Take action, fight, fight AIDS!
This song resounded across the United States in the depths of the AIDS crisis, when activist group ACT UP united the LGBTQ community and its allies to fight for their lives.
Today, for many people, ACT UP exists primarily in stock images of street protests: Angry gay men are arrested as they challenge government, religion and the medical establishment for their inability to fight against AIDS. Flashy fictional versions of the band appeared on “Pose” and “It’s a Sin”, but what was ACT UP really all about?
Sarah Schulman wrote Let the Record Show: A Political History of ACT UP New York, 1987-1993 to tell the fullest possible story of ACT UP (AIDS Coalition to Unleash Power) by interviewing 188 members. She did it, she says, because the history of AIDS activism was obscured and re-historicized as just a few brave individuals (mostly white males), rather than the massive community effort that ACT did. UP really was.
Sarah calls this obscuring of our collective history “a state of emergency”. His book is a synthesis of the diverse communities, personalities and strategies that have intersected to create a staggering amount of change in a short period of time.
I’ve known Sarah since we both joined ACT UP. I had just graduated from university; she was already an accomplished novelist and journalist for queer media. Over the next four years, I sang and was arrested for civil disobedience, but I also worked on committees, attended classes, facilitated meetings, made some of the best friends in my life. and lost some of the best people I have ever seen. known, as my young political mind was open, my privileges examined, and my worldview transformed for good.
We spoke at length on the phone; the following are the highlights of this conversation.
Sarah schulman
I would like you to answer first: why did you collect these interviews?
In the first five years of AIDS, 40,000 people died, and the government did nothing, and pharma basically tried to recycle the cancer drugs it owned the patents for. What the gay community did during those early years was try to replicate the social services we were deprived of, because not only did gays have no rights – like your partner died of AIDS, you couldn’t. not inherit the lease – but also family homophobia was omnipresent, many people with AIDS had no family support. All of these social services were founded – people would walk your dog, or someone would be your buddy and do your shopping – but there has been no political response.
In March 1987, Larry Kramer, the writer (The Normal Heart), gave a speech at the Gay and Lesbian Center, and onlookers decided they wanted to form a political group. A few days later, they meet and found ACT UP.
ACT UP has had some amazing victories, I mean it’s very hard to find another movement of people also outside of power that has been able to accomplish so much. Just to hit the highlights: ACT UP basically forced pharma to restructure the way they did their drug research; ACT UP forced the Food and Drug Administration to make experimental drugs available, even if they had not been approved; ACT UP forced the CDC to change the definition of AIDS, so that women with AIDS could benefit from the benefits and trials of investigational drugs; ACT UP legalized needle exchange in New York; ACT UP prevented the Catholic Church from preventing the distribution of condoms in public schools; and ACT UP launched Housing Works, a program for homeless people with AIDS. ACT UP carried out a private insurance reform that made 500,000 people living with HIV eligible for insurance and ACT UP changed the way gays and people with AIDS see themselves and are seen in the media . And it is phenomenal.
None of the ACT UP documents have been digitized. As everyone started to log in, if you searched for ACT UP you wouldn’t find anything. And it was like we never existed. Then in 2001, I heard a radio show where this guy said, “At first America had problems with people with AIDS and then they came back”, and I was like no, in actually thousands of people fought until the day they died and forced this country to change.
A re-historicization of ACT UP began to take place, based somewhat on the individual heroic-white man model of John Wayne, where Larry Kramer was suddenly the leader of ACT UP. And I’ll just say for the record that I interviewed 188 people and no one at ACT UP thinks Larry Kramer was the leader of ACT UP. It is a media construction. Change happens through communities, communities and coalitions.
I was struck by the fact that one of the first long chapters of the book is about Puerto Ricans in ACT UP, because there is this idea that ACT UP was a group of white men.
ACT UP was a predominantly white male organization, but it was not an all-white male organization, and there is a big difference. The Monday night general assembly tended to be mostly white and male – there were quite a few white women as well – but when people left that meeting they went to work on coalition projects. They worked on needle exchange, they worked with homeless people, they worked with women living with HIV, with prisoners, with mothers, with Haitians. Their reach was therefore far beyond the community of white gay men. There were four committees in ACT UP that Latinos participated in that were specific to the Latino experience, so it was a significant presence. It was never historicized in the context of white ACT UP, but it is there.
You describe how things went horizontally in ACT UP – they kind of happened everywhere.
Everyone thought that what they and their friends were doing was what ACT UP was doing; hardly anyone had an organization-wide vision. And that’s because people were very busy, but also because it wasn’t a consensus-based organization. You didn’t need to have an agreement to do things. If you were ready to take direct action to end the AIDS crisis, you could do it. You wouldn’t try to stop someone else from doing what they wanted, you would take your like-minded people and go and organize the thing you wanted to do. Because of this radical democratic structure, so many things were happening at the same time.
Like, the Asian Pacific Islander caucus – what I write about what I think was not included in the ACT UP laundering story – was going to Asian gay bars and doing sex news safely using Chinese New Year’s lucky red money packets to distribute condoms. And then there were people who worked with the prisoners; there was a lot of activity with activist prisoners for the HIV positive prisoners. These two things are not related to each other, but they were happening at the same time. And that’s why ACT UP was successful, because it allowed people to respond, from where they were, instead of trying to force people into a homogeneity that never works. And that’s a really good lesson in Big Tent politics.
I was one of those kids who heard Larry Kramer speak when I was 21. He did one of his fiery speeches, saying, “This half of the room, you’re all going to be dead in 10 years, and what are you going to do about it?” And the solution he came up with, in the spring of 1987, was to join ACT UP, and I did. Do you think Larry played a role in ACT UP beyond being that kind of motivator? [Kramer died in May 2020 at the age of 84.]
Larry was like a bad father. You know, if you didn’t worship him, he would refrain and he would punish and embarrass you. But then he would come back and love you. Socially, Larry was a rich man with a lot of access, who cried out [at people in power], and most men like him didn’t. And that made him special. Like Peter Staley – I mean, how many JP Morgan stock brokers have joined ACT UP? One. These guys came from a lot of privilege, and they felt superior for it on some level, but they were exceptions. And what they did was really important. If more people in power had done what they did, we probably would have gotten to where we wanted to go faster.
In 1988, I was part of the committee in charge of the presence of ACT UP at the Pride Parade. This is the year we made big signs with the faces of our enemies, with their quotes, and the word GUILTY is engraved on them. Antoine Fauci [at the National Institutes of Health] was one of them.
That’s right. Anthony Fauci is reborn as an AIDS hero. Even Rachel Maddow said it recently, but it’s not true. In the book, I show three times that innovative activists have said that they go to Fauci with ideas about women, drug addicts or the parallel path. [for faster drug access] and he rejected their ideas and had to be forced to.
So it’s that John Wayne thing again.
KM Soehnlein is the author of The World of Normal Boys and the upcoming Army of Lovers, a novel about ACT UP. Read the transcript of his interview with Sarah Schulman.
