Acting Up and Fighting Back: Stories of ACT UP

Sarah Swedberg

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Sarah Schulman’s Let the Record Show: A Political History of ACT UP New York, 1987–1993 and Peter Staley’s memoir, Never Silent: ACT UP and My Life in Activism aren’t in conversation with one another so much as they are different versions of the same story. Both focus on the AIDS Coalition to Unleash Power (ACT UP), the largest of the AIDS activist organizations in the 1980s and early 1990s, and both authors were active participants in ACT UP during these years. If read in concert, the books ask: Whose stories do we tell and who do we let tell those stories?

Let the Record Show is a collective story based on oral histories, studded with primary source documents and obituary-like memorials of deceased ACT UP members. Throughout her book, Schulman emphasizes that “regular members’ voices and stories are essential in understanding” the movement.^[1] The purpose is to highlight the democratic nature of the organization as well as the many people who were often out of the limelight but vital to the functioning of the coalition. Never Silent is a standard memoir with Staley at the center as a gay man with HIV who joined ACT UP, first as an observer and then as a full participant and leader. He writes about other activists, but his purpose is to tell the story of his actions in concert with those of others who worked to save the lives of people with HIV or AIDS in the face of stigma and government neglect.

The difference between the books is thus one of purpose–political history versus memoir–but also of worldview. Together they tell of a collective movement dedicated to doing everything possible to save people’s lives, a movement made up of individuals with different backgrounds, opinions, and ideas. Schulman and Staley stand at two points along a broad ideological spectrum. In her activism, Schulman hoped to help bring about a fundamental transformation of American society while Staley found a good deal of satisfaction in earning a place at the table.

Readers will find this difference apparent in many places, but most starkly in the two authors’ discussion of the American institution of healthcare. Schulman writes that images of people with AIDS “were ultimately co-opted” by pharmaceutical companies and others in order to maximize profit, and she characterizes the healthcare system in this country as run by “a brutal market.”^[2] That ACT UP did not, in the end, produce a system wherein everyone has access to healthcare clearly breaks her heart. In contrast, Staley believes that the capitalistic system of healthcare helped produce life-saving medication: “In countries that removed the profit motive from drug development,” he writes, “their contributions to effective drug therapies over the last century are almost nonexistent.”^[3] Where Schulman sees a system that leaves out the most vulnerable, Staley believes that without the brutal market there would be fewer medications and thus everyone would be left out.

Let the Record Show and Never Silent also present two versions of the 1992 split in ACT UP that clearly left scars on the participants. Different activists remember the growing divisions largely in ways that have to do with where people stood in relation to formal power. Members of ACT UP had always tried to be heard in the halls of power (inside), but when they were denied access or wanted to highlight neglect or bad policy, they used creative forms of protest to draw attention to the needs of people with HIV (outside). While telling different versions of the story, both Schulman and Staley acknowledge that the inside/outside strategy worked well in the early years of ACT UP and both believe this strategy ultimately divided the coalition irreparably.

As members of ACT UP, and particularly members of the Treatment and Data Committee (T&D), gained access to the inside, others felt left behind. In particular, some of the women in ACT UP believed that the needs of women with HIV or AIDS continued to be defined too narrowly or ignored even as progress was made in treatment for wealthier white men. In 1990, while members of ACT UP’s Women’s Caucus attended a Women and AIDS conference in Washington, DC, male members of T&D did not, instead having a working dinner with Dr. Anthony Fauci later that evening. This rankled, for Fauci, then director of the National Institute of Allergy and Infectious Diseases, had been at the conference earlier and, according to Women’s Caucus member Tracy Morgan, he “treated all the women … like dirt.”^[4] That men could skip the conference and have a cozy dinner with a man who stood in the way of progress for women, according to Morgan and others, led to feelings of betrayal and an increase of infighting within ACT UP.

Staley understands these women’s anger to a certain extent, but quotes Mark Harrington, a member of T&D who was at that dinner with Fauci. Harrington criticized the disruptive tactics of the Women’s Caucus at the conference. “We are at a strategic cul-de-sac,” he said, “mindlessly repeating actions and tactics which may have worked once but aren’t working now.” Harrington felt like outside disruption had gotten in the way of progress toward effective treatment brought about, in part, by insider access. While Staley acknowledges that there was a “woeful lack of representation of women in HIV-related clinical trials,” he nonetheless characterized the women’s response as “ballistic.”^[5]

It took almost two more years after this incident for many of the members of T&D, Staley among them, to leave ACT UP to work under the banner of a new organization, the Treatment Action Group (TAG). For Staley and the other members of TAG, this was the only logical thing to do. ACT UP had become too unwieldy. Getting inside access would help on the road to saving lives. Staley emphasizes that members of TAG remained critical and continued to put pressure on those in power. The gains they made, while not perfect, were worth the shift in strategy.

Despite this schism, and the pain its memory still brings to those who experienced it, both Schulman and Staley believe that any group of young activists has much to learn from the history of ACT UP. Let the Record Show and Never Silent both are guidebooks of a sort. They are very different guidebooks, of course, for all the reasons already examined.

Schulman continues to celebrate the decentralized and democratic nature of ACT UP. For her, the coalition was not hindered by the fact that it only had a very loose structure and that a lot of the work was done by smaller coalitions or affinity groups. Initially, Staley found comfort and community within that same decentralized and democratic structure but eventually found it limiting. Ultimately, he found it more useful to work in the smaller and more-focused TAG with its earned respect from doctors, leaders of pharmaceutical companies, and politicians.

For Schulman, ACT UP is a model to “help contemporary and future activists learn from the past so that they can do more effective organizing in the present.”^[6] She hopes that the disaffected can find, in ACT UP’s history, a roadmap for radical and democratic action with many points of entry. For Staley, ACT UP is a model that he celebrates but he simultaneously offers it as a cautionary tale. He wants younger activists to know this history, to know about the inside/outside strategy, to see the beauty in the protests, the love, and the creativity, but also to to know that there can be pathways to power.

In the end, both Schulman and Staley tell stories of survival, of community in the face of utter despair and destruction, but also of joy. Both acknowledge the important victories ACT UP won in creating community responses to a healthcare crisis and getting access to treatment when those with political or economic power stood in the way.

The books will resonate with different readers in different ways. Radicals will find much to love in Let the Record Show while reformers will embrace Never Silent and Staley’s story of ultimately finding places within the systems of power. The fact that readers will nod in recognition or shout in outrage is not a weakness but a strength. Those of us who study or teach about social movements understand that activists within a movement have never agreed with one another fully but, nevertheless, can often find ways to work together for change.

Both of these texts should be required reading for anyone who teaches social movements, public health history, the history of HIV and AIDS, or late 20th century American history. Reading both books will allow access into a time and place of death, anger, and activism. Both authors agree that the riotous, sexy, beautiful activism of ACT UP changed the world and ultimately saved many people’s lives. The books provide first-person accounts of a history that will continue to be built upon, a history that too many did not survive to tell.

Notes

1. Sarah Schulman, Let the Record Show: A Political History of ACT UP New York, 1987–1993 (Farrar, Straus and Giroux, 2021), xix. ↑
2. Schulman, Let the Record Show, 529. ↑
3. Peter Staley, Never Silent: ACT UP and My Life in Activism (Chicago Review Press, 2022), 144. ↑
4. Schulman, Let the Record Show, 546. ↑
5. Staley, Never Silent, 162. ↑
6. Schulman, Let the Record Show, xvii. ↑

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Featured image caption: ACT UP members from Shreveport, Louisiana, attend a demonstration at the National Institutes of Health. (Courtesy NIH History Office)