One day in June, 1990, at the height of the AIDS epidemic, I sat in the auditorium of San Francisco’s Moscone Center and watched as hundreds of activists pelted Louis W. Sullivan, the Secretary of Health and Human Services, with condoms. Sullivan had been attempting to deliver the closing address at the 6th International AIDS Conference. The protesters, from the AIDS Coalition to Unleash Power, or ACT UP, were there to stop him. Shouts of “shame, shame, shame” were accompanied by whistles and air horns. Like many people who were in the audience that day—I was there as a Washington Post reporter—I remember everything about the speech except what Sullivan said. Which was exactly what ACT UP wanted. The group had been formed to force a negligent government to take AIDS seriously. Not every federal official came under attack that day. Just an hour earlier, Anthony S. Fauci, the country’s chief AIDS scientist, had received a standing ovation after he essentially endorsed the protesters’ agenda, warning his colleagues that they “cannot and should not dismiss activists merely on the basis of the fact that they are not trained scientists.”
It was a triumphant moment for ACT UP, which had become known for its outrageous stunts. Behind what seemed like radical unity, however, the organization had already begun to split into two distinct camps. One believed that the best way to advance the cause was to continue to protest—loudly. The other did not reject public actions but didn’t focus on them; it was known as the Science Club, and had formed a kind of academy within ACT UP.
In “Let the Record Show: A Political History of ACT UP New York, 1987-1993” (Farrar, Straus & Giroux), Sarah Schulman, a novelist, journalist, and activist, chronicles the early years of a vigorously oppositional group that was itself riven by discord and factionalism. Any history of a movement presents an argument about its identity—about which internal tendencies most faithfully represent its mission and which betray it. Schulman has strong views on this subject. On one point, though, there can be little disagreement. When ACT UP began, its founders could not have guessed how high the group would soar; they would have been even more surprised by the particular conflicts that brought it down to earth.
By the time ACT UP was born, in 1987, tens of thousands of Americans—mostly gay men—had died of AIDS, and more were dying every day, even as the government remained largely indifferent. Early that March, Larry Kramer, the writer and activist who had helped found the Gay Men’s Health Crisis, delivered a speech at New York’s Lesbian and Gay Community Services Center, on West Thirteenth Street. “O.K., I want this half of the room to stand up,’’ he later recalled saying. “I looked around at those kids and I said to the people standing up, ‘You are all going to be dead in five years. Every one of you fuckers.’ I was livid. I said, ‘How about doing something about it? Why just line up for the cattle cars?’ ”
The AIDS Coalition to Unleash Power was formed two days later. Its members met at the Center on Monday nights. They came to plan actions and to socialize but also to get answers. More than anything, it was a safe place for people who had nowhere else to turn. They were, Schulman writes, “a despised group of people, with no rights, facing a terminal disease for which there were no treatments. Abandoned by their families, government, and society.” The New York membership expanded from an initial hardcore cadre of several dozen to several thousand, including many people who were neither infected with H.I.V. nor at much risk of becoming so. Although plenty of other cities started their own chapters, ACT UP NY was always at the center of the movement.
ACT UP members lived by a creed set out by Ann Northrop, one of the organization’s more media-savvy leaders: “Actions are always, always, always planned to be dramatic enough to capture public attention.’’ The activists delivered. They wrapped the home of the North Carolina senator Jesse Helms in a giant yellow condom; invaded St. Patrick’s Cathedral during Mass; laid siege to the Food and Drug Administration (“Hey, hey, F.D.A., how many people have you killed today?”); and dumped the ashes of comrades who had died of AIDS on the White House lawn. These and many other high-profile interventions raised awareness about AIDS. But the group’s most important accomplishments were not as easily captured in headlines. Because so many people with AIDS were forced to live on the streets, ACT UP members founded a philanthropy that evolved into Housing Works, which directed resources (including money raised by a chain of thrift shops) toward AIDS services and homelessness. ACT UP helped establish the first successful needle-exchange programs in New York City. It also took on insurance practices like the exclusion of single men who lived in predominantly gay neighborhoods.
Nothing the organization did had a more lasting impact, however, than the work of the Science Club, whose members served on ACT UP’s Treatment and Data Committee. They would congregate each week at the East Village apartment of Mark Harrington, who, though he had no formal scientific training, eventually won a MacArthur “genius” grant for his work on AIDS. Harrington, a wiry man with reddish-blond hair, seemed both constantly in motion and unusually deliberate. As Schulman recounts, the gatherings in his apartment were like a “doctor’s weekly rounds,” where attendees discussed a particular problem and “assigned themselves immunology and virology textbooks.’’
Harrington was hardly averse to public demonstrations: he helped organize ACT UP’s “Seize Control of the F.D.A.” protest, in 1988, and its “Storm the N.I.H.” event, in 1990. But he believed that anger had to be allied with expertise. He and other members of the Science Club came to know the arcane rules and the impenetrable bureaucracy of the F.D.A. better than most of the officials who worked there. They prepared a detailed assessment of N.I.H.-sponsored clinical trials, and argued that people facing almost certain death should have access to experimental drugs that had been shown to be reasonably safe, even if they had not yet demonstrated efficacy. By 1990, the F.D.A. had adopted this approach (known as the “parallel track”), which would make selected drugs available to H.I.V.-positive patients. The slogan “Drugs Into Bodies” moved from placards to policy: ACT UP had forced a fundamental change in the way clinical trials are conducted in the United States. Today, drug candidates for life-threatening conditions are frequently put on a parallel track for “expanded access.”
Eventually, in what Schulman refers to as ACT UP’s period of “distress and desperation,’’ the Science Club broke away from the organization, and, led by Harrington, it formed the Treatment Action Group, to focus on accelerating the pace of research. Although the TAG defection involved fewer than two dozen people, it was a painful divorce, with unexpected repercussions. ACT UP’s ferocity concealed a genuine fragility. The group fearlessly hurled itself against the medical bureaucracy, the Catholic Church, even the White House; what proved much harder to weather was its own crisis of identity.
Although “Let the Record Show” bills itself as a history, Schulman maintains that “a chronological history would be impossible and inaccurate.” She does hope to offer contemporary activists “general principles and takeaway ideas,” but her book is best approached as a sort of modified oral history, a curated archive of nearly two hundred interviews conducted over the course of two decades. One can open this seven-hundred-page book at random and find something interesting to read: a mini-biography, firsthand recollections of major events, contentious perspectives on the goals of different groups within ACT UP. (The interviews—which Schulman did along with the filmmaker Jim Hubbard—are available online, as the ACT UP Oral History Project.) Schulman draws, too, on her five years as an ACT UP member, but largely eschews other people’s research, and the book provides scant interstitial narrative; some readers may struggle to put these passages into context. Still, her labors will provide an invaluable resource for the social history of the movement that remains to be written.
That’s not to say that the book lacks a thesis. Schulman is intent on widening our understanding of what it meant to be part of ACT UP. Instead of a colossus run largely by a small cohort of white men, she argues, it was more of a loose confederation of affinity groups. Although ACT UP is often remembered for its extreme measures, it never committed an act of violence (despite enduring many). When we think of ACT UP, Schulman wants us to think of the fight for universal health care, racial justice, and radical democracy—and to recognize that “a few committed activists, when focused on being effective, can accomplish a lot.”
Early in the epidemic, people with AIDS were routinely described in the press as “victims.’’ (In the nineteen-eighties, I was as guilty of this sin as other reporters.) Schulman dispels that portrait of passivity. She spoke at length to a number of ACT UP’s leaders, at least those who survived into this century. But her most inspiring interviews were with rank-and-file members like Aner Candelario, who was born in Puerto Rico and graduated from the Bronx High School of Science. In 1976, as a teen-ager, Candelario was riding the No. 6 train when he had a “revelation” that he was not bisexual but gay. “Being a practical person,” Schulman tells us, he searched the phone book and found something called the Gay Switchboard. Candelario dialled the number and asked if there was a group for teen-agers. There was, and he attended one meeting, then another, and for the next five years he led a gay youth group.
Vito Russo, another ACT UP stalwart, is best known for “The Celluloid Closet,” his 1981 book about homosexuality and homophobia in film. In 1988, Russo delivered a spellbinding speech, in Albany, called “Why We Fight.” (You can, and should, watch it on YouTube.) As Russo told a crowd, he had AIDS, but that wasn’t what was killing him:
The politics of AIDS—“gay-related immune deficiency,” or GRID, was an early designation, as if a medical condition might have a sexual orientation—was inevitably a confrontation with homophobia. In March, 1986, William F. Buckley, Jr., wrote, in a syndicated column, “Everyone detected with AIDS should be tattooed in the upper forearm, to protect common-needle users, and on the buttocks, to prevent the victimization of other homosexuals.” That same year, by a vote of 5–4, the Supreme Court upheld a Georgia sodomy statute, in a case involving two men having sex in a private home. Several years into a harrowing epidemic, gay Americans were told that an act of consensual sex could not only infect them with a fatal disease; it could also, at the will of a state, send them to prison. The fears of internment were not easily dismissed as hysteria.
In a section of the book titled “When an Image Leads a Movement,” Schulman shows how such threats led to what became ACT UP’s most arresting symbol. Around the time of Buckley’s tattoo column, an art director named Avram Finkelstein read something in the newspaper about the silence of a community being deafening. He and some friends had been tossing around ideas for a poster. As Finkelstein told Schulman, one day he said, “What about Gay Silence Is Deafening?” A colleague responded, “What about Silence Is Death?” Another person said, “Oh, no, it should be Silence Equals Death.” Another offered, “We should use an equal sign.” Finkelstein recalled, “It was literally that fast. It was four comments.”
They also discussed the graphics that would accompany the slogan. “We talked about the rainbow flag,” Finkelstein said, but “it was too friendly and, I’m not going to lie, just too ugly.” They hated the pink triangle, too, for its suggestion of victimhood, “but it seemed like it might have the most chance of being clear enough to the lesbian and gay community, more clear than the other images we were discussing that were abstract, and graphic enough to be intriguing, interesting, compelling to people outside of the community who didn’t know what it was.”
The group decided to turn the pink triangle upside down, “thereby permanently connecting the AIDS crisis visually to the legacy of the Holocaust,” Schulman writes. During the late eighties, countless T-shirts bore the logo, and “Silence = Death” stickers could be found on what seemed like every newspaper box or wall in New York City. In a blinkered era, signage was significant, and merchandise mattered.
“Let the Record Show” argues that ACT UP’s success arose from its genuine diversity, and its truly democratic approach to making decisions. The book highlights the contributions of women, many of whom came out of the reproductive-rights movement of the seventies. Some, like Maxine Wolfe, who was a psychology professor and a central figure in ACT UP, had a long history of feminist and lesbian activism.
And many of ACT UP’s campaigns were created for the particular benefit of women. In the late eighties and the early nineties, it became common to hear the ACT UP slogan “Women don’t get AIDS; they just die from it.” That was because the original list of the conditions that the C.D.C. used to define AIDS—a definition with implications for what insurers would cover and who might receive disability payments—did not include chronic infections that were specific to women. This kind of neglect should hardly come as a shock. Women have rarely been given equal consideration or representation in medical research. (The map of the human genome—the foundational blueprint of modern biological research—was initially based largely on the genetic sequence of an anonymous man from Buffalo.)
Yet there were reasons for ACT UP’s prevailing image. A 1989 survey of the New York chapter showed that more than three-quarters of participants were younger than thirty-five and that eighty per cent were white gay men. Many were well educated, even well-off. Larry Kramer, who died last year at the age of eighty-four, certainly fit that bill. Recalling his early attempts to enlist help from public officials, he told Schulman, “You learn very fast that you’re a faggot, and it doesn’t make any difference that you went to Yale and were assistant to presidents of a couple of film companies, and that you had money.” The early ACT UP firebrands never forgot that Ronald Reagan hadn’t so much as uttered the word “AIDS” in public until September, 1985, just a couple of weeks before it killed his friend Rock Hudson.
Kramer made it clear that the unexpected pain of spurned entitlement helped fuel the movement. “We were mostly white and privileged, and there was a lot of flak against us in the community because of that,” he told Schulman. As one would expect, this account doesn’t sit well with her.
“ACT UP was predominantly white and male,” she acknowledges. “But its history has been whitened in ways that obstruct the complexity.” Kramer, she thinks, “never really understood the wide range of people who were in ACT UP, where we were coming from, and what we were doing.” She is angered by the attention that has been lavished on him. “It is remarkable how many people in high places, of all ages, in multiple spaces, think that Larry was ‘the leader of ACT UP.’ ” In fact, as she concedes, Kramer never pretended to be the leader of ACT UP. He was its sharpest spear, though, and spears are needed in times of war.
Schulman’s trouble with Kramer reflects a deeper fissure within the organization. ACT UP certainly contained affinity groups, including the Majority Action Committee, for people of color, and the Women’s Caucus. But did members who were white and male have an advantage in swaying a bureaucracy that was also overwhelmingly white and male? That’s what Kramer implied, and, though Schulman doesn’t dispute the point, she thinks that the group’s true power lay in a concerted display of strength through diversity.
ACT UP’s biggest problem, in her opinion, was to be found not in the movement but in media depictions of it that played largely to a straight and white middle-class audience. She assails David France, whom she accuses of using her research to “nefarious ends” in his powerful documentary “How to Survive a Plague.” It won mainstream approval, she thinks, precisely because it promotes a “heroic white male individual model” of activism, in contrast with the “diverse grassroots movements” revealed in the less celebrated documentary “United in Anger,” which she produced with its director, Jim Hubbard.
Schulman’s indictment of how AIDS and AIDS activism have been portrayed extends to the Oscar-winning film “Philadelphia.” It errs, she says, because it depicts a gay man with AIDS (Tom Hanks) being helped by a homophobic straight lawyer (Denzel Washington) who overcomes his prejudice, rather than by the man’s own community. More surprisingly, she lambastes the Pulitzer Prize-winning play “Angels in America,” which came to Broadway in 1993 and was, she maintains, yet another work “that made straight people into the heroes of the crisis.” Tony Kushner’s dramatic diptych “is strangely disconnected from the reality of people with AIDS, relying on the conventional trope of a cowardly gay person who abandons his lover.” It’s a curious interpretation, requiring the erasure of Jeffrey Wright’s role as Belize, a gay nurse and the play’s centering sensibility. (The performance won Wright a Tony.)
That’s not the only erasure in Schulman’s book. For her, setting the record straight means emphasizing ACT UP’s broad vista of coalition politics. Yet of the nearly two hundred interviews that she draws upon for the book, only a few are with Black people. The voices of important activists of color who didn’t survive the plague are absent, owing to her reluctance to use archives other than her own. Even in a chapter describing the plight of H.I.V.-positive Haitians interned in Guantánamo, all her interview subjects are white. Early in the book, she says that her subjects spoke with her openly because, as New Yorkers, “they were used to telling their thoughts and feelings to a middle-aged Jewish woman.” In the context of her argument, the shrink joke, with its caste and class presuppositions, cuts a little close to the bone.
“ACT UP is a racist organization,” the late Keith Cylar, a prominent member of the group, told Spin in 1990. He wasn’t condemning ACT UP; he was saying that racism was an inevitable feature in a mostly white organization, and required vigilance. The sociologist (and ACT UP veteran) Deborah B. Gould, subtly probing the group’s racial politics, has written about a “scarcity mentality” fuelled by desperation. When people of color raised issues of particular concern to them, they routinely met the rejoinder “What does this have to do with AIDS?” or were told, “We don’t have time.” But Schulman hurries past such conversations, more concerned with scrutinizing the group’s media image than its complicated reality.
In the end, what Schulman calls ACT UP’s “tragic split” was precipitated more by dissension over research than by disagreements over race. Any list of the most important medical trials of modern times would have to include the AIDS Clinical Trials Group Protocol 076 study, which was launched in 1991. That study was designed to determine whether the antiretroviral AZT, administered during advanced pregnancy, would prevent H.I.V. transmission from mother to infant. And it led to a decisive rift between those in ACT UP, like Harrington, who argued for the study’s critical importance and those, like Maxine Wolfe, who wanted it stopped at all costs.
AZT was the first antiretroviral that received F.D.A. authorization to treat H.I.V. For a while, it would bring down a patient’s viral load, but H.I.V. is a fast-mutating virus, and the drug, when used on its own, as a “monotherapy,” typically lost efficacy within months. For a woman about to give birth, however, a temporary drop in viral load could be enough to reduce the risk of transmission. At the time of the study, between a quarter and a third of infants delivered to women with H.I.V. were born infected, and most died. Would the therapy help?
The A.C.T.G. 076 study—which enrolled nearly five hundred pregnant women—demonstrated that a brief regimen of AZT administered to a mother before and during delivery, along with a small dose for the newborn, decreased the perinatal transmission rate by nearly seventy per cent.
That trial, and others that followed, helped doctors throughout the world prevent the deaths of millions of children, particularly in sub-Saharan Africa, where infection rates were exceptionally high. Still, AZT was a poison that had to be used wisely, and the trial raised thorny ethical questions. Was it fair to give poor women drugs that could cause resistance later and, in theory, hinder subsequent treatment? Or did the immediate threat to all the children who might be born with H.I.V. take precedence? Was it ethical to use a placebo group? Many women in ACT UP wanted to shut the trial down, or substantially alter it. The Science Club fought forcefully for the trial. (So did many Black women, who knew that it could be particularly helpful to hard-hit communities of color.)
Wolfe, who brought Schulman into the group, and who emerges as a major opponent of Harrington and his approach, considered the trial too dangerous. She has never swerved from her conviction that it was immoral. “I regret that we couldn’t stop 076,’’ she told Schulman. “To this day, I think it was a big mistake.” Schulman—who uncritically presents Wolfe’s false assertion that the risk of viral transmission to infants was “minuscule”—condemns the trials as privileging the “imagined future” over the present; unborn babies over their mothers. She implies that some of the mothers later died because they were “rendered resistant to some subsequent classes of new medications.”
Yet, since trial subjects almost invariably received a higher “standard of care” than would have been available to them otherwise, participation could save their lives, not just the lives of their offspring. And Schulman’s concern that these mothers wouldn’t benefit from new classes of medicine has long since been laid to rest. Newer antivirals—notably protease inhibitors, which won F.D.A. approval a year after the trial results were published—became part of an updated standard of care. These regimens proved widely effective for people who had previously taken AZT.
It’s nearly impossible to assess the value of a medical trial without at least exploring the consequences of not carrying it out. I travelled to Africa to write about this issue nearly twenty years ago. I could hardly find an African physician or researcher who didn’t consider the A.C.T.G. 076 study to be of immense value. I found none who thought it should have been stopped. White feminists like Schulman and Wolfe, who understandably saw the study through the lens of reproductive politics—and the way anti-abortion advocates have elevated the welfare of a fetus over that of its mother—failed to grasp what these trials meant to vulnerable communities around the world. Almost three decades later, Schulman refuses to acknowledge that, on a deeply contentious issue, the Science Club was right.
Inevitably, personalities as well as principles played a role in ACT UP’s subsequent split. As Schulman observes, Maxine Wolfe and Mark Harrington deserve a great deal of credit for the group’s successes; the two were equally responsible, she contends, for what she calls its “self-defeat.” Although Wolfe is at pains to distance herself from the antagonism that arose toward the Science Club, people within that group had their own perspective. The estimable Garance Franke-Ruta, who joined ACT UP as a teen-ager, and followed Harrington to the Treatment Action Group, spoke bluntly to Schulman: Wolfe, she said, “was awful to me.”
The grievance that Wolfe and her allies had with the Science Club went beyond the battle over a single drug trial. They were concerned that the Club’s members had increasingly pursued the “inside strategy”—working with pharmaceutical researchers, N.I.H. administrators, and other public officials. This meant that, as Wolfe put it, they “were meeting with the very people who we were fighting against.” Her allies discussed a moratorium on letting anyone in ACT UP meet with government officials, and the prospect deepened the sense within the Science Club that ACT UP no longer valued its agenda. Although ACT UP didn’t collapse after the schism, it was badly damaged, and it never recovered its centrality. When the inside-outside strategy was largely reduced to an outside strategy, the organization became far less consequential.
In retrospect, one can ask whether ACT UP’s victories on the research front pushed the F.D.A. too far. The drugs-into-bodies approach to fast-tracking—the use of “surrogate endpoints” (like T-cell counts or viral load), for example, rather than clinical benefits in actual people—can be valuable, especially for patients who are facing death and have no good alternatives. This approach at least offers desperate patients a chance, while allowing scientists to gather meaningful data. But, today, a number of drugs, for everything from asthma to periodontitis, have won approval before benefits in human patients were established, and critics argue that drug approval is too often based solely on benefits shown in biomarkers rather than in bodies. “Right to try” legislation, meanwhile, enables the sale of drug candidates without even involving the F.D.A. When restrictions are weakened, experimental drugs—many of which end up proving useless or worse—become harder to distinguish from effective medicine.
Today, Franke-Ruta is a journalist, and she spoke to Schulman about the wider implications of some of ACT UP’s success. “I don’t think that we realized at the time that this was part of the broader gutting of the FDA that we’ve seen since; that there was a lot of political agendas that we just happened to be in sync,” she said. After President Donald Trump touted the promise of hydroxychloroquine as a treatment for COVID-19, the F.D.A. issued an emergency-use authorization for the drug, which was shown to be useless for the purpose. (The agency withdrew the authorization three months later.) “Sometimes it seems like it’s gone too far in the other direction,” Franke-Ruta went on. “But there’s a really strong pharmaceutical lobby against the FDA as well that I don’t think we were aware of.”
ACT UP’s legacy is hardly restricted to the realm of research. “The movement for Black lives would look very different if its thought leaders—many of whom are self-identified Black queer people—hadn’t been able to draw on the example of ACT UP,” the legal scholar Kendall Thomas, who joined the group in 1987, has observed. “Black activists and their allies now understand that the struggle for Black freedom has to make connections across many different constituencies and concerns that used to be seen as different and disconnected.” At the same time, Schulman implicitly reprimands many contemporary social-justice movements and their emphasis on allyship and “accomplices” (who must take direction from a marginalized community) over coalitions of shared interests and values. She plainly considers call-out culture a distraction. ACT UP members who were women or people of color, she says, directed resources to projects that were specifically of concern to them. They “did not stop the drive toward action to correct or control language or to call out bias,” she adds pointedly. “The language and behavior of racist and sexist ACT UPers was not the focus.”
There are lessons in ACT UP’s failures, of course, as well as in its successes. If the group were the richly coalitional grassroots organization that Schulman describes, how could the departure of two dozen people—Harrington’s TAG team—have derailed it? Her institutional analysis is rather cryptic. The way ACT UP dealt with the differences among its members “was to practice a kind of radical democracy,” she says. “Subverting this range of difference and trying to channel it through open and hidden moves was ultimately its downfall.”
One notably disaffected voice in “Let the Record Show” is that of Charles King, who (with his partner, Keith Cylar) helped start Housing Works. King told Schulman that ACT UP was, at its heart, “gay men and their allies fighting for their lives.” By the mid- to late nineties, the demographics of death were changing: “It was now a Black disease, not their disease.”
Schulman promptly dismisses King’s unsettling critique: “True to the ACT UP tradition of alienation, Charles was defining ‘ACT UP’ by the people he disagreed with, not by himself and his allies.” Her insistence on ACT UP’s diversity is important and correct. Still, the group’s most famous image—the inverted pink triangle of the “Silence = Death” logo—didn’t just link AIDS and the Holocaust; it was also an assertion of a gay identity, as not incidental but integral.
King suggests that an easing of desperation within the gay community may have caused ACT UP’s undoing. As long as the core cadre felt that they were fighting for their own lives, ACT UP could accommodate vigorous internal disagreement, even as the group secured advances for women, people of color, and the homeless. After medical advances meant that, for most H.I.V.-positive Americans, the infection was no longer a death sentence but a chronic condition, the forces of fragmentation could no longer be managed.
ACT UP was always argumentative, though, and “Let the Record Show” remains faithful to that spirit. If Schulman’s record-keeping sometimes projects her own ideals and aspirations, she never fails to make one truth eloquently clear: “how brutal debates within the AIDS community could be, how high the emotional and literal stakes were, how desperate people were, how little anyone else was listening, and how truly destructive the pain and frustration could become.” ♦
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