AIDS Activism and Sarah Schulman’s Joyous Anger

Schulman’s Let the Record Show argues that AIDS continues to kill queer, drug-addicted, brown, black, undocumented, and uninsured people.

Let the Record Show: A Political History of ACT UP New York, 1987 – 1993
Sarah Schulman
Farrar, Straus and Giroux
May 2021

Sarah Schulman’s history of AIDS activism, Let the Record Show, is an angry book. 

Its anger, however, manifests on the page as exuberance. Her joyous anger reflects a testimonial impulse. It is a tone that readers of Schulman’s past works have come to expect and cherish. 

Her capacious tome is a compilation of hundreds of oral interviews conducted alongside her longtime creative partner, Jim Hubbard. From these excerpted and carefully arranged interviews, the book weaves a story of the flagship, New York chapter of ACT UP (the AIDS Coalition to Unleash Power), the seminal AIDS activist organization operative as a unified entity from 1987 to 1993.

On the one hand, Let the Record Show is hardly the first of such books. ACT UP has been treated widely in scholarship, journalism, and documentary. One thinks, for instance, of the wildly popular 2012 video documentary How to Survive a Plague directed by David France, a journalist who has covered LGBTQ and HIV/AIDS issues for decades. France’s film, too, covers the formation and dissolution of ACT UP-New York. Esquire called it the best documentary of 2012. The film went on to show at Sundance to massive accolades and ultimately be nominated for a litany of awards including an Oscar.

Four years later, France would repackage the same material in a book of the same title to similar fanfare. Like his film, France’s book scooped up accolades in the LGBTQ and mainstream press alike, winning the Lambda Literary Award and the Stonewall Book Award, alongside being dubbed—by Jeff Baker of the San Francisco Chronicle—“the definitive book on AIDS activism.” All of the central personages in France’s account—bureaucrats like Anthony Fauci, researchers and physicians like Mathilde Krim and Joseph Sonnabend, and the ACT UP-NY activists themselves: Larry Kramer, Michael Callen, Peter Staley, Mark Harrington, Jim Eigo, Bob Rafsky, and others—feature in Schulman’s book too. On the surface, then, both books are about the twinning of grassroots activism and citizen science. 

But that’s where the similarity ends. Schulman’s book almost certainly won’t be treated to the same mainstream fanfare. It may not even delight certain corners of the queer press. 

In some ways, one of the more telling means differentiating her book from France’s—and a means, therefore, of understanding Schulman’s gamble and achievement—lies in one of the particular approbations to which France’s text was treated. Countless reviews link it to Randy Shilts’ monumentally popular And the Band Played On, published in 1987. To be sure, historians, journalists, scholars, and activists have rightly, in the years since its publication, noted the enduringly consequential and detrimental flaws of Shilts’ book. They have keenly documented the extent to which Shilts confines his account of science, suffering, and activism to the narratological formats of, alternatively, the thriller, the detective story, and the horror.

Particularly harmful was Shilts’ portrayal of the French-Canadian flight attendant Gaetan Dugas, the book’s infamous “Patient Zero”. It is by now well documented not only that this account was wildly incorrect (scientists now believe HIV existed in the US as early as the late 1960s and globally as early as the late 19th century), but that it buttressed viciously homophobic narratives about the inherently nymphomaniacal, selfish, and, ultimately, the murderous character of gay men. Meanwhile, the heroic scientists whose single-minded genius will end the pandemic are arrayed against the reckless narcissist Dugas, Shilts’ villain. 

When reviews linked How to Survive a Plague and film to Shilts’ work, then, the former was framed as a corrective, more humane sequel to the latter. Gone was the scapegoating, the scolding sex-negativity of Shilts’ book. France’s “sequel”, by contrast, depicted gay men—not straight scientists and tolerant bureaucrats—as those whose valiant community work and research didn’t just allow them to outlast a plague but, it is implied, ended it. 

This seeming detour into the dialectic linking Shilts and France is necessary for understanding 1. the point of Schulman’s book; 2. the urgency of her intervention; and, relatedly, 3. why, again, it may be doomed to a chillier response from at least the mainstream press. For while France’s book and film do, to their credit, eschew the narrative comforts of victim-blaming and the lurid obsession with compulsive gay sex(uality), they nonetheless retain Shilts’ investment in a relatively narrow band of protagonists and heroes.

Where Shilts’ And the Band Played On casts the scientists, bureaucrats, and researchers in this role, betraying in that way an odd identification with America’s heterosexist technocracy, France slots certain ACT UP-NY activists into this part. However, as Schulman’s Let the Record Show intuits, states, and corrects, the apparent progress of France’s advance over Shilts might be a red herring, a misdirection. This is because the activist-oriented story of survival France offers both 1. preserves the notion of a discrete and limited band of heroes; and, more troublingly still, but at this late date, unsurprisingly, 2. limits this coterie to largely middle class, educated white men. 

As Schulman rightly concedes, ACT UP-New York was demographically dominated by gay white men. This fact is not in dispute. What is up for debate is the extent to which that membership ratio determined the diversity of projects, actions, services, and philosophies that characterized the group during its period of unity and greatest public salience. Indeed, the notion of ACT UP-NY’s “unity” or “unification”, which I’ve referred to several times, refers to the period before 1992, when TAG—the “Treatment Action Group”—broke off from the main group.

The internal pressures and debates in ACT UP-NY between 1987 and 1993 are central to Schulman’s book, indeed, are to my mind its main narrative engine. As Schulman explains, TAG had begun, under the leadership of individuals like Mark Harrington and Spencer Cox, as an affinity group or subcommittee within ACT UP-NY. Over time, it became one of the most polarizing, distinct, and to be sure, successful caucuses in ACT UP-NY for several reasons. 

On the one hand, those in TAG were rightly proud of their astonishingly rapid familiarization with the basic science and clinical procedure of pharmacology and medical research. Yet those on the outside viewed the group, which even by ACT UP-NY standards was an educated white male affair, as unhelpfully blinkered in its focus. These outsiders insisted that TAG was attuned only to the most technocratic and narrowly medical issues facing the gay community.

For people in ACT UP-NY with this critical attitude, epitomized by the charismatic Maxine Wolfe, whom Schulman casts as Mark Herrington’s opposite, TAG was distressingly and self-defeatingly unconcerned about the matrix of social issues that imperiled the health of people vulnerable to HIV. For activists of this stripe, a queer person’s health was imperiled as much by homophobia, discriminatory housing policy, and the cruelty of health insurance companies as by KS (Kaposi’s Sarcoma), PCP (pneumocystis pneumonia), or CMV (cytomegalovirus), some of the more common opportunistic infections attending a deteriorating immune system.

Activists like Wolfe, recounts Schulman, were equally concerned about TAG’s increasing proximity to bureaucrats like Fauci and other members of the research-industrial complex, part of the “inside strategy” of backchannel communication that counterpointed ACT UP’s more public “outside strategy” of protest and action. For Wolfe and those who followed her, TAG was simply getting too cozy with the enemy. 

Eventually, frustrated by what they viewed as the unhelpfully diverse constellation of priorities in ACT UP and at their own social exile within it, TAG broke off to form its own non-profit. The new group’s mission statement described TAG as “an independent AIDS research and policy think tank fighting for better treatment, a vaccine, and a cure for AIDS.” Schulman hastens to note that the research and dedication of TAG members were utterly indispensable to the development and dissemination of the combination therapies that today, for most of those who can afford and access them, make HIV a chronic as opposed to a fatal condition.

Yet in centering these men, France’s texts truly must be understood as the sequel to Shilts’ offering, pledged as they are to working within the existing confines of, and therefore implicitly valorizing, an American medical-industrial complex dominated by white men and their concomitantly untroubled notion of empiricism. (In fact, the film and novel’s title itself, in casting “survival” as a foregone, conclusive accomplishment, shows its hand on this ideological commitment. It naturalizes the premise that the plague of AIDS has been survived when this remains manifestly and tragically untrue even in a notionally wealthy country like the US. Here, AIDS is now a plague largely unsurvived by black, brown, and trans bodies.) In both its medial incarnations, then, How to Survive a Plague reflects the enduring pull–on at least the American unconscious–of scientific heroes. 

What Schulman’s Let the Record Show offers is something vastly different. It is a large volume that refuses—occasionally at its own cost—these narrative comforts. This is a book, as noted, that divides its speaking time between hundreds of voices, dozens of ACT UP-NY subcommittees, and as many political legacies. Hers is not a finished story of the AIDS crisis.

What Schulman lets her record show is that this plague has not been survived, inasmuch as our politics and culture still mark queer, drug-addicted, brown, black, undocumented, and uninsured bodies for disposal. Her ambitious and sometimes unwieldy chronicle is not without its own faults or blind spots. It reflects, for instance, little desire to weigh in on the disjuncture between the queer community’s understandable resistance to compulsory contact tracing and desire for a more robust medical privacy in the 1980s with contemporary left discourse’s punitive stance toward voices skeptical of these same imperatives in our own time of plague. 

The book nonetheless comes to us when we most need it. It offers an archive of silenced voices; a record of bravery and struggle; and even perhaps a handbook for grassroots organizing and protest in a time of racial and medical injustice. Unconsciously conditioned, as we are, to the narrative as much as the political comforts of survival—that is, of closure—Let the Record Show may well be the book that we don’t want, but that we very much need.