How to Survive a Movement


ONE NIGHT IN 2010, the writer Sarah Schulman was at the Manhattan gallery White Columns for the opening of a show she had helped create about the AIDS Coalition To Unleash Power, or ACT UP, the AIDS-activist organization she was a member of from 1987 to 1992. In her 2012 book The Gentrification of the Mind, Schulman writes of the evening as a kind of reunion for the group, with the ACT UP-ers, mostly in their fifties and sixties, “laughing and smiling and hugging and flirting,” all wearing the scars, physical and psychic, of the traumas they had endured together during the worst of the AIDS crisis. But Schulman’s eye was drawn away from her own cohort and toward a separate crowd, “also hanging out, talking, flirting, happy, excited, but the two worlds were not mixing.” These were younger gay people, in their twenties, there to see the exhibit about an era they had not been present for. “Before me I saw two distinctly different experiences, separated by the gulf of action fueled by suffering on the one hand, and the threat of pacifying assimilation on the other,” she writes. Later, she returns to the subject: “The younger people loved ACT UP. But in some fundamental way they couldn’t relate to it.”

Let the Record Show: A Political History of ACT UP New York, 1987–1993 is Schulman’s fifth nonfiction book about AIDS, and it can be understood as an effort to bridge this generational divide. The book is based on Schulman and Jim Hubbard’s ACT UP Oral History Project. Over the course of two decades, Schulman and Hubbard interviewed 188 ACT UP New York members about their experiences in the group. In the book, Schulman quotes, paraphrases, and summarizes these interviews, creating a mosaic-like portrait of the organization, told from many different perspectives, over its most active and influential years. Let the Record Show is intended partly as a manual for young activists who might seek to re-create ACT UP’s victories. Schulman lays out the group’s tactics, attributing ACT UP’s success to “a strategy of difference facilitating simultaneity of response.” In other words, the coalition brought together people from many different groups, uniting those with different skill sets, constituencies, and perspectives into one agenda: to combat the AIDS crisis.

Most mainstream accounts of the AIDS years—Philadelphia, Angels in America, even David France’s 2012 documentary How to Survive a Plague—tell the story of the crisis from the perspective of white gay men, who are presented as either the sole heroes of the moment or as vehicles for straight people’s moral edification. Schulman hates these stories. Let the Record Show is a corrective intervention in AIDS historiography, attempting to revise the popular understanding of ACT UP to make it both more democratic and more accurate. Schulman emphasizes the contributions of men of color, like the luminary artist Ray Navarro; of women of color, like the advocate for incarcerated people with HIV Katrina Haslip; and of lesbians, like the radical feminist Maxine Wolfe. Theirs is the ACT UP she wants younger activists to learn about.

The erasure of such voices from ACT UP’s history is complicated by the fact that during the group’s heyday, gay people were much less visible in general. AIDS was first reported in America in 1981, a time when many gay adults found it preferable to remain in the closet. People didn’t think about gay rights very much, unless they were gay themselves; many straight people assumed they didn’t know any homosexuals. AIDS ruptured this state of affairs dramatically. As it spread, the once-concealable stigma of homosexuality became brutally visible. Men were outed by their own bodies when they developed sores or thrush, or when they started losing drastic amounts of weight. Some tried to hide the Kaposi sarcoma lesions on their skin with makeup.

Even for those who were not yet sick, AIDS made the closet untenable. Peter Staley, a twenty-four-year-old trader at J. P. Morgan, learned that he was HIV-positive in 1985, after he couldn’t shake a cough. But he stayed in the closet at work. When he walked into his office on Wall Street one day in 1987, an ACT UP activist handed him a flyer; the group was there conducting one of their first-ever actions. On the trading floor, “there was this argument going on about AIDS because of this flyer,” Staley told Schulman. “And [my mentor] was saying to one of the saleswomen—Well, if you ask me, they all deserve to die ’cause they took it up the butt.” Staley joined ACT UP not long after. Eventually he quit his job, and became an AIDS activist full time.

ACT UP members march in the Gay Pride Parade, New York, June 1989. T. L. Litt
ACT UP members march in the Gay Pride Parade, New York, June 1989. T. L. Litt

When the group first formed in 1987, there was only one HIV drug on the market: AZT, a treatment that was supposed to slow the progression of the virus. It didn’t work, it had horrible side effects, and it cost $10,000 a year. Reliable information about AIDS was scant, and public-health messaging emphasized prevention, not treatment. Those who were already infected were confused and scared. People in the know could try to get illegal and off-label drugs from one of the underground HIV pharmacies that were set up by gay groups. Others experimented, trying treatments they hoped might work without much evidence. In their interviews, several of Schulman’s subjects mention AL-721, an egg-lipid compound that men were spreading on their toast. It tasted disgusting and didn’t do anything, but the California health-food hippies who sold it claimed it would bolster the immune system. If you were lucky, your body held out, and you had time to wait for real medicine to be developed. If you weren’t lucky, you died.

In the early days of ACT UP, its most vital role was as a hub for information about potential treatments. People joined because they wanted to stay alive. The group’s Treatment and Data Committee (T&D) began researching drugs that were in the testing pipeline. Iris Long, an aging, straight research scientist with advanced degrees in organic chemistry, joined ACT UP when she found herself between jobs and bored with life as a housewife in Queens. She gave the Treatment and Data Committee a rapid and robust education in clinical science, and before long they were getting meetings with Anthony Fauci, then directing HIV research at the National Institutes of Health (NIH), pressuring him to help get more drugs to market. Soon, T&D included some of the leading experts on HIV treatment—not only in ACT UP, but in the world. They focused their efforts on one of ACT UP’s early mottos: “Drugs into bodies.”

Still, when the treatment activists came back to report to the general meetings of ACT UP at Manhattan’s Lesbian and Gay Center on Monday nights, they were delivering mostly bad news. Gregg Bordowitz “recalled how one guy at a Monday-night meeting came up to him in the hallway, extremely gaunt and wasted and wanting to talk about cryptosporidiosis . . . and what was available. . . . ‘I said, These are the alternatives. Nothing seems to work very well. It was clear that he was going to die soon of this, and he did.’”

Many of the T&D group were men from middle-class white families and expensive private schools. They had backgrounds that made them legible to the research scientists, health regulators, and news editors in charge. David Barr was a lawyer; Mark Harrington went to Harvard. Powerful people who wouldn’t meet with others would meet with them.

But though ACT UP had a core of mostly white, male treatment activists who were able to command respect from institutional players, it also had an enraged and grieving rank and file without that kind of access. These were not people who would have been invited to a meeting with a nice catered lunch at a pharmaceutical giant’s headquarters, but they had other skills they could bring to the cause. Virtually all members of ACT UP were given civil-disobedience training, and they used it. They blocked traffic at city hall. They took over Grand Central Station and closed down the Midtown Tunnel. They stormed the Food and Drug Administration (FDA). They stormed the Centers for Disease Control and Prevention (CDC). They stormed the NIH. People jumped over police lines and got beaten up. They were arrested in the dozens, and carried out on stretchers when they went limp. As they were loaded into paddy wagons, they screamed out defiant slogans for the news cameras.

Amid the solemnity, seriousness, and grief in ACT UP, this side of the group also made room for tremendous and unexpected joy. The actions were deliberately irreverent, and the group’s anger was often conveyed with an arch, mocking humor. Activists threw fake hundred-dollar bills when they took over the New York Stock Exchange. They marched a giant inflatable phallus with the words CARDINAL O’ CONDOM down the block in front of St. Patrick’s Cathedral, taunting the anti-gay Cardinal John O’Connor inside. If the T&D group were looking to cure HIV, this other ACT UP was partly seeking an antidote for shame. After the actions, people went drinking and dancing together. Bed-hopping was giddy and prolific. Seemingly everyone had a crush on Bordowitz, who in one interview referred to the Monday-night general meetings as “a bazaar of desires.” For many, the sexuality and the political ambition of the group were tied up in one. People were drawn to each other’s ideas, their moral vision, their hopes for a better future. For others, sex became an enticement to politics. Several of those interviewed said that they were recruited to ACT UP after being approached at gay bars by cute boys. Want to see me again? Come to this meeting on Monday.

The proximity of sex and death is part of what makes AIDS, like abortion, so fascinating, and also what makes it prone to sensationalism and misunderstanding. In Schulman’s telling, this joyfulness and sexuality does not read as indifference to the suffering of the sick, or obliviousness to risk (among other things, it becomes clear that there was widespread use of condoms). Instead, it paints a picture of activists not as martyrs, but as real people, living out the full spectrums of their emotional lives while also trying to meet the demands of history. This is part of Schulman’s project: to demystify ACT UP. The more its membership is understood as a group of plausible human beings, the more that it seems possible that what they built could be built again.

In the early actions, Schulman writes, “the roles of Insider and Outsider (i.e., face-to-face negotiator and in-the-streets demonstrator) were played by the same people.” But over time, these roles began to solidify: “Some members of T&D were of the same demographic as the corporate suits, and as a result the relationships between them deepened.” Still, the insiders relied on the outsiders. In their negotiations with the pharmaceutical company Burroughs Wellcome, “T&D used the executives’ fear of the Outside, the ACT UP of women, radicals, and people of color, the street activists who could turn out in large numbers and to whom the corporate men could not relate.” A distinct, if unspoken, strategy emerged: ACT UP paired private, inside respectability with massive, theatrical, and rude outside pressure, all centered around specific demands to alleviate the suffering of people with HIV and AIDS.

This strategy, repeated against various targets, proved remarkably effective. The variety of drugs available, the number and kinds of people who were enrolled in trials, the direction of research and the targeting of funding—all of this was shaped by ACT UP. The group’s demands brought about a radical paradigm shift in a short span of time: pharmaceutical companies, regulatory agencies, and the media started to take the AIDS crisis more seriously. These victories were achieved by combining the honey of lobbying with the vinegar of protest.

You could say that this inside-outside strategy united the two strains of emancipatory thought that have historically characterized the gay movement: the rights model and the liberation model. The liberation model understands gay people’s exclusion from straight society as a source of integrity and strength, a status that allows them to become insurgent outsiders, productively challenging unjust hierarchy and received wisdom. This vision had been ascendant in the ’70s, embodied famously in the 1969 Stonewall riots, and later in lesbian separatism and in groups like the Gay Liberation Front and the Lavender Hill Mob. The liberation model is confrontational, anti-institutional, and anti-assimilationist. This was perhaps the vision that ACT UP exemplified when it was at its most antagonistic and angry.

The rights model sees gay people’s exclusion as needless and cruel, and it works for their integration into existing institutions, and for their full dignity within them. This is the model that won marriage equality, the ability for gay people to serve openly in the military, and, most recently, protection against discrimination in employment. ACT UP contained both modes of thinking about the AIDS crisis in particular and about gay life more broadly: a systemic vision of injustice along with specific demands for immediate change. The group was a theater in which these two theories of change coexisted and competed.

When the difference between the rights model and the liberation model comes up, it is usually liberationists who mention it, and usually they mean it as an insult. For some on the gay left, the difference between “rights” and “liberation” has become moralized, with the rights model cast as insufficient, unimaginative, and capitulatory. And yet Schulman’s book demonstrates the mutual dependence of these two visions. ACT UP was most successful when it applied liberation tactics to rights-based goals. In interviews, Schulman has described ACT UP’s tactical strategy as concrete demands that can be met by institutions, combined with massive civil disobedience and media exposure. Those concrete demands could not be developed without the cooperation of experts with institutional access, and the massive civil disobedience could not be accomplished without a large group of committed radicals.

Schulman’s account of ACT UP repeatedly emphasizes the efficacy of an inside-outside strategy. And in another world, it’s possible that this dynamic could have lasted for years. But tensions arose. In the interviews, people with a more insurgent, antagonistic approach claim that the insiders had become complacent and were betraying the spirit of the movement. The insiders—those activists with institutional ties, working to get specific drugs into the hands of people with AIDS—start describing the insurgents as naive, saying they were diluting the AIDS struggle with an overbroad agenda.

Many of the liberationists whose perspectives Schulman includes were women—people like ACT UP’s media expert Ann Northrop, Maxine Wolfe, and Schulman herself, all HIV-negative white lesbians who saw ACT UP as an opportunity to work on a much larger variety of issues related to AIDS, like evictions, drug criminalization, and the FDA’s ban on women patients in drug trials. Meanwhile, lots of the T&D men who had ingratiated themselves with the big shots were HIV-positive, and their focus on treatment rights had a personal edge. Northrop puts it this way: the conflict was “people who were interested in immediately saving their own lives versus those who had a bigger vision, bigger issues, or were interested in saving other people’s lives.”

How did such noble and urgent goals become opposed? The split between the liberationists and the rights activists to some degree reflected preexisting divides between gay men and lesbians within the gay movement. But the demographics of identity and infection within ACT UP meant that privilege and peril did not map neatly onto one another. Some of those most privileged were in the most personal danger; some of those with the broadest social perspective on the crisis were those who were not personally infected. In ACT UP, the liberationists emphasized the context. The rights activists emphasized the stakes.

Meanwhile, they and their friends were dying. The early ’90s saw rapidly rising mortality among people with AIDS. ACT UP members who had been symptom-free for years started getting sick. Their declines were rapid and gruesome. There was wasting, dementia, and blindness. Everyone was constantly going to funerals. Schulman does not dwell on emotions—she is a markedly unsentimental thinker—but it is clear from her account that this era is something that many people from ACT UP never got over. She writes of trying to track down survivors for interviews about ACT UP decades later, only to find that some of them had fallen into addiction and mental illness. These people had survived the worst of the AIDS crisis, but survival is not recovery.

By 1992, the group had fractured along ideological lines. The insider T&D guys were pitted against the outsider rank and file, particularly the lesbian activists, who were then working on women’s issues around the CDC. Disagreement calcified into distrust. Eventually, Mark Harrington, Peter Staley, and the rest of the core T&D group left ACT UP. They formed their own organization, the Treatment Action Group (TAG), in 1992. Of their exit, the late writer Larry Kramer told Schulman, “They were drunk on their power. They could sit down with the head of [Bristol Myers] or the chief scientists. They could call all these people up and they could do it on their own from then on, and they didn’t need anyone fighting on the outside for them. And perhaps they became a little ashamed of us.”

ACT UP did not go away after the split. It’s still around, still organizing combative demonstrations. TAG is still around, too, working on HIV and also tuberculosis, hepatitis C, and COVID-19. Over the years, it has become less of an activist group and more of a think tank. Its members ditched their leather jackets and started wearing suits. Neither group has the ambition or effectiveness of the original ACT UP.

When it worked, though, the inside-outside model in ACT UP was uniquely appropriate for a mostly gay organization. After all, the white gay men who made up the group’s majority found themselves in an insider-outsider position, excluded from some systems of power even while they benefited from others. Kendall Thomas, a Black, gay law professor at Columbia and veteran of ACT UP, puts it this way: “There were any number of people—again, gay white men—who had been raised, before they knew they were gay, to this notion that they were where they were because of merit—that the world belonged to them. . . . And then, they have the shock of being marked as queer and of being subjected to a politics of abjection, because people were dying.” Kramer says it more bluntly: “You learn very fast that you’re a faggot, and it doesn’t make any difference that you went to Yale. . . . I remember the day it happened. And I didn’t like it.”

Throughout its history, ACT UP has been marked and shaped by white gay men’s aggrieved entitlement. This is not a judgment, but an observation: their entitlement served as an asset. Among ACT UP’s most wealthy and most educated white men—like the T&D group—were people who were accustomed to being treated with dignity and respect, and who were outraged to find that there was an aspect of their lives that made the State deem them less worthy. Privilege was a tool, in this way. For those who had it, it meant that they were still capable of being shocked.

It’s this kind of conflicted privilege—uncertain and entitled and not always tethered to reality—that seems to mark the younger gay people Schulman saw at the White Columns opening. They don’t quite know their own relationship to the marginalized gay past, and aren’t quite comfortable with the depoliticized gay present. Beginning roughly a decade after the ACT UP split, rapid shifts toward gay assimilation and acceptance overhauled the possibilities for many younger gay people’s adult lives, just as they were beginning to live them. Gay sex became nationally legal in 2003; gay marriage became nationally legal in 2015; anti-gay employment discrimination was nationally banned in 2020. After ACT UP, the rights model triumphed, and that model has delivered on its promises. But the very rapidity of these victories has made them dizzying, difficult to trust.

Gay young people, having grown up in ACT UP’s shadow, think of homosexuality as a political identity, not just a personal one. But it’s no longer clear what possibilities—or obligations—that political identity creates. In The Gentrification of the Mind, Schulman writes about going out for drinks with a group of twentysomething gay artists. One, a lesbian novelist, avoids writing about lesbians. “The art world she was situating herself in excluded lesbian authors whose work did.” Another had never wondered why ACT UP was not taught in his American-history classes. None of the young people had noticed these exclusions—it had never occurred to them to want things to be otherwise. “Unlike my generation, who were told we were despised, they are told that things are better than they are,” Schulman writes. If rights have triumphed, liberation still hasn’t been realized.

Moira Donegan is a writer and feminist living in New York.