How People in Trouble Created a Radical Health Care Movement

“The AIDS Coalition to Unleash Power is a diverse, non-partisan group of individuals, united in anger, and committed to direct action to end the AIDS crisis.”

This simple mission statement was announced at the beginning of each ACT UP meeting. People in trouble, many of them sick and some soon dying, had no time to lose in creating a radical health care movement. The desperation, daring, and diversity of talent in ACT UP meetings were an experience many later compared to culture shock or falling in love.

ACT UP New York was founded at the Lesbian and Gay Center in March 1987, and became the “mother ship” of 148 autonomous ACT UP chapters around the world. The focus of Sarah Schulman’s book is spelled out in her title: Let the Record Show: A Political History of ACT UP New York, 1987 – 1993. She documents the keystone chapter from the time it was founded in 1987 through the peak years of membership and public policy gains.

Schulman was a rank-and-file member of one of the most dynamic social movements of the twentieth-century, and has become an indispensable documentarian of that movement. She chose a thematic mode of gathering stories and evidence together, rather than magnifying a few iconic figures in a straightforward drama. Schulman is drawing largely from the ACT UP Oral History interviews she conducted with her friend and comrade Jim Hubbard, who also directed the 2012 documentary film United in Anger: A History of ACT UP. To these testimonies, she adds her own historical perspective.

“People died constantly throughout ACT UP,” Schulman writes. “All of our experiences were shadowed by loss… Sometimes I have extended testimony about that person’s life, sometimes just a fragment. Sometimes their participation was central, sometimes peripheral… But near and far, the landscape of disappearance and apparition is one I am trying to recapture here.”

A devastating global disease had only a spectral presence in The New York Times and on the major TV news stations in the early years of AIDS, though there were also thunderbolts of mass media sensationalism. Politicians mostly avoided the mere mention of AIDS, while the religious right called down the Last Judgment on the sick and dying. People living with AIDS were often abandoned by families, evicted from housing, and forced to the margins of the health care system.

The achievements of ACT UP included changes in public policy, including expansion of drug research and treatment, and active dialogue between people living with AIDS and the medical establishment. ACT UP chapters helped to launch needle exchange and harm reduction programs at a time when this work required civil disobedience. Leaders of the Roman Catholic Church campaigned against condoms, reproductive rights, and queer equality, joining forces with the religious right movement. These issues were not simply “culture wars,” but matters of life and death. ACT UP duly responded with a mass demonstration at St. Patrick’s Cathedral in New York City.

We confronted Big Pharma and the National Institutes of Health. An ACT UP affinity group unrolled a giant condom over the home of Senator Jesse Helms. When ACT UP members died, sometimes political funerals were conducted in the streets, and the ashes of the dead were hurled onto the lawn of the White House. Naturally we became familiar with courts and jails. 

Women and Changing the Definition of AIDS

Changing the definition of AIDS to include the health care needs of women was, as Schulman writes, “ACT UP’s longest-lasting and farthest-reaching effort.” Even with significant differences in strategy, there were objective medical gains both in drug trials and drug treatments. “This victory,” Schulman writes, “is felt every day by HIV-positive women around the world who are kept alive by medications.”

Schulman spells out the social position and perseverance of these activists:

“One major lesson of the successful campaign to change the CDC definition was that women and people of color and activists—some of whom were poor—and who looked like dykes could win changes from the white male power structure. But they had to fight longer. They were not welcomed at any point, and they had to use direct action constantly. It was through grassroots, outsider tactics that this ACT UP coalition literally forced the government to change against its will.”

Maxine Wolfe, who came to ACT UP as a seasoned activist, noted how “people came together to work on that, that everybody said would not work together.” In Maxine’s own affinity group of twenty-four people, only seven were women, while several of the men had HIV, and several died of AIDS. They all worked on a four-year campaign to change the CDC definition for women, poor people, and drug users. Wolfe called this lesson back into social memory:

“And that is something that nobody ever says about ACT UP. They always talk about gay white men, gay white men, selfish gay white men. [Emphasis in original.] We got tremendous support in ACT UP for that work, and from other places, too. So I just want to say that.”

Wolfe understood the use of the phrase “gay white men” as a signifier for selfishness, since it functions much like the antisemitic trope of “rich Jews,” or any other thought-stopping phrase. Wolfe’s real argument, however, was about the practical ground of solidarity.

Guantanamo and Haitians with HIV

As Dr. Robert C. Gallo wrote in “A reflection of HIV/AIDS research after 25 years,” published by the National Institutes of Health in 2006, scientists identified the disease as an immune disorder, and by 1982 identified the risk groups “then called the ‘4 H’s’ (hemophiliacs, heroin addicts, homosexuals and Haitians).” Gay Related Immune Deficiency (GRID) was the early common name for this disease. As evidence grew that the global disease was spreading most widely among heterosexuals, the name changed to Acquired Immune Deficiency Syndrome (AIDS).

As Michael Ratner wrote in “How We Closed the Guantanamo HIV Camp: The Intersection of Politics and Litigation,” published in the Harvard Human Rights Journal (1998), “For over a year and a half, from 1991 to 1993, the United States government ran a special detention camp, Camp Bulkeley, at its Naval Base in Guantanamo Bay, Cuba. In one sense, the camp represented just another episode in the sad global epic of the denial of refugee rights that fills our century. But the Guantanamo camp was unique; its 310 Haitian men, women, and children were prisoners in the world’s first and only detention camp for refugees with HIV.”

“It was relevant that 1992 was an election year,” Ratner wrote, “and the upcoming election was very influential on our strategy in the case. In retrospect, it was too influential. We had great hopes that Democratic candidate Bill Clinton would beat President Bush, and we believed that, if elected, he would close the Guantanamo camp.”

“Ultimately,” Ratner added, “to our shock and amazement, President Clinton refused to do what candidate Clinton promised. The Haitians had been kept in a barbed-wire camp for over a year, and it appeared more likely than ever that they would remain there indefinitely solely because they were HIV-positive.”

Ratner learned a lesson: “If there ever is a next time and I am faced with a similar situation and must choose a legal strategy, I will disregard the promises of politicians.”

“Perhaps the most important constituency in our coalition was the community of AIDS activists that had been ravaged by AIDS for nearly a decade,” Ratner wrote. “This community had a militant interest in ending discrimination against HIV-positive people, and the existence of a detention camp solely for people with the virus resonated with them. Of the AIDS activist organizations in our coalition, ACT-UP [sic] took the most radical approach. Its members dogged Clinton everywhere he went. They made the issue hot for him.”

“Taking aggressive political action also yielded unanticipated, positive results,” Ratner wrote. “For example, while we approached ACT-UP [sic] solely to enlist their political support and their militant public presence, its members subsequently were key in locating service providers for the Haitians, a critical requirement for their release. These unexpected benefits cannot be overemphasized.”

A Class-Conscious Health Care Movement

As Schulman writes in the Preface, “In recent years the representations of ACT UP and AIDS activism in popular culture have narrowed, almost to the level of caricature.” Consider the movie “Philadelphia,” in which AIDS activists flashed by as agitprop extras, while Tom Hanks played a gay lawyer with AIDS and Denzel Washington played the straight lawyer who comes to his rescue. Or consider David France’s 2013 documentary, “How to Survive a Plague,” in which a few gay men get heroic close ups while the AIDS activist movement recedes in the crowd.

The sectarian left rarely tried to recruit in ACT UP meetings, since many of our members were fighting to stay alive day by day rather than fighting for a revolution over the horizon. That does not mean ACT UP members never considered the relation between immediate and ultimate goals. “Drugs into bodies” was the motto of certain affinity groups whose main concern was to drive drug development and testing forward. At the same time, this was a common chant at many ACT UP demonstrations: “Health care is a human right! Not just for the rich and white!”

The reform of the “free market” model of pharmaceutical trials already had advocates inside and outside of ACT UP. Moreover, speeding up the drug approval process did not only serve desperately sick people; sometimes it also served the drive for profits of Big Pharma. Whereas lifting the ground floor of health care provision across lines of sex, race and class is one of the basic goals of social democracy. The United States has fallen far behind the health care systems of other modern democratic nations.

Theory is Memory with a Purpose

Some earnest scholars will read Schulman’s book and find that her running commentary is “insufficiently theorized.” My view is closer to Schulman’s, since she says plainly that theory emerged from practice in ACT UP. Some ACT UP members were already veterans of more programmatic groups, or scholars who created works of theory. “But on the floor of the Monday-night meeting,” as Schulman wrote in the Preface, “theory was never debated unless it was tied to creating actions, or to setting active campaigns… Not wasting energy, effort, or goodwill was essential to being effective in a movement of people who literally did not have time.”

Schulman pays attention to the initial small scale of big social changes: “A small, very crucial group of individuals had spent their time in ACT UP observing and analyzing the full range of meaning and impact of ACT UP as a whole, and developed organizational overviews, which permitted broad analysis, recognition of large tropes, and a grasp of strategic reach. But most often, ACT UP did not theorize itself.”

Voluntary councils, including social thinkers of the kind Schulman describes, are recurrently formed during public crises and revolutions. Hannah Arendt, in her book On Revolution, stated that the formation of councils was “the lost treasure” that had to be rediscovered in order to create a truly democratic republic.

When Arendt’s book The Origins of Totalitarianism was published, she responded to one critic by stating, “I proceed from facts and events instead of intellectual affinities and influences.” Schulman’s way of thinking and writing is similarly empirical. She would hardly object to a map in finding her way, but even a good old map might be missing new features in the landscape.

Theory is memory with a purpose. In that regard, Schulman holds no dogma that forecloses a more expansive historical perspective. I do find a similarity in the temperaments of Arendt and Schulman, and in their commitment to public freedom. Often they reveal a combative character combined with high spirited irony. Arendt wrote, “Thus my first problem was how to write historically about something—totalitarianism—which I did not want to conserve but, on the contrary, felt engaged to destroy.” There are strong common themes in their work, including historical catastrophes, organized lying, and social resistance against great odds.

The question of the relation between social memory and official history is addressed on every page of Schulman’s book, though the answers are as plural as her respondents. This follows from the good rule of following evidence wherever it leads, so far as that remains possible when time, death and forgetfulness have intervened. History is often the grand monument under which memory is safely buried. Let the record show that Schulman wrote this book on a discursive field of battle, both to honor the dead and to encourage the living.