Sarah Schulman - Let the Record Show: A Political History of ACT UP New York, 1987-1993

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Dedicated to us

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.

Let the Record Show is a look at the individuals who created ACT UP New York. While ultimately there were 148 chapters of ACT UP around the world, each acted autonomously. New York was the mother ship, and my study focuses exclusively on that community, covering the years 1987 to 1993.

AIDS is not over. Out of the 100,000 New Yorkers who have died of AIDS, 1,779 died in 2017. As of 2019, more than 700,000 people had died of AIDS in the United States, according to the Kaiser Family Foundation, including 16,350 in 2017, according to the U.S. Centers for Disease Control. As of 2019, according to UNAIDS, 32 million people worldwide had died of AIDS, with around 690,000 deaths in 2018.

ACT UP New York still exists. Learn more at https://actupny.com.

This is a book in which all people with acquired immune deficiency syndrome (AIDS) or with the human immunodeficiency virus (HIV) are equally important. Their experiences all matter. Therefore, their contributions to transforming the AIDS paradigm are represented as dynamic, interlocking parts of a bigger picture. In recent years the representations of the AIDS Coalition To Unleash Power (ACT UP) and AIDS activism in popular culture have narrowed, almost to the level of caricature. By decentralizing, yet still accurately representing, the remarkable contribution of those with the most access while juxtaposing those efforts with the phenomenal work of people with less access, a deeper, more complex world is revealed. People who must have change choose the playbook their social position demands. Historicizing ACT UP as an organizational nexus of a larger culture of resistance by people with AIDS (PWAs) invites all of us, in the present, to imagine ourselves as potentially effective activists and supporters no matter who we are. The story of ACT UP New York is much larger than its legendary Monday-night meetings. It is a political and emotional history of liaisons, associations, relationships, coalitions, and influences that cumulatively create a crucial reality of successfully transformative struggle under the most dire of circumstances.

I first started observing and writing about AIDS in the early 1980s, when I was a twenty-four-year-old city hall reporter for the New York Native, a gay male newspaper. I would go to press conferences given by Mayor Ed Koch to raise concerns about the inability of the New York City Council to pass a basic gay rights bill protecting New Yorkers from discrimination in housing, jobs, and public accommodations, like restaurants. When AIDS became apparent to me, around 1982, I began to ask questions about the looming crisis. In this way, by chance, I was able to cover early stories like gay businesses being denied advertising space because of AIDS hysteria, and the first case of AIDS diagnosed in the Soviet Union. Soon, however, I was writing regularly about the early stages of state oppression of PWAs, the closing of gay spaces, the refusal of the government and pharmaceutical companies to respond effectively or at all, and the nascent movement of resistance, including early civil disobedience and organizing. Because I had been a reproductive rights activist and journalist, I contextualized this developing story in the larger framework of the rise of the religious right as an electoral force and the role of their president, Ronald Reagan, in obstructing progress on AIDS. In New York City, PWAs and their supporters were also thwarted locally by the negligence of Mayor Koch, and so we had both municipal and national battles to wage. I also, from the beginning, focused my coverage on women, poor people, and children and the impact of AIDS on their lives. These journalistic pieces can be found in my book My American History: Lesbian and Gay Life During the Reagan/Bush Years.

ACT UP was founded in March 1987 after a lecture at the Lesbian and Gay Center by writer Larry Kramer. I had been writing about AIDS for about four years before joining the newly formed ACT UP in July 1987. Although never in leadership, I was a rank-and-file member of ACT UP until 1992, shortly after the organization split. I went on with five other women to cofound The Lesbian Avengers, also a direct-action group. While in ACT UP, I participated in countless actions, including Seize Control of the FDA (Food and Drug Administration), Stop the Church, and Storm the NIH (National Institutes of Health). I was arrested twice, at the Day of Desperation action at Grand Central Terminal (Fight AIDS, Not Arabs) and at Trump Tower for the Trumpsgiving action. I hovered on the outskirts of the Womens Caucus, attended the first meeting of the Housing Works Committee, and participated in the Shea Stadium action (No Glove, No Love). I organized one of ACT UPs earliest fundraisers, held at Performance Space 122, across the street from my apartment. But, like most of the rank and file, and unlike most of the people highlighted here, I was never an active member of a committee, nor did I belong to an affinity group. I did bring AIDS into my other community work, including coprogramming the MIX NYC Queer Experimental Film Festival, which I ran with cofounder Jim Hubbard from 1986 to 1993. I continued to write journalistic pieces about AIDS for the next thirty-five years, primarily in relation to gentrification and, most recently, HIV criminalization. This is my fifth nonfiction book with significant AIDS content, and I have also published four novels about some aspect of the lived experience of AIDS. My entire adult life has been surrounded by AIDS: the deaths of those around me and with whom I made my stand, advocating for and learning from people with HIV, and witnessing and sharing the survival of my closest friends. I have met, stood with, and advocated for people with HIV all over the world as an HIV-negative person, and consider myself to be part of the HIV/AIDS community.

In 2001, Jim Hubbard and I founded the ACT UP Oral History Project. Since the popular availability of protease inhibitors five years before, the AIDS activist movement had virtually disappeared from public view. Many were licking their wounds and trying to rebuild their lives. The emergence of internet culture left ACT UP behind, as most of its materials were not digitized or searchable. AIDS Incorporated, slang for the complex of AIDS-related government bureaucracies and pharmaceutical company alliances, had mostly replaced grassroots activism, and the community that had been built by activists was scattered. ACT UP, as a result, was undocumented and seemingly forgotten. There was no accurate data easily available to researchers. Distressingly, The New York Timesknown in ACT UP as The New York Crimeswhich had systematically under- and misreported the AIDS crisis, was being cited as a legitimate source in PhD dissertations and books. We had to make the history and experience of AIDS activism visible and accessible.

For the next seventeen years, from 2001 to 2018, Jim and I conducted long-form interviews with 188 surviving members of ACT UP New York. These transcripts form the heart of this book. We let people self-select with no exclusionary definition of what it meant to have been in ACT UP, gathering from all corners of the movement with one significant exception. By 2001, almost every HIV-positive woman in ACT UP New York, except one confirmed survivor, had died. And that woman did not want to be interviewed because her childrens spouses did not know that she was HIV-positive. She has since died. Most of the dead, like Katrina Haslip, were straight women of color, but some, like Keri Duran, were white, working-class, and queer. A number were formerly incarcerated at the Bedford Hills womens prison and came to ACT UP after serving their terms. We tried to interview two white prison AIDS activists, Judy Clark and Kathy Boudin, who were still incarcerated, but we were refused permission by the warden. Upon release, Kathy declined to be interviewed. Judy is finally awaiting release as I write. Only secondhand, through Terry McGovern, Marion Banzhaf, Catherine Gund, Debra Levine, and other ACT UPers involved with prison work, do we have these activists stories. A number of the men we interviewed have since died (RIP Jim Lyons, Michael Perelman, Herb Spiers, Andy Vlez, Larry Kramer, and Douglas Crimp); a number of men and women died before we could get to them (RIP Keith Cylar, Sally Cooper, Spencer Cox, Juan Mendez, and others). Some former ACT UPers later developed such chaotic drug habits that they repeatedly canceled interview appointments, sometimes until they died. One severely addicted man welcomed us into an apartment drenched in dog urine, where he babbled on for hours after not having slept for four days.