(Michael Specter’s article appeared in The New Yorkers, 7/7; Photo: In 1988, protesters laid siege to the F.D.A. for a day, one of many interventions designed to capture public attention.Photograph by Catherine McGann / Getty.)
The defiant group of AIDS activists was itself riven by discord. What can the movement’s legacy, of both ferocity and fragility, teach us?
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.