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ACT UP changed AIDS activism. Sarah Schulman wants us to learn its lessons

Sarah Schulman had already been covering AIDS as a journalist for five years when she attended a 1987 demonstration organized by the newly-formed AIDS Coalition to Unleash Power, better known as ACT UP.

ACT UP members picketed outside New York City’s Memorial Sloan Kettering Cancer Center for 72 hours in protest of the sluggish pace of clinical trials for new treatments. They stayed silent the entire time, so as not to disturb patients.

Schulman was amazed by the group’s uncompromising tactics.

“How many people do you know right now who would do a 72-hour picket?” she asked in a recent Zoom interview. “And then the fact that it was silent was so considerate. I loved everything about it.”

In its heyday, from 1987 to 1993, ACT UP achieved astonishing changes in public policy, mostly through direct actions like the one at Sloan Kettering. Members pressured the Food and Drug Administration to implement a fast-track system that gave AIDS patients access to unofficial drugs. They convinced the Centers for Disease Control to widen the definition of AIDS to include symptoms that only women experienced, making hundreds of thousands more people eligible for benefits and clinical trials. They ran underground needle exchanges in New York City until the government legalized them. And that’s just the beginning.

Schulman, who was a member of ACT UP in addition to covering it, began collecting oral histories of surviving members in 2001, working alongside the documentary filmmaker Jim Hubbard. Two decades later, those interviews form the basis of her recent doorstopper history of ACT UP, “Let the Record Show.” The book is an attempt to bear witness to the massive failures of policy and empathy that necessitated the movement’s existence. Narrated by a chorus of artists and executives, single mothers and drug users, it’s also a political primer, sifting through the movement’s strategies — which ranged from self-taught study groups that identified potential treatments to theatrical “die-ins” at government buildings — in search of lessons for today’s activists.

I talked to Schulman about the choice to venture into oral history and the kinds of AIDS stories she’d like to see told today. The following conversation has been edited for length and clarity.

One thing that many of your interviewees bring up is the sheer relief of stumbling into ACT UP, this place where you could have HIV and still be proud and joyful and sex-positive. Why did it mean so much to people?

For gay people in the ’80s, it was a time of profound oppression. Right before ACT UP was founded, the Supreme Court upheld Bowers v. Hardwick, which upheld the sodomy laws. In New York City there was no gay rights bill, so could be fired from your job or kicked out of an apartment. If your lover died of AIDS, you couldn’t inherit the apartment because there was no relationship recognition. You could be kicked out of a restaurant, which happened to me twice. Familial hobophobia was the norm. Gaybashing was a form of entertainment — people would come into Manhattan to go to the West Village and beat up gay people, and of course you couldn’t go to the police. And then, you get AIDS on top of that.

ACT UP was founded in 1987, several years into the AIDS crisis. What made it different from organizations that came before?

Sarah Schulman.

Sarah Schulman. Image by Drew Stevens

I think it attracted a different kind of person. The number of people who joined ACT UP was quite small. Even though the meetings were packed, it was about 300 to 700 people, and the largest demonstration had 7,000 people. It wasn’t a mass movement, it was a tiny little vanguard. And it’s remarkable how effective they were.

Was there a lightbulb moment when you realized you were going to write this book?

I really had no intention of doing this. I’m a novelist, and I have other projects I’m doing. But the myth-historicization around, let’s say, 2012, got so severe. Suddenly there was a period where everything was “Larry Kramer is the leader of ACT UP,” or “Larry Kramer, the founder of ACT UP.” He was neither the founder nor the leader. So that was scary, and then this work came out that picked four or five individuals and said, “Oh, these five white people are the ones who made everything happen.”

Are you talking about the documentary “How to Survive a Plague?”

Yeah. The people that were singled out there are in my book, too. They did great things. But I covered 140 people, because it’s impossible for five individuals to accomplish what ACT UP accomplished, and activists need to know that. You have to get along with people you don’t agree with. You have to have big tent politics to have a paradigm shift. And if you think that five people are going to make the changes, you’re going to lose.

By 2012, when this individualistic narrative started emerging, you’d already been collecting oral histories for over a decade. What did you initially think would happen to them?

2001 was the 20th anniversary of AIDS being identified. I was listening to the radio, and a guy says, “At first, America had trouble with people with AIDS. But then they came around.” That’s not what happened. In America, we tell this fake story about how the dominant culture is so benevolent and just naturally progresses. The truth is that people fought until the day they died to force the country to change against its will. Jim Hubbard and I realized there was a crisis, and he and I felt a lot of responsibility to our dead friends. So we thought we’d just create this raw data, put it online for free, and academics would analyze it. But they never did. So I took three years and I just did it.

ACT UP at the New York City Pride March, 1989.

ACT UP at the New York City Pride March, 1989. Image by Courtesy of Farrar Straus and Giroux

When you first started asking people for interviews, how did they respond?

The vast majority of people hadn’t talked about AIDS in years. Most people hadn’t been interviewed. For example, Karen Timour — she’s a straight woman who joined ACT UP because she thought she might get some friends. And then someone said, “Is anyone going to work on insurance?” And she said, “Sure,” and she ended up masterminding this five-year national campaign — without email, this is all snail mail — that removed HIV as a preexisting condition for private insurance. She made hundreds of thousands of people eligible for insurance. How many lives did she save? When we talked to her, she had never been interviewed. And that was very typical.

In the book, you write about consulting Holocaust testimony as you prepared for this project, especially the Fortunoff Archive. How did that shape your approach?

What we liked about the Fortunoff archive was that they asked each person who they were before the Holocaust. We wanted to individuate all the people in order to ask what they all had in common.

What did you find out?

I interviewed this actress, Rebecca Cole. She told me that she’d been working at a bar, and people said that this thing called the AIDS Hotline was hiring people for $10 an hour. She needed $10 an hour, so she took the job. This is a time when nobody knew what caused AIDS, there were no treatments. If someone called the hotline with a question, the people working there, who were these rando actors, had no answers. The whole thing was an act of absurdity.

This woman calls and says, “I have AIDS, and I want to do an experimental drug trial, and they won’t let women in.” So Rebecca starts calling all these drug trials to find why they don’t take women. The reason for this is that in the ’60s there was a drug called thalidomide, which was given to pregnant women and caused a lot of them to have children with no limbs. Pharma had to pay out millions of dollars in settlements, so they banned women from experimental drug trials. Rebecca thought this was wrong, so she and a friend called the CDC and made an appointment and said, “This is wrong.”

That’s phenomenal — and that’s when I got it. What these people have in common is not experiential, it’s character. They are a kind of person who cannot sit back in the moment of cataclysm. They cannot be bystanders.

”Let the Record Show” is about protest tactics, and it’s coming out after a year of extraordinary political protest. What lessons does ACT UP have for today’s activists?

ACT UP wasn’t a consensus-based movement, so you didn’t all have to agree. If you wanted to do an action and I didn’t agree with you, I would certainly argue with you — this was pre-gentrification New York culture, so lots of arguing and confrontation — but I wouldn’t try to stop you from doing it. I would find other like-minded people, and we would do what we wanted to do. This creates a radical democracy where lots of different people are doing campaigns in different social milieux. It creates a simultaneity of response.

The second thing is that ACT UP created its own solutions. We became the experts on the issues, whether it was housing, needle exchange or drug research. ACT UP would design the solution and present it to the dysfunctional power structure, and when they rejected it, ACT UP would do nonviolent civil disobedience that conveyed to the media what the solutions were. Just getting people to a demonstration doesn’t do anything. You have to have demands that are reasonable, winnable and articulable.

ACT UP members at the “Storm the NIH” action in 1990. Image by Courtesy of Farrar Straus and Giroux

I read “Let the Record Show” alongside your novel “Rat Bohemia,” which takes place in the midst of the AIDS crisis. I’m really struck by the similarity between the protagonist of that novel’s determination to be “a witness to my own time,” and your own sense of responsibility for collecting and telling these stories. Have you always felt that obligation?

Definitely. I was born in 1958, 13 years after the end of the Holocaust. All of my grandparents were refugees. My mother’s mother had two brothers and two sisters exterminated, and my mother’s father had a sister who was murdered at Babi Yar. I read “The Diary of Anne Frank” at age six, and that was very much about witnessing. That’s been there from the beginning.

It’s interesting to hear you say that, because your book also challenges the notion that Jewish culture endows us with certain social values. So many of the activists you interviewed were Jews, and they often lacked any kind of familial support.

In my generation, the post-Holocaust generation, we had certain social justice values because of how people understood themselves. However, the homophobia was virulent. I think that’s why there were so many Jews my age or older who were leaders in the gay movement. People had been trained for leadership, but then they had no place in the Jewish community or the Jewish family. If people wanted to be out, the only place they could be respected was the queer community.


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