THE LOG BOOKS
Season 2 Episode 2 - “One Hell of a State”
Presenters: Tash Walker, Adam Zmith
Producers: Shivani Dave, Tash Walker, Adam Zmith
Music: Tom Foskett-Barnes
Artwork: Natalie Doto
AZ: This episode contains stories about illness, death, sexual consent and ill-treatment and discrimination of people living with HIV and AIDS which are terms used interchangeably in the logbooks and this episode because of the time period.
Unknown: This is a logbook entry from April 19th 1984, made by the volunteer Antonio. ‘Terrence Higgins Trust phoned with details of latest AIDS discovery. Researchers in the USA are almost certain they have identified the virus responsible for AIDS. They’ve called it the Human T-Cell Leukaemia Virus Type 3. It is very similar to the retro virus identified by researchers working separately at the Pasteur Institute in Paris, and this added credence to the USA discovery. It means work can move forward to: one, spot antibodies of the retro virus in people suffering from AIDS and pre-AIDS and therefore develop a diagnostic test for AIDS and pre-AIDS. Two, genetically engineer antibodies to the virus which may in turn lead to a treatment for AIDS. Three, work out the structure of the virus which may make it possible to develop a vaccine against AIDS. All of these are optimistic anticipation and maybe years rather than months away but the latest development is clearly an important breakthrough.
Unknown: This is a poster glued into the logbook in May 1983, announcing the London Gay Switchboard and Gay News conference on AIDS. Saturday, 21st of May, 1pm, Conway Hall Red Lion Square London WC1. 1pm: Dr Ian Weller’s account of what AIDS is and isn't and of medical experience in the USA. 2:30pm: Mel Rosen from the Gay Men's Health Crisis in the USA will explain the response of the gay community there. 3:15pm: Martin Butler from the Terrence Higgins Trust will talk about the community response in the UK . . . [Fades out]
TW: So that conference that was on the 21st of May 1983, it just shows you how quickly Switchboard and others reacted, you know. I think everyone just realised that they, they just had to do something.
AZ: That was such a big milestone in the UK's response to AIDS and it was driven by Switchboard and the other important milestone we heard about at the top this episode was the discovery of the HIV virus, the thing that was causing AIDS and I think it was interesting in that logbook entry to hear about the prospect of a vaccine which was kind of floating around at that time when the virus was discovered.
TW: You're listening to The Log Books, stories from Britain's LGBTQ+ history and conversations about being queer today.
AZ: In partnership with Switchboard, the LGBT+ helpline. I'm Adam Zmith.
TW: And I'm Tash Walker. In this season we’re reading through the notes made by the volunteers who took calls between 1983 and 1991. Episode two ‘One Hell of a State’.
AZ: This is the second episode of our three episodes covering HIV and AIDS, with our focus now widening to the science, the government, and the community organising.
TW: You’re going to hear stories from people getting treatment for their new diagnoses. Switchboard volunteers handling a surge in calls and people who attended that first crisis conference at Conway Hall. Starting with Tony.
Tony: Switchboard got together with the Health Education Council to do a talk on this new, and by now receiving a lot of publicity, disease at the Conway Hall. There was Mel Rosen from the New York Gay Men's Health Crisis. There was a couple of doctors from London, forgive me I can’t remember their names, amazing people. Well, we got, thanks to the Daily Mail, we got eggs thrown at us on the way in and we had Mel Rosen from Gay Men's Health Crisis who the Health Education Authority had, was supporting us in the conference and they'd flown him over. I remember Mark Ashton standing up and saying, ‘we don't know anything about this at the moment’, you know, ‘do you think it's a CIA plot, to kill gay man?’, and Mel Rosen said, ‘It might well be we know so little about it at the moment.’ [Laughs]. And they talked and I was just, despite having read all the information at Street Wise, I was deeply, deeply shocked. From that to, if you think about it, you know, ‘81, ‘83, ‘84, you know was when you, know things, arising from Switchboard and the Terrence Higgins Trust was formed, and for which I think we provided the backbone for that, with people like Lez Latner and Tony Whitehead, you know, meeting. People in the upstairs bar, the London Apprentice, you know, with some of Terry’s friends and the same gay man, Terrence Higgins, who was also arrested on the 1980 pride march, [Laughs], because we were working together at Heaven at the time. And you saw all these queens being arrested and him in full black leather, took off his leather belt and started- jumped down off the boat and started hitting the police – ‘How dare you hit my sisters!’. [Laughs]. ‘How dare you!’. And I remember getting up in the end of the meeting and saying, ‘look it's absolutely clear these guys, these friends of Terry Higgins, who’ve got together from Terry Higgins Trust and are starting to try and raise money for the hospital, which I think was the Middlesex I'm not certain, where Terry Higgins had died, these people need our help so let's just huddled at the back and just, you know, make a few plans about further meetings’, and then I went out to the stand where Martin and other people were living, and Terry’s friends, saying you know, ‘I'd like to do all I can to help and support’, and Switchboard basically said, ‘look we're going to give every support and help we can on this’.
AZ: I can't help but put myself in the time and thinking about you know if I was infected at this time when we didn't know very much about this virus, thinking about the people that I have sex with. The guilt of potentially transmitting HIV, or having transmitted HIV to another and blaming myself and then coming to know that it's the virus, not me, that's to blame.
TW: It’s definitely leads into something that the queer community experiences in shed loads and still does today and that’s shame.
AS: Mm, and there are two ways to challenge things like that guilt and that shame and, you know, getting the language right is one of them and even inventing the language.
TW: Yeah, and an example of that today would be ‘Chemsex’, you know, a word that has been created to describe something that is being experienced by some members of the LGBTQ+ communities today. I mean, I think that it's a really interesting thing when we think about language and we talk about the evolution of language, and we look at the LGBTQ+ communities, we've evolved so much throughout the years and I think it's, when you look at language, it is often these marginalised communities that are the leaders of that.
AZ: There's a logbook entry that touches on this, from this time Tash, from March 11th 1987. It's a call from someone in Scotland asking for information about a group that provides transport for ‘AIDS victims’, and another volunteer has circled that word ‘victims’ and written a note, ‘what?!, could we use people with AIDS please and not victims’, and than they’ve written a slightly longer note underneath saying, you know, that when you say ‘AIDS victims’, or ‘sufferers’ you put the disease and illness first and not the person. It's really interesting to see in Switchboard in 1987 that conversation about how language needs to be used in a humane way.
TW: Yeah definitely. The logbooks are littered with these internal debates and it's really important to see this, because it’s a snapshot into history and time and the reasons why it's important to challenge, always challenge, language, and always continue to evolve. And it reminds me of something else which is- that was happening around this period of time and that was normalizing the conversations around sex and safer sex, as Nick tells us.
NP: I’m Nick Partridge. I'm sixty-three years old and I spent most of my adult life at the Terrence Higgins Trust and as part of the community response to HIV and AIDS. And at Switchboard there were big arguments about whether condom use and safer sex should be mentioned on every call, irrespective of what it was about, irrespective of if somebody was calling to try to find accommodation or because they just wanted to know the opening times of Heaven, and the decision was that yes, we would say on every call ‘remember to take your condoms with you’ or however you, as a volunteer, wanted to phrase it but you needed to raise safer sex and the importance of safer sex. And all of that had a huge impact. If you look at the number of STIs amongst gay men, so sexual transmitted infections amongst gay men, they dropped dramatically all the way from the end of 1983, but certainly through 1984 and by 1985, syphilis among gay men is almost eradicated. Gonorrhoea dropped down to the floor, and that was a reflection of a really big change in sex and sex lives.
MT: The thing is, is that you know, we were all rapidly adapting to condom use really, really quickly, you know. That became part of the game, you know. When I was having sex I wasn’t not having anal sex but condoms were always present. They were always there, you know. Yeah, and I do remember a couple times when I didn't, and would just be absolutely wracked with guilt, you know, absolutely wracked with guilt, and, yeah, try to deal with that and process all of that. I took a while to deal with that as well. I mean the thing that I always have to remember is that I started my sexual career HIV positive pretty much, you know, I'd had one or two lovers and then ‘boom’, I got my diagnosis right and then I was back out in the world. So, for me it was always caution, fear, never letting up, and because I always wasn't disclosing to people so that, again, made it really, really challenging for me and I loved sex, you know, and I think what I did and I’ve only reflected on this recently, I went to saunas. I would go to saunas, because complete – and they weren’t like, you know, your chariots, they weren’t your big saunas – these were local authority saunas in the gym , and I would cruise those saunas.
Unknown: Logbook entry 8th of June 1988, ‘yesterday’s Guardian, 07/06, had a piece on AIDS research which seems to suggest that condoms rip a lot in gay sex, but oral sex may be more of a danger then we thought. That deep kissing should be avoided if you or your partner are HIV plus. This looked like scaremongering to me but I've left the clipping at home, sorry. Any news on research etc, that we need to know? I'm beginning to feel disillusioned about my safe sex spiel’. Another volunteer named Panda writes underneath ‘all of their info is either wrong or outdated or unsubstantiated’. One of the issues that we’d get with, especially guys phoning up, around that time was, around the safe sex and condom use. Something that did happen sometimes was like guys saying they’d lose sensitivity when they have to wear a condom. We know that, to an extent, that that's not really true but something that would happen sometimes is the guy would pull the condom off, whilst having sex. And so, there was a great deal of fear around that for a lot of guys, where he would say ‘well the guy had a condom on before we started sex because I insisted but at the end the condom wasn't there. So, I don't know whether this guy pulled the condom off during sex’. Which would sometimes happen, which is a complete violation of someone's trust and putting someone at risk themselves and someone else at the same time. So, we would have those kind of calls around that, which was a huge issue, then there was the stuff around condoms splitting or ‘are condoms safe? Do you have to wear a condom during oral sex?’. There was all those kinds of issues. Some of them still going on now. The more things change, the more they stay the same. We would also get calls from women around, you know, is it- can there be transmission between women? The use of sex toys, that wasn't so much talked about them because, there was still like a hang up around lesbians use of sex toys and penetration, at that time. A lot of people were thinking that lesbian sex didn't involve penetration except by fingers but not by objects, not by sex toys so even if some dykes did do that, they didn't always admit it or talk about it. Unless they were into other things and then they would perhaps feel free to discuss that. They were into BDSM, but then a lot of lesbians back then wouldn’t discuss if they were into that either, there was a huge stigma around lesbians being involved in BDSM or in the use of toys. It's not so much now but back then that was huge. So, it was around safe sex practices around that and the use of dental dams as well, which I got roped into doing. [Laughs]. I’d go around the clubs trying to persuade dykes to use a dental dam, you know, the trouble was we didn't really believe in the damn things either [Laughs]. It was trying to convince some woman that, you know, you’ve got to go down on another woman with this bloody piece of rubber between you and her. I mean, I’m going to say, ‘that’s not going to go anywhere’. So it was, you know, going to a club and everyone’s had a couple of pints and you’re trying to say, ‘well you really should use this’ and she’s telling you to fuck off. [Laughs]. You know, god, dear, you know, she said, ‘I don’t want to eat my food through a bloody plastic bag so I’m not going there’. [Laughs].
Sali: I worked in HIV prevention in East London and we were trying to make sure that we were getting our message across to all young people and that included ones from different minority ethnic groups. Hi, I'm Sali, I'm fifty three, I am a parent and a lesbian and a vegetarian. A challenge was trying to get a message through to young Bengali men who were having sex with other young men at that time but wouldn't identify as being gay and indeed may have gone on to have relationships with women as well. So, we did a set of posters that we got young people involved in. They were represented in the posters in local venues. We got really good positive feedback off of those posters, I won a- this is just, not like bragging or that- but we won quite a few awards with our health promotion thing, like, I did a campaigning hairdressers. So, I got a young girl, bless her, who wanted to be a model. We put her in rollers and the campaign was, ‘Now you can get something from your hair dresser to really make your hair curl’ because we really were at the cutting edge of what we were doing and going into clubs and handing out free condoms. My favourites were the gold ones. The H. T. Special, I loved them, just because they look nice and I love a good marketing ploy you know.
AZ: Sali is one of the amazing lesbians who helped in the crisis.
TW: There were many, many, more women including those who volunteered at The Lighthouse Centre, which took care and supported people with HIV and AIDS, who also helped. We have a specific thank you from Julian to all the lesbians who helped in one way or another.
AZ: And listen carefully to this clip because Julian's a bit emotional.
Julian: If you look at a lot of the lesbians in the caring professions, you will see that it was an awful lot of very strong dykes in the hospitals who were being nurses, who would be prepared to go into and work on HIV positive patients, for example. And you will see that most, the majority of lesbians, and this is very [inaudible], actually accepted that and became the carers, became the best friends, of people who were, you know, who were, their brothers and sisters. I decided that I wasn't going to test. I was going to do all the things in moderation you know, and take on the safer sex habit, whatever that might be but I wasn't going to test because I couldn't cope with the outcome of that. To call us, it was always a question of Switchboard did then, and does now, and laying out the options for people, to allow people to make their own informed choices because that’s all you can do. You can’t say ‘It’s better to, or it’s not better to’. You can only turn around and say, ‘how do you feel about it?’
LC: This is a logbook entry from February 1985. The HTLV3 test is probably a bad idea, given that there are increasing reports of dentists and surgeons refusing to help those who have the virus. Knowing that one is amongst the twenty percent of gay men visiting London’s clinic who test positive can do nothing for one's self-confidence or general state of health. Callers who do not appear to be particular at risk, should therefore not be encouraged to find out the worst. Since doing so and knowing it, may simply make a worry turn into a panic.
TW: This is a logbook entry from January 1986 made by the volunteer ‘Panda’. ‘Some volunteers will remember Martin Fright?, ‘The Bear’. I was devastated to hear last week that he has died of AIDS in Paris on the previous Saturday night. He and I were each other's first gay lovers. We met almost exactly ten years ago in those heady and uncomplicated days of The Gay Liberation, which is why I'm writing this. I feel too, that his work for Switchboard should be remembered too. He was a volunteer in 1977 and 1978 and threw himself wholeheartedly into work for training group and development group as it was then. I think he was training group coordinator at one point and also press officer and speaker’s organiser. Those of us who knew him will remember, and miss, his energy, humour and care and intelligence. Certainly, he was responsible for encouraging me to join Switchboard and several others too. He only left because he left the country to live first in Florence and then Paris, pissed off with the looming madness of Thatcherites in Britain. On the phones and in meetings he was marvellously charming and warm to individuals. He was also good at resisting bureaucracies and oppressive institutions in all walks of life. He had a passionate sense of justice, humorous joie de vivre, and was wonderfully internationalist.
TW: As we heard in episode one from Lisa, volunteers like ‘The Bear’ at Switchboard, were starting to die.
AZ: One of the loudest and most colourful volunteers who died around this time is Mark Ashton, who was only twenty-six when he die. He had led ‘Lesbians and Gays Support the Miners’ and there's a little card in the logbook, taped in, in March 1987 that says, ‘you are invited to a memorial gathering for Mark Ashton, on Saturday the 11th of April 1987, 4pm to 8pm at The Tabernacle in London’.
TW: And Femi has some lovely memories of Mark but the audio isn’t great so listen carefully.
Femi: Yeah, Mark was the most beautiful, the funniest, the bitchiest, just really energetic little thing you could imagine and I thought he was irrepressible, but I think it was his very beauty that made him so attractive that made him most likely to get HIV. Oh yeah, eventually we all knew. I don’t know, I didn’t think he would die but that’s because I knew others who didn’t. I know of thought that he was so vibrant that he wouldn’t. But, we lost too many to even start thinking about. You know we lost [inaudible]. I say lost, you know, they died. They got HIV, I don’t like ‘lost’ very much. Anyway.
Unknown: But the first time – I mean he was a hoot and you'll see he did a lot of night shifts, he was officially unemployed, he was actually a rent boy which nobody talks about. It's amazing the way they respectablise us from the Eighties. I'll never forget him and another well-known person just giving a disquisition on which were the best toilets in the west end to take your punters into, because you know, which ones had the most space, and you were least likely to get turfed out by security. I always remembered that the Strand Palace Hotel was particularly good apparently [Laughs].
AZ: Tash, can you tell me what it would be like to be going through this kind of period where you're losing other volunteers?
TW: I thought about this a lot in the logbook entries that we’ve read and in the stories that we've heard, and I just can’t, I really cannot imagine what that must feel like or how they coped.
AZ: Especially because like they're trying to still keep the service running and supporting all the people who are calling, and of course the people who are calling are doing so because they need help themselves at that moment, [yeah], and what you need from Switchboard is a sort of, you know, a person who's going to support you and you don't need to worry about what's going on for them or in the phone room or anything.
TW: Yeah, definitely the strength of not only the community in general but the volunteers at Switchboard just shines through in this period of time. Not only were they navigating what to say on the phones but also what to do in their own lives. From testing positive to losing their loved ones.
AZ: Yeah, so do you want to tell us about Richard?
TW: Yeah, so Richard is someone I actually have met from being a volunteer at Switchboard today. He's volunteered for Switchboard a couple of times throughout his life but here is a story from his twenties.
Richard: I’d had friends who had become ill, you know, now because everybody does so well, well the vast majority of people in wealthy countries who have access to treatment do so well. It is difficult to remember how gaunt men looked. I tested positive in August 1995. I stopped working the clubs and I was working in a record shop which seems like a novelty now, and people they suddenly, they sold these big plastic things that had music on and I worked for [inaudible] Records and my late partner phoned the shop to tell me that he tested positive, and I thought, ‘well that’s me done as well’. We went to see a psychologist called David Miller, brilliant psychologist, and came out wanting to get on with our lives. Bob and I were unusual in being working-class gay men. Our gay scene, our communities, then and perhaps to some extent now, were full of wonderful, educated, talented, if you can afford to go out and drink in a gay bar, relatively wealthy gay men. We were, Bob and I ,were born nine days apart. Two ordinary working-class families, his mom liked a drink, my dad liked a drink. We were just in love in a way that only teenagers can. That particular intensity that you will never actually forget, no matter how many relationships you have after it. We were teenagers, and we moved into our first flat with a selection of second-hand furniture from my relatives and a single bed. And it wasn’t perfect, we didn’t have- we weren’t without problems, is one way of putting it. But we were together for nine years and nine months. Bob was taking AZT on the Concord trial, becoming anaemic from AZT caused the stroke that killed him. It wasn’t HIV that killed him. Had he not taken the medication, he would probably still be alive. But we can’t know that for definite but we can know, you know, what the cause of death was. It was a time when what we were living through wasn’t unusual and when Bob died, you know, at three in the morning, twelve weeks after he died, I phoned Switchboard. And by some great timing, I know exactly who I spoke to [chuckles]. I spoke to Dee. But you know, at three o’clock in the morning, I was blubbing my eyes out and talking about Bob and she said, you know, ‘it’s only twelve weeks, that’s not long’.
Diana: So one of the particular people that I gave that support to was Richard. So, he called in and I gave him support and then I gave him support when he was a volunteer as well around his loss, and we’re still good friends now and it’s really nice to have carried that on from that time.
Richard: At the time, twelve weeks seemed like forever, you know, I hadn’t been without him for more than a few hours in nine years and nine months. Having been without him for the twelve weeks I felt like the end of the world but, Dee at Switchboard, was able to comfort me and say, ‘that isn’t long’. And she was right, we did move on, and all these years on, I can see it made perfect sense.
Diana: I suppose we just know each other on a different kind of level. When you've been through something like that with someone, it kind of takes your knowledge of that person and how you feel about them to a kind of slightly separate level. We're not in each other's pockets or anything, we live in different parts of the country but we can sit down and still just have a conversation as if it was yesterday rather than a year ago and Switchboard did that. It brought people together, it brought friends together. It brought circumstances and experiences together which is something I think is very rare.
Richard: It was, it was just a really strange time. But it taught me that I was capable of being loved and it taught me about being in relationships. If I am able to sustain relationships, and I think I proved that, it's because of the lesson Bob taught me. That it was ok to be completely honest all the time even if it was sometimes uncomfortable. Which is pretty clever coming from somebody who was seventeen at the time. And he’s been dead twenty seven years this year.
TW: It's great to hear how Dee, who is of course Diana, gave Richard support but it wasn't always that easy for switchboard volunteers.
AZ: Especially with the first wave of calls about HIV and AIDS. So here is a logbook entry from July 17th 1985 from a concerned volunteer about that.
SC: Large Pink highlighted item, ‘can we talk? It may take you a little while to read this but please take the time to do so. Last Thursday morning I had a call from a man who said, he’d just been that morning diagnosed as having AIDs and that he’d been told that he had about six months to live. The caller, John, was of course in one hell of a state; shocked, angry, terrified, suicidal. He was also well on the way to being absolutely pissed. John lives with his lover Alex. The first problem in the course of this call was to get through John’s despair. Lesbian and Gay Switchboard, can I help you? I very much doubt it. Next came how to tell Alex. This involved a long discussion about the nature of their relationship. How Alex was likely to react and how their relationship was to continue and what support was available. John said that in all he felt that it would be better if he was to kill himself than continue the relationship on a more or less platonic basis. If he has in his possession the drugs he says he had, he certainly had enough to kill himself. Because he works in the NHS, he has experience of how people with AIDS are treated by NHS staff, after all he is going to die in six months or so, so why not. In the end, John said he felt somewhat happier. I think I probably persuaded him to shelf the idea of suicide for seventy-two hours. However, I hope that he will be calling me tomorrow. I’ve never before taken a call that was so emotionally intense and draining. The last round of AIDS in-service training did not, in any way, prepare me for this call. This was a call which could only be dealt with by us. We are the only twenty-four-hour gay help organization in the country. It's not enough to say that T. H. T. have an emergency number. For such a caller getting in touch with T.H.T is admitting to themselves that they have AIDS. Therefore, they’re going to ask us for help and support, and we must be able to give it. What I want us to do is to organise ourselves into smallish groups, meeting on a regular or an ad hoc basis, in order to discuss our own feelings about AIDs, death, dying etc. And in order to offer support to each other. I'm sorry if this has seemed a bit woolly and ill-expressed. I'm still feeling upset. Opinions expressed here are mine and mine alone. Ideas, offers, help, solidarity please, Steve.
SC: This is a logbook entry from February 23rd, 1987. Regarding my anonymous note on page 123. I'd still like to hear from other antibody positive people in the organisation. So far two people have replied and we’re sort of thinking of meeting on a support group basis. Being antibody positive certainly has changed how I handle calls and how I see phone work. It's something I'd like to discuss further. If you're interested, drop me a line or phone me. I've decided to come out as antibody positive. I respect the right of others not to. Sorry about the wording, I just want to make it clear that if you get in touch, I won’t be gossiping, Steve.
SK: In a moment, we'll be looking at other aspects of AIDs and how serious the situation is in Britain and what are the symptoms, how do you get it and what progress is in the research field. But now we leave the studio and on film, we’re going to join [inaudible] who's talking to Bill Ayres, a computer engineer aged thirty seven, who has AIDs.
AZ: That's a clip from a TV show; Daytime Aids presented by Sarah Kennedy. HIV was such a private matter for those living with it, intensifying the fear. But in 1988, one person living with HIV started to break that stigma, by talking about it on the telly.
BA: And the state, it is not interested, it's shown no interest. I mean it waffles, but it shows no interest whatsoever does it?
Presenter: Do you understand the public fears that there are about AIDs?
BA: Of course, they know nothing. The state makes a dog's breakfast of everything it says about it. So it's not really surprising that they react and they’re scared out their box, so am I.
[Soft music plays]
TW: We spoke earlier about the guilt that people were feeling at this time but I think there’s also, there’s also a lot around judgement and not wanting to come out as being diagnosed HIV positive. But what was also going on around treatment at this time?
Az: Yeah it is very, very, different from where we are today with treatment. But actually, I'm going to hand over to Marc, because he was there and he's going to take you into the clinic with him.
Marc: So if you walked into a clinic in 1987. In the first few years when I was diagnosed, the clinic I was diagnosed in was a VD clinic, venereal diseases, and you walked down the back of the hospital, down the car park, through patient records and you knocked on a door, and it was women on one side and men on the other, and it was completely segregated and it felt really shameful to go there and it was at Westminster Hospital. And I went there for a good two to three years, and I didn't really think anything of it, I mean I didn't think it was a deep and dark and shameful place, but it certainly felt, it certainly was that. The service was also exemplary, you know, people really cared. You’d see a doctor, you’d see a nurse, you’d see a health advisor. It was all very contained and the health care was really good. What was also really good is because people were becoming, you know, getting HIV, AIDS related illnesses, you know, long-term and dying, there was also a range of services wrapped around that, so dieticians were available, dental care, osteopaths, you know, opticians, there was a whole range of services that I could access as a positive man. That was amazing and I would basically get my lymph nodes felt under my arms, get my weight checked. I was asked about you, know my symptoms, but the only symptoms I got were night sweats. And I would always be concerned about my weight, because I’m a really small guy. So, and I had a really high metabolism as well. So that always used to worry me, so I’d get like nutritional shakes, and vitamins, I’m going loaded up with shit which was great. Then CD4 cell tests were introduced so I’d get my bloods done, and that was interesting because then you're going, ‘okay so I can monitor this now’, and that plays with your mind a bit because it’s a numbers game, ‘oh is it up? Is it down? Is it up? Is it down?’.
GH: I tried to develop this concept of what I call, ‘Sleeping Dragon’. That one; I had to accept that this virus was not going to go away. Two: that I had to learn to coexist somehow with it because it was part of me, whether I liked it or not. Hello, my name is George Hodson, I am a seventy-one year, out, proud, fairy, queer who's lived with HIV and been blessed to survive for thirty five years. So, I spend an awful lot of time physically, mentally, spiritually finding coping strategies and things that would keep sleeping dragon asleep. I mean I used to want to cut myself to self-harm and then I started doing, ah I’d cut up bits of paper, make collages you know. I've always tried to deflect and find some creative way and I think creativity is really important because I could see people around me with certain personality traits, the dragon waking and gobbling them up really quickly. So, and up until now, my life’s work has been surviving and learning coping strategies that will keep HIV/sleeping dragon asleep and I wanted to find a metaphor for surviving, which is a universal really for everybody, you know, keeping life simple, avoiding stress, looking after your body, looking after your spirit, keeping absorbed with interests and things that keep you away from thinking about HIV, AIDS and death all the time. I remember one day I was at the London Lighthouse and we bought a billboard in High Street Ken and it said, ‘I'm HIV, stop ignoring me’ and I sat on a chair in front of it, you know this is in the days when, it was like, you were lepers and people threw stuff at me, shouted at me, you know. But I felt so wonderful to be able to do it and that's when activism was another form of not wallowing in the fact that you might be dead tomorrow.
TW: I just can't get that image of George sat there, having things thrown at him, but just sitting so proudly.
AZ: Exactly it's such a positive image, isn't it? You know like, just sitting up there on a deck chair, in this big traffic junction saying like, ‘look I'm HIV positive, sod you, you know’.
TW: Yeah, it's so amazing he's so unafraid, unashamed.
AZ: We've got plenty more from George again and, but also, Dr Jane Anderson. HIV and AIDS shook up so many things at this time, including how the medical profession worked with patients so here’s some stories from George and Jane about that.
GH: We worked with first name professors, we worked together, because they knew we knew as much as they knew and so in the initial days, there was an incredible new concept of patient power and parity between us, because we were both learning as we went along. You know the whole person was dealt with, you just didn't bother about the physical, it was the psychological effect, the housing, so many of us went out of housing, welfare benefits everything was dealt with which is how it always should be and it was for a few years and then that slowly disappeared.
JA: There was something about HIV and AIDs that was urgent, became a call for action and people rallied. y name is Jane Anderson, I'm a doctor, and I specialise in HIV infection. So I qualified on the 1st of August, 1984. I started my first job as a doctor, and my first day on call was being on call for the AIDs ward at St Mary’s Hospital. I have a memory of some early peer support people and they were the early people who are setting up the Terrence Higgins Trust, who'd come to visit and would invariably be firm about, saying well, ‘what do you know? What are you doing about X? And why not Y?’. And again, for that me, that was the first time I really met that level of expertise in a community setting as opposed to within my medical practice, and I can almost visualise being in that particular room on that particular ward with two very firm, very clear, very polite but definitely rigorous people who were supporting patients. So, I started working at St Bartholomew’s Hospital in 1990 as a new consultant charged with the task of setting up an HIV service, and at that time Barts, and Homerton Hospital in Hackney were very closely linked so I was working across the two. And my task was to start something actually from the ground upwards. There had been patients at Barts with AIDS and HIV and the same at Homerton but not in a particularly structured way and so the request was to set up a service. That was a really pivotal moment actually because when I started, there wasn't very much space, there were no really designated consulting rooms and I didn't have space designated to work out of. And I saw a patient then who was part of Act Up London. He showed me just a whole different way of working because he said he didn’t think that the working conditions that I had were suitable and I assumed that he meant they weren't suitable for his care, and I said, ‘no, no, it's safe, it's fine’ and he said, ‘no, it's not right that you and your team aren’t working in a proper environment. This isn't being taken seriously enough by the bosses in the hospital. I think I should get in touch with somebody’. And I think I'd been in role for about three weeks and was feeling my way, and was like, ‘yeah, you know, I'm sure it'll get easier’. And he said ‘ok well, let's see how it goes but if it doesn't get better then we should make a fuss about it'. And he actually at that point I think Act Up London were, there were a lot of protests happening around that time and there people chaining themselves to things and he said, ‘well we could bring a group, we could do, make some sort of protest about the conditions for AIDS work here’. Barts, there’s a big fountain in the middle of the square, it's a very iconic fountain, and he said, ‘well we could do something with the fountain, a group of us, I’m sure we could do something with the fountain’. Which again, as a visual idea, is very powerful, and I sort of thought, ‘Woah, well hang on, hang on, we've just to just to take this slowly’. But the thing that it showed me then, was that this is about, we're all in this together and I've got the most amazing support.
TV Show: There is now a danger, that has become a threat to us all. It is a deadly disease and there is no known cure. The virus can be passed . . .[fades out].
JA: The government campaign of 1987, the tombstones, the icebergs, the lilies was incredibly powerful.
TV Show: . . . confined to small groups but it’s spreading. So, protect yourself . . .
JA: And for those of us working in the field at the time, I think it felt very timely that the urgency that we were all feeling on the frontline was actually being picked up by government, and they were really trying to get the message home to everybody. Now in retrospect, did it cause unnecessary alarm? I think we have to say that people were doing the very best they could with the knowledge we had and I think there are some real parallels now with COVID, at what point do you sound alarm bells? At what point do you try and go steady? And from my perspective, the 1987 government campaign brought attention to something that we all felt was incredibly urgent and incredibly important and I think we were pleased to see, I should take ownership of this, I certainly was pleased to see the government really trying to bring it to everybody’s attention.
TW: What Jane is talking about is the ‘Don't Die of Ignorance’ public health campaign by the government which included a TV advert plus a leaflet that landed on every single door mat in the country, including Catherine Leighs.
CL: I remember the ‘Don't Die of Ignorance’ advertising campaign. I remember us being in halls of residence when I was training to be a PE teacher and us all having the leaflet slipped under our doors and feeling quite frightened. Again, not knowing that this was something that was actually, as far sexual activity was concerned, was low risk for lesbians but again, feeling fear from a personal, on a personal level, that it was actually a gay disease.
Unknown: And I can remember at the time, I was very aware of my, sort of teenage son, being completely obsessed about washing and all the things he was hearing, similar to the pandemic that's going on now, that there were germs everywhere and somehow it would affect him, and I think that had a lot of effect, not just on gay people but on the whole of society. That, that fear of germs, which I'm seeing now in grandchildren and my sisters’ grandchildren, because they're frightened of life, which is very sad. I think that at that time, because there was so much fear about, just like today, I'm sure that John did worry about the people that were in our, you know, immediate circle and about how that would affect us and affect him, you know, it was a fearful time. I think it was very much connected with his sex education at school because I think I got a call saying that he’d had this reaction to being [laughs] told about such things and it was all back to AIDS.
MT: And I remember going to the cinema with some friends to see, I think it might be, I can’t remember what it was but it was a big film that had come out, it was in the West End and they showed the Tombstone Ad, with the big AIDS tomb, you know there was, blah blah blah advert shown and just freezing, freezing up in there because I’m like, this is me their talking about and that came out just after I’d had my diagnosis. I’m Marc Thompson, I'm fifty-one and I was diagnosed HIV positive in 1986. In fact, I must try to remember the film, I must try to remember the film, because it was aliens, but I really remember it being shown at the cinema before, you know, a movie. I mean it's mass media right, I mean, and this is the time when people are going to the movies. There is no Netflix, there is no video, you’re at home, so. Friday night, big late-night cinema was a thing, and so to show an advert like that there, in the cinema, powerful, amazing, do you know what I mean? I mean yes, sure, if we could turn back time, I’d do the advert, well not me, but I’d want the advert done differently, but, you know, it took a sledgehammer to crack a nut and that's what they were trying to do.
Unknown: You know not everybody was watching the tombstone adverts and even the people who were, were getting the wrong end of the stick. We got so many worried well calls and particularly after Switchboard's phone number went out in a leaflet for the ‘Don't Die of Ignorance’ campaign.
TW: And that leaflet which landed on every single doormat in the country, featured Switchboards number, which we didn't find out until days before, from Health Minister at the time, Norman Fowler.
AZ: And I actually found an old article in Capital Gay, from Friday the 9th of January 1987, and it's written by Tony Whitehead, who listeners of The Log Books podcasts have heard several stories from. And he says you know, last year, 1986, was the year of AIDS. In one way or another it grabbed the headlines and stayed there. This year, 1987, will be a little bit different and one reason is, because of this leaflet and this public health campaign.
TW: It was the, you know, 1987, ‘Don’t Die of Ignorance’ campaign, which was a trifold leaflet, A4, with Switchboard’s number across the back. The results, Switchboard said, you know, two hundred seventy five thousand calls we got in the next year, you know, two hundred thousand of them were from, you know, definitely heterosexual worried well. And we were calming their fears, calming their fears and telling them, you know, actually there was very little to be frightened of unless you had done ‘X or Y or Z’, from the information that we had at the time. And of course the leaflet was sent to every household in the country, so it was something like twelve or thirteen million leaflets that arrived on everybody’s, through everybody's letterbox.
Unknown: A couple of years back, I actually sat down with Norman Fowler who, who I now count as a friend which, who would have thought that back in the mid-eighties? I sat down with him and I said, ‘did you realise when you put that leaflet out, you were giving every single household in the country, where there was someone in the closet or questioning their sexuality, the one phone number that they could call twenty four hours a day, not just to talk about AIDS but to talk about their sexuality?’ and he sort of went a little bit pink and he went, ‘well no, we didn't think about at the time, obviously’, because obviously if they had, they might not have done it. I said, ‘you're responsible for a vast number of people coming out and finding themselves’, and he was rather pleased with himself, because he’s very, very pro-LGBT+ now. His desk has a rainbow flag on it for us and everything.
TW: We’ve been talking about the ‘Don’t Die of Ignorance’ campaign in today's episode, about diagnosis and about treatment and we wanted to reflect on that today, so we went and spoke to Dr Tristan Barber, who is a consultant in HIV medicine but who, more importantly, you should remember from season one.
Dr TB: So thinking about someone who was diagnosed in 1985, obviously there are life threatening implications of an HIV diagnosis and uncertainty about what will happen in terms of treatments, whether the treatment will be available and whether it will be effective. Someone in 2020 who’s diagnosed, could be put on treatment within twenty four, forty eight hours and know that within four to eight weeks they'll be undetectable, treatment will be very well tolerated and they can have a normal life expectancy, so it's really been a huge shift. My name is Tristan Barber, I am an HIV clinician working at the Royal Free Hospital in London and I've been working in HIV since 2002. In terms of a lot of MSM (men who have sex with men), or gay men being diagnosed at an early stage of infection, I saw someone last week who had been picked up in A&E, who was probably zero converting, who saw me very quickly and was put on treatment probably within ten days of infection. We still have some ingrained differences in the way that we reach other populations, including Black African populations, including transgender populations, and trying to get across those messages to those groups, and so we've seen this split and then we have often heterosexual populations, White and Not-White, who for some reason don't see the prevention and the testing messages, may have missed opportunities to test and may be diagnosed at quite a late stage of infection, with consequences subsequent to that, sometimes even being admitted to hospital with AIDS defining illnesses, which in 2020, feels like a real shame. So the aim of modern HIV treatment is to suppress the levels of viral replication in someone's blood to a level called ‘undetectable’. This is just the limits of the tests so, conventionally, this was seen as less than fifty viral copies per millilitre of blood. Some modern tests will go down to forty or twenty copies, but essentially, it's less than fifty. Being ‘undetectable’ means the virus is at such a low level that it can’t cause harm to your immune system. They may still be at slightly increased risk of some types of cancer and of TB or tuberculosis, but overall, they have a very, very normal life expectancy and can look forward to a healthy future. Being undetectable also means they cannot transmit HIV to their sexual partners. So what has changed dramatically is the lived experience of someone who's diagnosed after, let's say, 2005 or 2015 compared to people that were diagnosed in 1985 or perhaps even 1995. I really think now, if you're diagnosed, you go onto treatment usually very quickly, with a normal or near to normal life expectancy. So, today one of the options we have for HIV prevention is called ‘PrEP’ or pre-exposure prophylaxis. PrEP represents two HIV medicines combined into a single tablet. The single tablet can be taken every day, or for men who have sex with men, they can take what's called event-based PrEP, so they take PrEP only around the time of sex if sex is predictable. For heterosexuals, for women, PrEP needs to be taken daily, event-based PrEP doesn't work, and this has to do with the levels of the medicines that make it into different genital compartments for prevention, so different genital areas. So if you're taking PrEP effectively, any type of sexual act means that you are free from the risk of HIV transmission. This means if you're a gay man you can have unprotected anal sex. If you're a woman you can have receptive vaginal or anal sex. If you're transgender you can have the type of sex that you choose to have, knowing that you are protected against HIV infection. PrEP does not protect against other types of sexually transmitted infections so that has to be borne in mind, it doesn't protect against gonorrhoea and syphilis, against herpes or against sexually transmitted hepatitis for example. In terms of sexual behaviour, I was quite amazed when I started working in PrEP services about the diversity of people that came forward for PrEP. I think I had my own assumptions about, maybe it being a younger group of people who might have just moved, say to London, and were navigating their sexual way around a new city, but in actual fact it's been a game changer for people who are older as well, some of whom have had twenty, thirty years maybe, of being terrified of sex, of being terrified of acquiring HIV, some of whom are old enough to have seen people die from HIV and the complications of AIDS. And for these people it really has been life changing, in terms of them feeling free to explore their sexuality, to have sex with others, and not put themselves at risk of, what they still perceive, is a life-threatening infection. So psychological happiness with sexual activity has certainly gone up dramatically. For many people, a cure remains a tremendously important thing to hope for. The discussions we often have are about the difference between a so called ‘functional cure’, which means that the type of treatment you could have, that would mean you could then stop your tablets and the virus would not recur, or a ‘sterilising cure’, which means we would get HIV out of every single cell and hiding place in your body that it was in. I think most of us think that a functional cure is something that is may be possible, by stimulating the immune system in some way, but a sterilising cure is probably much more difficult, because HIV is very clever and can hide in your own DNA and so, those are the kind of discussions we have with people currently. So I think as we look forward things are tremendously optimistic. I think I've got about twenty years left to work in my career, maybe a little bit more, and I think they'll probably be enough work in HIV for me to see that career through. Our aim is to see no new transmissions by 2030, and if we do that, we will still have a very important duty of care to those people who are diagnosed, particularly those who have been diagnosed for a long time who will continue to need specialised management. But my sincere hope is that in my working lifetime, I see the end of HIV transmissions and the end of new HIV diagnoses in the U. K.
AZ: Our next episode will be the final of our three episodes in this season, on HIV AIDS.
TW: And it’s going to focus on how the epidemic gave rise to more discrimination and hostility against the LGBTQ+ communities.
AZ: And we will also have a conclusion to the story of the Switchboard volunteer who was looking for other HIV positive volunteers to talk to.
AZ: Calls to Switchboard are confidential so to bring The Log Books to life, we’ve changed the callers names. The Log Books is produced by Shivani Dave, Tash Walker and Adam Zmith, in partnership with Switchboard, the LGBT+ helpline.
TW: If you think other people would like The Log Books, please rate and review us on Apple Podcasts. These ratings and reviews really help others to discover the show. You can send us your feedback, and stories to firstname.lastname@example.org or join the conversation on social media with the hashtag, #TheLogBooks.
AZ: Our music is by Tom Foskett-Barnes and our artwork is by Natalie Doto.
TW: Thanks to; Stef Dickers and team at the Bishopsgate Institute . .
AZ: The BFI National Archive . .
TW: The folks at Acast . .
AZ: MACE; the Media Archive for Central England . .
TW: Peter Zacaroli at West Digital . .
AZ: Content is Queen . .
TW: The staff and volunteers at Switchboard . . .
AZ: And all the contributors who shared their stories.
TW: Switchboard continues to take phone calls from 10am to 10pm every day. If you’re affected by any of the issues in this podcast, or need to discuss anything to do with your gender identity or sexuality, you can call Switchboard on 0300 330 0630, email email@example.com or instant message via switchboard.lgbt, where you can also donate money, or time to help.