How ACT UP Remade Political Organizing in America
The coalition that fought against AIDS stigma and worked to slow the plague changed patients’ rights and contemporary protest movements.
How ACT UP Remade Political Organizing in America
The Activists
How ACT UP — the coalition that fought against AIDS stigma and won medications that slowed the plague — forever changed patients’ rights, protests and American political organizing as it’s practiced today.
SUBMICROSCOPIC INFECTIOUS agents have a way of revealing the worst in us, and the best. That is the story of the AIDS epidemic generally, and in particular of ACT UP — the 33-year-old radical direct-action group formally and loftily called the AIDS Coalition to Unleash Power. For nearly a decade in the 1980s and 1990s, ACT UP was a ubiquitous and unnerving presence, not only in America but in 19 countries worldwide. At its peak, it claimed 148 chapters, and though its ranks remained relatively small — numbering perhaps no more than 10,000 — it terrified and angered much of the population, whether by halting rush-hour traffic and taking over public spaces with “die-ins” and “kiss-ins,” at which members laid on the ground or made out with one another, or by disrupting scientific conferences and political affairs with foghorns, fake blood and smoke bombs (even, in one instance, overturning banquet tables).
Generally, the news media didn’t think much of their work, branding the group both vulgar and counterproductive. “Far from inspiring sympathy,” The New York Times said of ACT UP in 1989, their methods were “another reason to reject both the offensive protesters and their ideas.” Coverage wasn’t much warmer in some gay newspapers, which were owned by older and more conservative types who saw them as churlish mobsters, spoiled and rude. ACT UP didn’t entirely disagree. They were, as their motto goes, “united in anger.”
And there was much to be angry about. It’s hard to remember now how criminally inept the establishment’s reaction was to a disease that disproportionately affected gay men. It took four years after the virus’s discovery for President Ronald Reagan even to mention AIDS in public, in 1985, and almost 600 American deaths for The Times to give it a front-page headline. Congress, barely acknowledging the problem, attached anti-queer provisions to public health budgets while some states considered proposals to quarantine those who were H.I.V. positive. It’s also hard to remember that on the night ACT UP was founded, in 1987 — six years into the epidemic and 15,000 American deaths later — there was still not a single pill on the market to prescribe. It sure seemed likely that every gay man would perish without a tear from the rest of the world.
At least that was the nightmare scenario of the playwright Larry Kramer. In New York in those days, Kramer had a certain reputation for screaming about AIDS when everyone else was crying about it. While so many of us were caring for the dying and mourning the dead, he ranted at the White House and City Hall and lashed out at his beloved gay community, whose members he denounced as useless “sissies” incapable of fighting for our own survival. His fury did little to galvanize people behind him. Instead, it got him removed from the board of Gay Men’s Health Crisis, an AIDS services agency he’d co-founded in 1982, and frozen out of gay society. But it wasn’t long before more people were ready to listen to him: By the time he was asked to give a talk at the Lesbian and Gay Community Services Center in 1987 — he was a substitute that night; Nora Ephron had canceled — the virus had found a second generation. These younger queers, many of them in their 20s, had a certain feeling of entitlement that eluded people who’d come of age before Stonewall, and they were furious — shocked, even — to realize how the health establishment had forsaken them.
In New York City, their weekly meetings quickly became the epicenter for all information about the disease, the World Wide Web for rumors and facts about new drug compounds and warnings about political perils, the text thread for strategizing our collective survival. Doctors and researchers from neighborhood hospitals made sojourns to ACT UP’s run-down meeting hall at the center on West 13th Street with news from the front. Elected officials and community organizers market-tested new policies there. And ordinary people — mostly white gay men at first, but always alongside a strong contingent of lesbians and people of color — came looking for ways to respond. They soon diversified as their numbers grew, from 50 to 350 to 800 and more.
They had little in common beyond what political scientists call a linked fate: Everyone in those meetings knew someone who was dying or had died, or else they were marked for death themselves. This brought a ferocious urgency into the room. With no formal leadership (unlike many civil rights movements that came before, but much like most of today’s protest groups), ACT UP was the kind of chaotic public square that Hollywood screenwriters might dream up, an unruly Athenian democracy where ideas were aired and debated and where people thought — and screamed, and cried — out loud. It was where anger was converted to action. Protests were planned for nearly every week, against targets ranging from City Hall to Wall Street, hospitals to homeless shelters. Brandishing instantly iconic banners and posters — like the arresting one-sheet that warned that “Silence = Death” — the group’s members took over evening news broadcasts and shut down Grand Central Terminal and St. Patrick’s Cathedral in highly photographed interventions that proved the effectiveness of their methods and their design-driven messaging. Not even Cosmopolitan magazine was spared, not even the Mets (the former for telling young women they weren’t at risk, and the latter more opportunistically: showing up at the stadium got their point — “Men, Use Condoms or Beat It!” — on national television). ACT UP was a place to find a sense of empowerment, if not always power itself.
DESPITE THESE MUTINOUS mobilizations, little changed in those first years. Just one pill materialized — called AZT and released in 1987, it was the most expensive medication ever marketed — but it did nothing to extend life. Congressional spending was woefully inadequate. Pharmaceutical companies lacked the necessary urgency. The nation’s leading Catholic cardinal still inveighed against condom use and gay rights. Televangelists still welcomed our deaths.
In the face of frustration, ACT UP pivoted brilliantly. Instead of demanding action from others, they took on the work themselves. Breaking down the myriad problems inhibiting the response to AIDS, the group spun off into committees to address them one by one: a women’s committee, because women were excluded from drug trials and disease statistics; a needle-exchange committee, because no one else was trying to prevent the spread of disease among IV-drug users; a committee concentrated on minorities, because cases were growing in those communities; a housing committee, because so many lost their homes after lengthy hospitalizations; even a science committee, because the labyrinthine research institutions lacked a cogent agenda. Each group functioned autonomously, but all were bound together by ACT UP’s belief that, through deep self-study, its members could bring the pandemic under control.
And that is indeed what they did. Members went on to write (and help push through) legislation redirecting federal funding, change the ways insurance companies function and build housing for the homeless. Eventually, ACT UP and its spinoffs proved to be full partners in bringing effective antiretroviral drugs to market in 1996. Along the way, they revolutionized how pharmaceutical sciences are practiced and health care is provided. Today, patients of most diagnoses are involved in research through formal advisory boards, a legacy of ACT UP’s citizen-science activism. Roughly 23 million people are alive today thanks to the drugs that members helped pioneer; few human beings can claim such a massive humanitarian impact. They did this not by being nice — oh, they were never nice — but by being right. And by helping their adversaries find their way as well. Many people the organization targeted because of their inaction, from Dr. Anthony Fauci at the National Institutes of Health (now back in the news, with Covid-19) to politicians like Jesse Helms and drug companies like Merck & Co., had an eventual change of heart. Even President Reagan came around, though tepidly, and not until he was long out of power and more than 90,000 Americans had already died.
In the meantime, ACT UP had also turbocharged the L.G.B.T.Q. movement in ways that no one dreamed possible, fueling one of the fastest social transformations in human history. When the group began, homosexuality was illegal in half of U.S. states and much of the world. Today, marriage equality is legal in 28 countries. “We saw there was a degree of possibility in life that we didn’t expect as a community of queers,” says the New York artist Robert Vazquez-Pacheco, who attended his first ACT UP meeting in 1988. “We saw that things could change.”
WHAT LESSONS CAN these alumni, most now in their senior years, pass along to people craving change today? For starters, please remain calm. (Coincidentally, “Please Remain Calm” is the title of early member Peter Staley’s upcoming memoir.) In a piece of good timing, new books are impending from several ACT UP veterans, including Garance Franke-Ruta, Mark Harrington, Sarah Schulman and Ron Goldberg, who was responsible for ACT UP’s most memorable protest chants. Inside the chaos of this mass-death experience, people found that being a part of a group steadied their minds. “ACT UP didn’t just save lives of people with H.I.V., to the extent that it did that,” says Franke-Ruta, who joined ACT UP in 1988 and is now a political journalist. “It also saved a lot of other people who otherwise would have been overwhelmed by the times.”
It wasn’t always easy to keep levelheaded in ACT UP meetings, which could devolve into fractious infighting and bitter turf wars. But for eight years, the group’s members managed to come together again and again, keeping a steady focus on the plague. It’s worth noting that ACT UP never did stop meeting. Though only a handful of chapters remain active, the core New York group still gathers every Monday night in the same West Village space, now glamorously renovated. And many original members continue to fight AIDS in numerous related ways — as leaders of powerful agencies like amfAR, Housing Works and Treatment Action Group — and even unrelated ones: Sean Strub, who went on to found POZ magazine in 1994 and publish his own book, “Body Counts: A Memoir of Politics, Sex, AIDS and Survival,” in 2014, now battles AIDS stigma as the mayor of Milford, Pa. Their work is not over.
Which leads to a second lesson: Be patient. And to a third: Don’t be intimidated by experts; anybody can become an expert. These principles have certainly influenced the Black Lives Matter movement, which has continued to evolve since 2013. Like ACT UP, it brings together people tackling a waterfront of disparate issues: everything from voting rights to gender justice, health care, decarceration and immigration, says the Columbia law professor Kendall Thomas, whose ACT UP bona fides date to 1987. “The movement for black lives would look very different if its thought leaders — many of whom are self-identified black queer people — hadn’t been able to draw on the example of ACT UP,” he says. “Black activists and their allies now understand that the struggle for black freedom has to make connections across many different constituencies and concerns that used to be seen as different and disconnected.”
You can find ACT UP’s DNA in other contemporary movements as well. The ill-fated Occupy Wall Street protests that began in 2011 have regrown into an array of splinter groups battling income inequality, student debt, the gun lobby and climate change. How much does the “Greta Thunberg effect” owe to ACT UP in its success in launching a global student movement to fight carbon-dioxide emissions? Like their forebears, Thunberg and her followers — mostly teenagers — know the scientific literature thoroughly, leaving detractors little to attack them with besides ad hominems.
Add to ACT UP’s offspring the gun-control activists whose numbers grew following the Parkland massacre in 2018, the growing global movement to end transgender murders, the Women’s Marchers and even those working independently across nations to develop safety strategies during the current Covid-19 pandemic. Progressive activism owes a debt to these survivors of the AIDS crisis, these stalwarts from ACT UP, for their legacy has left us all better equipped to “challenge and reconfigure” power imbalances, as Thomas sees it. “We have this archive of a political practice that is available to everybody.” ACT UP’s veterans, aging as they may be, aren’t yet finished unleashing power.
David France is the author of “How to Survive a Plague” and the director of the forthcoming documentary “Welcome to Chechnya.” Rosie Marks is a documentary photographer. Her first book, “08.14-10.19,” will be published this year. Photo assistants: Evie Shandilya and Tucker Wyden.
