francisco and London being places where lots of them happened to be, lots of boning was happening, and therefore a lot of disease was being spread about.
When I say “gay men” it all sounds a bit abstract, a bit vague. These were kids. The that way HIV works means that there’s no symptoms for a long time. So, without proper testing, you can catch it, feel fine and be having a ton of sex, and not know there was any kind of problem, or that you might have infected people, for 5-10 years.
So you could be running around as a horny teenager, experimenting, exploring your body and other people’s, banging anyone who’ll let you, then you turn 21 or 22 and BAM, suddenly you’re wasting away and dying, from something that no-one knows or understands. And just when you need help, and comfort and reassurance, no-one dare touch you, the newspapers and the authorities are shaming you and all your friends, and there’s people out there telling you it’s punishment from god for daring to enjoy your body. Imagine the pain of watching a loved one wither and die, slowly, over many months, and not knowing if you were going to be next. Could you kiss him? Or hold him as he cried from the pain and shame and despair?
Imagine not knowing if you could hug your friend as you cried your heart out, in case just by touching them, you passed on this awful disease with no cure that seemed to be magically targetting you and your friends.
A lot of these kids had left their homes, either for fear of their parents finding out they were gay, or had been kicked out BECAUSE their parents found out, and had come to the big cities to find a place where they could live and love openly, freely and without judgement. They’d built new, queer families, who could love and support them, and then had to watch as slowly and cruelly, everyone they knew and loved died in front of them.
There were a lot of stories of people in their late teens or their 20s, laying in hospital beds, alone, because there was either no-one left to look after them, or the family they had were already in similar situations.
So many stories of parents who, finding out that their son was dying, would rather ignore the news, than have to face the shame they felt at having a gay child.
Or, out of fear, wouldn’t collect the remains, even after cremation, because of the disease that had taken him.
There was one group of people, though, who cared for those dying men when the straight doctors and nurses would barely even dare to enter the wards where those with HIV were laid out - gay women. The lesbians were there, looking after the menfolk. It’s so easy, and stupid, to centre this whole thing around white, cis men. Again. But the truth is that people of colour and transgender communities were hit as hard, if not worse, than the cis, white homos.
And the women in the LGBTQ communities worldwide were the ones holding hands, being shoulders to cry on and generally helping everyone live, and die, with dignity. Because community isn’t, and should never, be “people who are just like me”.
By 1983, scientists had worked out that it was a virus, spread through blood and sexual contact. By 1985 there was a blood test to find it, but still no cure. All a positive test meant was that you knew you had it, and that it would almost certainly kill you slowly and painfully in a few years’ time.
Of course, the difference between scientific knowledge and general ignorance is a big one. So, despite it being common knowledge that it could only be passed on through sex and blood, there was still a huge stigma to having HIV.
If you had friends dying of the disease, the best thing to do was to lie. One girl’s best friend was a gay man who died of HIV in 1987. She told everyone he’d been in a car accident and everyone was sympathetic nd caring, as you’d expect. When someone found out through the rumour mill that her friend had died of HIV, they moved her desk to the other end of the office, and people refused to talk to her.
There’s even a story of a man who was feelign unwell stopping into a chip shop to use their phone and call an ambulance. When people found out he had HIV, none of them would buy anything from that chip shop any more.
You might be sitting there listening to this thinking “hoho! How silly people were, back in the olden days! We’d never do anythign stupid like that nowadays!” but let me just point this one out: Coronavirus. Any mask that isn’t a full-on Breaking Bad style facemask is completely useless at protecting you. Doesn’t stop every fucker from buying them, though. Well, you never know… Except we do know; it’s just that you’re an idiot. It’s exactly the same, except worse.. Oooh, I’m not getting chips from that chippy any more. You never know…
People are stupid, fearful, and easily manipulated. This has not changed throughout history.
That’s one of the things, actually, that Princess Diana was good for, bless her. Up until this point, the media had been not just been homophobic, but downright cruel to LGBTQ people, especially those with HIV.
The Sun, shitty little tabloid rag that it is, not even absorbent enough to make good bogroll, ran an article calling for the extermination of all gays, to stop the spread of the disease. Not finding a cure, or looking after those with the disease, or even educating people to stop it spreading, just KILL ALL THE GAYS, that’ll fix it.
Anyway. It was proven that HIV couldn’t be transmitted through touch, or sneezes, or sharing a toilet seat or whatever by about 1983, but that didn’t stop people being stupid and afraid. In 1987, so four years after they worked this out, people were still stigmatising and shunning anyone with HIV, being terrified to touch them, or to take money form them if they tried to pay for things, stuff like that. So, Princess Diana did a thing. She went on a tour of a new hospital and shook hands with a man dying of AIDS. Seems like such a small thing, but it caused shockwaves throughout the media. Four years, four years, since doctors had said “Nah, don’t worry, you can’t catch it from touching someone” and STILL people were terrified. And in the face of all that ignorance and stupidity, Diana took off her gloves and shook the hand of a dying man. That photo, arguably, did more good for the cause than any government announcement.
Speaking of Government announcements and that, in the same year, 1987, there was a big public health campaign in the UK, including a TV ad that is definitely worth a youtube, if only for the look of the thing. Big, burly men, chipping rock. The whole campaign was called “Don’t Die of Ignorance”, which is a pretty solid basis for something like this, and there were leaflets sent to every house in the country, because this was before the internet, and a flyer through your door was one of the best ways of getting information out there. It was a scary concept, with a scary campaign designed to hit hard. And it did - the guy who designed it says he occasionally got letters afterwards from people saying he saved their lives, which is great. What’s less great, of course, is that it didn’t help undo the stigma of shame and “You brought this on yourself with your lifestyle, why couldn’t you just be respectable like normal people” sort of thinking. And that’s a big part of this whole thing - not only did all of these innocent young men learn that they were mostly likely going to wither away and die and there was little or nothing that could be done, but they had to do so in the face of such shame and disgust from a society that didn’t know any better, or care to learn. “You brought it on yourself” is not something anyone in that situation needs to hear.
Not helping this, less than a year later, at the height of the epidemic, with hospital wards full of young men dying,the same government that didn’t want anyone dying of ignorance introduced Section 28, to “protect the children” by banning any discussion about homosexuality in any school.
So, millions of young people across the UK were told to wear a condom when having sex, because it stopped you getting pregnant. And there was no mention of HIV at all. And, in case you’re not up to speed, gay men tend not to get pregnant from the sex. Denied the information that would stop them literally dying of ignorance in order to protect them from the much more dangerous knowledge that it was ok and perfectly natural to love someone of the same sex. Outstanding work.
So, the epidemic continued. But there was some good news. By 1995, there were drugs available that meant it was no longer a death sentence. HIV was, and still is, a lifelong illness, but slowly it became controllable, and manageable.
In the past 37 years, literally my lifespan so far, more than 32 million people died from HIV and AIDS-related illnesses. And that’s just the ones we know about. The actual number is definitely higher. It’s a crazy number. To put it in context, that’s every single person living in London, New York, San Francisco, Berlin, Paris, Toronto, Melbourne and Sydney combined.
OR, a little over half the total population of the UK. It’s like Thanos doing his magic snap and making help the UK die. Except not, because it’s not random. It was for a long time almost exclusively the LGBTQ population. And it wasn’t quick, or painless, either. It was slow, and excruciating, and messy and absolutely heartbreaking. And it would be everyone you know. Not just your boyfriend, or your close friends, but everyone. The barista who smiles at you, the guy you see on your way to work most mornings, the older guy who dresses well in your office, the quiet one in your gym. The bus driver, the lawyer, the chef, and everyone they ever loved or cared about, slowly rotting to death while you watch, unsure when it’ll be your turn, and scared to even touch someone else in case they get it too.
If I were to sit here and read out the names of everyone who died, one after the other, without stopping, it would take me almost two and a half years. No pauses to eat, or sleep, just names, one after the other, for thirty months.
They all had dreams, plans, and a whole life ahead of them. They moved to the big cities to find more people like them, to build families and social groups that would love them and support them in ways that their own flesh and blood couldn’t, or didn’t want to. Some of them would have become great artists, or writers, or politicians or inventors or anything like that. Some of them were complete dickheads, of course, because who isn’t in their 20s? I don’t want to romanticise and generalise like that, because it’s stupid. It’s not that these kids were special, or different, or somehow more than anyone else. Quite the opposite, in fact - they were just like everyone else. All of them had the potential to go on to do great things, or to do nothing, sit at home and watch Love Island. And they never got to find out.
I”m not telling you all of this, to bum you out, or to make you miserable or sad. It’s hard to hear, but it’s important that we know about it. And that’s my job. It our job, really, to acknowledge these things, to look the brutal reality in the eye and be aware of our shared history. We are lucky not to have to experience it, in fact, I’d bet folding money that every single person who lived through it would never wish that on anyone, gay or otherwise. It hurts to look at, to think about, to address. It would be easier, certainly, to say that now HIV is under control, we don’t need to think about it, out of fear of the pain and suffering that this history brings up.
It’s our job, though, to learn from it, to carry the legacy of our queer ancestors with us, and build on it, as we create a world for those who will follow us. Out of all pain comes growth. The key is to find ways to process the trauma and turn it into something.
And by that, I mean it’s important to see the good that came out of these awful situations, as well as the despair and the pain. Because, in the midst of all this pain and suffering, people came together. In the face of seemingly inevitable suffering and death, these people, just like you and me, found hope through each other, and their shared fight. And by Christ did they fight.
This was also the time that Pride was becoming a bigger and bigger thing - our community was standing together, working together to beat stigma and prejudice and just be allowed the same rights and freedoms as everyone else. In the face of hatred from the media, the government, and, seemingly, the gods themselves, these people picked up their signs, their posters and marched. Amongst other things. Alongside Pride, organisations like Stonewall and Act Up, and OutRAGEand GMFA were formed, and did some of their best work. We’ll talk more about them in the future, because they’re amazing.
And that’s really the thing to take away from this. From so much pain, and suffering and senseless waste, compounded with shame and hateful campaigns from the religious right and those who were either malicious or ignorant, in the face of all of that, our community survived. It seemed unbearable at the time, and almost impossible to imagine now, but our brave siblings, together, came through it.
No-one managed it by themselves - it takes a village to raise a child, and it took a community, together, to survive a plague.
Maybe that’s the biggest lesson we can hold on to from all of this - that we are, and have always been, on the same team. Whenever you see, now, someone seeking to divide the community, whether it’s gay men but not women, or LGB but not T, or anything like that, remember our community is at its best when we include everyone. Because that’s what it’s all about - People doing what people do best - they look out for one another. Not out of fear or pity or panic, but out of love and genuine human kindness and that urge, when you see someone suffering, to do something to help.
We may be stupid, and scared, and easily manipulated, but underneath it all, we’re also kind, and caring and just a little bit wonderful.