Lessons From a New History of ACT UP: An Interview with Sarah Schulman

The AIDS Coalition to Unleash Power began as a revolutionary liberation movement––so what happened?

In 1987, filmmaker Todd Haynes, along with other members of the AIDS Coalition to Unleash Power (ACT UP), created a window installation for the New Museum of Contemporary Art in Tribeca. The exhibit, called “Let the Record Show…” featured a large photomural of the Nuremburg Trials behind cardboard cutouts of Jerry Falwell, Ronald Reagan, William F. Buckley, Jesse Helms, and other national figures who, the artists suggested, would be judged for their lethal crimes against people with AIDS. Like much of the media produced by AIDS activists during the decade, this piece of agitprop reassigned blame for the crisis away from the usual cast of scapegoats (gays, sex workers, drug users) and towards those in power.

Sarah Schulman’s new book, Let the Record Show: A Political History of ACT UP New York, 1987-1993 takes its title from this museum installation; both projects share a need to chronicle the AIDS epidemic from the perspective of those most impacted by the disease. The phrase “let the record show” is also a provocation to readers — asking us to reexamine what we thought we knew about AIDS activism, those myths that have persisted even within progressive and queer subcultures. You may have heard, for instance, that ACT UP was a lily-white movement spearheaded by Larry Kramer, or that Dr. Anthony Fauci spent the 1980s as a heroic ally to the gay community.

Schulman, a prolific novelist and playwright, joined ACT UP in 1987 after spending several years covering AIDS as a journalist. Her participation in direct actions within the reproductive rights movement prepared her for the types of civil disobedience that ACT UP coordinated against the FDA, the NIH, and the Catholic Church. Her meticulously researched volume — part tender memorial, part organizer roadmap — rights the errors of public memory, drawing on hundreds of interviews with her fellow activists, spanning twenty years.

SASCHA COHEN.— The ACT UP meetings took place on Monday nights at the Gay Community Center in lower Manhattan. Many of those who attended said there was an erotic energy in these meetings, the opportunity to socialize and flirt with attractive, charismatic young people. They described it as “glamorous” and “romantic,” and people fell in love. Was this something unique about ACT UP as an organization, the appeal beyond strictly politics?

SARAH SCHULMAN.— Oh, not at all. Every successful movement has that. Famously, Emma Goldman said, “if I can’t dance, it’s not my revolution.” The Communist Party used to offer free beer. When people join movements, being in the movement has to make your life better. If it’s a burden, it’s not going to succeed.

Tom Kalin said that the ACT UP meetings were like his fantasy of the socialist communist meetings in the 1930s and that they also reminded him of the 1960s. The atmosphere was really exciting for people.

For each person, the romance was different. For some people, it was a romance of the civil rights movement that their parents were in or that they were in. And for some people it was just an extension of gay liberation. It really depended on what your background was. This was a despised group of people with no rights, and who were dying. And when AIDS was first recognized by the medical establishment and mainstream media in the early 80s, there was a fear of sex that accompanied it — a lot of gay male sexual culture was repressed or pushed underground, especially when the bathhouses were closed. But the ACT UP counterculture, which began five years into the crisis, was like a sexual revolution. It marked a return to the sexual culture that had been repressed.

You state that the purpose of the of Let the Record Show is “not nostalgia, but to help contemporary and future activists learn from the past to assist organizing in the present.” Among the things that ACT UP did so effectively was formulating very specific demands for each action. The protests and marches always had such a targeted vision, whereas with contemporary social justice work, sometimes there’re these sort of vague notions of awareness or visibility, but there isn’t a concrete demand.

You’re bringing up some very complex historical issues. ACT UP was a constituency movement, not a solidarity movement. The issues emerged from the experiences of the people in the movement, and that’s how the demands were developed. They weren’t developed from political analysis — they were developed from a lived need, which is why they were so concrete.

In American history, there have been basically two different kinds of trajectories for progressive movements: utopian movements and reform movements. Reform movements include emancipation, women’s suffrage, and making abortion legal. ACT UP was, in a sense, a reform movement, because we were looking for policy and legal change.

Then, there are utopian movements, like the utopian socialists or anarchists of the 1920s, or hippies, or gay liberation. Historically, in America, we are best able to move forward when both movements are in place and have a dialogic relationship. ACT UP was a meeting of gay liberation and gay rights. Post ACT UP, the gay movement deteriorated into a gay rights movement and lost the liberation element.

Another theme throughout the book is the idea that ACT UP was a diverse, multiracial coalition, but the connections that white men had with the powerful higher-ups in art, media, and government, actually helped them win their demands.

I wouldn’t say it that way. I would say that, contrary to the false historicization, ACT UP was not an exclusively white and male organization. And there is, as I think the book shows, a very profound difference between a predominantly white and male organization and an exclusively white and male organization. Because when women and people of color get involved in these movements, they have enormous influence. Whether we’re looking at art, whether we’re looking at changing the CDC definition [of AIDS], whether we’re looking at ACT UP Puerto Rico, even though women and people of color were not the majority, they had enormous influence. They were theoreticians, and they made huge contributions.

When you talk about the role of white males in ACT UP, I think you have to historicize that. Because at the time, white gay men were a profoundly oppressed group. Today when we say white gay men, we have a different conceptual understanding of what that means. Back then, even in New York City, there was no gay rights bill. You could be fired from a job or kicked out of an apartment for being gay. Also, there was familial homophobia, which was rampant and was also the most common queer experience that transcended class and race.

Within that group, there were some men who came from very elite backgrounds. Larry Kramer went to Yale with the president of Bristol Myers, Peter Staley came from JP Morgan and his brother is currently the CEO of Barclays, and Mark Harrington went to Harvard. When they sat down at the catered lunch provided by the pharmaceutical companies, there existed a mutual identification. In the 80s, people who held leadership positions in media, government, and in the private sector were almost all white males. If the rest of us had been at those tables, would we have been able to be successful?

So you needed people with those sorts of connections to really leverage power?

That’s a question I raise. People chose strategies that were based on their social position. So first you saw the white guys going to the pharmaceutical companies and having lunch. Then you looked at the women, who couldn’t even get a meeting for two years — who had to fight for four years, and by the time they won, their leaders had died. Then you looked at the drug users, who were even messier. There were people stealing money, there were people overdosing. They had to purposefully get arrested while doing a needle exchange and stand trial to try to get policy to shift. Those three groups each had to pick different strategies because they had different accesses to power. The strategies were very divergent, but they all won.

So it would be a mistake to say that if you don’t have the white men you can’t win. But if the other people act like those men, they’re not going to get anything. Anyone can make change, but they have to use different strategies. That’s the lesson of the book.

Another thing I learned from Let the Record Show was that Jim Eigo created the slogan, “healthcare is a human right,” which activists still use today. Some ACT UP members thought the AIDS crisis was the perfect moment to demand universal healthcare. But others thought it was a better strategy to cooperate and build relationships with insurance companies and pharmaceutical companies. Was there tension between these perspectives?

One of the reasons that ACT UP was effective, and I think this is one of the most important lessons for us to learn now, is that the radical democracy of the organization allowed for a simultaneity of response. There was only one principle of unity: direct action to end the AIDS crisis. So it’s not like these strategies competed with each other. Rather, they empowered each other, because there were so many different approaches, campaigns, strategies going on at the same time. That is where the cumulative power actually lay. It’s not like the strategies were competitive.

So they were complimentary?

Until they weren’t. And then it all broke down. ACT UP fell apart at just the moment that it should have become a healthcare movement.

Do you think there was enough power there, at the time, to demand a national healthcare system?

It’s complex, because at the time, gay people were the weak link in the left coalition, because no one wanted to work with us. The reason why there was an autonomous gay movement in the first place is because nobody else wanted gay people. The left notoriously expelled gay people, and community groups and unions didn’t want us.

The AIDS coalition was really the first time that lots of different kinds of people, including gay people — openly gay people — were working in a dynamic way. There was this very loose, Big Tent movement that included Haitians and mothers and prisoners, drug users and homeless people, people who were born HIV positive, and when they each functioned on the level of what made sense to them simultaneously while standing with each other, they were at their most powerful. And when that broke down, they lost power.

So that coalition would have been able to move forward in some ways, but the problem was that, for everything that was won for people with AIDS, the issue of access was not won. Even though ACT UP was able to, in a sense, defeat HIV by forcing the creation of treatments that can control HIV disease, they couldn’t defeat capitalism.

Now we have drugs, not just for HIV, but for all kinds of things, but plenty of people can’t get them. If you look at Linda Villarosa’s work in the New York Times, in 2017, she showed that Black gay men in the U.S. South have a higher rate of HIV infection than any population in the world. In 2017, even though these drugs have been around since 1996. Because we [still] don’t have a functional healthcare system.

Have you seen It’s a Sin and Pose? I’m wondering how well you think they depict queer AIDS activism, particularly in contrast to early representations of AIDS, in which, as you write, “straight people were the heroes.”

They’re complicated because they have good things and then they have things that don’t work. Let’s start with Pose. The show revisited ACT UP’s action at St. Patrick’s Cathedral, in 1989, and when they reimagined it, they put Black trans women as people who got arrested inside the church. A trans woman was arrested inside that church. Her name was Kathy Otter, and she was a facilitator of ACT UP, so she had been elected by the floor to facilitate the meetings, but she was white. There were people of color there, but they were not trans. When the episode came out, two leaders of color from ACT UP, Moises Agosto and Robert Vazquez, posted on the Facebook ACT UP alumni page, “why are they inventing people of color instead of going to the people who really were there and historicizing us?” Which is a legitimate critique. Pose had a narrative goal, but in the process, trampled on people’s real experiences and contributions.

It’s a Sin has really good things in it. I love how young everybody is. I love how fun everything is, and it shows the freedom of getting away from homophobic families. But then it turns a very strange corner, in that every person who is HIV positive dies. It doesn’t help anybody to make a false claim like that. It’s so false, and it’s so ahistorical, and I don’t think anything is gained from that.

The other thing is that the only woman [character] is a basically asexual woman with no emotional life of her own, who is in service to everybody. That is completely ahistorical. There’s a myth that women were caretakers, but my research — I interviewed 188 people who were in ACT UP New York — shows that caretaking was not gendered at all. Men and women were equally caretakers.

That’s interesting, because I think there’s this myth that the lesbians took care of everybody.

That’s ridiculous. In my book, I describe straight women like Iris Long, who started the whole treatment movement. She was a straight scientist who called herself a “housewife from Astoria,” who had no gay friends and who came to ACT UP because she had worked on AZT as a scientist. She was very important. People like Karen Ramspacher and people like Karin Timour, who won insurance eligibility for 500,000 people. These straight women have never been historicized.

A powerful part of Let the Record Show is the discussion of the political funerals and the “ashes actions,” when bodies of people who had died from AIDS were carried through the streets and ashes were dumped at the White House. ACT UP made death and grief a collective public spectacle. In other movements in history, we see that witnessing violence and death — like graphic images from Vietnam or from the civil rights movement — tends to move the needle of public opinion. But among people my age and younger, there’s more squeamishness or reluctance about it, this idea that death imagery is too traumatizing to behold. I’m thinking about people wounded in mass shootings or in police violence, and what it would mean to force the public to confront it. I’m curious what your thoughts are on that and if you see ways that the activists now can incorporate those types of actions.

It’s complex; what’s clear is that Black people are raising the question of how much representation of violence against them they have to be subjected to for white people to believe that there needs to be a paradigm shift. That’s an important question, and it’s worth debating. My partner is a historian of American slavery. She just wrote an article on representations of enslaved people, and how those representations were used by abolitionist movements, which had both positive and negative consequences.

On the other hand, people have carried their dead through the streets when they are profoundly oppressed. In Palestine today, people carry their dead through the streets. There’s a connection to be made. It’s an act of desperation. When ACT UP first started, they used representations instead of real bodies. They had Die-Ins, they had people lying on the ground holding cardboard gravestones over their heads, but it didn’t work. And as people became more desperate, they eventually used real bodies. You have to understand the whole emotional experience. These were very young people. Extremely young. They knew they were going to die. And they asked for their bodies to be used in that way. And their friends fulfilled their wishes.

I want to make the connection to our current pandemic. There hasn’t been a radical grassroots response to COVID. There were so many opportunities where we could have organized for essential worker pay and protections, for monthly relief checks, for Medicare for All, and instead I noticed this reaction of retreat and turning inward.

That’s not really true. Last summer there were a lot of demonstrations. The focus was on police violence and anti-Black violence, yes, but the subtext was COVID.

That’s an interesting interpretation.

Access is always a question in the United States. And now we have a COVID-19 vaccine. I’m going to quote Steven Thrasher, who is one of my favorite journalists. He wrote a piece for Scientific American recently saying, “why, instead of talking about vaccine passports, why aren’t we talking about vaccine equality?”

Our goal now needs to be the global sharing of vaccine resources. When more people are vaccinated, the idea of a global share policy will become more popular.

I have to ask about Dr. Fauci’s role in this story.

I wrote and submitted the book before the second coming of Anthony Fauci, before he was turned into a god. So I really wasn’t thinking about it.

But during the 1980s and 1990s every time ACT UP interacted with him, he was an obstacle. It was only when ACT UP was doing actions that he responded. When women went to him and said, “Women are dying and they’re not even qualifying for an AIDS diagnosis because the [CDC] definition is inadequate,” Fauci didn’t care. He only cared about men. When Richard Elovich confronted him and said, “what about IV drug users,” Fauci said, “Oh, they’re non-compliant.” Every time ACT UP brought real life issues for people with AIDS to Fauci, he said “no.” And it was only through an incredible amount of direct action, including breaking into his office, putting weird things in his files, surrounding his building, that he was forced to let ACT UP be at the table. That should not be forgotten.

The media is making Fauci into a hero, but it’s not historically justified. He has given in on everything, but we made him give in. And he managed to stay in power, which tells you a lot about him already. He could have stepped off the podium during Trump’s period and tried to organize a grassroots response to COVID, but he didn’t.

These bureaucrats are not beneficial. They do not do things that are beneficial to the population, they do things because they have to. This is an old idea. Martin Luther King said it — you have to force the powers that be to concede. They don’t concede on their own.