I discovered the ACT UP organization in the wake of Occupy, when I became friends with Michael Petrellis, who I met through my church.

This book is a wonderful approach to documenting an organizing: powerful, tragic, and practical.

When preparing the ACT UP Oral History Project, Jim and I looked at two Holocaust archives for guidance. The Shoah Foundation, organized by Steven Spielberg, had a structure that did not fit our needs. Designed to counter Holocaust revisionism, in which people who did not commit the Holocaust deny that it ever occurred, the project had hundreds of interviewers focused on a list of predetermined questions. We felt that the interviews were designed to emphasize the moments of trauma, of oppression and atrocity. As important as this was, we were more intrigued by a small archive financed by the Fortunoff department store family that investigated who each person was before the Holocaust, and then how they were impacted by the turn of events. This approach really appealed to us for a number of reasons. The primary purpose of the ACT UP Oral History Project, and of this book, is not to look back with nostalgia, but rather to help contemporary and future activists learn from the past so that they can do more effective organizing in the present. We wanted to show, clearly, what we had witnessed in ACT UP: that people from all walks of life, working together, can change the world.

The story of access in ACT UP is the story of a collective that intended to do good, and actually did in fact truly make the world a better place. Inside those accomplishments are realities of a human dimension: people who do great things also do bad things, sometimes out of bias and supremacy, and sometimes out of vulnerability, fear of demise, the desire to live, or all of the above. And when white people, and men, do things out of bias and vulnerability, people with less access pay a price. Sometimes that price is stress, or being forced to strategize, or being blindsided as a way of life. Sometimes that price is exclusion from treatments, from participation in decision-making, or from the machine of power. Sometimes that means death, and sometimes that means long-term and systemic deprivation for the collective as well as the individual. When we evaluate how we have spent our lives, we have to look at our cumulative impact, not at the moments of failure or bad faith. Assessing this history is not a game of call-out. Instead, it is an effort to really understand and make clear how the AIDS rebellion succeeded, and to face where it failed, in order to be more conscious and deliberate, and therefore effective, today.

This book contains a lot:

  • “Drive and commitment, invention and felicity, a focus on campaigns, and being effective are the components of movements that change the world.
  • “A small, very crucial group of individuals had spent their time in ACT UP observing and analyzing the full range of meaning and impact of ACT UP as a whole, and developed organizational overviews, which permitted broad analysis, recognition of large tropes, and a grasp of strategic reach. But most often, ACT UP did not theorize itself…. Direct action was a concept by which theoretical discussion was not separate from action. Of course, individual ACT UPers were influenced by theory. A number of young video activists had studied in the Whitney Museum Studio Program. Many older activists came from highly theorized earlier radical movements, and some members, like Douglas Crimp, wrote theory. But on the floor of the Monday-night meeting, theory was never debated unless it was tied to creating actions, or to setting active campaigns. As Maxine Wolfe, one of ACT UP’s most influential leaders, would say, when planning and carrying out an action, “theory emerges” as a concrete result of actual decisions that are being made for real-life application. Instead of the Gramscian concept of “praxis,” which is the application of theory into practice, ACT UP first chose a practice—an action—and then evolved a theory necessary to make it work toward our larger goal of “direct action to end the AIDS crisis.” In this way campaigns were structured as a series of interconnected actions, designed to produce a larger outcome. ACT UP would never just do a demonstration, zap, or action to stand on its own. These public expressions were designed to build to the next step. That’s why every event had a sign-up sheet, or leaflets announcing further actions, and participants were informed of the next step in the series on any specific issue. Every action included a component of giving participants and observers something else to do. In this way, energy was not wasted, and events had purpose, as part of a larger schema. Not wasting energy, effort, or goodwill was essential to being effective in a movement of people who literally did not have time.”
  • “Gregg got together with Charles Stimson and Ortez Alderson, an activist from Chicago who had moved to New York to become an actor and who was working in Black gay theater with Assotto Saint. They decided to get together to “do a kind of activism that was not necessarily authorized by the large group.” They were annoyed by what they felt was a slow pace as ACT UP grappled to develop their perspective. They called themselves “MHA,” which actually didn’t stand for anything, but had flexible uses. For example, they used “Metropolitan Health Association” in order to get a meeting with Stephen Joseph, the health commissioner of New York City. At that time, Joseph was talking about various kinds of punitive measures against prostitutes. He had engaged in some “very panic-causing kinds of rhetoric” about the threat that people with AIDS, for whom he was considering internment and other repressive measures, caused to the general public, particularly around tuberculosis. MHA showed up. “We said, ‘We’re the Metropolitan Health Association.’ They said, ‘Please come in.’” They were in a large conference room with Stephen Joseph. It quickly became apparent, though, that MHA was not any kind of interborough health consortium. They started asking Joseph about the slow pace in the city’s response to AIDS. When Joseph realized that they were AIDS activists, Gregg and company were arrested and the story appeared in the press. At the next ACT UP meeting, Gregg remembers rising and saying, “Look, you can just do this. You don’t have to go to the large group to get authorization. In fact, it’s better that the large group is not involved with these kinds of actions because they don’t have to be held accountable. So you can just do stuff. ACT UP is just this place we all meet on a weekly basis to talk about strategy and prioritize issues.” He remembered saying over and over again, You can just do this. Just go out and do this. And people were very enthusiastic. This happened at the same time that the concept of affinity groups, which were inherently autonomous from the larger body, was gaining more popularity in ACT UP.”
  • “I remember having this kind of conscious realization that if you stood up and said exactly what you meant and didn’t trail off into some kind of rambling incoherence, which is often the style of many people in meetings, that actually your opinion would be respected or at least heard.”
  • “The Media Committee’s job was to make sure the press covered the action. How do you get the press to pay attention? Ann laid out the fundamental points of doing media for a radical political movement: Well, first of all, you do plan an action that is interesting enough, that you think the press is going to care about it. But you have to woo the press. You have to find a way to get them there. Some of that is about writing a press release that you send to the press that’s interesting enough to make them look at it and say, Oh, I better go cover that—that’s going to be important or interesting or crazy, and will make good pictures and put wild people on television. But we also know that the press doesn’t generally read press releases, so don’t expect to get the press there, just by sending them a press release, because they’re going to throw it in the wastebasket, and you’re just going to have to do it all over again. So you have to call them. And you have to find the right person to speak to. So you have to know how to call a newspaper or television station and say—not ask to speak to a specific person, but say—I’m calling about this, who should I speak to? And let them tell you who to speak to. Then you have to know how to talk to that person, and how to present [the issue]. And you do it first by asking them questions, and saying, What do you know about this? What’s your opinion of such and such? Rather than just throwing something at them. And then, lead them into being interested about this, and say, Well, what you may not know is such and such. Or, We’re doing this, that you might find interesting, and sort of make them think it’s their idea to come do this, rather than haranguing them or lecturing them about—You should be there, and you should be covering this. That will make them sit home, guaranteed. Part of infiltrating the media’s messaging was through simple education, in the hopes of getting our message, and not the state’s, or the corporation’s, across. “The press was so stupid and so lazy, that they would come to every demonstration and ask one question: Why are you here? That was it. And they had no understanding of any issue, and no ability to ask questions about any issue. Ninety-five percent of any news story is what the reporter is saying. The sound bites are a very tiny part of any story. I would tell people, Watch the evening news, and time how much of a story is the reporter’s narration, and how much is the sound bite, and you’ll find that the sound bite is a very small portion of the story. So it’s far less important for you to come up with the right sound bite than it is for you to talk to the reporter before they do the story and educate them, so they will reflect your point of view in their narration.”…“And one of her well-known insights is that you’re not talking to the media, you’re talking through the media.”
  • “Like many women in ACT UP, Anne-Christine came from the reproductive rights movement, which heavily influenced her perspective on AIDS activism. “I actually think it was the closest to the reproductive rights work, because it was the angriest. People in reproductive rights were really angry. I didn’t think the people in the peace movement were as angry at all. I thought that they were sort of morally high ground in the peace movement, but I don’t feel like there was the same direct stake. And I think with AIDS, it was such a direct thing, because people were terrified … Coming out of Haiti, where a lot of people had died and were dying, it felt much more urgent to me. And so it was compelling in that way”
  • “There were two groups of people in ACT UP. There were the groups of people who thought that until they had AIDS, they thought that the government was out there, and working for them. And I went to an affinity group meeting with this guy, I don’t remember his name; and he said it, quite clear. And he was really serious. He said, I can’t believe that my government let me down. I had a good job, I had plenty of money. But when I got sick, the government let me down. I wasn’t getting the services, I got treated like a pariah. Then there was the other group—and it wasn’t only people of color; but there’s another group, I think it’s more of a class thing—who knew that the system stunk, and the system had been letting them down, for years … People with insurance were definitely feeling something different than people going in with Medicaid … There were people that socialized in ACT UP who would never, ever, in a million years, if it wasn’t that situation, even talk to each other on the street. “But I think that’s the thing that held the group together so long, and made it work. Even people you didn’t like in ACT UP, right—you would support them in some way, because you had the same issues … People were dying, it was urgent; a lot of people in the group were dying; and this was it. There was nowhere else to go but ACT UP. And I think some people came to ACT UP or they would have jumped out windows if they didn’t come to ACT UP, because it was also, in a way, some kind of therapy for people coming there. Whether you were rich or poor, that was one of the only places you could talk about your condition, your friend’s condition, whoever you were taking care of. That was the only place to talk about it. And I think that made an alliance that would have never happened anywhere else … And the anger was there. Everybody was pissed. They weren’t getting the services; most people were still treated like pariahs, in the beginning.”
  • “And so César articulates for us that ACT UP and its relationships are, as Matt Brim notes, not just a model of activism but a model of making sense of the problem that activism is trying to address, and the problem that lingers in the lives of individuals, long after the activism creates some kind of positive permanent change. Activism is, consequentially, the process of making sense of one’s experience of the problem that collectively we have transformed. It creates order, demystifies, and allows an understanding of systems that otherwise feel overwhelming and unaddressable.”