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What ACT UP Teaches About Social Change

By Josh Barro
February 04, 2013 5:09 PM EST

(Corrects description of movie in fifth paragraph.)

Edward Koch, who died last week at 88, figures prominently as an antagonist in "How to Survive a Plague," David France's excellent new documentary about the AIDS Coalition to Unleash Power (ACT UP). The film opens with footage from 1987 of a reporter asking Koch, then New York's mayor, why he called ACT UP protesters "fascists" but referred to them in a news release as "concerned citizens." Koch replied, classically, "Fascists can be concerned citizens."

Koch wasn't alone: ACT UP drew a lot of ire from politicians and bureaucrats for its in-your-face tactics, from shutting down the Food and Drug Administration for a day to stretching a giant condom over Senator Jesse Helms’s house. They had upset Koch by shouting him down at a gay history exhibit, and in 1989 they would anger him further (and suffer a minor public-relations disaster) by interrupting mass at St. Patrick’s Cathedral in New York.

But "How to Survive a Plague" shows that ACT UP was a movement that worked effectively within the system at the same time that it worked noisily against it. ACT UP activists weren't just angry about national apathy and inaction on AIDS; they also had specific demands and constructive ideas about how the government and drug companies could do better. Unlike a lot of protest movements, once they got to the stage where the targets of their protests said, "I’m listening. What do you want me to do?" they had concrete answers.

A few things you see ACT UP demanding (and getting) in the movie are: hospital policies that don’t discriminate against AIDS patients; more funding for AIDS research; lower prices for AZT, the first effective anti-AIDS drug; a faster drug approval process, recognizing that 10 years of effectiveness trials didn't serve the interests of people on the verge of death; and allowing HIV-positive people not enrolled in drug trials to take experimental drugs at their own risk, the so-called parallel track.

The movie focuses on the Treatment and Data Committee, which effectively served as ACT UP's in-house think tank and put together many of the policy proposals that the organization succeeded in building support for through direct action. As Anthony Fauci, the head of the National Institute of Allergy and Infectious Diseases at the National Institutes of Healthtold New York magazine in 1990:

At first, when ACT UP was just getting people’s attention, they were very confrontational. I know -- I was their target. But now I realize they have perspective that is extremely valuable. They have some very important people who are informed and decisive and who have pointed out shortcomings in our approach that have led to the implementation of new ideas, most notably the parallel track.

There are lessons here for, among others, Occupy Wall Street. The crucial problem with OWS wasn’t sound and fury, that they weren’t airing their grievances in "quiet rooms" as Republican presidential candidate Mitt Romney wanted. Sound and fury can be useful for drawing attention to problems that are being ignored. OWS's problem was that its sound and fury weren't paired with an actionable policy agenda that could sway powerful people once they were listening.

That said, ACT UP had some structural advantages as it sought social change. There was one major concrete goal -- an end to the AIDS crisis -- around which a movement could coalesce. One reason OWS couldn’t make specific policy demands was that it was a coalition including liberals, socialists and anarchists who were all angry about the status quo but didn’t actually share a common policy vision. Similarly, the Tea Party has sometimes been effective in influencing elections, but it has been hampered by its inability to articulate a coherent and viable policy agenda.

While ACT UP looked like a radical movement, many of its policy goals were quite conventional. Stopping infectious disease epidemics is considered across the political spectrum to be a proper function of government. The FDA and NIH already had this as part of their mission and ACT UP mostly wanted them to do a better job and have more money for it. Politicians and bureaucrats may not have been initially focused on the AIDS crisis like they should have been, but they tended to agree that better HIV treatments and fewer infections would be good things. As a result, ACT UP’s disagreements with its adversaries were mostly reconcilable, and they could win without anyone else really losing.

The most radical aspect of ACT UP’s agenda may have been convincing politicians and the public that gay men, who were bearing the brunt of the AIDS epidemic, were real people whose concerns merited the government’s attention. They also took on socially conservative institutions that didn't want to publicly discuss gay sex or condom use. Even here, ACT UP had the advantage of building on social shifts, starting with sexual liberalization and the Stonewall riots in the 1960s.

Not every movement for social change can use this model. Sometimes, getting what you want requires getting some other powerful group -- such as bank shareholders, defense contractors or labor unions -- to lose something it values. But that’s all the more reason to know what you plan to request from the powers that be before you start shouting for their attention. And sometimes, if you do the research, you can come up with ways to achieve your goals without upending the system, as ACT UP often did.

This policy success is a reason that even some of ACT UP's one-time opponents are able to look back favorably on the organization's role in the AIDS crisis. A few months before his death, Koch posted a glowing review of "How to Survive a Plague." Koch's review strangely did not address the fact that he was a villain of the film; he neither defended his record as mayor nor apologized for it. But since he called for some of the activists who used "fascist tactics" against him in 1987 to receive the Presidential Medal of Freedom, one can only assume that his views on ACT UP had come around.

(Josh Barro is lead writer for the Ticker. Email him and follow him on Twitter.)

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