The shock of HIV has changed us and society

This article comes from the Journal of Holistic Healthcare, published by the British Holistic Medical Association. You can download our free journals and other resources at: bhma.org

The AIDS epidemic, perhaps particularly in the UK, changed society’s attitudes for ever. Gay men suddenly became visible, and conversations about sex and sexuality were increasingly unavoidable. Over time, rejection changed to sympathy and eventually a certain kind of solidarity. A brief 35 years later we have marriage equality. The speed of social change has been immense but for the gay community – and others – life is still lived in a precarious balance.

As a documentary director working in television you don’t always get to make programmes you have a personal connection to. With tenacity and a degree of luck you can manoeuvre yourself towards things you feel are worthwhile, and you find ways of caring about them. But it doesn’t always feel personal. So, as a gay man, when I was approached by a production company with some seed funding from the Wellcome Trust to develop a film about the early years of the AIDS epidemic in the UK I leapt at the opportunity. Three years later, and scheduled to coincide with the 50th anniversary of the partial decriminalisation of male homo - sexuality in England and Wales, Epidemic: When Britain Fought AIDS went out on Channel 4.

I was born in 1981 – a year before the first case of AIDS was recorded in the UK. In 1996 when combined anti-retroviral therapy first became available (people called it ‘the Lazarus effect’ – patients literally got up and walked) I was only 15. Treatment improved dramatically from that point onwards.

Given, then, that I dodged the most horrific years of the epidemic by accident of birth, why did I want to make this film? Until now I hadn’t asked myself that question. In writing this piece I’ve done so for the first time. The answer is surprisingly conflicted.

On the one hand there’s celebration. As a teenager and young adult, despite the fact that I had little explicit knowledge of the AIDS epidemic or queer history (it doesn’t tend to be taught in schools) I had a vague feeling of indebtedness to the gay rights activists who’d come before me. I sensed that the rights and freedoms I could enjoy – to be honest about my sexuality and, from 2004, to have a relationship acknowledged by law – were thanks to their brave work.

At the same time, even decades after decriminalisation, the world I grew up in was quite clearly far from accepting towards gay people. At school and with family, homosexuality felt like a taboo. When, infrequently, it was discussed it was ‘them’ doing it, not ‘us’. And ‘they’ were odd creatures. I wasn’t ‘out’ at school, but I was frequently bullied with the word ‘gay’ (or worse) for being more effeminate than the other boys. ‘Gay’ was – and often still is – a term of abuse in the playground. Talking to gay friends today I know my experiences were not unusual.

Contradictory feelings, then. I wanted to celebrate progress I wouldn’t care nearly so much about had I not been politicised by my experiences as a gay teenager in the ‘90s! I felt that in making a film about the AIDS epidemic I could acknowledge what I wouldn’t dispute have been massive steps forward, while at the same time hammering home the wrongs of the recent past lest they happen again.

How far, then, have we come? How different is the world of 2017 to 1997 when I turned 16, or the early ’80s when AIDS arrived in Britain? My answers here are unapologetically personal.

I had a vague feeling of indebtedness to the gay rights activists who’d come before me.

Rupert Whitaker’s is the earliest of many stories whose brutality shocked and moved me. By summer 1982, and a student at Durham University, he’d been in a relationship with the charismatic Terrence Higgins for a year. When Higgins collapsed at the London nightclub, Heaven, and was rushed into hospital with a mysterious illness, Whitaker’s life was turned upside down. Higgins, like other early AIDS patients, was kept in isolation – a technique called ‘barrier nursing’. Whitaker was allowed to see him only through a glass window. Physicians would not consult Whitaker about his partner’s condition. In a world where gay relationships were considered unacceptable by the mainstream – and where equal marriage was unimaginable – partners had no rights. When Higgins died in July 1982, doctors refused to tell Whitaker the cause of death. Instead, they advised him to read the autopsy report, soon to be published in a medical journal. Whitaker’s grief at losing his partner was compounded by the feeling of being completely disregarded. His relationship – his love – didn’t matter. In the eyes of the medical establishment he didn’t even exist. Unfortunately, stories like Whitaker’s aren’t hard to come by. Jonathan Blake, one of Britain’s longest surviving AIDS patients, told me that when he was first admitted to hospital it was no surprise that he got ushered into a side room. Even in 1982 – before the hysteria set in – gay men were treated as ‘other’.

When Higgins died in July 1982, doctors refused to tell [his partner] the cause of death.

Soon, with the epidemic in the United States gathering pace, reports of the ‘gay plague’ became more common in the news in Britain. LGBT activist Lisa Power – a determined, passionate woman who has developed a dark sense of humour (one senses out of necessity) – told me, ‘It was the perfect mix. Strange kinds of sex, strange kinds of people, a disease that nobody could cure. You couldn’t make up a better plot for fear if you tried’. Then she remembered, ‘oh and junkies too! And sex workers! All the bad people…’

Like the disease, the story went viral. According to many of the doctors I interviewed, the news reports had a direct impact on patients’ experiences in hospital. Ian Weller, who began his career as a liver specialist at the Royal Free Hospital, London, is a gentle, caring, softly-spoken man. He told a story that had evidently etched itself onto his mind and is now irrevocably in mine. He was sitting on a patient’s bed talking to him – in a side room. The door opened and he saw a tray of food slide along the floor towards the bed. Then the door slammed shut again. He later discovered it was a staff member scared to enter the room of an AIDS patient. Weller described to me nights where he wouldn’t get home until the early hours of the morning because they’d struggled for hours to find an undertaker to take the bodies away.

Weller was just one of a trio of courageous, progressive medics I was lucky enough to interview for the film. In 1982 Michael Adler was a professor of what was then called genito-urinary medicine at the Middlesex Hospital in London. He told me: ‘I would like to say about myself, “Oh yes, that’s really exciting, I’m going to get in there and I’m going to help”. It wasn’t like that, actually. I mean, we just happened to be there, and it came and found us!’

Weller was being modest. In the early years there was no specialism for AIDS or HIV – HIV hadn’t been discovered, and at the very beginning the disease was called GRID, Gay Related Immune Deficiency. So doctors whose specialisms made them helpful in its treatment were lumbered with it. People like Adler, Weller and Tony Pinching, then an immunologist at St Mary’s Hospital, didn’t have to throw themselves in as wholeheartedly as they did. Certainly at the beginning, it didn’t make them popular with their institutions. A doctor I met during research told me his clinical director pulled him to one side and said: ‘You know these people coming into the hospital are rather unpleasant, they’re all infected. I would discourage you from having them in here, it’s giving this hospital a bad name.’

Along with others of their peers, these doctors joined the patients in battle. Holed up inside the wards, and facing a common enemy outside, something very special began to happen. All the doctors I interviewed talked about a flattening of the relationship between the doctor and the patient. They were dealing with young people on the brink of death, surrounded by an increasingly politicised community. Sometimes, particularly in the early days, the patients had read thoroughly the few reports coming out of the US, and they knew more than the doctors. Tony Pinching began to well up when he talked about his patients’ generosity in the early years. ‘These were people with life expectancies of nine months or so, and they were telling us everything they could so we could put it into the scientific machine and learn more about this disease… These were ordinary people doing extraordinary things.’

It’s worth noting that the common enemy they were battling seemed to combine both the disease and the homophobic attitudes it brought to the surface. I have wondered since whether this dynamic – engaged, politicised patients and respectful medics working together – could be created outside the battlefield. Either way, in this instance it didn’t last all that long. As medical expertise grew, the traditional hierarchy began to re-emerge – although on both sides, lives and perspectives had changed.

As medical expertise grew, the traditional hierarchy began to re-emerge…

The thrusting together of patients and doctors during the early years of the epidemic serves as a microcosm for what happened in the country as a whole. By making gay men visible, society had to come to terms with their existence. Rupert Whitaker – now a prominent psychiatrist, immunologist and specialist in HIV and AIDS – gets the last word in my film, and he puts it better than I could. ‘My view is that if we hadn’t had AIDS we wouldn’t have marriage equality today… I think that one of the reasons that we have marriage equality, is because we are seen as people who love each other. That we can have actual real relationships, and those relationships are now recognised. So, if, for instance, I had a partner now who was dying in hospital, I would be his next of kin, I would be his family.’

He’s right. The social change over the 35 years since Rupert lost his partner Terry has been immense. How far, then, do we still have to go?

As a sexually active gay man living in 21st century London I know to go for an STI test every three to six months. When I do, I receive exemplary service from the very gay-friendly Dean Street Express, a clinic in Soho that provides outreach services, too, in the local bars and gyms. It’s a mechanised system – a computerised check-in with touch-screen monitors – and you’re seen by a clinician who’s often pushed for time. But they’re friendly and non-judgemental. You get asked questions such as, ‘Are you into, fisting, barebacking, chemsex etc.’ This is a scenario where straight-talking about gay sex serves a clear public health benefit. It would have been unimaginable 30 years ago.

As a side-note, I often think that my gay male friends are far better informed about the risks of STIs – and what can be done to prevent them – than the straight ones. In fact, I can’t remember a straight friend telling me they’ve been for an STI test.

But as a middle class man working in the media in London I live a comparatively charmed life. Dean Street is wonderful, and unique in the UK. I would imagine a routine STI test in many places elsewhere in the country would be an obstacle course of awkwardness and judgement. Friends tell me stories about going to the GP with a rash, and on saying they’re gay being sent for an STI test – regardless of the fact they insist they’re in a monogamous relationship with a healthy partner. Perhaps the GP is following protocol, but it’s easy to come away with the feeling of being mistrusted, or of being judged.

Given that we will always be in the minority, it’s possible there will always be work to do.

And even in London in 2017, in the days of equal marriage and relatively frequent and positive representation of LGBT people on television, I don’t think things are okay. I can’t walk down the street holding hands with another man without fear of being called a ‘batty boy’ or worse. Regularly (every few months) I’ve been abused on the street. Not everyone experiences this. It’s more likely to happen if you show affection in public, and if you look less masculine. It’s about gender policing as much as sexuality. In fact, homophobic abuse is often directed towards straight people who don’t fit the mould. Perhaps non-traditional gender presentation is now a bigger taboo than non-traditional sexuality. A trans woman I spoke to recently said she felt that for her community things are roughly where they were for gay men 30 years ago.

When it comes to LGBT people in Britain, then, our situation is varied, complicated and hangs in a delicate balance. Things are so much better, but there is work still to do. And given that we will always be in the minority, it’s possible there will always be work to do. Which is why I felt strongly I wanted to end my film with a call to continued action from someone who speaks for another minority entirely, Martin Luther King: ‘Our lives begin to end the day we become silent about things that matter.’

In this article I’ve talked about one ‘thing’ that matters – the shifting position of LGBT people over the last 30 or so years. There are many other ‘things’ that matter, and it’s time to make some noise about them too.

By James House, Documentary Film Director

As a non-medic, my knowledge of healthcare (such as it is) has been gleaned through filming in the NHS, as a patient, and as the son of committed, lifelong GP William House. Recently I directed Epidemic: When Britain Fought AIDS for Channel 4, a film that told the story of the early years of the AIDS epidemic in this country and the (successful) fight to get central government to take action. The experience of making that film inspired this article.

This article comes from the Journal of Holistic Healthcare, published by the British Holistic Medical Association. You can download our free journals and other resources at: bhma.org© Journal of holistic healthcare ● Volume 14 Issue 3 Autumn 2017