What Happened to the HIV/AIDS Movement?

Read Transcript

We really in sort of look back moment with the epidemic right now with Barry Cremmins Normal Heart on HBO and at Dallas Virus Club and documentaries nominated last year for the Academy Award, My Book. Something is happening right now, that people are looking back and processing some of that, and I think, some of it is just simply the distance from the days of the worst time.

We can have some perspective now. Some of it is, a sense of urgency because there are fewer and fewer of us around who are on the front lines from the beginning to tell that story first hand and some of it is because obvious we're starting to tell some of this story and in many ways that don't reflect what I experienced.

And at the time, so little was known about AIDs, HIV referred to today but so little was known about it but those of us who had it, we knew more than just about anybody else out there, very often including the physicians who were treating us. So we became each others experts. I learned far more and throughout the epidemic, I've learned far more, exponentially more from other people who have the virus than I have from physicians.

Even though I've had some really terrific healthcare. So I think that's one of the peculiarities of the epidemic that it was a new virus, a new situation that no one knew anything about that helped ignite the empowerment effort around it because it was out of necessity. It was not majority follows and [xx] the people saying hateful and ugly things, that's one thing.

That didn't hurt. It made us just always that's just something that's out there, but the inaction from, to put in political terms, from progressives and from people who should have been there and weren't because they were creeped out or [XX]. There was just really a sense that does anybody care.

Initially, stigma was fundamentally about homophobia and fear of casual contingent but then extended to exacerbating an already existent fear of homosexuality. But within the community of people involved in the epidermic and the people providing care to us and other people with HIV, the gay and lesbian community in particular that all existed to some extent but it was so dramatically different.

It was relatively kind of safe space, and you felt supported by this community. Gay men felt supported by this community when they were diagnosed. There's this loving, embracing gay community that wraps it's arms around you and accept the epidemic as a collective responsibility. That couldn't have been more different today.

Fear of casual cotangent has declined over the years. Most people are much more sophisticated about it. The number I think about 20% of the country thinks that you can get HIV from a drinking glass and 11 or 12 percent of a toilet set. Those numbers have come down over the years, they're still too high but they've come down.

So that is in as much of a factor in stigma. The stigma today is a much more likely coming from people within your own community. The gay community support is largely gone. People of HIV today when they come out about their status, their social circumstances change much more dramatically within the gay community than they would have years ago and the stigma today is rather than generic homophobia, it is much more likely a judgement being made about the person, or you're being pre-judged, marginalized, othered.

And an enormous part I think greater today than it used to be, is self stigmatization, is people being diagnosed in sort of buying into the idea that they are now less than..