I’m the typical “helper.” Actually that’s really good therapy, it makes you reflect upon yourself. I was an activist in the ‘70s, in gay liberation, and then I was part of the first UK response to HIV in 1982, 1983, and set up organizations and help lines and things like that. I never had a job for more than four years, I was too busy manning barricades.
To a certain extent I suppose through the ‘70s and ‘80s… I stopped counting funerals after a hundred people who I thought I was going to grow old with, would be my social network, would be my support network in that sense. So, that is quite fearful in a lot of ways.
I’d been working in HIV for nearly a decade; I pre- and post-tested counseling. I hadn’t had an HIV test for about four years and I thought perhaps I ought to. I found out the day before I got on a plane to a conference in Acapulco, as it happened, an International Lesbian and Gay Association Conference, and saw my best friend and said, “I’ve got something to tell you, I’ve got something to tell you!” I went upstairs to the hotel room and just burst into tears. And they said, “Look, I’ve got a really important meeting I’ve really got to be at, but I’ll be back in 20 minutes.” Her room was on the 14th floor or something, with a very big balcony. And she got back and she said, “Well, you’re going to get over it, darling, because you didn’t jump off!” (laughs)
I work full-time in “the industry” that we have spawned, with all its ridiculousness and all of its, you know, madness, sometimes. So from somebody living with HIV, within 10 years I was somebody living off of HIV. I work for the Global Network of People Living with HIV based in Amsterdam, and this is the longest I’ve ever had a job, five years. I’ve worked in quite a few countries, until it all got to be boring to do consultancy with WHO and UN AIDS and various other people, because sometimes… sometimes that doesn’t translate into action.
So, I have an awful lot of friends, and being part of the global positive family is in some terms my support. I actually also get a lot of support from my own family, you know? My brothers, my sisters, my mother – they all know I’m positive and they’re all incredibly supportive and incredibly wonderful. Except my little brother, who’s a carpenter, who turns around says, “Well, my, my. I work with my hands, and at least at the end of the day, that person has got a set of shelves, or has got a new kitchen, or something like that.” “You wander around the world,” he said, “going to meetings and talking to people. And whatever comes of it? What’s the product? And you get paid far more than I do.” And sometimes I think, you know, sometimes we are chasing our own tail in terms of moving the chairs.
When I was 30 and living with HIV, I was concerned about dying. Now I’m concerned about how I live well. What makes my life more difficult is actually whingey, whiney bloody older people living with HIV who, perhaps like me, were either damaged, health-wise and economically, by the fact that they found out their status before there was treatment. That the first treatment they were on was, like, salvage therapy. That they were quite damaged financially and emotionally and in terms of stigma and discrimination and in terms of career trajectory.
But now, actually, the treatments are there – in the main. The world has changed. But they’re still whinging and damn well whining about the fact that they’re alive, in some ways, and that really pisses me off. Yes, there might be marginal and small changes that are going on in terms of reduction of support services, but some of those support services were actually put in place because it was to give people dignity before death. And to a certain extent, at least in the UK, we got Rolls Royce treatment, the best healthcare in the world. And actually we gave people pretty generous disability benefits. A lot of those people actually don’t need them, but they’re still hanging on to them now. And that is because we have not faced the challenge of turning around and saying, “We are alive, get on with living.” Make something of our lives.
You turn around think, okay, well, you’ve got all this sort of relative privilege, and okay, shit happens and you haven’t got the home, the car, the dogs, the boyfriend that you thought you might have had without HIV. But you’re still alive, honey, and when you look at the fact that 4,000 people in other places are dying every day, what are you doing about that? What are you actually doing? I don’t expect everybody to become an activist. But you write in to the government saying, “Give more money to Africa,” you know? Or give more money to Eastern Europe. Are you doing that? All things are relative, but let’s count our blessings, and actually do something about people who we have an affinity – we’ve blood with, who are not even where we are at.