There’s a great article in the Bay Area Reporter by Liz Highleyman about ACT UP, 6th International AIDS Conference protests, the history of AIDS activism, and the reasons behind this weekend’s commemorative events. (A full calendar of the weekend’s events is in the article.) She interviewed my wife, Ingrid Nelson, a nurse practitioner specializing in HIV — but as is almost always the case with reporting, only a small portion of the interview was quoted. Liz and Ingrid have given permission to quote the interview here in full.
Liz Highleyman: Why were these events so important at the time?
Ingrid Nelson: Because people were desperate for scientific information. There was no Internet! These were the early days of patients learning to be their own advocates. They wanted to find out what drugs were being studied, what clinical trials they might qualify for. And they wanted input into where the research should be focused in the first place. There was such a terrible sense of urgency, and so little access to information. It was a terrifying time.
Why is it important to remember them now 25 years later?
It would be such a shame if all this history were lost. Our community was so traumatized, and I think it’s too painful for a lot of survivors to talk about now. People lost their lovers. Multiple times. They lost entire circles of friends. And many were estranged from their families of origin. It was like a war, except it was invisible to the rest of society. I think those of us who are still here, who are able to, feel a sense of obligation to speak up about it. We want people now to learn from what we accomplished, and also from our mistakes. And we are passionate about honoring and remembering our fallen comrades.
What did the protests accomplish?
We did get passes into the conference for people with HIV and AIDS. Many conference attendees — medical providers and scientists — stood up and publicly joined their voices with the activists, during Peter Staley’s speech. Research protocols became more open, and parallel tracking speeded things along. We got tons of news coverage that was very much on message. We brought issues of race, immigration, poverty, and sexism into the discussion. And huge numbers of queers from the community showed up and got arrested for their first time, and became lifelong activists starting with that week.
Do we still need AIDS activism today and if so why? What issues remain?
Any anecdote or event you found particularly inspiring?
There are so many. The INS protest was amazing. The PISD caucus going over the barricades was such powerful symbolism. Seeing so many men getting arrested at the women’s demo was extremely important and meant a lot to me personally as a member of the ACT UP Women’s Caucus. I also loved the red paper chains that the women wrapped around themselves — that was a wonderful visual. Peter Staley’s speech from the podium was huge, and possibly the first time a person with HIV had spoken from the main stage. I remember Peter asking the con attendees to stand up and chant with us, and a lot of them did. I remember him saying (not exact words, but close) “someday, people will talk about how there used to be a terrible disease. But there were some very brave people who fought back.” I will never forget shouting down Louis Sullivan. Our feelings about that were complicated — we believed in free speech, and we didn’t like the idea of a group of mostly white people shouting down a black man. But we talked through all that, and we ultimately decided that the federal government’s inaction was so grotesque, and so criminal in the face of so much suffering and death, that in this case it was justified. That symbolizes so much about how we all felt then — that we were literally fighting for our lives, and that therefore all bets were off and the old rules didn’t necessarily apply. Drastic action, as long as it was nonviolent, was absolutely called for and was entirely appropriate.
I also remember when the con was over, and we all marched to Market Street and essentially crashed the Pride parade. We always refused to get any type of permits for our protests — it was against our principles, and we made no exception for Pride. We didn’t know exactly what the crowd’s reaction would be — there were some people in the LGBT community who disagreed with our tactics. But that march felt like our own ticker tape parade. We got nothing but cheers and thumbs up the whole way. I remember turning and saying to someone marching next to me, “it’s such a lie that this community hates us.” We did our usual routine of “dying in” at regular intervals, and drawing chalk outlines around each other’s bodies. It’s one of my most vivid and proud memories of those times.