August 24, 2006—People talk a good game about involving people with HIV in this movement. “Bring the voices of affected communities to the table,” they say. “Bring everyone together.” What a pile of crap!  

The pride that filled my heart as I watched Canadian AIDS activist Louise Binder take the stage last week at the opening plenary of the International AIDS Conference was quickly replaced with outrage when her microphone was shut off before she was able to finish her speech. The only HIV positive person on the program—a powerful orator who drew rousing applause from the audience after every point she made—was silenced.   

A chanting crowd demanded that the session chairperson “Let her speak!” But no, there was “housekeeping” to be done, and there were “important speakers waiting”—the “Double Bill” of Clinton and Gates waiting in the wings to tell us how important it is to involve people living with HIV in decision-making.

I can only wonder how those two would react if they knew an HIV positive woman had been silenced to accommodate them. But I can tell you this: The way Louise was treated brought to life the main theme of her discourse:  “Where power lives, HIV does not,” she said. “And where power is not, HIV lives.”

I made the rounds of the conference after the opening plenary to find out what everyone thought about what had happened. “I understand logistics, but it seems they invite you to the table but don’t let you eat,“ commented Dona Da Costa, executive director of the Family Planning Association of Trinidad and Tobago. Richard Burzynski, executive director of the International Council of AIDS Service Organizations, said simply, “The community must speak first.”

But Louise Binder’s story was, sadly, not the only case in point. Overall, this conference lacked the meaningful involvement of people living with HIV and the communities overrepresented in the epidemic. There was nothing of the science-government-community partnership hoped for. The community was represented only in a few carefully crafted media messages painstakingly agreed upon over several oceans and time zones by people living with HIV, mostly women. We were heard but only because we took the power that is so often denied us.

International Community of Women Living With HIV/AIDS chairperson María Jose Vazquez was one of many waging nearly the same battle as Binder. At a high-level meeting on the subject of women and girls and HIV, dignitaries, heads of state and key conference organizers had time on the agenda to state their positions, but Vasquez was instead relegated to the question and answer period. At which point she made a very clear statement about the inappropriateness of her exclusion and walked out of the room.

When I talked to her later, she said, “I feel like a token. We always have to push, push, push to get in the door—making it clear we are on the outside.”

Another problem was the content of the official conference sessions themselves. Many were disappointed by the lack of HIV positive perspectives on the issues. Richard Neron, who works with youth in Newfoundland, Canada, said, “I was happy to hear the science but am tired of listening to professionals tell me about youth and drugs and homelessness… I’d much rather hear it from the youth themselves.”

Speaking of professionals, the only real session on and for people with HIV was to discuss “HIV positive professionals.”  Helloooooo? What about the rest of us?
We do have strong allies at the big table, such as President Mary Robinson of Ireland, Dr. Helene Gayle of the International AIDS Society, Crown Princess Mette-Marit of Norway and UN Africa envoy Stephen Lewis. And I say thanks to them—and to Louise Binder and María Jose Vazquez—for pushing hard on that door and holding it open for the rest of us. You are an inspiration for oppressed people everywhere.

Do I like living with HIV? No, of course not, but I am truly proud to be a part of this community. In fact, I am so personally inspired by its fortitude that I have decided to be completely out about my own status from now on, no matter what. POZ readers: Here’s my face on That, my friends, is power!