It’s fascinating to watch how traumatic and fraught events get historicized, isn’t it? Think the Holocaust. Think the Vietnam War. And think the U.S. 1980s and ’90s AIDS crisis and the furious activism that rose up to meet it. Only in the past decade have we started seeing major nonfiction works of film or publishing take on that seismic era (which, we should point out, is not over). First, we had David France’s Oscar-nominated 2012 documentary How to Survive a Plague, centered on ACT UP New York, and, a few years later, his massive book of the same title, a more detailed account with a strong focus on HIV drug development, less so on the societal side of AIDS such as drug use, homelessness, and racial inequities.
And soon, starting May 18, we’ll have Let the Record Show: A Political History of ACT UP New York, 1987-1993. The 20th title from acclaimed author, activist, and ACT UP alum Sarah Schulman, the book is the culmination of 20 years’ worth of in-depth video interviews with nearly 200 ACT UP alums. Organized not chronologically, like France’s book, but by ACT UP’s myriad campaigns and subgroups, the book is an exhaustive compendium of oral history, bound together by Schulman’s insights into what made ACT UP unique among activist movements, why and how it both succeeded and failed, and what modern-day movements can learn from it.
As an avowed ACT UP junkie, I devoured Let the Record Show in a few weeks, despite its massiveness. Never before, including in the documentary film United in Anger, has ACT UP been portrayed with such multifaceted, granular attention to how each and every major campaign played out. It’s less a Schulman polemic and score-settler than a deeply generous platform for nearly every ACT UP member’s personal story, motives, and recollections to be told in one place, adding up to an enthralling mosaic of biography, collaboration, and, often, conflict. It’s often funny and deeply moving, thanks to both Schulman’s voice and the many others she orchestrates here. As Schulman herself pointed out on the call, it’s a “yearbook” of sorts for the hundreds, if not thousands, of people from disparate backgrounds who came together at a particular time and place to fight back in a time of profound terror and frustration. And it’s an intriguing but plainspoken dissection of what makes movements work, or fall apart, at a time when the work ACT UP did some 30 years ago seems at once impossibly difficult (no cell phones, email, or internet!) and also impossible to imagine getting away with today, including public figures who were actually shameable and federal buildings that were easily breached.
TheBody talked with Schulman about her magnum opus, how she constructed it, and what purpose she wants it to serve in the world.
Tim Murphy: Hi Sarah! Congratulations on finishing this massive tome. So first of all, I wanted to ask, in the book’s final pages, you reveal that in recent years, you have been struggling with a health condition. How are you doing now?
Sarah Schulman: Yes. I found out I have the JAK2 gene, a somatic mutation where your cells multiply too quickly—a very bizarre, weird thing. It started when I had a yoga accident. They took an X-ray and said, “Oh my God, you have a huge lesion on your bone—you have bone cancer.” I was like, what? They opened my shoulder and found there was a huge clot there. A few years later, I was having trouble breathing and they found out I had 10 blood clots in my lungs. I also had to have surgeries on my legs. I have a better grip on it now, but it requires permanent, constant maintenance. I take a low dose of chemo every day. I’m in stage 2, and stage 4 is leukemia, but my progression is really slow, so I just might get away with it.
But then again, who could be better prepared for this than me? A strange illness that the patient has to figure out by reading medical journals and figuring out clinical trials. It was all incredibly familiar. And then at NYU I have an older nurse who started there in the 1980s, and we end up talking about AIDS, these two little old ladies...
Murphy: Right, and of course as I read about it, and even your extreme difficulty walking down the street and getting up the stairs in your apartment building, one cannot help but think of what so many people in the East Village, where you live, went through in the ’80s and ’90s with AIDS. It was a strange, poignant echo of the whole book. Well, glad to hear you’ve got it somewhat under control now, so let’s talk about the book. How long in total did you work on it?
Schulman: It really started when Jim Hubbard and I started the ACT UP Oral History Project in 2001 and over the next 18 years did interviews with 188 surviving ACT UP members. In the ’90s, the internet revolution eclipsed ACT UP—nothing from ACT UP was digitized—so when people started going on the internet, there was nothing there. People writing dissertations on ACT UP and AIDS activism were using The New York Times for their sources, coming away with the idea that, you know, “At first Americans had problems with people with AIDS, but then they came around.” And Jim and I thought, “This cannot be the way that this story will be told.”
So we started interviewing people and making the interviews available. We asked for $25,000 in funding from the Ford Foundation, but at the time, [longtime LGBTQ activist] Urvashi Vaid was working there. She asked us to rewrite the grant and gave us $300,000, so this was really her vision. The money went to everything—the camera, software, transcriptions, the website, broadband, office space, travel.
Only a few people refused interviews. Then Jim collected 2,000 hours of archival footage, on all sorts of different formats.
Murphy: Right, which led to your 2012 ACT UP documentary United in Anger. So then why the book, too?
Schulman: We put all this archival stuff out there, and no [writer] really did anything with it, analyzed it to see the tropes that were revealed. So finally I wrote a proposal, and FSG [the publisher Farrar Straus & Giroux] bought it.
Murphy: So the book is structured not in a traditionally chronological story but more by theme—ACT UP’s big campaigns or facets, such as drug development, expanding the official definition of AIDS to include women-only symptoms, needle exchange, housing for homeless people living with HIV, the Latino movements within ACT UP, the art and video work within ACT UP. Why that structure?
Schulman: I felt like if I told it the traditional way, you wouldn’t get the true story. I started going through the interviews and noting tropes or themes every time I would see them. So, for example, there are three sections on Latino involvement in ACT UP because there were actually three Latino movements. I wanted to show the depth. And I decided to end it in 1993 because I didn’t want to end it with the “happy ending” of protease inhibitors arriving in 1996. Because [even though ACT UP never disbanded and is still active today, as she notes at the start of the book], a particular era of ACT UP ended in 1993, and I wanted to show how crazy and desperate everyone was at that point, organizing political funerals and riding around in vans with the bodies of their dead friends. I wanted to convey what the suffering was like at that point.
Murphy: How do you feel about having finally finished the book?
Schulman: I’m proud of how fair it is. People in and out of ACT UP have had a lot of anxiety about this book, thinking, “Oh, she’s gonna bitch slap the white gay men who were in ACT UP,” but that’s not what it is at all. I did this book in a fair way that’s not oriented toward nostalgia but toward people who want to make change right now.
Murphy: So if you had to boil down this massive tome, what would you say are the takeaway messages you want to get across as the book comes out into the world soon?
Schulman: One thing is that ACT UP’s greatest achievement by far was forcing the CDC to change its definition of AIDS [to include symptoms experienced primarily by women, which opened up women to disability benefits, more research opportunities, etc.]. ACT UP fought for that for four years and finally won. And as [fellow activist] Terry McGovern says, if you look at AIDS timelines, you’ll see Rock Hudson but never when they expanded the CDC definition.
Message #2 is that people pick political strategies based on their social position. Because Larry Kramer went to Yale with the head of [drugmaker] BMS, he could bring people like [ACT UP alum and then Treatment Action Group founder] Mark Harrington to a catered lunch at BMS. But it took the women in the group two years to get meetings [with government and pharma officials]. Then you take the wildest group of all in ACT UP, the drug users. They were messy, but they also won [the right to legal needle exchange in New York City]. So whoever you are, you can win, but you have to work much harder and be messier if you don’t have access to power.
Message #3 is that perfect consensus does not work—and that’s important to know now, because we’re in a time that’s extremely moralistic with an emphasis on homogeneity of analysis, strategy, and language. What works is what ACT UP did, which was to create a big tent, a radical democracy in which people are allowed to respond from where they’re at. If your movement facilitates what people need to do, you have a better chance of succeeding.
Murphy: Can you give an example of what you mean by our current times?
Schulman: I mean that theoryism is irrelevant. Your theory should emerge from your actions, which then reveal your values. Take the current argument: “Lesbians are disappearing because so many people are becoming trans[gender].” That’s idiotic. The question is: People who actually exist, do they have rights? And if they don’t, how do you protect them? That’s what matters, not endless battles about theoretical positionings. What are people’s real material living conditions? When you’re running a campaign, you want to make demands that are reasonable, winnable, and doable. ACT UP presented solutions [to people in power], and when [those people] said no, ACT UP did nonviolent civil disobedience to force them to listen and accommodate. That’s so much better than begging authorities from an infantilized position to solve your problems.
And also, a coalition is not a Benetton ad where you have, like, one Latino and one Black person. It’s where you have silos of like-minded people who are working together effectively.
So all of these pieces of information, I think, are essential for people who are doing work today, and are the central arguments of the book.
Murphy: What was the hardest part of writing the book?
Schulman: How to deal with the dead people. There are so many people I never got to interview. How to evoke them.
Murphy: Meaning how to be honest about them but still respectful?
Schulman: Meaning how to represent people who were very influential and beloved. So I tried to replicate the experience of death in ACT UP, which was that sometimes your best friend died and sometimes someone died who you’d only seen once. So that’s why each chapter ends with an “In Memoriam” [survivors’ memories of late comrades], to reflect that.
I also had to figure out the art side of ACT UP. Because, at the time, if you looked at galleries, you saw white people, but if you looked at nightlife, you saw people of color.
Murphy: What was the most rewarding part?
Schulman: The photos—so many that nobody’s ever seen, such as the Latino Caucus in Puerto Rico at the time and then their 30th reunion photo. Or seeing [the late] Katrina Haslip with Terry McGovern, who looks like she’s five at the time but was actually 29.
Murphy: In all your years archiving and historicizing ACT UP, long after you’d actually been in it, did your feelings about it evolve?
Schulman: Definitely. Most people in ACT UP only knew what they and their friends in the group did. They think that that was the center. So to create this overview was a real accomplishment. The big question I was trying to answer was: What do all these different people have in common? Was everyone raised with some sense of community? But that didn’t pan out. We thought it might be everyone having had a traumatic experience with AIDS. No. People came to ACT UP who did not know anyone with AIDS. It was only in Year 8, when I was interviewing Rebecca Cole, an actress who came to ACT UP with no ties to AIDS, that I realized: “Oh. Coming to ACT UP is not based on an experience. These are people who cannot be bystanders.”
Murphy: But of course there were people who came to ACT UP primarily motivated to save their and their friends’ and loved ones’ own lives. Peter Staley has said he probably never would’ve left Wall Street, come out of the closet, and joined ACT UP if he hadn’t been diagnosed HIV positive.
Schulman: But plenty of people like Peter never came to ACT UP. Most PWAs [people living with AIDS] never did anything [activistic].
Murphy: One thing that really stood out for me was how many people in ACT UP—not all, but many—had gone to very elite schools. Yale, Oberlin, Wesleyan, Harvard, etc. Why do you think so?
Schulman: It’s true that the elite Whitney Museum Study Program was a big feeder into ACT UP of many of the art and video people. But overall I don’t think the elitism is that overwhelming. Many people were coming from working- or middle-class backgrounds even if they went on to elite schools. People who go to those fancy schools are more likely to tell you so. Also, this was New York—it attracts ambitious climbers with dreams.
Murphy: You say early on in the book that you were a “rank and file” ACT UP member—never leadership. Why so?
Schulman: I didn’t really identify that much with the people there. I was doing a lot of other things. I was writing novels. I had already been active in the women’s reproductive rights movement and was brought into ACT UP by Maxine Wolfe. But I went to the Monday meetings and the major actions, and was arrested twice. There were a thousand people like me [who were members but not lead organizers].
But I went to ACT UP because it was effective. Maxine and I had been kicked out of the reproductive rights movement in a lesbian purge, and that was painful. I realized that, in ACT UP, I would never be kicked out because of homophobia. And they had resources. I’d work a table for ACT UP and people would just hand over $20 bills. They had men’s money. You could do a lot more. It was privilege and principle meeting in the same room for the first time.
Murphy: Did you have a favorite campaign in ACT UP? Was it the women’s CDC definition campaign?
Schulman: That’s the most important by far. But I also loved the creative things that the Action Tours [ACT UP affinity, or breakout, group] did, like the “Santa Has HIV” action at the holidays.
Murphy: I love how you tell us in the book who people were and what they were doing at the moment they came into ACT UP—an artist, a Wall Street broker, women with AIDS coming right out of prison, etc. What about you? Who were you in 1987?
Schulman: I was 28, someone who’d already been covering AIDS [for publications including The Village Voice and The New York Native] since 1982, so I had opinions and information and movement experience. I was impressed that women came into leadership so quickly in ACT UP. People were so desperate that they would actually listen to lesbians.
Murphy: Much of the book is told as verbatim oral history, but I still found concerning a few instances where someone makes an allegation of someone and it does not appear that you went to that other person, among the surviving people, and asked them for comment. Such as someone saying that [filmmaker] Jennie Livingston kicked out her HIV-positive roommate [the late] Ray Navarro because he had TB, or Charles King saying that Larry Kramer [who died only last year] made racist, or at least “racially insensitive,” statements on the ACT UP floor.
Schulman: I didn’t ask any [of those alleged against] to comment. I just took the interviews. And those things are true, believe me.
Murphy: That’s not the point—it’s that you didn’t ask those people to comment, to defend themselves.
Schulman: Sorry, I’m not agreeing with you on that.
Murphy: Fair enough. So I wanted to ask you what you thought of David Dinkins, who was mayor 1989 to 1993, a big chunk of your book’s span. How would you rate him on AIDS?
Schulman: He appointed the city’s first LGBT liaison, Marjorie Hill. But he was a frightened guy who was scared of everything, including needle exchange. Can we talk about Anthony Fauci though? This book was submitted before the second coming of Anthony Fauci [as a COVID hero]. But in this book, every time he is mentioned, it’s somebody saying, “We went to him and asked him to do something, and he said no.” Parallel track [to allow more people with HIV into otherwise rigid drug trials], IV drug users—over and over, he said no. It was only when we forced him by major embarrassing actions such as breaking into his agency’s offices, that he changed. The fact that he’s since been reconstructed as the hero of AIDS is kind of crazy.
Murphy: And I wanted to ask you about just that, because it seems as though many of ACT UP’s successes hinged on the fact that people in power could still be shamed, publicly exposed as negligent or indifferent. All the shaming in the world did little to stop Trump and his enablers, the past four years. Do you think shaming as a political tool has lost its power?
Schulman: Well, I would put it differently. I don’t like the word shaming. I would say resistance. Take Larry Kramer. The best thing about him was that he was a rich man with a lot of connections, and he yelled at those people. And that’s what did not happen in the Republican party the past four years. People with access to power have to give up their personal ambition and risk alienating people in power by talking to them honestly in a public way.
Murphy: I was very struck in your book by the sub-drama of Derek Link, an ACT UP member who for years told other, HIV-positive members of the group that he, too, was HIV positive, but in fact wasn’t. Perpetuating such a Rachel Dolezal-like fraud would seem to be grounds for cancellation from his peers, but I did notice on Facebook that all his friends and loving commenters are many, many fellow ACT UP alums.
Schulman: That’s ACT UP. People are very bonded. People who disagreed about everything still love each other, because we did this thing together and made a difference, and there’s very few people who can say that. I don’t even look at Derek as a fraud. I think there was a lot of trauma and he thought it was inevitable that he was going to get AIDS. Quite a few people in ACT UP or AIDS activism or work seroconverted much later.
Murphy: You spend a lot of time in the book on the tensions that led to about 12 people, the treatment wonks, leaving ACT UP and starting the more private Treatment Action Group [TAG], which would meet privately with pharma and government officials like Fauci. And many people have said that this was the end of a powerful era for ACT UP, even though of course the group continued on, and though some people were in both TAG and ACT UP. And you really give everyone their voice on the split and some of the tense things that led up to it, and you say that you yourself remained agnostic. But let me ask you: How might things have played out if they hadn’t left?
Schulman: I think [the treatment wonks] would’ve had to adjust the way they were doing things. If they had stayed and said, “We really do care about women with AIDS [the treatment wonks were seen as this not being a focus of theirs] and equal access, but we also have strong feelings about what we want to pursue, so let’s reorganize so we can address this ...” then I think ACT UP’s next strong campaign would’ve been the fight for universal health care [which many in the group had prioritized]. But everyone in the group was crazy by that point, and I think it might’ve been too much to ask. Maybe if we’d all had good therapy, we could have evolved into a health care movement.
Murphy: Let me ask you another theoretical. What if, from about 1987 on, there hadn’t been an ACT UP? How might things have played out?
Schulman: There wouldn’t have been needle exchange or housing for homeless people with AIDS in New York City. The CDC definition [to include women] definitely wouldn’t have been changed. Also, ACT UP forced a focus on [treatments for] opportunistic infections [caused by AIDS], which kept people alive longer so that they were there when the good meds came [in 1996 and beyond].
Murphy: Would some of that have happened anyway?
Schulman: I don’t know. I do know that people who were in ACT UP who have lived would’ve died, because they wouldn’t have had access to the cutting-edge treatments. Also, ACT UP pushing parallel track [for drug trials] was crucially important, getting rid of restrictions like having to give up one drug to take another, trying to get rid of trials with a placebo [fake drug] arm was important. And of course one of the greatest treatment accomplishments that a faction within ACT UP almost stopped was proving the efficacy of AZT as a drug to prevent women from passing HIV to their babies.
Murphy: OK, final question. I know you did not write the copy on the back of the book, but it says that ACT UP “changed America forever.” Do you agree?
Schulman: It changed me. It showed me that a movement can succeed.
Murphy: But do you think it changed America?
Schulman: As stigmatized as HIV still is, America has changed from a time when people were firebombing the homes of kids with hemophilia because they had AIDS, to where we are now—and how gay people are viewed now. And ACT UP changed the way that PWAs and gay people saw themselves, and it’s changed our presence in the media. What’s happened with that presence since is kind of pathetic. It’s become very middlebrow. Which is why this is a story that still needs to be told accurately.