Betwixt The Sheets: The History of Sex, Scandal & Society - AIDS Epidemic: Life & Death On The Frontline

Episode Date: December 1, 2023

How do we understand something as huge as a global epidemic?Similarly to Covid, the AIDS epidemic, which was most destructive in the 1980s and 90s, had such universal reach. Yet within that, there were millions of personal experiences.What was it like to work on the frontline with people who were hit by this cruel virus? How did a Canadian air steward come to be wrongly blamed for introducing AIDS to North America?To mark World AIDS Day, today Kate is joined by two special guests. Firstly, Flick Thorley, who speaks about why her experience as a nurse on an AIDS ward was a blessing. Secondly, we’re joined by Richard McKay, author of Patient Zero And The Making Of The AIDS Epidemic to unpack the larger societal reaction.Click here to find out more about the amazing work the Terrence Higgins Trust do.This episode was edited by Tom Delargy. The producer was Stuart Beckwith. The senior producer was Charlotte Long.Don’t miss out on the best offer in history! Enjoy unlimited access to award-winning original documentaries that are released weekly and AD-FREE podcasts.Get a subscription for £1 for 3 months with code BETWIXTTHESHEETS1 sign up now for your 14-day free trial https://historyhit/subscription/ Hosted on Acast. See acast.com/privacy for more information.

Do you want even more shocking and scandalous history? Like why the ancient Greek statues had such small manhoods? Or what went on behind closed doors in the Georgian era? We'll sign up to History Hit, where you can see me discover the scandalous side of history, as well as hundreds of hours of original documentaries, plus new releases every week, covering everything from prehistoric Scotland to the Treaty of Versailles.

Sign up to join me in locations around the world and explore the past. Just visit historyhit.com forward slash subscribe. Lovely bit Twixters, it's me, Kate Lister. I am here, you are here, and I'm so glad that you are. I have so much fun talking to you and doing these podcasts. I hope that you enjoy it as much as I do. But before we can continue on our little journey together, you know what's coming, I have to give you the fair do's warning.

Here it is. This is an adult podcast spoken by adults to other adults about adultery things, covering a range of adult subjects, and you should be an adult too. Actually, this episode is to mark World AIDS Day and we're looking at the history of HIV and AIDS and it is upsetting. It's a really, really sad history and you just might not want to listen to that today. In which case, this is your fair do's opportunity to give us a skip and we'll catch you next time.

For the rest of you, let's do this. It's only a few short years since COVID made its debut on the world stage. And even with that short amount of time, it's easy to forget just how much panic and fear and mistrust and just general weirdness was around, as we were all suddenly had to deal with the threats of this virus. It was bonkers. We all went a bit mad, didn't we? The disruption was huge, as was the fear and the paranoia. That's how people do react to pandemics and epidemics all throughout history, and the HIV and AIDS epidemic, was no difference. In this episode on World AIDS Day, we are looking back to the 1980s and the 1990s when the HIV-AIDS epidemic was sweeping across the globe. We can see the same pattern of fear and confusion playing out, as it has done every time throughout history when a major

pandemic hit, except HIV and AIDS was compounded by fierce homophobia and stigma and persecution of the sick. But in the midst of all this horror, there was also acts of immense humanity, kindness and bravery. With that in mind, today I'll be speaking to somebody who was there working with AIDS patients firsthand in the 1990s, as well as somebody who can give us a historical perspective on why we as a society behave the ways we do when confronted with such a scary reality. What do you look for in a man? Oh, money of course. You're supposed to rise when an adult speaks to you.

I make perfect copies of whatever my boss needs by just turning a knob and pushing the button. Yes, social courtesy does make a difference. Goodness, for a beautiful time. Goodness has nothing to do with it, there is. Welcome back to Betwixt the Sheets, the History of Sex Scandal in Society, with me, Kate Lister. As one of my guests today said, it's quite amazing to think that something as monumental as the AIDS crisis could come and go in the space of one lifetime. How did society react as this seismic event unfolded? How did this affect the gay community who would disproportionately hit? And what can history tell us about the way we blame and stigmatize individuals in times of crisis?

Today I am joined by two special guests. Author Richard McKay discusses his book Patient Zero and the Making of the AIDS Epidemic to unpack the larger societal reaction. But first, I'm speaking to Flick Thawley about her experiences as a nurse at the last Lighthouse in London, which, when it was first built in 1988, was the world's largest centre set up to care for people living and dying with HIV. Hello, and welcome to Betwixt the Sheets. It's only Flick Fornly. How are you doing? I'm doing very well. Thank you very much. Thank you.

I am so thrilled to be talking to you about your work in the 90s at the London Lighthouse, which was when it opened in 1988, the world's large. The judges centre set up to care for people living and dying with HIV. Do you remember the first person who you came into contact with who had HIV and AIDS? Was it in the 80s? One of my friends told me he had HIV and that was in the mid-80s and there was no treatment and it was like, oh crap, you're going to die. And he's still alive.

It's alive and he's living in London. We see each other regularly. that's a happy ending story. Yeah, he was diagnosed in 86 and is now living well. You know, he's an old man, he's in his 60s. And at that time, that was never meant to happen. That time everybody died. And so, yeah, he's one of the miracles.

There's quite a lot of them. Living in London at that time, did you know many people in your community who were affected by HIV and AIDS? Or was it purely professional? As a lesbian, my social network was a lot of gay men, and HIV featured very, very much in their lives. And it was peripheral to mine, but it was very much central issue and discussion point with all my friends. I was a bit of a fagg really. I was like the lesbian fagg.

So yeah, so most of my friends were gay men. And it was tough times. I was really, like most of my friends are well and stayed well. How was it that you became aware of? How did you get involved with working at the London Lighthouse Centre? I was working in the mental health unit at UCH and a sort of dementing and psychotic man was admitted with HIV. And I can't even remember, again, if I can't remember if it was called HIV yet.

They couldn't manage him over in the HIV ward at, the middle sex hospital, which is where he had been. And he was dementing with like a HIV-related brain impairment. So he came over to us because they couldn't handle his mad behaviour and dangerous behaviour. And so it was really difficult. But I got very involved with him and his partner. And his partner was there with him very involved.

And it was clear that neither place was the right place for him. And that was at the point that I became aware of London Lighthouse, which was an elaborate grove and was a hospice set up for people with HIV. And I went to an open day there and just fell in love with the place. And it was just like finding my people. It was just this amazing place. and with an incredible ethos of how to care for people and where all the others weren't others. You know, that whole thing about being othered in society,

it was like they were all there and it was all completely normal. And so I applied for a job there and I started working there as a staff nurse in 93, I think. And then I became the charge nurse. there and I was there until the residential unit closed in 1998. So 96 antiretrovirals came along and changed the course of people, many people's lives. What was it like working at the lighthouse in the early to mid-90s when this virus was causing so much devastation?

In the early days, the first few years when I was working there, we would start our shift and we would have live patients and dead patients to look after each shift because we had a mortuary in the building. And so when people died, the nurses did all of the, like, washing them and caring for them and dressing them and taking them down to the mortuary. And we used to, we never hid it. Whereas in hospitals, you never see dead bodies in hospital. They move about silently and secret beds, you know, but look like an empty bed zipping past, you know.

You never see dead bodies. And they cover them up and there's this shame attached to being dead. There's fear around, like we live in a death-denying society. But at the lighthouse, that was very different. It wasn't like we embraced it, but it was like it was happening. And we couldn't pretend it wasn't happening. And we were spending our times helping people have the best death that they could have. And that was our job.

And so when they did die, we treated them like they were still our patient. So they still deserve the same care and respect. And so we would tell everybody when somebody had died, and we would tell everybody when we were taking their body to the mortuary, because we would have to wheel it through the whole unit. And people could choose to come and say goodbye or choose to not come. And we'd always light a candle when somebody died. and downstairs in the main reception

there was always a candle lit when somebody died if they lied on the unit it was lit at one end and if they died with somebody else we knew but they died elsewhere it was lit on the other end and some days I mean some days it was just there were so many candles you'd come to work and there'd be like four candles and it'd be like four people had died

and there is you know overnight and it was heavy going and because I remember the first time I got taken to the mortuary. It was quite confrontational because the only dead person I'd seen up to that point had been my mother and that was maybe about five years earlier than that. It was not a positive experience. Yeah, so we had fridges and then we had a room off that room where we had a bed. It was set up like a bedroom and we would take the person out of the fridge and put them in the viewing room and then bring the friends or family or whoever in

and let them be with them and we would just wait outside the room and then after they'd spent time with them we'd put them back in the French and go back upstairs and look after somebody else who was about to die. So it was pretty heavy going but we were a team of in those days

everybody we wanted to do it. It was people who affected their lives. It's interesting how there's like a personal tax on this sort of thing because it was mainly gay men and lesbians. There were a few straight men and a few straight women there, but it was mainly gay men and lesbians who worked there in the whole building. And again, it was one of those places. It was an incredible place because one day somebody was your colleague and then the next day you were looking after them as a patient. The emotional toll that this must have caused for you, and everybody who worked there, I can't even imagine. How did you deal with it?

I remember it being quite an emotional car crash for me, really, at the time. And I think I drank quite a lot. I mean, we were all, we all did. And I think it sort of, I don't advocate, and now this is I don't advocate alcohol. But yeah, it really helped. And we had quite a tight-knit group of support. So if we'd had traumatic shifts at work, we would go to the pub. And there was like a pub literally across the road

where we would all hit the pub as soon as we left our shift. And it was a way we coped and we managed it. It was one way. We had more healthy ways as well, but it was quite a common way. You must have formed relationships and communicated with families of the patients there and loved ones. what was that like because to paint the picture in the 80s and 90s homophobia is still rife but it was exponentially worse at the height of the HIV crisis

and I'm aware that there were people who didn't even know that their child or the loved one was was gay until they'd been admitted to hospital did you have to deal with things like that as well oh a lot I mean there's one story I've told it before but it has stayed with me it's one of those really significant there was a young guy literally it was a common story who'd been chucked out whose family, whose dad, often dad, didn't want him in the house and mum didn't stick up for like her child. And that story was a really common story. He'd been chucked out of the house when he was, I don't know, 17 or something, ended up in London,

I think he was from Liverpool, ended up working as a sex worker, ended up with HIV, ended up with us. and Terence Higgins Trust started this amazing thing we used called Living Wills. So if you ever have, I don't know, a car accident or anything, and you end up in hospital and it's very clear about what your wishes are, about resuscitation or withdrawing treatment or whatever. So you make these decisions when you are compisementous and what you want when you won't be. And so we used to do these living wheels with people all the time.

And so he did one. And he said, I hate my mother so much. I will never forgive her. And do not in any way, in any shape or form, tell my mother I am dying or have died or do not. She doesn't deserve to know any of this. I just do not. And this is all written down really clear her name. Everything.

Do not tell her, this, that and the other. And we had many conversations with him about it. and he was very clear and it was all written down and it was all documented and in those days they weren't because I'm not quite sure about their legal status now at that point they weren't legally binding

they were just sort of morally binding that we believed that that's what people wanted and we did everything to respect their wishes he had this living world and he had it with him and we had it in his notes and whatever and then he started dementing which again was in those days was a very common, many, many people ended up with HIV in their brains

and it manifested in various ways. But it was a bit like started like with people without Alzheimer's. But it would happen very quickly. And so he started dementing and progressed, you know, really quickly. And he was in with us and he started saying he wanted to see his mother. And, you know, please contact my mother. mom, I really want to see her. And it was just so difficult because he'd been really clear, no matter what happened, this woman was not to come anywhere near him. And it was a real dilemma,

which took an awful lot of conversation and a lot of discussion about as to what the right thing to do was. And in the end, we contacted her because he was so distressed. And it was sort of like, in his reality right now, he was really distressed and wanted his mom. And it was a very difficult thing because it sort of went against what everything we believed that we were doing for people to help people and be as empowered as they could be around their own deaths. But we contacted her and she came and it was this incredible union of this woman who was full of remorse and guilt, you know, and hadn't known where her son was, hadn't known for however many years, didn't know where he was and had to deal with the fact that he was about to die

and that he was dementing, like he wasn't the boy she'd known. But he was so happy she was there. He was so happy she was there. And then she was amazing because she went from being like this total homophobe, unsupportive person to being really lovely visiting other residents. And people who didn't have people, like it was really central to his funeral. I mean, it was like one of those happy endings, you know. There was a lot of not happy endings.

There was a lot of not that sort of thing. there was a lot of sadness and a lot of anger and a lot of alone. And our job was to make sure that people weren't alone. I mean, I've got friends now. I'm still friends with people who were friends and family of people who died in the early 90s. How, when you were at the lighthouse or at any of the hospitals, how were partners of sick people treated? Because obviously this is a time when same-sex unions or gay marriage or that's in the distant future.

if you're dealing with somebody that's sick, it's technically only next of kin in the family that's lowered in. And I'm aware that for a lot of people, that was extremely difficult because they couldn't have the partner in with them. How did your team work with that? Well, we sort of ignored that. Yeah, we had our own rules. Yeah, we literally did have our own rules. But yeah, legally, legally, I think in hospitals, it was a much more difficult situation in hospitals. We only had the information. that the patient gave us. So this was, again, going back into the 90s, there were patients called Mickey Mouse. There were people called all sorts of things. Often people weren't brave enough to tell us their real names or their birth days or there were people for a lot of time through sexual health services who were known by names that weren't theirs.

I would hope that that has stopped. But that was quite common. So in terms of the legality of then tracking down like formal nexus, of kin's. It was like, you know, we just take your word for it. We'll have whoever you say is your next of kin as your next of kin. The work that you did and what you went through and what so many people went through in the 80s and 90s, it's so harrowing. I think that a lot, especially newer generations coming through who didn't experience it. They don't really comprehend what it was like before the antiviral drugs were there, is that people were just dying. No idea. No

idea. They've really got no idea. I mean, I think things like this, there are things, there was an unveiling of a rainbow plaque at the site of the lighthouse last week, and there's only recently been a Wikipedia page set up about it. Things like that program, it's a sin. It was like watching my life. That was how it was in the 80s and 90s. and it was difficult. And young people now in sex and prep and the most incredible thing being the U equals U campaign with HIV in terms of the reality that if somebody has HIV

and they're on treatment and they're undetectable, they are not infectious. They are not infectious. So that is like an amazing thing in terms of sexual freedom. But during the 80s and 90s, that didn't happen. And sex was certainly for gay men, was really terrifying for lots of people. And it was like playing Russian roulette. And it was something that really did lead to the drug problems that happened, you know,

with crystal meth and ketamine and GBAH and all of that, which if you think about homophobia and HIV and all of that, it was like a melting pot. It was all going to happen. What was your experience like as a young person? being part of the gay community and working at the lighthouse during that period, there must have been so many societal pressures and judgment about behaving in certain ways. I mean, it was so funny, like, as a lesbian in the 80s and 90s, like, the reality is we had pretty zero risk of HIV in terms of sexual behaviour.

They were like these mouthguards, like if you were going to have oral sex, look down a few. Dental dam. Dental dams, yes, dental dams. And it was like, what the fucking point with those? It was like, seriously, just so funny. It was like, yes, well, we're having safe sex too. And it was like, what the hell? The reality is we were the sort of safe pocket of people.

The lesbens. I have friends and have had friends, some of whom have died, who once they knew their HIV status, never had sex again. Never had sex again because they were so scared of passing it on to somebody. and didn't want to pass it on. And it was like, ruin people's lives because it was the choice that they made and I totally understand it.

But it stopped any intimacy and those relationships. There was just no option for them because sex was too scary. In San Francisco specifically, I was reading about a project that was organized by numerous lesbian groups, which was a blood drive.

And they specifically managed to get to the whole, hospitals to donate their blood only to HIV patients in the early days. And they were known as the blood sisters. And their slogan was, our boys need our blood, which I thought was really moving. And the volunteering, and I suppose because it's so stigmatized and so feared, I don't want to say that there was positive things to come out of it, because that sounds so bizarre. No, but there were. There really were. There was like, I can thank HIV for so many things in my life. Like my career, my whole career was as a result of HIV. My relationship, my partner as a professor of HIV medicine,

we got together, you know, 22 years ago. And, you know, that relationship, most of my friends I've met through working in HIV. My whole life has been completely framed by HIV. And I feel very privileged, like really privileged to have worked at the lighthouse, to have worked at Chelsea and Westminster, that have done the jobs that I've done

and be able to look after people with HIV. The people that I worked with, we left the lighthouse when the residential unit closed in 98. Like we were laughing the other day. When we were working there, we got memo one day, it came around. And this is pre-emails. So we got a memo that was like, can people please stop putting ashes in the garden

because it's killing. The plants are dying out. It's like there's too much ash in the garden. So there are so many people. in that garden and not all of them have memorial plaques or sticks or what benches or whatever but there are so many people in that garden so they're not allowed to do anything to it it's covered by some law that governs where body it's not quite a graveyard but it's like some sort of sanctified place where people are so they can't like concrete over it or whatever but it's like it's so beautiful it's such a

garden. Go, go and see it. It is such a beautiful space. And it's so weird, like the spirit of so many people are still there. As you said a bit earlier, death is, was very, very present all around you at the lighthouse. What was it like to get to know people and their partners really intimately and then lose them? One very memorable death. Because I'm was with many people when they died, holding their hands as they took their last breath and being there so they weren't alone. And we had single rooms where people could have a single room or we had rooms with four beds, a couple of rooms of four beds, room with three beds, and then a room with two beds. And people could choose when they came in, they'd booked,

literally they would book what room they wanted. And there was a couple. And one of them was dying at a faster rate than the other one, but they both came in to die. And I was with them the night that one of them, the first one died. And it's one of those memories that I hope I never lose. It's one of those, I feel like I did the best job I could have done. And I feel privileged that I was able to do it because what was so sad was the pair of them were there in single bed. It's not quite toe to toe, but that was sort of how the room was set up. So the beds weren't side by side. They were like getting.

And I was sitting at the bedside of the one who was dying. And his partner was at the other side of the room in bed, couldn't get out of bed, didn't want to come closer, wanted me to be there, but he wanted to be in the room, but he didn't want to be closer. It was like talking through what was happening. And I was just sort of talking to both of them and holding this guy's hand. and, you know, sort of stroking his hand and holding his hand, and until he died, and sort of saying to his partner, he's gone.

And just being the most incredible feeling. And what we always used to do, we always used to open a window when anybody died. We'd always open the window. And we used to say, we're going to let their spirit out. And it was just a thing we did, it's like the lighting of the candles. We would open a window. So I opened the window and I told him why I'd opened the window.

And then it was one of those experiences. I don't know if you've been with anybody when they've died, but I'm not religious. I am not religious in any shape nor form, but I have spiritual beliefs. And I believe if you spend time with people who are dying, it's very hard not to understand that the difference between a dead person and a live person is their spirit.

and I have felt it leave so many times, like literally felt it leave somebody's body. And I'm not saying it goes out of the window, but literally come out of like the person is one minute they're alive and then the next minute they're not and that sense of change. And sometimes there's a sense that they don't go away, that they stay around, that there's been many times and many times. of the nurse, we used to talk about it, there was the sense of, they were still there. So like, as we washed them and we, you know, cleaned them and, you know, tidied them up and dressed them and they weren't in their body, but they were still around. And this guy that night, he just stayed in the room. He's like, it felt like he stayed, he just stayed in the room of his partner. But then, like, when it got light, it's like he left and he felt it and I felt it. And it's just, I don't know,

I feel very privileged to have had those experiences, to have been there to be the person with somebody when their life ends, and to be part of something that we so much wanted to be able to help people die as well as they could, to give them as much control. Because that was the thing, there was no control in those days. Honestly, Flake, you absolutely took me in. My final question said the lighthouse closed in 1998. Yeah. And I suppose that that ultimately that's a good thing because the antivirals are working and people aren't dying and you don't need a hospice. But how did you feel leaving there?

Because even talking to you in this short space here, there's so much trauma and emotion and wonderful things. But it's so intense, the emotion. How did you feel like I'm leaving this now? It's done. Well, it was really hard. made a very big party on the res unit. A lot of my memories are from photographs. So really I can't answer that question.

I have no idea. I don't remember. But one of my colleagues, who sadly he's died, him and I were like, you know, we used to say, we'll be here when they turn the lights out. You know, we're like, we're never going to leave. This is they're going to have to find a cure. He used to say they're going to have to find a cure for, you know, AIDS, or we'll be here when they turn the lights out. And I remember that night going,

oh my God, turning the lights out. And it is good, but it isn't fixed. And I don't know, it's weird. It's like I feel like that HIV, it's one of those things that I think it has the potential to come and go in my lifetime and to have made such an impact on my life. And yet there's going to be all these people that come along and it's going to make no impact at all. Like, they're not going to notice. And yet, for me, it's, was my life. It was my friends. It's my career. It's my relationship. It's my everything. But when we left the lighthouse, it was just this massive grief reaction. It was just because it wasn't all joy that oh yay, anti-retivirals are here because they weren't fixing everybody and people still needed the care that we

provided. But the res unit then was taken over by Notting Hill Housing Trust and it became housing for people with HIV and people with disabilities and that, and that felt good. It's a really peaceful, lovely place with very, very healthy trees and bushes. So I think human remains clearly is very good for the garden. And that's the other thing. I think you find, yeah, people have quite dark senses of humour when they're dealing with sort of trauma all the time. I'll be back after this short break.

Thank you so much to Flick for joining. me, it was such a privilege to hear her story and remember all the people that she encountered and cared for. To get a broader understanding of the AIDS epidemic and its impact on society, my second guest author Richard McKay will talk to us about his book, Patient Zero, which explores the centuries-old culture of blame that occurred when the virus started to emerge. It focuses on a Canadian man, Gaitan Dugat, who was wrongly believed at the time to be the first person to have brought the HIV virus to North America. resulting in the term patient zero being coined.

Hello and welcome to Betwixt the Sheets. It's only Richard McKay. How are you doing? I'm well, thank you. Great to be with you, Kate. It's fabulous to have you here. This is such a fascinating subject and your book, Full Title,

Patient Zero and the Making of the AIDS Epidemic, published in 2017, and there has been a subsequent documentary. What made you want to tell the story of the so-called patient zero? We'll get into, even if that is a justifiable thing, but the idea that there was a first person to contract HIV. It's so important in this history, but what was it that made you think,

I need to do a book, that there has to be a book on this? The book came a little bit later. It was a gradual story, but it also a very personal, one too. Well before I had any idea that I would write a book, I was in Vancouver in my early 20s and making my very first steps out of the closet. And I had my first gay relationship. And I thought, hang on, hang on, let's do things responsibly. Let's get tested. Let's get an HIV test. and my very first HIV test came back as a false positive diagnosis. Rich. Oh, my God. Wow.

Yeah. And I mean, I read about this in the introduction to the book about how I got into this research. But that was a really traumatic experience at the time. I didn't have anybody I could talk about it with. And so it was something I felt like I was dealing with on my own. And I also had no idea that such was my view of science at the time as a, you know, card-carrying arts student. I didn't understand such a thing as a false positive. It really blew my mind that there could be such uncertainty in a realm that I had previously understood as being a pretty black and white topic. I now have a much more nuanced understanding of science and the complexities and the complexities and, the debates, but it just did not compute a false positive. And it took a few weeks for that

result to be clarified and confirmed. Retrospectively, I can see what a fortunate position it was, but at the time, I had the experience of being told I had HIV and then bit by bit, that position was taken back. And so I was in a way granted a reprieve from that news, but from that point sensitized me to, oh, so many things, the complexities of science, the ways in which the body can be a receptacle for social and cultural ideas. I hadn't really been that aware of the stigma that I had just picked up casually over time by reading things about HIV, about sexually transmitted infections, And so to be in that position, it really hit me strongly.

And so, flash forward a few years, I decided I wanted to do a master's degree. And then I thought, well, if I'm going to do a master's degree in history, I would really like it to be on a topic that felt both personally important and felt like it could make a difference in the world. And so that's when I got to be thinking about the history of HIV as a topic that would be worth exploring. my thinking of doing a master's degree in history was always going to be, but I'll be bringing in my media understanding for my film degree. And so there was going to be something about the way that media reporting

had an impact on understandings of AIDS. One of the things from a historical perspective, and even quite recently with COVID, I think we can all relate to that, is that when a disease like this hits, whether it's Spanish flu or COVID, or the plague, for God's sake, is science is a wonderful thing, but we don't half leap to irrational things very quickly. And we did it in COVID as well.

It wasn't long before you saw conspiracy theories kicking around that it's actually Bill Gates trying to inject us all with various tagging equipment and all of this crap. HIV was very much like that too, the fear and the belief that you can catch it from this, that and near the complete nonsense. Is the idea that there was ever a patient zero? part of that mythology. How did they even get to be an idea that there was one original person who was responsible for the pandemic? The phrase patient zero didn't exist before the AIDS epidemic.

Okay. The idea that it was important to investigate the earliest known cases of a disease outbreak for the information that they might be able to offer to understand the disease being investigated, its mode of transmission, its incubation period, you know how long between infection and display of symptoms, that idea goes back a long way. And investigations into trying to get to the beginning of an outbreak go back even further.

You often have a moment. mix of impulses when this work is going on. You have people who are doing it in order to understand. And then also, I mean, we would see with COVID as well, there's huge pressure to respond, to act, to make people feel safe. And we also saw this with COVID and you see this with other epidemics that it's hugely disruptive to have sickness break out in a community, in a city, in a country, in a continent, across the world. So a lot of people get angry. They're upset.

People are dying. They're losing their health. It arouses feelings in anger. And people often want to be able to direct that anger. And usually it goes towards people who were sick early. And then a scrutiny of their behavior to try to find things that they did that they ought not to have done that put others at risk. Trying to find who's responsible, I guess.

That, of course, they're not responsible. No one's responsible for getting ill. But historically, minorities have been blamed. Like in the plague, they did a great job of going, it must be the Jews. There was mass killings of Jewish people and various people are targeted. I suppose it's a misguided way of trying to figure out who's done this.

And then I'd never thought of it before as scrutinizing their behavior, but that's so true. you see that all the time. Absolutely. And if it's felt that a group of people keep to themselves or are isolated, are poor, are different in some way. It has historically been the case that these groups are much more easily grouped together and scapegoated. And the phrase scapegoat comes from biblical times. And it was the approach of what do we do when we have in our community the reason for God's displeasure and his punishment. He's one goat to be the one to bear these

sins and whip them out of the community and send them into the desert. It's a casting out and shunning out in an attempt to protect ourselves. So it's an ancient and widespread approach that doesn't necessarily make us any safer, but it feels like a productive way. And if you can feel that there's more distance between the people who are getting sick and you, I mean, we saw that a lot with COVID too, this distancing, this splitting that can make people at least feel that they're safer with no necessary basis in reality. I suppose that's especially true if you talk about something like HIV, which is sexually transmitted, then it becomes even easier to blame the person who is sick and sort of laden that with morality

and judgment calls about like, well, I would never do that. Really? You never have sex. You never have sexual contact. But it becomes, like you said, this weird way of distancing yourself from the illness. I'm like, well, I wouldn't have that kind of sex. So I'm not going to get sick. That kind of judgment call comes in as well. I think it's also worth bearing in mind the specific ways that HIV came to awareness in thinking about the way that stigma

grouped to certain groups of people. There are scattered bits of evidence suggesting that there were injecting drug users, mostly people of color in the 1970s in New York and New Jersey area, that were developing a pneumonia that seemed a lot more aggressive, but because of the distance of that group of people from health care, it wasn't fully investigated. But the group that did have better access and in which the infection and its consequences were really recognized and put together was the American gay community.

From about 1978 onwards, some gay men, researchers later found tended to be very sexually active and to travel a lot. They were developing this pneumonia, type of skin cancer and other types of opportunistic infectious. which seemed to suggest something was damaging their immune systems. It fastened itself there because enough physicians were observing something to be different about the cohort under investigation. And then they hadn't noticed due to a distance between people and the healthcare profession, the injecting drug users earlier. But they did notice this group.

And the historic stigma that had been around for decades around homosexuality, really, really attached itself to this new disease. And so even people who might acquire it via different routes of transmission because HIV can be transmitted through blood, again, through sharing needles, injecting drug users. For a long time, there would be this insistence that these people must have acquired it through homosexuality. And then you get into a whole set of competition about who is deserving of this infection and who is innocent, which is a trope of the innocent victim, the people who deserved it less,

which goes back well over 100 years with regard to sexually transmitted infections. And on the one hand, it's really complex to the way that a disease can emerge into awareness and have cultural associations be built upon it. And at the same time, it is incredibly, I don't know, it feels so straightforwardly like, oh, we're doing this again, you know? Yeah, absolutely. So tell me about Gaiton Dugat and how on earth we even came up with the idea that there ever was a patient zero. Gaiton Dugat was one of the first 100 patients reported to the Centers of Disease Control when it started carrying out its research into AIDS.

There was no virus that was known at this time. A whole bunch of different theories of causation in 1981 were. posited, you know, maybe it was some genetic predisposition that gay man had that wasn't understood. Maybe they had bombarded their immune system with all sorts of infectious diseases and party drugs that they were taking. Maybe it was some new virus or another virus which they'd been exposed to a lot, which had mutated. So there was no real understanding of what was going on, But enough of a case definition for AIDS was developed that cases were being reported to the Centers for Disease Control, which took a lead in the investigation. And Gaetton-Dougat's name was among them.

He was a flight attendant. He worked for Air Canada. So he's unusual in that he was a Canadian citizen being reported to the American authorities. So flash forward to 1982 when there is a. a report from Los Angeles that a number of AIDS cases who were sick, some whom had died, may have had sexual partners in common. And so investigators for the first time had the possibility of being able to demonstrate that whatever caused AIDS was sexually transmissible.

So that, okay, we need to check this out and investigate it further. So a team of investigators were interviewing these men or if they had died, people who knew them, to get as many of their names and contact information of previous sexual partners that they'd had to be able to see if there were any connections that could be illuminated. And they were struck by the fact that one man's name came up a number of times, and it was Gaetain-Dougat's name. And so because they were trying to link these cases in California, mostly in Los Angeles, but a bit further apart, they were referring to them as California cases. And then there was this one patient from outside of California,

which they abbreviated to patient O for outside of California. He appeared to have this linking role. And at the time, the assumed incubation, period between infection and display of symptoms was somewhere around nine months. It's really short compared to what we now know about HIV. And that short incubation period made it seem more likely that if Gayton had sex with a man and a few months later he showed signs of the what was still called AIDS at that time, that could have been a cause. If he had sex with another man, within a few months later, the man started displaying symptoms, the likelihood that

it was that act that was infecting them. Flash forward to what was known a few years later, they found a virus, and then they found that the incubation period was a lot longer than that. What we now know is that from infection to display of symptoms can be upwards of eight years, even longer. So what was likely happening, given what we now know, is that these infections which seemed to be linked to Gaetan were more likely the after-effects of sexual encounters that these men had had years before. But given the emerging knowledge at the time,

it was seen to be a cause and effect type thing. That could be one takeaway to the way that it's so seductive to look for the simple answer. And it's very difficult to dissuade some people from who understood it then to think of it differently now because it turned out the hypothesis that that study was trying to investigate was correct. HIV is a virus that is sexually transmitted. Those men were in a sexual network. They may have transmitted the virus amongst them, but the view that the way in which patient O got misinterpreted over time, because that's how it

eventually entered the literature. Oh, right. Oh, I'm making a rounded oh with my hands, got changed to a narrower zero, unexplained why. Wow. And because of the fact that Gayton was one of the earliest patients that were known and reported, because he was a flight attendant and traveled widely, because he was linked to a number of other early cases,

this is the crucial part, because Zero has this really significant meaning as the beginning of all things. You had all of the elements of a story that just with a little bit of looking at it from a different way, if you wanted to interpret it in a certain way, you had enough people doing it that this story explained how AIDS was transmitted,

but also you could look at it as being, well, patient zero, that means it's how it began as well. It's the starting point. And so even though the investigators often really tried to be clear that this is not what we're trying to say. We're not trying to say that this is how it was introduced. You have other things working against that, the way that they created a diagram which put

I'm looking at that, yeah. Is now being labeled as patients zero right in the middle. Another reason why he's right in the middle is that unlike many of the other people that were being interviewed, he had kept an address book. Because of that, he was able to give far more names than anybody else. And so in a sense, by being disclosive and trusting and being able to offer assistance to the research, he later found himself being villainized through a misunderstanding of what the study was trying to do and all of the different ways in which a popular desire to see a simple explanation,

then kind of barreled down on him and his role. So this original study, which I guess you've got to, it had the best intentions, but there's some salient lessons for academics in all of this, I think, you know, not least the power between the academic and the subject matter. But how does he go from being patient oh for outsider to patient zero? Who made that mistake? And how did that become part of public consciousness? Because I don't think everybody's out there reading scientific journals, although they may have been, I can see how the mistake is made, oh to zero, but who makes that mistake? So it happens at some stage within the CDC's work. And it would appear that there were changes

made from when the document was circulated internally at CDC to then being spread more generally to other public health partners. And the way, either the way in which the typewriters, because some typewriters will not distinguish between O and Zero, or the secretary who interpreted that bit of handwriting, it seems that it started there. So you have people talking about patient zero from around 1982 onwards. But then when it enters publication in 1984, it enters print, it's clear in the medical journal article that it's a zero and not an O. And then you have the journalist, Randy Schiltz, San Francisco-based gay journalist,

who is, by 1985, he's been reporting on AIDS. He's increasingly desperate about the lack of attention. that is being given to the disease and fears that it will lead to the, I mean, there were talks in 1986 of sending gay men to concentration camps, really feeling that the only way to get governmental attention focus is to write a book.

And I'd read a news report, an interview he gave when Anne the Band, the book he wrote, was published in 1987. where he said, you know, I wasn't even looking for Patient Zero. He kind of found me. I didn't really, given the way in which Randy Schultz makes so much about this character, and he really, if he set out to write a heroes and villains approach, one of the main villains is Gaetton Dugat,

because he interprets the flight attendant as not only having played an important role in terms of being an original case, but then also really views him as a sociopath and was convinced that Gaetan was deliberately trying to infect people and saw it very much in a personal terms like people that he saw dying of AIDS in 1986 had his virus, the flight attendants virus. It really became personal. Given the way it turned out, I found myself kind of finding it hard to believe that this was, you know, it had just happened to happen. and yet it turned out to be the case. And so what would it mean to take all of the information that I'm gathering

and see if I can approach as sensitively as I can, a view of Gaetton Dugel, what his experience might have been like being told he had skin cancer, as he was in 1980, thinking he was going to marshal all of his strength and resourcefulness to be able to beat it, and then having it take on year by year a more complicated, much darker set of connotations and morphing into AIDS.

In the midst of that, being told that by medical practitioners, by scientists, that he needs to make radical changes to his lifestyle, he needs to stop having sex because they're pointing to him as the proof for why this needs to happen. and that person has no recourse to anything external. It's all, everybody's pointing at you. Your body is the focal point for this shift. And how do you respond? And in that circumstance,

if you don't do exactly what the experts are telling you to do, are you a sociopath? I couldn't accept that as the only answer to that situation. One of the things that I really want to, and is so important is what did you learn about Gaetan? Because I know that you spoke to former partners of his and looked at letters. And this person that's been so mythologized into this patient zero. I can't imagine what he was going through.

But what kind of person was he? What did you learn about him? I learned that he was loved. I learned that he loved others, that he was very loving. It wasn't until more recently that records relating to LGBT people have been preserved actively. They would be actively destroyed often. So there was this irony that it was hard to find, really difficult to find, any things that he had himself written and created. And initially, I didn't think I'd be able to find anything that would really illuminate his perspective.

I really thought it would just be through stories related to me by people who are. who had known him if I could find them. And I eventually found a number of people, including being able to build trust with a former lover of his, a wonderful man named Ray Redford. He was able to comment on Gayton's last, you know, days in Vancouver before he returned to near Quebec City to be with his French-speaking family there for his last days.

Eventually, Ray said, oh, you know, would you be interested in seeing a letter that Gaeton wrote? And I thought, yes. please. And that document is this fascinating document from 1982 that Gaetan writes to Ray from Montreal and it's a freezing cold day and he describes how he feels like an alien because he's been unwell. He's got a bald head because of the chemotherapy. So he's shaved his head and he's walking around feeling like an alien. But even in that moment he's able to try and, you know, tell a joke or two, sends his love, and also add that, you know, he's going to be seeing his

family soon, and they send their love to. In this most demonized AIDS patient ever, in his own words, what part of his illness experience would have been like his subjective experience, but also the connections that he was maintaining and that were important to him, that felt like the antithesis to this highly mobile, careless, sociopathic, little opportunities like that, little documents like that, photographs, those are the pieces that have made up what I've learned about Gaitan. And ultimately, the idea, the concept of a patient zero in the HIV crisis, is it just fueled stigma and hate and prejudice even more.

I don't know if you'd ever even be able to find a patient zero, who was the first person who is infected. It's such a heartbreaking story. And I'm so glad that you've told it, that you've done this research and you've brought Géton out of that awful stigma that was heaped upon him. You've been incredible to talk to today. Thank you so much.

And if people want to know more about you and your research, where can they find you? They can go to www.borehiv.com. That speaks to the prequel project that I've been working on for the last few years, which is looking at how did gay men become a group of interest to public health workers around venereal disease control, sexually transmitted infections. And they can find out more information about the documentary film that has been made from, the book, which is called Killing Patient Zero, which you can find on Apple or Amazon. Amazing. Rich, thank you so much for talking to me today and telling this story. You've been

marvelous. Well, thank you so much for having me. It's been a real pleasure to be with you. Thank you for listening. Thank you so much to both Flick and Rich for joining me. A special thank you to the Terrence Higgins Trust for putting us in touch with Flick. To find out about the wonderful work they do supporting people who live with HIV, head to thtw.org.uk. And if you like what you heard, please don't forget to like, review and subscribe wherever it is that you get your podcasts. If you'd like us to explore a subject or maybe you just wanted to say hello, you can email

us at betwixt at history hit.com. We have got episodes on everything from the surprising history of heterosexuality to the Kennedy Curse, all marching your way. This podcast was edited by Tom Delagie and produced by Stuart Beckworth. The senior producer was Charlotte. long. Join me again betwixt the sheets, The History of Sex Scandal and Society, a podcast by History Hit. This podcast contains music from Epidemic Sound.