Why I fought the gay leaders in denial over Aids

I've had three long-term relationships. I spent many years as a New York City sex worker, specifically as an S&M Top* for hire. I also began having high-risk sex at New York bathhouses in the 1970s. But it wasn't until I moved into the heart of the gay ghetto in Manhattan in the late 1970s that sexually transmitted diseases began to afflict me.

In May 1983, along with Dr Joseph Sonnabend, a pioneering Aids researcher, and Michael Callen, the late activist/musician, we wrote and self-published a 40-page booklet called, How to Have Sex in an Epidemic: One Approach. Our work is now widely regarded as the invention of safe sex. But at the time, the notion that lifestyle factors played a role in Aids was something that gay leaders simply didn't want to hear, and we were vilified.

Many of them had promoted promiscuity as the height of gay male liberation. Confronting the possibility that a lifestyle they had championed may have contributed to the deaths of their own people was too painful to bear. Truth became a thing to manage, and suppress.

The notion that lifestyle played a role in Aids was something that gay leaders simply didn’t want to hear, and we were vilified

So when Callen and I argued that lifestyle played a role in Aids in the gay press, we were smeared and shut out of community debate. Callen was accused of lying about having Aids in an attempt to secure a public platform. Details about my sexual behaviour were reported on a gay cable TV show to try to shame and silence me. Callers to the local Aids hotline seeking medical help were told to stay away from Dr. Sonnabend.

We three were so despised and blacklisted that it took two years after we published How to Have Sex in an Epidemic, to launch the first safe sex education campaign in New York, home to half of all the Aids cases in the US.

The legacy of the gay leaders' message - that everyone was at risk from Aids and that the way you lived had nothing to do with it - has had tragic consequences. The efforts to de-gay Aids have diffused our focus and squandered resources. In the West, sexually active gay men still constitute the vast majority of Aids cases while ever-diminishing funding for safe sex education has been spread across the population board instead of where it's needed most: gay men who engage in receptive anal intercourse with multiple partners whose HIV status isn't known, inner city youth, women and the poor.

Like so much else, the Bush years have been a tragedy for HIV infection rates. Beleaguered Aids organisations have continued to be replaced by faith-based initiatives pushing abstinence programmes; as a result, HIV infection rates began to climb the first year Bush took office and continued to rise every year since he took office.

Hope lies in an Obama administration. The new, more sexually fluid 'whatever' generation that could access porn soon after they first learned to click a mouse, aren't just ready for honest, graphic safe sex education: they're demanding it.

They need to. In 1985, when the first HIV test became available, I tested positive. Infection with HIV takes an unfettered life and turns it into an indentured, lifelong science project. Having to constantly monitor levels of HIV in the blood to see when you need to go on medication or change the regimen you're on in case it stops working, waiting for incessant appointments in doctors' offices, going to pharmacies every month to fill out prescriptions, staying up to date on the latest side effects of the drugs you're on and dealing with insurance companies and paperwork that never lets up, is like having a tedious, lifelong part-time job that never ends and doesn't pay.

I am so sick of all this I want to scream. People talk about Aids being "a manageable disease" without understanding that what is being managed is death.

'Sex Positive', a documentary about Richard Berkowitz's role in the invention of safe sex, made by Daryl Wein, is showing at the London Film Festival on Friday October 24 and Monday October 27

*The sadist - as opposed to the masochist