Aids and Act Up: Sarah Schulman puts women and people of color back at the heart of the story

·7 min read

Sarah Schulman is ready to have her say about the history of US Aids activism.

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She is ready for a woman, and for stories about women and people of color, to be heard.

Over the nearly four decades during which the 62-year-old novelist, playwright, humanities professor and queer activist has written about the HIV epidemic, the works that have achieved the most widespread recognition – notably Angels in America, Philadelphia, The Normal Heart, Rent and How to Survive a Plague – have been created by and largely centered around white men.

Now, just weeks shy of the 40th anniversary of the Centers for Disease Control and Prevention’s ominous first report of what became known as Aids, the veteran Aids Coalition to Unleash Power (Act Up) activist has come armed with a 700-page magnum opus she hopes will set the record straight about one of the most consequential social movements of the 20th century.

Schulman’s 20th published work, Let the Record Show: A Political History of Act Up New York, 1987–1993, lays bare the sprawling, heartbreaking, messy and above all awesomely inspiring story of, as she writes, “a despised group of people, with no rights, facing a terminal disease for which there were no treatments”.

After the group’s 1987 founding at the behest of writer-activist Larry Kramer, Act Up’s raggle-taggle soldiers shook the ivory towers of power in a furious and astonishingly effective effort to promote a more forceful, equitable and humane response to a disease with a horrifying power to strike and kill some of the most vulnerable and disenfranchised members of society.

In America, change happens through coalition. Any history of Aids that focuses on the heroic individual is a distortion

Sarah Schulman

In her new book, Schulman is at her most tenacious and affecting as a historian and cultural critic when deconstructing the white patriarchy, which two generations ago still wholly dominated the medical, scientific, political and media establishments. Despite HIV’s disproportionate impact on people of color, Act Up was also largely comprised of white men. But in Schulman’s eyes, the group “has been incorrectly represented as exclusively white and male”.

The author reserves remarkably caustic ire for David France, the director of the 2012 Oscar-nominated documentary How to Survive a Plague and book of the same title. Together, France’s works chronicle how Act Up’s elite treatment and data committee fought with historic success to push the National Institute of Allergy and Infectious Diseases and Food and Drug Administration into overhauling how HIV and Aids treatments were tested and brought to market.

Over morning tea at a café near her home of 41 years in Manhattan’s East Village, Schulman bristled at the very mention of France’s name. She insisted that his take is “no more going to be the story about Aids”.

In her book’s preface, Schulman goes so far as to claim France used archival footage of Act Up to “nefarious ends” to “make claims that are not accurate”. His cardinal sin, she writes, was relying on the “heroic white male individual model” to produce a film she long ago re-christened “How Five White Guys Saved the World From Aids”.

Is it nefarious to try to find a way through that archival footage that will bring an audience to this history?

David France

France insisted in a telephone interview that he did not “set out to tell the story of Act Up” in his film, but of only one part of the group. He noted that of the seven treatment & data members featured in the documentary, two are women.

Putting race and gender aside, the division between France and Schulman boils down to a fundamental difference regarding the basic principles of storytelling. France prefers forging intimate connections to a smaller cast of characters and following a classic bildungsroman dramatic structure. Schulman opts for a “moral expansion” of the narrative, featuring as many voices as possible.

Schulman’s big-tent approach relied on 187 interviews that she and the experimental filmmaker Jim Hubbard conducted between 2002 and 2017 for the Act Up Oral History Project. Hubbard directed and co-produced with Schulman their own documentary, United in Anger: A History of Act Up, which came out the same year as France’s film – but without the mainstream accolades.

“The history of Act Up is the history of a group,” Schulman said. “Individuals do not make history in the way that we’ve been told. And paradigm shifts occur because of community. In America, change happens through coalition. So, any kind of history of Aids that focuses on the heroic individual is a distortion.”

Related: The reinvention of radical protest: life on the frontline of the Aids epidemic | David France

Alexis Danzig, an Act Up veteran, said: “Sarah and Jim definitely embody an ethical commitment to our activist history which Andrew Sullivan, David France, and even Tony Kushner do not. Because the latter are less interested in directly creating social change than they are in creating commentary.”

Defending his own film, France begged the question: “Is it nefarious to try to find a way through that archival footage that will bring an audience to this history?”

The sheer length of Schulman’s book and its deliberate lack of a linear plotline – the encyclopedic text is arranged not chronologically but thematically, and relies rather overwhelmingly on lengthy block quotes – may indeed test the patience of some in her own audience and ultimately limit her book’s reach. But by shining a light on the multitude of stories France did not, she helps preserve for posterity Act Up’s many impacts beyond what was known as the “drugs into bodies” mission. And in her telling, she takes pains to stress that women and people of color played vital roles along the way.

Most importantly, she covers the successful four-year campaign by the women’s committee of Act Up that in 1993 got the CDC to expand the definition of Aids to include conditions specific to women and people who inject drugs. Act Up was also responsible for the legalization of needle exchange programs in New York City. The group pushed the research establishment to develop treatments for opportunistic infections that killed people with Aids, and helped expand insurance access for those living with the condition. And overall, the activists helped revise the public image of LGBTQ and HIV-positive people from one of supposed weakness and passivity into a force to be reckoned with.

With a philosopher’s eye on guiding next-generation activists, Schulman also situates Act Up within the larger context of major 20th-century social movements. She illuminates how the group was informed by movements for civil rights, feminism and reproductive rights, communism, labor and the sectarian left. Some of these influences were direct, such as through the contributions of Act Up members who were veterans of the anti-war or feminist movements. Others were more indirect, through the collective memory of 1960s television reports of freedom riders and lunch-counter sit-ins.

“The book is monumental in the way that it documents the full breadth of Act Up and the impact it’s had, and also placing it in the context of movements within health care, within queer rights, within feminism, within other justice movements,” said the veteran queer journalist Michelangelo Signorile, whose work on Act Up’s media committee is featured in Let the Record Show.

But for all her grandstanding about accuracy, Schulman’s own approach to crafting a work history is notably laissé faire. She largely refrained from fact checking the book with her sources. And indeed, there are factual errors in the text.

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Perhaps most egregiously, Schulman asserts that today “large numbers” of people with HIV “cannot” gain access to treatment due to lack of health insurance. In fact, thanks to the 1990 Ryan White Care Act, the federal government provides safety net coverage for the care and treatment of the virus to the uninsured or underinsured.

Steven W Thrasher, an assistant professor of journalism and LGBTQ health at Northwestern University, praised Schulman’s book as a “wonderful entry into Aids history” and a “necessary corrective” to previous works about Act Up that have focused “on a handful of white guys.” But he also noted her lack of footnotes.

“She says in the beginning she’s not a trained historian,” Thrasher said, “and so it should be read as a work of community history. But people might be expecting something else when they’re reading it. They might be expecting a trained historian.”