ACT UP: A History Of AIDS/HIV Activism

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Forty years ago this month, the CDC reported on patients with HIV/AIDS in the United States for the very first time. In the years since, LGBTQIA+ Americans have been fighting for treatment and recognition of a disease that was was understudied, under-reported, and deeply stigmatized. Sarah Schulman is the codirector of the ACT UP Oral History Project, and the author of Let The Record Show: A Political History of ACT UP New York, 1987-1993.

Schulman draws from nearly 200 interviews with ACT UP members to document the movement's history and explore how the group's activism transformed the way the media, the government, corporations and medical professionals talked about AIDS and provided treatment. She and Sam discuss this transformation and its relevance to social movements today.

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Author and activist Sarah Schulman Drew Stephens hide caption

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Interview Highlights

On the energy and success of ACT UP:

I think any political movement for it to be successful has to be a place that makes the participants' lives better. If you're just joining a political movement out of some kind of sense of responsibility and burden, it's not going to work. That's why Emma Goldman famously said, "If I can't dance, it's not my revolution." ACT UP was a dance. It was a place that was life affirming. It was sex positive. It was all about being effective. And it was filled with very young people who are very energetic and desperate for change.

On the parallels between the HIV/AIDS crisis and COVID-19:

What's interesting, when you compare AIDS with COVID, you know, COVID is a collective public experience that we're all having on television. People are talking about it in their families. AIDS, on the other hand, was like our private nightmare. Our battle was to get it into the public and that was the biggest fight. But when people with AIDS were depicted, either they were depicted as helpless, emaciated, dying, weak people with no community and no organization. Or when the media did start finally covering it, they divided people into "innocent victims" and "guilty victims." They actually used those terms.

Let The Record Show: A Political History of ACT UP New York, 1987-1993 by Sarah Schulman Farrar, Straus and Giroux hide caption

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On diversity within the movement that's been historically overlooked:

The women and people of color in ACT UP tended to come from previous movements, and of the white gay men, only the older men came from gay liberation. The younger men tended to have had no political experience at all. So people who came from Latin American student movements against fascism, from the Black Panthers, from CORE and certainly from the reproductive rights movement, the women's peace movement, those people came in with political ideas and also with ways of running movements that ACT UP really needed. And they had a huge impact on the movement.

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Advice for today's activists:

I think the biggest lesson is to design your solution, become the expert on your issue, and build campaigns around things that are reasonable, winnable and doable. And we're seeing that, you know, the movement against police violence, it's different in every town, right? It's different in every city. And it has local leaders and people are working with their municipalities or against the municipalities or but they're coming up with plans for where they live that are reasonable. And that's what we need to be doing.

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This episode of 'It's Been a Minute' was produced by Jinae West, Sylvie Douglis, Andrea Gutierrez and Liam McBain. Our intern is Manuela López Restrepo. Our editor is Jordana Hochman. Our director of programming is Steve Nelson. NPR's Susie Cumming and Ayda Pourasad contributed research for this episode. You can follow us on Twitter @NPRItsBeenAMin and email us at samsanders@npr.org.