Fire in the Belly

Sarah Schulman. Photo: Drew Stevens.

In your new book, Let the Record Show: A Political History of ACT UP New York, 1987‑1993 you write that you can’t tell the story of ACT UP chronologically because too much was happening at once. So, you arranged the book thematically. What did this allow you to do that you wouldn’t otherwise?

It lets the reader experience what time was like inside the organization. It was so intense. So many people were suffering and so many people were acting. In the back of the book, I do give a timeline so if people want to see when a particular event happened, they can, but it would be impossible to write it chronologically—it just wouldn’t be true.

Do you think telling the story in a nonlinear way also allows you to decenter white men and focus on women, people of color, and other people who are marginalized or left out of most narratives about ACT UP?

It does allow for more people’s stories to be told. If you think ACT UP is only the Monday-night meeting, then you get mostly white and mostly male. But if you see ACT UP as an organizational nexus and look at all those different places, and communities that people in ACT UP were working with—in addition to working with each other—then you get a real snapshot of the whole AIDS-activist movement, broadly defined.

In some ways, I see this as a people’s history because you’re drawing from the almost two-hundred interviews that you and Jim Hubbard did with members of ACT UP for the ACT UP Oral History Project, as well as your memories of your involvement. And I’m wondering if you think that also allows you to broaden the reach of the history as it’s traditionally told.

Well, it’s appropriate to the subject. When Jim and I tried to get funding for our feature-length documentary United in Anger: A History of ACT UP, we were told that you have to have five or six characters on a journey—that’s what a documentary is. And Jim kept telling them that if we did that, we would not be telling the story of ACT UP. It’s the story of the group, not individuals. But there’s this American heroic narrative based on the John Wayne model that people are familiar with. In this case, it’s just not relevant to the actual content of the history.

Do you think this story was only possible because it was literally a life-or-death issue for so many?

I think that in America, you can only get change from coalitions and that the people with the most access only participate in coalitions when they’re desperate. When you break down the different silos—when you look at the white men who met with pharmaceutical companies over catered lunches, and then at the women of color, and homeless and formerly incarcerated women who fought for four years to get the definition of AIDS changed—you can see that the strategies were determined by people’s social position. Each group, whether it was the Latino Caucus, whether it was drug users, whether it was people working with patients, had to develop a strategy that was viable to the community’s social position. Strategies are quite varied, and that’s why it’s more interesting to juxtapose them, to create the whole, rather than try to force it into a timeline.

You talk about the fight to change the definition of AIDS as one of ACT UP’s greatest victories, but I think this has been mostly lost to the historical record. Could you talk a little more about that and what it has meant?

I’ve documented how individual women who weren’t in ACT UP—or who were adjacent to ACT UP—but were working either as poverty lawyers or as health-care providers in city hospitals noticed that women were getting different symptoms than men from HIV. Those symptoms were not included in the official CDC definition of AIDS. So these women, who were mostly poor and very often women of color, were not qualifying for an AIDS diagnosis because the symptoms were based on male symptoms. They never qualified for benefits and would actually die without ever getting a diagnosis.

This was a four-year campaign, and many of the women who led it were dead by the time we won a change in the CDC definition. In fact, one of the most important leaders, Katrina Haslip, a formerly incarcerated woman, could never qualify for benefits so she could never get home care. And she kept falling at home because she had no assistance and died right at the same time that the case was resolved. But what happened immediately [after the CDC changed the definition] was that not only were huge numbers of people suddenly eligible for benefits, but they could also get into the [clinical] trials. And so today, millions of women around the world who take medications that are related to HIV—those medications were tested on female bodies because ACT UP forced a change in the definition. You could really say that, in a sense, it’s ACT UP’s greatest achievement and that it had a direct impact globally.

ACT UP was involved with a lot and had many other victories. They rearranged research priorities. They started needle exchanges in New York City. They started Housing Works for homeless people with AIDS. They confronted the Catholic church. And many of the drugs that were liberated based on ACT UP’s parallel track system, which we forced on the FDA by having a major demonstration that shut them down. These drugs were temporary to keep people alive until there was finally a treatment system that did actually work—and that really wasn’t released to the public until 1996, which was long after the heyday of ACT UP. So, the CDC definition is the most direct link between an ACT UP campaign and contemporary conditions of people with HIV globally.

I found myself sobbing at many moments while reading the book. One of them was when you write, very simply, “Because we wanted to win, which meant to live.” ACT UP is an activist group that was formed by mass death. And you also write that you want the book to be used as a resource for activists today. I wonder if showing that brutal reality in all its complications serves as an antidote to nostalgia and furthers the potential for the book as an activist tool . . .

The main reason ACT UP was successful to the extent that it was is that it was a big-tent organization, which meant that people disagreed profoundly. There was no consensus. If something was being done that you disagreed with you just simply wouldn’t do it. You wouldn’t try to stop someone else from doing it. No one was ever kicked out of ACT UP—that is very important. We’re in a position now where there’s a culture of accusation. There’s a lot of homogeneity. There’s an attempt to force people into common analyses or agreed-upon strategies or even common language. And I think history shows us that that has never been successful. If you really need to win, you do your own thing, that makes sense to you, side by side with other people who are doing the thing that makes sense to them. This is a challenge to a kind of cinematic view of what a coalition is. I think people look at the word “coalition” and imagine a Benetton ad: there’s an Asian person and a Black person and there’s a little lesbian, something like that. But a coalition is actually a group of silos of like-minded people working together for things—in creative ways that makes sense to them—standing side by side with each other. It’s not a forced integration of anything. It’s a coexistence. Part of the structure of the book is to illustrate what that was, and how that felt.

You quote Adam Rolston saying that ACT UP wasn’t just an activist organization but its own culture.

Yes, it was a way of life, absolutely. People have spent their whole lives with ACT UP, they lived with people from ACT UP. They became very alienated from people who were not doing anything. And many people—either because they were sick or because they were committed—stopped their careers. It was completely a collective way of life.

What do you think it takes to create a culture of resistance?

People join movements because the movements make their lives better. Nobody will join a movement out of guilt, and nobody will stay in a movement because they think they should. People come to movements because they’re vibrant and alive, because they’re open, because they can have new experiences, because they can express themselves. And that’s what the collective for a progressive future is. If the actual movement is oppressive, you’re not going to get anywhere.

On that question of care, I’m thinking about the continued trauma of the AIDS crisis. At a political funeral for Mark Lowe Fisher in 1992, Michael Cunningham says, “We won't recover from his loss and we won’t forgive it.” That seems like a widely shared politic of the time that is gone now, the idea that forgiveness is not on the table. I think it also brings up the question of accountability: What do you think accountability would look like?

I think the greatest legacy that we could work towards right now would be an equitable health-care system. Linda Villarosa, reporting for the New York Times, showed in 2017 that Black gay men in the US South have a higher HIV prevalence rate than men in any country in the world. And this is now, when we have medications, so if you get infected today you can live a normal life span—if you have access to the drugs. It’s because we don’t have a functional health-care system and we won’t have an equitable society until we do.

In the book, you write about a tension between fighting for drugs that are accessible to some versus fighting for universal health care.

If you have a home, then access to drugs might become your focus. But if you don’t have a home, you need a place to live so that you can access treatment—ACT UP realized that. If you’re a drug addict, you need clean needles—different people have different needs, in relation to their social position. The movement recognized that broadly—not everyone in it recognized that, but collectively they did.

You also write about the myth of resilience in the face of the continuing trauma of AIDS. I wonder if you want to talk about what that myth is and who it does and doesn’t serve.

People who survived the AIDS crisis, and people whose parents died of AIDS, and people who were born HIV positive: these people have been through incredible deprivation, shock, abandonment, and where they are now is unknown. They haven’t been followed. I know that many people have had severe drug problems years after they were in ACT UP, and a significant number of people seroconverted in their forties, fifties, and sixties, after staying negative through their ACT UP years. There’s just a lot of pain in that generation and they haven’t been cared for and they haven't been seen.

At the very end of the book, you talk about the enduring relationship of AIDS. What do you think that is?

I have a genetic condition called JAK2 positive—a somatic mutation. And so, I go to the doctor a lot. One time, I was getting phlebotomies and sitting with a nurse about my age, an Irish straight woman. And it turns out her first year of nursing was 1980 at NYU. And while we’re sitting there and she has a phlebotomy needle in my arm—it takes twenty minutes to fill the bag—she’s telling me about what it was like to deal with AIDS in the early days, and all of the things that she went through. And, of course, those stories have never been told. There we are, two women at the end of middle age, telling each other our AIDS stories. These experiences live on in us but they’re in private conversations.

And do you think that part of what you’re doing with this book is making that public?

I’m trying.

Mattilda Bernstein Sycamore ( is the author, most recently, of The Freezer Door (Semiotext(e), 2020), a New York Times Editors’ Choice and a finalist for the PEN/Jean Stein Book Award. She is the editor of Between Certain Death and a Possible Future: Queer Writing on Growing Up with the AIDS Crisis, which will be published in October.