by Paul Burston
PWAs get big benefits, free drugs and plenty of attitude
Simon Edge didn’t march in last year’s Gay Pride celebration in London. Six months earlier, his lover, Tony Bird, was rushed to the hospital with a chest infection. It turned out to be PCP; Bird hadn’t even known he was HIV positive. By the time Pride came around, Bird was too sick to even consider marching. Edge was sick, too—sick of friends not knowing what to say when they discovered his lover had AIDS, sick of them always changing the subject. In a piece published in The Guardian, a national newspaper, a few days before Pride, he explained why he wouldn’t be marching: “Spending Pride with hundreds of thousands of lesbian and gay people ought to be supportive and comforting. But it’s not that simple. This year I discovered something that is crashingly obvious to those for whom HIV infection is a fact of life, but news to everyone else: The gay community can deal with the disease, providing the diseased stay out of sight.”
A year later, Bird’s health has improved enormously—a result of the recent breakthrough in combination therapies, which are now widely available in the UK.
Edge’s mood has improved too—though he stands by every word he wrote. “People with HIV are sidelined,” he tells me, sounding more weary than angry. “Even within the AIDS industry, there are people who masquerade as compassionate but who want nothing to do with people with HIV themselves.” He refers to one high-profile activist who sits on the board of several AIDS organizations and has a reputation for throwing men out of bed the moment they reveal they are HIV positive. “And he’s not the only one. It’s the contrast between a community that prides itself on the way it has dealt with AIDS and the reality of people not wanting to talk about it. I suppose a log of the anger I felt came from the shock of realizing that really there was nothing special about the gay community. I suppose I always had this rather fanciful impression that we’re this big, wide community where everyone pulls together.”
The harsh truth is, we’re not. What we are, especially in a city the size of London, is a community divided. Described as many as “the gay capital of Europe,” London has a higher concentration of gay men with HIV than any other city in the UK. Half of Britain’s HIV positive population lives here. It is estimated that between 10 percent and 25 percent of gay men in London have HIV. Still the numbers are sufficiently small, and the community as a whole sufficiently large, for a gay man diagnosed with HIV—even in 1997—to feel extremely isolated.
Of all that distinguishes the British experience of AIDS form that in the United States, this is the one factor many overlook: If you’re a gay man with HIV living in New York City or San Francisco, most of your friends have at least some understanding of what you’re going through; in London this isn’t always the case. When Tony Bird revealed to two gay-activist friends in their 40s that he had tested positive, they hadn’t even heard of T-cells.
His experience isn’t uncommon. While the lives of a significant number of gay men in London have been devastated by HIV, plenty more remain untouched. This is why ACT UP failed to take off here. Of course, other factors mitigate our reaction. The generosity of our public health care system obscures the battle lines. And we didn’t have the benefit of a Larry Kramer screaming down our necks with rants of government conspiracies and genocide. But the main reason for the break-up of ACT UP/London was very simple: A lot of people just couldn’t see what all the fuss was about.
Some still can’t. Barely a month goes by without someone writing to one of the gay freesheets to complain about those bloody people with HIV, milking the benefits system for all it’s worth and demanding sympathy in the bargain.
Danny is 33, has been positive for 13 years and doesn’t want sympathy from anyone. He used to work as a stripper on the gay scene. Danny still looks very much the part—six foot plus, body-builder physique; his close-cropped hair and strong, chiseled face belie his gentle manner. Danny has been claiming unemployment and disability benefits for a couple of years, to the tune of roughly £18,000 ($27,000) per annum. Yet he doesn’t get recommend the life. At home all day, depression soon got the better of him. A few months ago, he began volunteering for the Eddie Surman Trust—an organization that supports gay men who feel driven to suicide, often as a result of HIV. He is trying to get back into full employment, driving a taxi for a gay cab firm. The trouble, he says, is breaking out of the benefits trap: “You get so much help that it becomes difficult to give it up. It takes so long to get your benefits sorted out, it’s a fucking big step to say, ‘Right, I don’t want this anymore.’ What happens if six months down the line you’re flat on your back in a hospital bed? The social security will say, ‘Well, you wanted to come off benefits, so now you’ve got to wait six months to get back on them.’ And do you tell a potential employer that you have HIV? Are they going to let you take a week off here and a week off there because you’re ill? It’s a real dilemma.”
Shortly after Danny came out as HIV positive, his career as a stripper took a nose-dive—the bookings dried up. Needless to say, he has no illusions about London’s gay scene. “The community does its bit, rattling collecting tins, but it doesn’t do the most important thing, which is providing for people with HIV,” he says. “We’re how many years down the line with AIDS? And how many gay pubs and clubs in London have a “Disabled” toilet? It’s as if they know we’re there, but once we reach a certain level of illness, we don’t fit in anymore. Other people don’t want to see it. They don’t want to be reminded.”
Rejected by a gay scene willing to raise money but not consciousness, many men with HIV feel they face a simple choice: Avoid pubs and clubs altogether, or create a scene of their own.
It’s Sunday night at Positive Zone, London’s new early-evening club “for HIV-positive gay men and their friends.” The venue is Café Gaudi—a stylish café/bar adjoining Turnmills, home of the legendary techno club Trade. At Positive Zone, the emphasis is on softer sounds: Classic hi-energy mixed with a bit of happy house. Later tonight, the music will gain speed and volume as Positive Zone makes way for Warriors, a full-on techno rave where people with HIV are positively in the majority, and where the favored form of dress is what might be described as “urban Warrior”—shaved head, tattoos and piercings, military fatigues and heavy-duty boots (no trainers/sneakers allowed).
The men behind both ventures are Spike and Buffalo, self-proclaimed “widows-turned-PCP warriors” with in-your-face attitude and wardrobes to match. Buffalo wears fatigues, topped with a Warriors t-shirt, and a goatee; Spike ahs a tribal tattoo on one arm and a silver tube through his nose. Both long-term survivors sick of the way gay men with HIV are marginalized by the gay scene, they opened Warriors just over a year ago. It wasn’t long before certain sections of the gay press began referring to it as “the AIDS fuckers club.” But Spike and Buffalo have no intention of letting up. The advert for Warriors carries the slogan “It’s About Respect.” At Positive Zone, a neon sign above the DJ booth flashes the word positive.
“A lot of people don’t like the fact that we’re very aggressive about how the scene should take responsibility for HIV,” Spike says. “But that’s their problem. We’ve heard so many stories of gay men with HIV being given a hard time in gay venues—from people refusing to drink out of the same bottle to a guy who turned up at a dress-code bar recently and was told to remove the Kaposi’s sarcoma from his face. What we’re creating here is a space where HIV positive people can relax. We make ourselves available. If someone encounters prejudice, they know they’re not alone. There are people here who will support them.”
The support goes way beyond tea and sympathy. Despite Spike and Buffalo’s insistence that Positive Zone is “a club, not a drop-in center,” the distinction isn’t always easy to make. Helping out with door duties tonight is a drag queen in a nurse’s uniform—a joke
At the expense of those who think people with HIV should limit their social activities to visits to the local clinic, but also one that hints at Spike and Buffalo’s unofficial role as caregivers to the community. “We’ve had several instance where people have come and told us they’ve just had a positive diagnosis,” Spike says. And it isn’t unheard of for people to visit the club seeking advice on combination therapy. “People here aren’t nearly so well-informed as they are in the States,” Buffalo explains. “Because HIV is covered under the National Health, you go to the doctor and you walk out with thousands of pounds worth of drugs. I think everyone should be entitled to free medical treatment, but it does encourage you to take things for granted. There isn’t the same pressure to educate yourself.”
Clubs like Positive Zone and Warriors don’t suit everyone—that’s something both Spike and Buffalo acknowledge. But the impact they’re having on London’s gay scene shouldn’t be underestimated. When Tony Bird discovered he had AIDS, one of the things that he and his lover longed for was a bar or club where they wouldn’t feel isolated—“as if we were the only people in the room affected by HIV.” Now at least that’s one struggle about which they have a choice.
Positive Zone is at Café Gaudii, 61 Clerkenwell Road, London EC1. Open 6pm-10pm. Warriors is at Turnmills, 63B Clerkenwell Road, London EC1. Open 10pm-6am. On the Farringdon tube.
Scroll down to comment on this story.