The Young People’s Discussion Of HIV: A Review

HIV isn’t just something you talk about when you’re HIV positive. Beginning an open and honest communication about the subject seems the first step in upping our game as a community against new infections.

By Patrick Cash

HIV exists, some people (some friends) are positive, and whether positive or negative we are all in a battle together against the virus itself. That’s why last week QX assembled a panel of young drag queens, DJs and porn stars from our glittering gay scene to talk about HIV.

Part of 56 Dean Street’s awesome gay men’s wellbeing programme, we actually ran into a particular difficulty before the event began. One member of our panel messaged us in a nice but worried way, saying our widespread pre-promotion was making people contact him asking if he had HIV. He didn’t, and he wanted that to be known. Perhaps this illustrates more pertinently than any other scenario how little HIV is discussed openly amongst gay men; that to even speak it is to be ‘tarred’ with its brush.

“If people assumed that I had HIV because I was writing about the issue, what did it really matter?”
Patrick Cash

I have to admit, I’ve been in this situation myself before. When I interviewed five gay men living with HIV last year, the feature was entitled ‘Me, My Life & HIV’. When the article was shared over social media, it did the rounds as ‘‘Me, My Life & HIV’ by Patrick Cash’, inviting old flames (read: East Bloc & Grindr shags) to get in contact questioning whether I was positive. I began to feel like I should post a disclaimer status, distancing myself from that headline.

But that would have been surrendering to the stigma surrounding HIV. If people assumed that I had HIV because I was writing about the issue, what did it really matter? Breaking down the perceived division between negative/positive statuses seems important. Therefore we told our panel that they didn’t have to disclose their own statuses if they didn’t want to, we wanted more their experience as very active members of the London gay scene

It still took a lot of balls. Before a packed auditorium of both health care professionals and curious young gay guys, we invited DJ/club promoter Mark-Ashley Dupé, DJ Maximus Crown, drag queen Baga Chipz and porn star Kayden Gray. We began talking about how they thought HIV was perceived on the youth-lead gay scene. The uniform consensus was that it wasn’t spoken about, especially when you’re fresh on the scene: ‘Everyone’s aware of it, I’m not sure everyone’s aware how they catch it. Or being able to speak about it to their friends if they do have it… It’s still a taboo subject,’ said Mark. Maximus added: ‘It’s a bit like Christmas, no one talks about it until it’s round the corner.’

‘The gay scene is about fun, first and foremost,’ said Kayden. ‘So for a lot of people the subject of sexually transmitted diseases doesn’t even come up in conversation. A lot of people, 18, 19, 20, still think you catch HIV, you get AIDS and you die.’

‘ When you’re young and you first come on the scene, like a lot of gay lads at school are quite repressed and bullied and then we come out they just want to get a bit of cock, don’t they?’ said Baga, dressed in full drag. ‘ They’re like ‘ooh, I want to go clubbing and get a bit’ and when you do clubbing, you’re not going to go up to someone and the first thing you say is ‘have you got HIV?’ .’ But does that lack of communication add to the thought that HIV is not something that seriously affects us? The panel thought so, although Mark suggested lack of awareness might have an earlier origin.

‘You would have thought HIV would have been one of the main topics you speak about in school. Up until I was about 20, HIV was like the boogie man, I knew about it but I was petrified of it,’ he said. ‘It was really quite bad, but because there was nobody I felt I could really go to and speak about it. There were no elders. Obviously I had parents, but I don’t even think my Mum and Dad really know that much about HIV, they more know about the AIDS dilemma that went down in the 80s. And to them if you’re gay, you’re gonna turn grey and get lesions and die within a few weeks and then that’s it.’

All the panel agreed on this point surrounding the lack of statutory education on HIV, relating to the current campaign headed by QX editor Cliff Joannou to make age-appropriate same-sex SRE (sexual and relationship education) statutory in schools. ‘In schools not much is talked about gay sex, let alone HIV,’ said Maximus. ‘You’re told sex is between a man and a woman, if you don’t want to get pregnant use a condom and that’s the end of it.’

Maximus mentioned how all the information on HIV he knew he’d had to deliberately source out himself, which brought us onto the topic of the prevention campaigns and individual responsibility. Did we think the prevention campaigns are effective? Kayden ventured that they were getting better but a particular point that came up pan-panel (as it were), was that one element was more important than others: language.

‘In the past when you heard jargon, there was a person who didn’t understand what we were talking about here, because it all sounds like it doesn’t affect you,’ said Kayden. ‘Words like ‘arse’ and ‘dick’ actually make sense to a lot of poeple.’ Baga agreed, saying: ‘it’s like when you said with the cum up the arse and all that, I understood.’ This drew not only an appreciative laugh from the audience, but also a consensus of agreement from the panel. It’s not only boring to see long, ‘correct’, science textbook words used, it’s potentially exclusionary to the very group the campaigns are trying to reach. ‘ I know that some people like to believe that they’re not common,’ said Mark, ‘but it is arse, dick, cock, tits… I feel if you’re gonna do a campaign you should definitely use words that our gay community are using.’

When asked their favourite method of HIV prevention, all the panellists said condom, but most admitted they weren’t perfect with their use. Mark told an affecting story of how he found out the most about HIV from his four-year relationship with a positive guy he began at age 21. ‘ To be honest, we didn’t really have that much sex because he felt dirty and didn’t feel clean and he didn’t want be to become ‘dirty’,’ he said. ‘ With my ex, his responsible part of the brain would come back in and he’d be like you’ve got to go to the clinic and he’d take me to the clinic for PEP, but it’s because of him why I’m actually sitting here. Because he opened up my eyes to so much and made me change my perception on how you do look at somebody with HIV. There’s a stereotype for every type of person in the world and I feel the stereotype for someone with HIV is definitely not true. Anybody could catch it, you could look like anybody, you could have any type of job.’

PEP, standing for post-exposure prophylaxis, is a mixture of medications that might stop HIV taking hold in your body if you’ve been exposed to the virus. It has to be taken within three days of you feeling you’ve been at risk, and is a month long course. I asked the panel if they thought enough young people knew about PEP, which is available free from sexual health clinics like 56 Dean Street, and they replied they didn’t think so. So how do we get this information out there in a constructive way?

‘ I think part of the problem as well is that people who are diagnosed don’t talk about it because they are scared of being rejected and because people aren’t talking about it it means that nobody else actually knows that’s going,’ said Maximus.  Kayden added: ‘If you open your mind up, there will be no stigma. But I think there’s a lot of fear and that’s what causes it. People are scared of what they don’t know anything about.’

This introduction of stigma against HIV positive people, where they may not be as accepted by HIV negative gay men on the scene, moved Maximus to talk about his own diagnosis:

‘ I haven’t found any stigma but that’s because I’m a really scary person. It’s one of those, like, ‘I dare you to say something’ situations,’ he said. ‘But I was putting on a front ‘I’m fierce and I’m fabulous, I don’t care if I’ve got HIV’ and that fear of rejection was always there. But then I realised that people aren’t dumb, have a little bit more faith in humanity. You kind of realise that all you have to do is talk about it.’

Low self-esteem was an ache in all the panellists’ balls, and body image issues, and chems were mentioned as reasons for patchy condom use amongst gay men. Baga mentioned how a lot of her friends on the drag scene were from the 1980s and had lived through their friends dying from AIDS, and hearing those stories had an effect of power on her. ‘It would be disrespectful, to just go around shagging without condoms, knowing that,’ she said. An audience member ventured that greater intergenerational dialogue on the gay scene was needed.

But condoms themselves also came under fire, ‘rubber is used to connect cars with the road,’ said Maximus, which lead us on to the fiercest debate of the evening: PrEP.

PrEP is the taking of a daily pill named Truvada that could protect you from HIV, even if you’re not using condoms. Two of 56 Dean Street’s excellent medical experts, Dr Alan McOwan and Professor Sheena McCormack, had told us about it earlier in the evening. A fierce debate sparked up and raged through the audience like wildfire: for people get very passionate about PrEP. On one side of the park, there are those who know condoms aren’t working and welcome the new advent of prevention with relief and open arms; on the other side, those who have advocated condoms as protection for years, see it as a concession of personal responsibility. There is also the problem of cost, would the NHS license it? It would cost £400 a month to put people on PrEP.

Overall though, from the entire discussion, what cropped up repeatedly like a ball bounced from a wall was this issue of communication. We need to be speaking about HIV more, the panel agreed. And above communication, there was the idea of community, a community that takes its sexual health seriously together as well as individually.

What was identified as leading the way in providing this sense of community, was the organiser of this event itself, 56 Dean Street. ‘I could spend the whole day in the Dean Street clinics,’ said Mark. ‘You’ve got your free wi-fi, your coffee and tea etc. And you can talk with the advisors about your sex life. You just come out feeling happier.’

Dean Street is leading the way by example but now the onus falls on us as gay men. Let’s start talking, young and old: about HIV, and about ourselves.

• The Young People’s Discussion of HIV was assembled by QX as part of Soho sexual health clinic 56 Dean Street’s Gay Men’s Wellbeing Programme, sponsored by the Monument Trust.

56 Dean Street, W1D 6AQ

www.sfct.org.uk/the-monument-trust/

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