Updated: Aug 17, 2022
2021 (Farrar, Straus, and Giroux)
Thirty years ago, I was active with the New York chapter of the AIDS Coalition To Unleash Power (ACT UP) for nearly two years, beginning in the spring of 1991. I learned of the group by chance, through a class I took during my freshman year of college. Enrolled in what was ostensibly a writing course, I lucked out in having Jay Dorff as my teacher, a truly brilliant graduate student teaching a small seminar called The Rhetoric of AIDS, Jay had me and eight other undergraduates critically reading and talking about AIDS and HIV--and not just news articles, but also opinion pieces by Michelangelo Signorile and Gary Indiana, and poems by Paul Monette. We went to Angelika Film Center to see Todd Haynes´ film Poison, and discussed the music and the marketing materials for the Red Hot + Blue project. We had a couple of guest speakers visit our class, including one from ACT UP, and that inspired me to join that week. I briefly worked with their needle exchange program, providing clean needles for IV drug users in Lower Manhattan; as well as YELL (Youth Education Life Line), working to give safer sex education and condom distribution to public schools in New York City.
Jay died in 1993.
Today, here in New York City, we are currently in the middle of our third year of a different kind of pandemic--coronavirus, and all of its variants. Just in the past two and a half years, covid-19 has proven to be a political, as well as a matter of public health. And as I witness the emergence of a new public health condition, monkeypox, I also hear much of the public downplay its danger because "it only affects gay and bisexual men". Didn´t we already get through this discriminatory rhetoric back in the ´80s, when HIV and AIDS were inaccurately described as GRID (Gay-Related Immune Deficiency)?
Not surprisingly, during the early weeks and months of the covid-19 pandemic, comparisons to the early years of the AIDS epidemic began to circulate. To some, it felt like history repeating itself: a little-known virus, not only causing a public-health emergency, but revealing deep fissures within our society, from economy and class to race and politics.
However, there are glaringly distinct differences between these two public health crises, some of which I was surprised more journalists and podcasters failed to note. One of the most immediate was simply the pace of the response at the level of the US government and health officials: a free and effective vaccine for covid-19 was made available for Americans less than a year into the pandemic, while treatment for HIV not only took years after cases were first reported, but these drugs were absurdly expensive as well as highly toxic. The stigma of testing positive for HIV, back in the 1980s as well as today, has an incomparably higher price socially and politically, than any individual who tested positive for covid-19 has experienced in the past 2-3 years. One virus was associated by the public, politicians, and religious leaders with a particular "subculture" deemed deviant, whereas the other was considered a natural (and non-ideological) phenomenon that could affect anyone. Not that living through the first year and a half of the coronavirus was easy, by any means (being a freelancer, I lost 75% of my income within days of Governor Cuomo´s announcement of a lockdown in New York City, and lost my apartment less than two weeks after that; 30 months later, I am still trying to recover from this unusually disruptive experience, financially and emotionally); rather, as someone who also lived and was active during the earlier AIDS crisis, it is important to make sure our narratives fit the facts, rather than how we wish they were, or think they should be.
These were some of the sprawling thoughts and memories going through my mind upon reading the monumental Let the Record Show: A Political History of ACTUP New York, 1987-1993 by writer and historian Sarah Schulman. Truly, I cannot think of a more profound and vital text that I urgently wish everyone would read. Not only is this the most thoroughly-researched and in-depth document about one of the most exceptional activist organizations of the last century, but it also provides a kind of instructive toolkit for anyone today interested in creating equitable and meaningful change. Based on interviews with over 150 living members of ACT UP over a number of years, Schulman has given us a definitive record of some of the key strategies, demonstrations, and tools deployed by this complex and highly effective organization.
Like the author, I believe facts are important. Remarkably, even though the activities of ACT UP described in Let Record Show are less than forty years old, a number of contemporary journalists are still getting this important history wrong. In an April 2020 episode of Still Processing, presented by the New York Times, co-host Wesley Morris confusingly links these two eras, affirming that the loss of his aunt Geri to covid-19 is equivalent to the stigma people (especially queer and/or people of color) living with AIDS were experiencing during the ´80s and ´90s in America. Beyond the common humanity of sudden and inexplicable grief by the surviving loved ones, Morris provides no explanation as to why this is so (or if it is so), before transitioning into discussing How to Survive a Plague with co-host Jenna Wortham A 2012 documentary on ACT UP directed by David France, Morris describes the film as a "really instructive blueprint on how we might proceed" today with covid-19. Based on his understanding of the film, Morris says says that ACT UP "harassed and terrorized the government until giving them the drugs." While such a "hero´s journey" narrative is appealing, and thinking that collective outrage was all that these activists brought to the table to change the resources and treatments for people living with AIDS, not to mention society´s perception of the crisis, demonstrates only a cursory understanding of what ACT UP did. Especially coming from journalists employed by one of the world´s most important news outlets, I expected more research and fact-checking from Morris and Wortham, beginning with France´s film.
Indeed, the public actions of ACT UP were filled with rage. They were also exceptionally sophisticated, well-organized, and astutely media-savvy. And that´s not counting the group´s extensive and crucial work behind the scenes. When such multifaceted efforts and achievements of ACT UP get boiled down, the results tend to be a whitewashing or an elimination of the important contributions of many of the organization´s members. We must make a distinction between what really happened during the height of the AIDS epidemic in the ´80s and ´90s, and distinguish it from narrative films such as Philadelphia, directed by Jonathan Demme; and Tony Kushner´s two-part Angels in America (later made into an HBO miniseries, directed by Mike Nichols). And How to Survive a Plague. Even though it is a documentary, France is the film´s author: using a variety of footage and interviews (including many organized by Schulman herself, as part of the ACT UP Oral History Project), he is constructing his own narrative, choosing who is heard on screen and who is left to the cutting room floor. With this doc, France seems to publicly sharing "his own personal version of the truth," rather than depicting a more objective, complicated, accurate historical record. During a public debate with Jim Hubbard, the director of United in Anger: A History of ACT UP, France was asked why no women or people of color were included in his film. He replied--inaccurately--that wealthy white men had the time to devote to activism. Further, he asserted that gay white men were the only ones who "understood the science"--also wrong, as one of the most knowledgeable members of ACT UP in terms of the science was Garance Franke-Ruta, who was 19 at the time. Interested folks can see this 2013 debate in its entirety here on YouTube.
And yet How to Survive a Plague was nominated for an Academy Award.
Throughout Let the Record Show, Schulman repeatedly emphasizes how exceptionally diverse the AIDS Coalition To Unleash Power (ACT UP) actually was a much richer community than a bunch of "wealth white men". For example, while often credited with starting the group, Larry Kramer was not "the leader" of ACT UP, though he was certainly important and galvanizing. Instead, the organization´s success was due, in part, to the vast diversity of its members: men and women, gay, straight, people of color, and much more. Many members of ACT UP were HIV+, but many were not; some contracted HIV through sex, and others through drugs. The vast majority of activists were volunteers. Some had a previous background in activism, and brought their knowledge (particularly in feminism) to the group; but many had no previous activist experience, but were driven by a personal relationship to rage, heartbreak, or despair. A few ACT UPers had a background in medicine and science, but the vast majority worked in law, marketing & advertising, live performance, design, or were unemployed, or were full-time students.
The interviews and testimonials in Schulman´s book demonstrate how, while members of ACT UP did not always agree on priorities or strategies for their actions, the group had a mechanism (at least for a number of key years) to remain sufficiently cohesive to effect change to a degree which is still startling to contemplate. True, ACT UP organized a number of highly theatricalized demonstrations and public campaigns--from Stop the Church at St. Patrick´s Cathedral in December1989 to the "political funerals" of David Wojnarowicz and Jon Greenberg (brother of choreographer Neil Greenberg) in the summer of 1993. And yet, these alone would have proved ineffective to create the necessary social, political, and medical change necessary to meaningfully combat society´s response to HIV and AIDS.
As Schulman highlights frequently in the book, a key feature as to why ACT UP proved so successful as an activist organization was its prioritization of simultaneity of action over consensus. Because there was no centralized leadership within the organization, ACT UP could conduct multiple actions and efforts to instil change at the same time, from theatrical street demonstrations to meeting with New York city housing officials to create resources for the homeless; from designing art projects at the Whitney Museum to having meetings with doctors and researchers about how to change clinical drug trials for HIV so that it is patient-centered. "The Ashes on the Lawn," broadcast by RadioLab in December 2020, goes in-depth into another one of ACT UP´s most famous public demonstrations, from October 1992. The angle of the piece, reported by Tracie Hunte, seems to conclude that Dr. Anthony Fauci--like now, was then an immunologist studying infectious diseases at the National Institutes of Health--became a willing ally of ACT UP and AIDS activism purely out of empathy. By contrast, numerous accounts in Let the Record Show give voice to members who interacted with Fauci during the ´80s and ´90s, finding him to be a reluctant ally, at best, a man more concerned with his own legacy and public image than heeding the urgent demands of those actually afflicted by HIV.
In the book´s introduction, the author provides an overview of some key accomplishments by the organization in a very short period of time, and I think it´s important to reprint Schulman´s list below in full:
ACT UP designed a fast-track system in which sick people could access unapproved experimental drugs, and then, through direct action, forced the US Food and Drug Administration to adapt.
ACT UP ran a four-year campaign to change the US Center for Disease Control´s definition of AIDS so that women could get access to benefits and be included in experimental drug trials.
ACT UP made needle exchange legal in New York City, and started Housing Works, a. service for homeless people with HIV/AIDS
ACT UP also helped force pharmaceutical companies and the government to change priorities in medical research to stop the same failed drugs from being studied over and over again.
ACT UP´s "Countdown 18 Months" campaign influenced a refocus of research onto opportunistic infections, thereby reconceptualizing the image of effective treatment. Reality made us evolve from the fantasy of one pill that would "cure AIDS" to diversified, individualized treatment combinations that would address the impact of HIV on each body.
ACT UP ended insurance exclusion for people with AIDS and confronted the Catholic Church´s attack on public school condom distribution, abortion, and needle exchange.
Images of ACT UP fighting back on the nightly news and through posters, community-distributed videos, and still photogragphy created a new face for the world of people with AIDS and their allies as a vibrant and powerful grassroots force. This new queer/PWA stood publicly with power and grade, and this defiant determination had long-range influence on how people with HIV and queer people saw themselves and were in turn understood by others.
Reading this list, and the stories of the men and women Schulman interviewed to create Let the Record Show, is truly inspirational. These ordinary people helped changed the world we live in today, including providing greater preparedness, understanding, and research for our current pandemic. These men and women, many of whom were literally dying from a disease our government couldn´t be bothered to mention much less invest research into, gave their lives for this work.
The least we can do is get the facts straight.