By 1985 the storm was building fast. I was still working at London Lesbian and Gay Switchboard (0300 330 0630). I spent a very draining hour talking to a guy who’d just been diagnosed with KS. Even though more and more friends were getting sick nothing had prepared me for the emotional intensity of the call. He’d gone straight home from the clinic and phoned as soon as he got home. It was one thing to know the facts, but the waves of distress coming down the phone line were like Lou Reed’s “Ocean”
Don’t swim tonight my love, the sea is mad my love
it’s known to drive men crazy
We split the entire organisation up into smallish groups to discuss our emotional responses to the crisis. Some groups only met once or twice, others met at intervals for quite some time. The group I was in only met the once, as I remember, but it cemented a friendship between Barrie and me. I stayed over with him that night and when he pulled out a condom I just shook my head. “You sure?” he asked. With the invulnerability of youth (well, the under thirty year old!) I said “I’m sure.” And that’s all you get to hear about that night…
We saw each other often, at Switchboard, and at a couple of pubs that were about midway between our two homes. You never see what’s staring you in the face: every time after that when I asked Barrie if he was up for a repeat performance he was feeling under the weather in one way or another “It’s not that I don’t want to, it’s just that I’m not up to it right now…” Then he disappeared for a few months.
Cut to a Switchboard business meeting in 1986 and I hear someone talking loudly about Barrie and I don’t quite catch what’s being said. After a loud whisper “you know they were close, but he hasn’t heard yet.” I was given the news that Barrie had died of PCP a day or two previously. After the initial flood of grief at his death I remember thinking “well if I didn’t have it before, I’ve got it now.” At the time we knew little about the relative infectivity of HIV. I got through the meeting on autopilot, my emotions closed off from the world, then instead of staying for a drink I went out and bought a four pack of beer: I had work to do on the computer at Switchboard and I knew at that time of night on a Sunday I’d be undisturbed.
I sat at the computer with my shorthand pad next to me trying to write the minutes of a meeting. But what was going through my head as I slowly got through the beer was that Barrie must have known. How could he have not told me he was HIV+? Why did he let me go ahead without protection? Was he so angry at the world for getting HIV that he’d been deliberately spreading it? As I got drunker, the easier it was to make my exposure to HIV Barrie’s fault. (Of course, by this time I’d forgotten about that strange rash in 1980 that marked my seroconversion)
It took me until the funeral to realise that I was responsible for my own health. That I’d decided to risk it. He’d offered, I’d declined. I began to formulate an idea I still hold to today: the healthcare of people who haven’t tested positive is not the responsibility of those of us who are positive: everyone is responsible for their own health. When I refused the condom, Barrie must have presumed that I was positive too. My position in that no man’s land between exposure and diagnosis was entirely down to me.
It was only a few years previously when you made a phone call to a hook-up and said that you’d been to the clinic and you had clap and you’d get the response “oh shit – well, thanks for letting me know” and that would be the end of it. Now, with a virus without any form of treatment, we were busily pointing the finger at each other, something that we’re still learning not to do, but the general public is still all too happy to do.
Witness the recent prosecutions for reckless transmission. To me, the only place for HIV in a court of law is if there’s been sexual abuse involved. To do otherwise would be to drive people away from testing, resulting in more late diagnoses and more deaths from advanced HIV disease.
While we’ve learned an awful lot about HIV in these past thirty years, our attitudes are beginning to look distinctly threadbare.