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ACT-UP: A Model for Contemporary Activists


I haven’t read Sarah Schulman’s history of ACT-UP yet. My understanding is that it is very good and very long. I will get to it. But I wanted to link to this Boston Review essay on it because I think ACT-UP is a super important precedent for us today. Let’s put the excerpt up first:

The men who successfully led the Storm the NIH action were indeed appointed to government committees, where they created new practices that are still the gold standard in AIDS research today. However, in these new roles, they also held cordial meetings with the same officials that the women of ACT UP were protesting for refusing to acknowledge that women had AIDS—a refusal that blocked them from treatment and was often a death sentence. Sometimes these meetings and protests were literally on the same day, undercutting the strength of the outsiders for the benefit of those now on the inside.

“The men of T&D were people with AIDS, desperate for new treatments,” Schulman writes empathetically, “and yet so were other people.”

Strategies and what-ifs can be debated endlessly, but results are results. Perhaps the most damning assessment of the cost of this fissure is a simple fact that Schulman notes in her preface: “By 2001 almost every HIV-positive woman in ACT UP New York, except for one confirmed survivor, had died.”

ACT UP’s members achieved incredible wins, against impossible odds, while watching their world crumble around them. They made mistakes and kept going, literally carrying each other when necessary. A few hundred dying people battled the United States, and often they won. Reading Let the Record Show made me wonder what they could have done with more bodies on the line; more help; more hands; more heart; more anger. “Unfortunately, most people do not participate in making change,” Schulman notes. “Only tiny vanguards actually take the actions necessary, and even fewer do this with a commitment to being effective.”

Many of ACT UP’s women—and men, and nonbinary people—fought effectively to their dying breath. Others survived and are still fighting. They succeeded in changing the definition of AIDS to include women. They brought HIV services into detention centers. They made films about the crisis. They are still making films about the crisis. They are writing histories that tell their successes and failures with clear eyes, to enable us to make better choices in the future.

But this story is inherently unfinished; AIDS is still a crisis; activists are still fighting today. ACT UP New York meets every Monday at 7:00 p.m. at the LGBT Community Center in Manhattan.

Everyone is invited.

Around these parts, we have a lot of “play by the rules” liberals, by which I mean, people who think nearly the be all and end all of activism is electoral politics. I mean, think about the liberal mantra of registering people to vote, which does exactly nothing given that those registered voters are as likely to vote for the enemy as for liberal values, as we saw in the record turnout of the 2020 election that basically replicated the 2016 election by percentage.

Of course, voting and registering people to vote has its place. But so does radical direct action. Whether sit-ins at segregated lunch counters or Black Panther Party child care programs or Occupy Wall Street or ACT-UP or Black Lives Matter rallies, there are many examples of how non-electoral activism change the world. Activists don’t have to play by the electoral rules. And mostly they shouldn’t. ACT-UP was an angry, desperate, militant set of people. They didn’t care if they pissed people off. They didn’t care if Catholics didn’t like it when they desecrated the Eucharist. They didn’t care if politicians didn’t like, Republicans or Democrats. They fought for what they knew was right.

And this is what you have to do. If people don’t like, that’s there problem. The point of activism is not to become an adjunct of the Democratic Party. The point is to change the world. Whether it is climate activism or calls to defund the police or taking down monuments that celebrate treason in defense of slavery, whether it makes people uncomfortable or not or whether it fits into the current political cycle is just irrelevant. I once thought, 15 or 20 years ago, that the move toward gay marriage was poor politics because it might get in the way of other priorities and jeopardize the Democratic coalition. I was extremely wrong. Not only was it right thing to do no matter how uncomfortable it might make Democrats, it in the end helped build a better society and has helped the Democratic coalition in the long run. That wasn’t the goal of the activists. The goal was to be married and have civil rights. In the case of ACT-UP, the goal was to be treated by human beings. It’s the goal that matters, not how it might affect the present election cycle.

When we remember ACT-UP then, we shouldn’t think about it through the haze of easy nostalgia. We should remember just how disruptive these activists were and translate that into being disruptive or supporting disruption today.

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