Victory: The Triumphant Gay Revolution - Linda Hirshman (2012)

Chapter 7. ACT UP: Five Years That Shook the World

When the curtain rose on Larry Kramer’s AIDS play, The Normal Heart, in 1985, the audience saw a wall of names. Each person named had died of AIDS. “We’re being treated like shit,” Ned Weeks, the Kramer character, screams, “and we’re allowing it. And until we force them to treat us otherwise, we get exactly what we deserve!” Social-movement thinkers would have told Kramer/Weeks to save his breath. AIDS was mysterious, and people were in denial. Where would their critical consciousness come from? Governments were killing by inattention, their responsibility for the spread of the terrible illness largely invisible. Act up? Who was going to act up? And who would they act up against?

Suddenly conditions changed. In 1985, the United States Patent Office issued a patent for a test to detect the AIDS virus in the human bloodstream. Any American in any stage of denial could find out if the illness had infected him. Up until this point, there was no way to know if a person was infected. And even in 1985, it was not yet clear how many months or years would pass before symptoms of the disease would appear, so even seemingly healthy people could be infected and spread the disease unknowingly. Then, countless gay men learned that their life expectancy had just been reduced to a handful of years. Sexual promiscuity without precautions now carried the risk of suicide for those who were not HIV-positive or homicide for those who were. AIDS was no longer mysterious, and no one could rationally be in denial.

In 1986, the federal government took affirmative action against gay people. In the long-awaited federal challenge to the criminal sodomy laws, the Supreme Court of the United States ruled in Bowers v. Hardwick that gays and lesbians were immoral actors, unworthy of the protections of the United States Constitution. For them alone, there was no privacy principle in the liberal state. In more than half the American states, they were committing a crime every time they had sex. Any other conclusion, Justice Byron White wrote for the court, would be “facetious.” In the face of this decision, no one could say that the government’s inattention to AIDS was innocuous.

Piled on top of five years of living in a society perfectly willing to let them die, the Supreme Court decision radicalized the gay movement. Gay people had come out. They had re-created the caring family. And they were still not citizens. If they were going to do something to save their own lives, they needed power and they had to act collectively to get it. The AIDS Coalition to Unleash Power (ACT UP) was born.

Out Gay People Were the Tinder

Thirty-nine-year-old Victor Bender, privileged son of a family of Jewish doctors, watched his doctor shut the hospital room door behind him.

“I have bad news,” the physician said.

Once Bender’s spots turned purple in 1985, he couldn’t protect his midwestern sister from knowing he was gay. His sexual orientation made her uncomfortable in her heartland town, but in his world, the time for discretion was over.

Coming out is the central element of the gay revolution. There’s an old gay thought experiment from way before AIDS. What if every gay person woke up one morning and found he had turned green? No more closet, the exercise concludes, and the gay revolution is accomplished. The purple lesions of Kaposi’s sarcoma made the green thought experiment a horrible reality. As time went by, the spots came out, and the society learned that everyone from Rock Hudson to Joseph McCarthy’s right-hand man, Roy Cohn, was gay. In 1982, Dan Bradley, head of the Legal Services Corporation, became the highest-ranking federal official to come out. By 1985 his HIV infection was public information. Time and again during the crucial years to follow, FODs (Friends of Dan), like Senator Lowell Weicker’s wife, Claudia, and First Lady Hillary Rodham Clinton, made important decisions to fight AIDS and help the gay revolution along.

Social movements are almost always preceded by changes in the background conditions. When the cultural changes called “the Sixties” changed the background norms of open gender identity, Stonewall ensued. For the gay revolution, part of what brought change was the technology of the blood test for AIDS. Before the test, AIDS victims like Victor Bender were often at death’s door when they found out they were sick and came out. They had little time to act politically or in any other way. After the test, they could learn they were infected long before they even felt sick.

As the illness and the technology recruited newly outed troops for the movement, they had a general just waiting to lead them. He’d been waiting for a long time. In 1983 the CDC reported AIDS deaths of “1,112 and Counting,” and Larry Kramer’s article of the same name appeared almost immediately in the gay newspaper, the New York Native. “1,112 and Counting” was reprinted in practically every gay newspaper in America. Like Carl Wittman’s “Gay Manifesto” just before Stonewall and “Woman Identified Woman” right after, “1,112 and Counting” was one of those inspired documents that both captured and transformed the movement.

By 1983, Kramer knew that the only way this epidemic was going to be stopped was through the power of the United States government. In order to command its attention, gay people had to constitute themselves into a political movement. It would have been nice to get a few thousand dollars from the revelers at Fire Island to help Alvin Friedman-Kien look for a virus, but the Centers for Disease Control (CDC) needed two hundred thousand dollars just to rewrite their questionnaire: “The country, President Reagan, and the National Institutes of Health, [and] Congress,” Kramer wrote in “1,112 and Counting” are “the most important ears of all.” Even his attack on Mayor Koch, who had been eerily silent as the epidemic raged in his city, concludes with the assertion that if Koch had spoken up, the national administration would have had to listen.

Although demanding an extraordinary response from the government, Kramer invoked very conventional activism. You are victims, he told the reader, this is a civil rights movement, come out and push back, using the techniques of direct action. By 1983, Kramer had gathered a new group from the activists he once scorned—the Gay and Lesbian Task Force, Lambda, and the rest. He hoped they wouldn’t have to conduct sit-ins or tie up traffic, he said, but, just in case, his new group, the AIDS network, had been taking lessons from an old-time aide to Martin Luther King.

Kramer was not alone. Ginny Apuzzo, the prescient and gifted lesbian head of the Task Force, was trying to, in her words, turn her ship around. Kramer’s and Apuzzo’s first try at mobilizing the anger, what he called the AIDS Network, failed in 1983. But the memo, like the crowd of newly out gays and lesbians, was everywhere, like tinder, waiting for the spark.

Social Change Was in the Air

All the elements for social movement were present. By the end of 1986, people didn’t see the disease as their fault so much. They knew that even if they had limited themselves to one partner, as the GMHC chorus warbled, many had still been exposed to AIDS. Warnings about what they had to do had been too slow or too ambiguous to save them. As Victor Bender said, “They said limit your partners, not have no partners.” Even if they adopted the strict and explicit safe-sex guidelines that people like Callen and Berkowitz had developed, it was often too late to save them. So when the test brought bad news, the mortal danger seemed less a matter of something they had done and more a medical condition that the official health authorities were not heeding fast enough.

And they had hope, which always makes for a dangerous combination. Once the basic science identified the retrovirus that caused AIDS and, thanks to Congress, after five long years, a reasonable amount of money started to flow from the National Institutes of Health (NIH) to researchers, talk of possible treatments increased exponentially. There was AZT, an old failed cancer treatment that pharmaceutical giant Burroughs Wellcome had taken off the shelf. There was word of other drugs, like ribavirin. But the new drugs were proceeding through the legendarily glacial process at the federal Food and Drug Administration, which approves drugs for use. The FDA gave the newly aroused victims a target.

Their adversaries were showing weakness. The governing elites were no longer so united on the subject of AIDS. In 1984, someone leaked to congressional staffer Tim Westmoreland the futile request that assistant secretary for health Ed Brandt had sent, urgently demanding $55 million in AIDS funding from Reagan’s secretary of health and human services, Margaret Heckler. Brandt denies that he was the leaker, but that year the money for AIDS went up 60 percent. A year later, Westmoreland’s contact at Health and Human Services suddenly lost patience with the dancing around.

“Pssst,” she said. “Do you know the bench by the fountain in Bartholdi Gardens, right in between the Health and Human Services (HHS) building and the House Office Building? Meet me there.” When Westmoreland arrived, his contact handed him a plain brown envelope containing a list of every budget request for every AIDS-related program at every level of the process for 1985. Knowing what Heckler was sitting on, Westmoreland’s boss, Representative Henry Waxman, chairman of the House Subcommittee on Health, threatened to subpoena the scientists’ requests for money. When she finally gave in and turned over the documents, Waxman gave her all the money her scientists wanted.

In 1988, AIDS spending increased $450 million, the largest jump to date. In essence, a handful of gay staffers and sympathetic employers, like California representatives Waxman and Phil Burton and New York’s Ted Weiss, started a process of inserting AIDS funding into larger spending bills until the money for research began resembling a meaningful response to the seriousness of the threat. When AZT started looking promising, but still rapaciously unaffordable, for the ten thousand AIDS patients otherwise near death, the five-year-old Human Rights Campaign sent its lobbyists to Lowell Weicker, Republican head of the Senate Appropriations Committee, to ask for money for the drug. Weicker’s wife, Claudia, who happened to be in his office, had worked for Dan Bradley at Legal Services. One of the gay lobbyists looked at her and dropped that “Dan Bradley, whom I think you know, is sick.” The next day Weicker took the floor and put in $49 million to fund AZT for people who could not afford it. Anthony Fauci, who by then had been head of the division of the National Institutes of Health responsible for AIDS for more than a year, was plotting with congressional staffers at his gay chief deputy’s apartment to circumvent his own bosses at the White House. Even Ronald Reagan’s surgeon general, the impeccably conservative C. Everett Koop, had let his medical ethics get the best of him and was trying to say “condoms” in public. Victims were angry and hopeful, elites were divided. Any theory of social movement would predict that a critical moment was at hand.

Old activists stirred to life. The still irresistible and charismatic Marty Robinson, whose zaps had brought the civil rights direct-action tradition to the gay revolution in the Gay Activists Alliance (GAA) days, and some old movement chums started a new group, the Swift and Terrible Retribution Committee. The indefatigable Robinson then organized twelve of his swift and terrible demonstrators into the “Lavender Hill Mob.” A small group of gay men in the arts started potluck consciousness-raising dinners. They began discussing a poster initiative. Silence? Death? Silence=Death.

Fliers equating silence and death and displaying the pink triangle the Nazis had pinned on homosexuals were pasted all over Greenwich Village. The artists wanted their posters to tell the gay community they had to act, that silence was tantamount to complicity. The upright triangle symbol, the inverse of the Nazi symbol, is now a proud assertion that gays will not be taken silently to their death.

Many in the movement fiercely opposed the Nazi analogy. But when National Review editor William Buckley published a piece in the New York Times that year suggesting that HIV-positive men should be forcibly tattooed, the swift and terrible committee had a mob of protesters outside the offices of his conservative magazine the next day. Maybe he didn’t mean any harm. Shortly after Buckley’s essay appeared the followers of weird political maverick Lyndon LaRouche got a referendum, ultimately unsuccessful, put on the ballot in California to classify AIDS as a communicable disease, with attendant danger of forced testing and quarantine. Overwrought or not, silence being death once, the resurgent activists were out to make sure it never happened again. Several of the Silence=Death Project were Jews; they bore the memory of the Holocaust in their genes, Silence founder Avram Finkelstein says. One thing no one wanted to be in the late twentieth century was the silent dead Jews of Europe.

The Spark: Bowers v. Hardwick

Supreme Court justice Lewis Powell’s gay law clerk, Carter Cabell Chinnis, saw no reason to share his sexual orientation with his employer. Chinnis, Virginia gentleman, BA Princeton, JD Yale Law School, Supreme Court clerk, was on the fast track. When his boyfriend had come to visit the court, he introduced the man to the Justice as a friend from New Orleans. In June 1986, Justice Powell cast the deciding vote in Bowers v. Hardwick, upholding Georgia’s criminal sodomy law. Unlike any other sex, gay sex, or “sodomy,” the court ruled, was outside the privacy protections of the Bill of Rights.

Bowers was an ugly surprise. For a while the gay legal activists had been looking for a case to test the sodomy laws, and, in a society that values the right to be left alone, Bowers seemed like the perfect test case. The gay plaintiff, Michael Hardwick, was actually blowing an acquaintance in his apartment in Atlanta when a cop walked into his bedroom to serve a warrant for an unrelated offense and arrested him for sodomy. Even the relatively conservative federal Court of Appeals in Georgia affirmed that Hardwick had a right to privacy in his own bedroom and struck the Georgia sodomy law down.

When the Supreme Court exercised its discretionary right to review the decision, there was much nervous justice-counting in the gay legal institutions. Going in, the court appeared to be divided four to four, with the outcome resting on Justice Powell. Powell, it later emerged, had voted in favor of Hardwick’s claim in the preliminary conference among the judges and then he changed his mind. Chinnis did not have to write the opinion. Powell assigned that task to one of his other clerks, a married Mormon father of three. After retiring a few years later, Powell later apologized for his vote in Bowers. He actually didn’t know any gay people, he said.

A Supreme Court decision like Bowers has the virtue of leaving no room for spin. In the four decades before rejecting the gay claim, the court had extended privacy rights to every single other group in society. In addition to completely disregarding their own precedents, the opinions expressed an unprecedented degree of moral disgust with the gay minority. Chief Justice Warren Burger wrote a special opinion in Bowers, taking pains to emphasize the historically negative attitudes toward homosexual sex, “a crime not fit to be named,” and concluded that protecting the sex lives of America’s homosexuals would cast aside millennia of moral teaching.

The Supreme Court decision triggered street protests all over the country, in some cases for the first time since Stonewall days. Calling for a march on Washington, Reverend Troy Perry said he’d never seen people so pissed. The protest in New York became so angry that movement leaders tried to send the people home, but they would not leave. A month later, at an event honoring Chief Justice Burger, the Lavender Hill Mob appeared where the GAA had stopped the opera all those years ago, marching and chanting.

Once unleashed, the activists were not going to limit their curses to the life-tenured members of the Supreme Court, whose ruling had just come down. In March 1987, the Lavender Hill Mob traveled to Atlanta to protest at the CDC conference on AIDS. No sooner did the Mob get back to New York than they heard that Larry Kramer had agreed to take the place of Nora Ephron as the speaker at the monthly Gay and Lesbian Community Center speaker series in Chelsea. People mobbed the hall to hear what he would say and to see who else was turning up.

Larry Kramer Lights the Fire

On March 10, 1987, Kramer told the crowd at the Gay and Lesbian Community Center that the political moment was ripe. The epidemic wasn’t their fault because they had had sex before they knew it was dangerous: “The real tidal wave is yet to come: people who got infected in 1981. You had sex in 1981. I did too.” There was hope: “Dr. Mansell has five drugs waiting to be tested.” The government was the problem: “One of the top AIDS doctors in the United States can’t get protocols through the FDA.” And then he called the gay community out: “All power is the willingness to accept responsibility.”

The Left, which had been mostly dormant since the antiwar movement fifteen years before, offered little by the way of inspiration. So Kramer used an example from the vibrant social movement of the eighties, the right. A thousand Roman Catholics had recently marched on Albany, the state capital, Kramer said. Now the gay community needed to do the same. As he spoke, someone from the meeting ran up to the center office to book the room for another meeting. An hour later, someone ran up to the office and booked the room for a meeting every week.

Two days later, three hundred people came back to the center for the first meeting, and the AIDS Coalition to Unleash Power was born. Soon there were chapters all over the country.

Shutting Down Wall Street and Pennsylvania Avenue

Before cabbie and artist Michael Nesline’s lover died of AIDS, the couple had gone to see The Normal Heart. “That Kramer guy really knows what he’s doing,” Nesline’s companion said. “You should try to connect with him.” So when Michael heard about the fuss at the Gay and Lesbian Center, he decided he’d go to the follow-up meeting two days later.

Nesline and the others at the meeting were all really upset that they were being ignored. As he recalls, “We’re middle class white guys and we’re not used to being ignored and so what can we do to get what we want? And what we want is for other people to know what’s going on, and we want the New York Times to write about it, even inaccurately. We needed to draw attention to ourselves and to our problem. So, we probably should have some kind of demonstration. Tim [the first facilitator, Tim Sweeney of GMHC] solicited suggestions for where would be a good place to have a demonstration. And, I guess, you know, majority rule decided that City Hall–Wall Street would be a really good place to have a demonstration. So, we began to make plans for that.”

What is more powerful than a bunch of white guys who aren’t getting what they think they deserve? Ann Northrop, the savvy TV producer and old-time activist who often facilitated the ACT UP meetings, says ACT UP succeeded “because gay white men realized they did not have the privilege they thought they had.”

White men have contacts. Audience members at Harvey Fierstein’s play Safe Sex found leaflets for the Wall Street demonstration on every seat. White men ask for what they want. ACT UP threatened an action at the gay men’s chorus performance of Peter and the Wolf at Avery Fisher Hall if they were not allowed to announce the demonstration to the music lovers. “We’re dying,” the ACT UP representatives said to the hesitant chorus organizers. “And you’re making a distinction between politics and culture?” White men have access. One day before the action, Larry Kramer’s op ed piece, “The FDA’s Callous Response to AIDS,” appeared in the New York Times. White men have friends in high places. The prop shop at the Public Theater made an effigy of FDA chairman Frank Young.

The old ACT UP activists remembered from their antiwar days that nothing attracts the cameras like getting arrested. On March 24, 1987, all morning traffic on Wall Street stopped. Hundreds of demonstrators crammed the area, screaming and chanting and hanging the effigy of Young. ACT UP demonstrators handed out an information sheet. Handsomely printed with the Silence=Death fuchsia triangle, the handout demanded immediate release by the FDA of a very specific list of seven drugs, each with its pharmaceutical developer tag attached. The pamphlet listed a series of increasingly broad demands, culminating in demand number 7: “Immediate establishment of a coordinated, comprehensive, and compassionate national policy on AIDS.” The 1987 demand list was a perfect snapshot of ACT UP politics—demands for ribavirin and demands for world peace.

Protesters charged the police barricades and lay down in the street. There were only seventeen arrests, but the next day every major newspaper in the country carried pictures of the protesters being put on stretchers and carried away. Suddenly even the most staid members of the gay establishment wanted to get arrested. Three months after the Wall Street demonstration, the normally well-behaved HRC demonstrated across the street from the White House. Led by their board chairman, dying activist Dan Bradley, wearing a large funeral wreath, they blocked Pennsylvania Avenue. The police, wearing bright yellow rubber gloves like the ones people use to wash dishes with, picked them up and carried them to the waiting vehicles. Again the photographs were everywhere. Dan Bradley, former president of the Legal Services Corporation, carried off like a dirty dish.

ACT UP owes a huge debt to the revived activists of the Lavender Hill Mob and the like, and in turn to the Stonewall-era GAA. But American activists have short memories. After fifteen years of conservative political dominance, ACT UP seemed like a resurrection. Every radical movement, gay or not, that came after—Queer Nation, Lesbian Avengers, GetEqual, protests against the World Trade Organization—identifies its roots in ACT UP. Looking back on it in 2010 Kramer said, “ACT UP was the single most important thing the gay population ever achieved.”

Man, the Political Animal

In 2000, Professor Eric Rofes found himself teaching his social activism class at Humboldt State University in California from the writings of Martin Luther King and the music of Joan Baez. “Don’t you have anything a little more about us?” one of his students asked. When Rofes started to put together some contemporary teaching materials about the present, he realized the organizing around AIDS was the “starting point” for modern activism.

How did they do it? Part of it was their perfectly pitched structure. Jim Eigo, experimental writer and longtime participant in random political actions—a little antiwar, a little Central America—wandered into the ACT UP gathering at the Gay and Lesbian Center early in 1987 by mistake. He was looking for a panel on the effect of Bowers v. Hardwick. The table by the entry was full of literature that everybody was producing themselves. And there was a buzz everywhere.

It was the ACT UP Monday meeting. For five years, ACT UP solved the problem of how to keep order in a charismatic movement. It seems like an insurmountable obstacle. Lefties looking for action flooded into ACT UP. The meetings were so large, they had to be moved from the center to a bigger auditorium. The Gay Liberation Front had lasted six months, the GAA two years. When the Task Force tried to escape the dynamic, it became a bureaucracy with a philanthropic board and professional employees. HRC started that way intentionally.

ACT UP found the sweet spot between bureaucracy and anarchy. Frequent cofacilitator Ann Northrop says, “I ran the show just like I used to produce the news.” People who wanted to present something had to get it by the facilitators first. No one could speak a second time until everyone who wanted to speak had had a turn. Whenever people took an interest in doing something—the women, predictably, formed one of the most visible caucuses—they could organize themselves to do it, subject only to the general principles of the organization and submission to the electoral power of the general meeting. “Discussion might provoke a proposal for action,” Northrop recalls. For example “This insurance company has rejected claims. . . . Oh we’ve got to shut down the insurance company. . . . Thursday we’re going to picket the insurance company. . . . Let’s have a poster party Wednesday night and we’ll show up Thursday or we will refer it to the actions committee and come back to the floor with a plan.” They had a democratic form of government, but “it wasn’t one of those hippy-dippy we-all-have-to-agree things,” Northrop says. In a small, but significant, dispute, for example, people started arriving late. The group discussed the lateness; they voted that the meetings would start on time and, says Northrop, “That’s what we did.”

The process allowed most people who wanted to make their presence felt in the political arena to do so. In the lobbies of the meeting place and on other nights, committees and affinity groups were pursuing much more particularized politics and nonpolitical relationships. The Actions Committee planned demonstrations. The Treatment and Data Committee was studying chemistry. Wave 3, a group of twenty who were arrested together, had a weekly potluck supper.

ACT UP produced probably the most effective visual propaganda since the Bolsheviks. “Who did those Silence=Death signs in the Village?” people kept asking. At the second or third meeting, Silence=Death cofounder Avram Finkelstein finally stood up. “We did. And we’d be happy to share it with ACT UP.”

A few weeks later, ACT UP artists formed an art collective, Gran Fury (for the Plymouth cars the cops drove). Gran Fury is what you get when red-diaper babies like Finkelstein are running an ad agency. Not for them the homemade posters of lefty movements. They wanted their visuals to look like advertising, like Silence=Death did. Because advertising is what people read. Most of the graphics had didactic messages: KNOW YOUR SCUMBAG; THE GOVERNMENT HAS BLOOD ON ITS HANDS.

Gran Fury member Marlene McCarty was very close to the European artist who was making the culturally radical Benetton ads, like the one with the black woman and the white baby. So, when the rumor started that you could get AIDS from kissing, McCarty and artist Donald Moffett made a billboard to tell the world that kissing didn’t kill: GREED AND INDIFFERENCE DO. The billboard showed three couples, two men, two women, and one man kissing a woman, all interracial, just like the “we are the world” radical-chic Benetton ads. The Gran Fury members thought it was hilarious that the art world accused them of making propaganda. Of course they were making propaganda! Since the government wasn’t telling people what was going on, they were going to tell people what was going on. “It was polemic, flat footed, propagandistic,” McCarty says proudly, “everything art isn’t supposed to be.”

Thrust into a situation where they had to actively engage in politics literally to save their lives or the lives of people dear to them, the activists in ACT UP found the independent rewards of an engaged life. “The group had structured my entire life from 1987 to 1993,” direct-action maestro Greg Bordowitz says. “It was my life. It was all I did. Every meaningful relationship I had was with people who were in ACT UP. There was nothing else outside of it.”

We Die/They Do Nothing: Seize the FDA

Despite all the talk of the Holocaust, the United States government did not create AIDS to kill gay men. Instead the government failed to act. At a critical juncture after Stonewall, the modern gay movement had formed around a failure to act, when the governments of the cities where they gathered would not rein in their abusive police forces. The old GAA activists whose fingerprints were all over ACT UP knew what to do in the face of a failure to act.

The activists benefited from the fact that the failure to act to stop AIDS arose in one of the few areas where government has an obligation to act and a history of acting to help its population: public health. Despite all these social-movement advantages, government inaction still might not have triggered ACT UP. But it looked like the government was not just failing to act, it was standing in the way of AIDS victims’ getting the cures they hoped for. Soon after its founding, ACT UP turned directly to the source of the problem. Seize control of the FDA.

By 1988, the Food and Drug Administration had it coming. Most of the forty-six new drugs approved by the United States in 1985 and 1986 were available five years earlier in foreign markets. While the FDA took its sweet time in 1988, more than twenty thousand people died of AIDS. One of them was Dan Bradley. He had told his best friend that he wanted to be buried in the Kangol hat he thought made his eyes look blue and the sweater she had knit him. When she got to the church, she said, “Will you open the casket?” So the funeral guy opened it, and she said, “Well, where’s his cap?” And he said, “We were wondering what that cap was doing in there.” And she said, “Well, he needs to wear that cap.” So she put the cap on his head, and then they closed the casket.

ACT UP was ready. A committee, Treatment and Data (T&D), that would focus on drug development and approval, had been formed when Dr. Iris Long, a heterosexual pharmaceutical chemist from Queens, walked into an early ACT UP meeting. “You people don’t know squat. I’m going to teach you,” she announced, “about how drugs come out.”

The science wonks on Long’s T&D Committee were having a devilish time getting information, much less cooperation, from the FDA. ACT UP had to get the Lambda lawyers to file a Freedom of Information Act suit just to get lists of the drugs the government was considering; but to make an impact they knew they had to get the movement activists over at the Actions Committee to help them. Their eye fell on Greg Bordowitz, a handsome and charismatic activist who had come to ACT UP and gravitated to the lefty Actions. T&D heavy hitters David Barr and Mickey Wheatley invited Bordowitz to lunch and pitched their plan for an action against the FDA. First, and to his surprise, they told him he had become a real force in ACT UP. Then they told him about their idea of targeting the agency, rather than the usual suspects, Congress and the White House. Bordowitz was kind of skeptical; the proposal was so different from the direct-action politics he was used to, but Barr and Wheatley persuaded him to present the idea to the Monday meeting. Directing action against the FDA was a lot like the GAA showing up at John Lindsay’s presidential fund-raiser. The activists did not need changes in the formal law. They needed to make inaction more painful for the decision makers than action would be.

Bordowitz had figured out that ideas that seemed to spring full-armed from the mass meetings on Monday had usually already been lobbied in the various affinity groups that met on other nights. He went to a meeting every night, sometimes two, explaining to each group why seizing control of the FDA was good for women, people of color, whatever. He dubbed it “Seize Control of the FDA.” The New York FDA activists repeated the process at a meeting of representatives of all the big ACT UP groups around the country, convincing everybody that the FDA was the place for the new activist movement to be. They formed a national group, ACT NOW, for the action against the FDA.

The “Seize Control of the FDA” initiative had all the classic ACT UP hallmarks. The activists had done their homework, analyzing all the drugs the FDA was testing. (ACT UP is surely the first social movement in history to include with its demonstration handout before occupying a government building an analysis of the drug Trimetrexate, suggesting its potency and concluding that, nonetheless, “the FDA, out of alleged fear for Trimetrexrate’s side effects, limited its use.”)

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Anti-FDA demonstration, 1988 (Photograph by Rex Wockner)

They made a media plan that would have supported a political convention. The media strategy was guided by Ann Northrop; Michelangelo Signorile, who had previously been PR’ing Broadway plays and movie stars; the consummate movement media coordinator, Urvashi Vaid, detailed over from the Task Force; and a cookbook publicist who understood the value of run-up. By the time the demonstrators arrived at the FDA building in Rockville, Maryland, media kits had gone out to every talk show in the country. “The largest demonstration since the storming of the Pentagon,” they proclaimed. Groups from each city were assigned a placard with their name on it, because Vaid knew that the media from local markets all had bureaus in DC, and they loved to interview members of their own communities.

On October 11, 1988, a thousand ACT UP demonstrators came streaming across the lawn outside the suburban headquarters of the FDA.

Wrapped in red tape, bearing fake tombstones, sporting black T-shirts with the signature triangles, for eight hours they surrounded the building. They chanted, stickered the walls of the building, lay down like corpses, and got arrested and carted off by the police. The protesters were still lying in front of the FDA at six o’clock at night, because someone knew that drive-time radio shows like nothing more than live events at drive time.

The video “Seize Control of the FDA” captures the demonstrators chanting, “Forty-two thousand dead of AIDS. Where was the FDA? Seize control, seize control. Release the drugs now. Release the drugs now.” And, most poignantly, “We die/they do nothing. We die/they do nothing.”

Remembering the scene, former theater flack Michelangelo Signorile smiles with satisfaction: “This wasn’t like having a bad Broadway show that you have to publicize.”

Two weeks later, the FDA announced it was speeding up the process for developing and approving AIDS drugs. Four new drugs were approved in a matter of months. AIDS chief Anthony Fauci says there are two eras in American clinical research: before Larry Kramer and after.

“Stop the Church”: The Demonstration That Went Too Far

The perfect movement moment could not last forever. The first sign appeared one freezing Sunday morning in December 1989, when legendary hothead Michael Petrelis stood on a pew in New York’s landmark St. Patrick’s Cathedral on Fifth Avenue and started screaming, “O’Connor, you’re killing us! You’re killing us, just stop it! Stop it!”

The St. Patrick’s action had all been so carefully planned. The Archdiocese of New York was visibly using its substantial resources to stop both Catholic and public institutions from teaching the use of condoms for AIDS prevention. Since the Catholic hospitals and social-service agencies provided the vast majority of AIDS patient care, paid for with public monies, the church’s resistance to safe-sex education had consequences. John Cardinal O’Connor, who presided over St. Patrick’s, was a leader even among churchmen in his resistance to the lifesaving message of safe sex. Catholic hospitals in other dioceses, like Chicago, for example, were not forbidden to talk about condom use. Taking on the church had great appeal to interest groups within ACT UP, especially the women, who had long-standing grievances with the church on abortion.

Still, Stop the Church was identified early on as a reach into offensiveness even for ACT UP. “We didn’t care if we were liked,” Ann Northrop says, “but we had to be effective.” It took six months of debate, crying, anger, argument, and back and forth before ACT UP took the vote to act against the church. The planners had the hard job of shining a light on the role of the church’s sexual politics in exacerbating the AIDS epidemic while minimizing the insult to the act of faith.

They thought they could control the impact of their actions by controlling the action. They would act during the archbishop’s homily, the least prayerful part of the service. One demonstrator was assigned to stand and read something very specific, another to lie in the center aisle quietly, and others to handcuff themselves to the pews, certainly confrontational in the sense of being visible, but very controlled.

When the homily began, the demonstrators went to lie down in the aisle and the designated speakers to read their piece. Then Petrelis started screaming, and the congregation started yelling. Eventually the police took Petrelis out and calmed down the congregation and the police came in with stretchers and slowly and systematically took the demonstrators out. When the service resumed, ACT UP member Tom Keane went to take communion. He took the communion wafer in his hand, crumbled it, and dropped it. The crumbs landed on the front pages in every newspaper in the world.

Northrop loved it. “An entirely appropriate reaction to a life-threatening situation,” she says. The media crucified them. Demonstrations against the United States government at the FDA and the establishment of international capitalism on Wall Street were nothing to the media compared to the crumbs of that communion wafer.

To this day, supporters of Stop the Church revel in the attention it brought the protest movement. But the price was high. ACT UP, like all direct-action movements, was constantly navigating the line between being disruptive enough to be effective and too disruptive to be effective. In Stop the Church, they had voted on a very precise set of actions that enough people agreed fell on the right side of the line, but the vote was closer than usual. Afterward, people within ACT UP were, as Petrelis says, “mad” at him for “having been so loud.” And he responded, “Well, that’s what I wanted to do.” With this response, the fragile cooperative structure of ACT UP swayed. People drifted toward the normal human behavior of putting themselves first.

Killing ACT UP . . . with Kindness

One lovely day the following May, in 1990, Dr. Anthony Fauci looked out the window of his office at the usually peaceful campus of the National Institutes of Health and saw the signs: FAUCI, YOU’RE KILLING US. Hundreds of demonstrators, many in leather jackets, earrings, and Mohawk haircuts, were all over his peaceful domain, shouting, waving signs, planting tombstones, and lying down.

Fauci admired the hell out of his accusers.

As the Montgomery County police and the FBI were about to arrest them all, Fauci went downstairs and told the police to get the five people who are the leaders and send them into his office. They would sit down and talk. Born and raised in New York, Fauci, who had spent a lot of time in the Village, had the advantage of not coming to the situation with the kind of aversion to gay people that he saw in many of his fellow scientists and bureaucrats. Jim Hill, his chief deputy and the godfather of one of his daughters, was gay. (Hill was also HIV-positive. Watching him weaken and die, Fauci says, did tend to concentrate the mind on the task at hand.)

The invitation seemed at first like good news. By 1990, Fauci, head of the NIH National Institute of Allergy and Infectious Disease and effectively the AIDS czar since his appointment in 1984, knew ACT UP. He had started doing business with the activists more than a year before, after running into Larry Kramer walking his dog at the Montreal AIDS Conference.

Although a lot of his research scientists thought civilians, much less civilians with twenty earrings, had no place in the hallowed halls of science, most of the things the civilians said made complete sense to Fauci. He understood that they were challenging the general paradigm of how to test drugs. Under that paradigm, he explains, even if you have a disease where everybody dies and there’s no treatment, researchers will allow only a certain number of people into the trial and the drug will not be available for anybody else until it’s proved to be effective. They were saying, Fauci understood, We don’t have time. We’re going to die. We can’t wait for this. So we want a more expanded, flexible clinical-trial process. We want people who geographically can’t get to the place where there’s the trial to be able to get the drugs. And we want to be able to test multiple drugs at the same time in an individual, so they don’t have to choose between, say, going blind or dying from HIV. The conventional practices make sense from a pristine scientific standpoint, Fauci acknowledges, but if you were somebody who was dying from a disease, they made no sense whatsoever. “So I was listening to what they were saying, and I was saying, if I were in their shoes, I’d be doing the same thing.”

“They were very good at it,” he notes. “There was a core group of young gay well-connected, well-educated, really smart people who were quick studies in what you need to do to push the system. They beautifully combined extraordinarily dramatic, provocative, and theatrical ways to get attention and once they got your attention they were able to talk to you like they were experts in the field.” Little by little, Fauci cajoled or forced the researchers to change the way they conducted their business. He put the ACT UP treatment experts right on the committees of the AIDS Clinical Trials Group, the network of sites doing the actual testing, where they educated the scientists about how to test the drugs in the kinds of real conditions the people with AIDS were living with.

When Fauci offered to meet with five representatives of the screaming masses, he must have seemed like a god. He was. For ACT UP as an institution, he was Nemesis, the god who curses men by granting them their wishes.

ACT UP was always a provisional alliance: dying white guys needing treatment; uninfected gays and lesbians who had learned from the AIDS crisis how marginal they all were; and nongay activists who always wanted to change the world. But as the brilliantly self-educated, mostly white, male treatment experts were invited inside the establishment, they grew apart from the activists who wanted to change society at its root or in its attitude toward homosexuals or even the disaffected Catholics who wanted to yell at the cardinal.

ACT UP Breaks Up

Once the opportunity to participate in the scientific enterprise arose, ACT UP, which seemed the very incarnation of a new way of acting collectively, fell into the conventional movement trap. They had political capital. Once there was capital, people began to compete for it. Soon, every decision presented a conflict. If some in ACT UP pressed for more attention to the people with AIDS who did not fit the gay white male model—women, with different presenting symptoms, or intravenous drug users—others believed ACT UP should use its political capital with the NIH to press for pure research. The newly empowered treatment activists did not think they had the money and energy to do the social-movement labor the traditional lefties desired. An anonymous writer suggested to the ACT UP newsletter that his opponents wanted to use ACT UP to “save the whales.”

Nothing revealed the forces pulling ACT UP apart like the split between the men and the women. Although women, of course, were vulnerable to AIDS, few of the women in ACT UP were infected. Thus, ACT UP women presented a pure target for the people with AIDS, who suspected that the uninfected, male or female, would put other political interests before their survival.

From the women’s perspective, powerful white men like Fauci were selecting people who resembled them to make decisions that affected women’s lives. Women in ACT UP had long been suspicious that their voices were not being heeded, noting that when they were speaking at the Monday night meetings, the buzz of side conversations got perceptibly louder.

Women were important to ACT UP. By 1987, women had been in the trenches in the feminist health-care movement and in abortion rights for more than two decades. Women like Marion Banzhaf, who had run the DC Feminist Women’s Health Center for years, brought to the new organization invaluable knowledge and history about how to democratize health care and insert the patients’ voices. They also got a lot. The psychologically entitled white men were a powerful machine. When the women’s caucus wanted to protest the CDC definition of AIDS that excluded women, ACT UP generated a horde of screaming T-shirted protesters at CDC offices all over the country.

When ACT UP finally got Fauci to schedule a conference on women and AIDS in 1990, the sessions were, to put it mildly, contentious. As luck would have it, Fauci and some of his pals in ACT UP were going to a party together after the conference. As one of the women reported in the organization newsletter Outweek, they “collided with members of the Treatment and Data Committee of ACT UP/NY, who were, unbeknownst to us, heading to a social event with these same dreaded government bureaucrats.” A few weeks later the women proposed that all meetings between ACT UP representatives and the scientific agencies, either on women’s issues or, more threateningly, altogether, be suspended for six months.

Suspend all contact with the scientists? In March 1992, exactly five years after Larry Kramer’s speech at the gay and lesbian center, the leading lights of the Treatment and Data Committee sent ACT UP an open letter announcing that they were starting a new organization, Treatment Action Group. Membership would be by invitation only.

We Will Be Citizens

People were still dying in droves when ACT UP broke apart. It would be two long years before the government started testing the multiple-drug treatment that finally slowed the epidemic down. ACT UP did not develop protease inhibitors or drug cocktails, which proved so effective at controlling the progression of the disease, although the activists played a big role in getting the cooperation of the multiple drug companies. But they had done the most crucial social-movement work: they made the victims matter.

A sure sign that ACT UP and the other activists had achieved a political breakthrough for AIDS patients and, by implication, all gay people, was the release of the Hollywood movie Philadelphia in 1993. Tom Hanks played the brilliant and unjustly treated AIDS-infected corporate lawyer Andrew Beckett. Although Beckett has a cool loft apartment, he otherwise looks a lot like the heterosexual majority. The audience never sees him in bed with his partner, barely even imagines them kissing, and nowhere sees the rich and resourceful universe of gay communal resources available to people with AIDS by 1993. Still, Hanks won the Academy Award for his performance in the thin and uninteresting role. It was the twelfth-highest-grossing film in 1993.

Had the gay AIDS revolution stopped at Philadelphia, it never would have accomplished all that it did. Gay people are not sexless heterosexuals with better apartments. But it had to start there. When gay AIDS patients were faceless, the government of the United States silently watched them die. Even Justice Powell said he ruled to keep their sex lives criminal because he didn’t know any gay people. In 1993, a major institution of culture—the popular movie—showed them as human individuals, people the heterosexual majority might know or even have in their families.

Cleve Jones had figured this out. In 1987, he started the NAMES Project, a gigantic patchwork quilt made of patches commemorating each person who had died of AIDS. By making them individually human, he thought, he could not only comfort the grieving but also change the way the society saw the consequences of its indifference. The quilt put the “we” into “We die/you do nothing.” The quilt self-consciously imitates the strategy of Maya Lin’s famed Vietnam War Memorial, with its list of every American soldier who died during the war, an ascending mountain of grief and loss, each line of engraving a distinct human being.

As part of that project, in 1987, the NAMES Project took the quilt, then two thousand squares, to the National Mall in Washington, DC, and spread it out before the lawmakers they thought could make the United States government do something different. On a mostly sunny day, people came to read from the squares that commemorated their losses.

One of them was for Roscoe Browne. In 1985, Robby’s mother, Dixie, called Robby, worried that she had not heard from Roscoe for a long time. Four months later, Roscoe Browne, the godlike brother who had taught Robby to drive and to water ski and whose visits home from camp and school were the high points of Robby’s youth, was dead. Dixie Browne paid the funeral home extra to bury her son’s infected body. When the quilt came to Washington, Robby thought Barbara Bush could go out and read his brother’s square. After all, wasn’t Roscoe a Yalie like her husband and her sons? After the quilt had come and gone, Peggy Swift, Barbara Bush’s social secretary, sent him a note regretting that Mrs. Bush had been unable to acknowledge Robby’s brother.

Just as Philadelphia presented a palatable story to the consumers of American culture, in 1993 Tony Kushner’s Angels in America: A Gay Fantasia on National Themes, opened on Broadway to make a full-throated claim for gay citizenship. From the first scene, a eulogy for the gay protagonist Louis Ironson’s immigrant grandmother, Kushner made clear that Angels was going to be a play about America—its immigrants, its aspirations, and its gays.

Roy Cohn, in reality the lifelong closeted right-hand man to Senator Joseph McCarthy, appears as a version of himself in Angels in America. Kushner’s Cohn describes the distance gays have yet to come: I’m not a homosexual, he tells his doctor after he’s diagnosed with AIDS, no matter who I have sex with. “A homosexual,” Roy Cohn says, “is somebody who, in 15 years of trying cannot get a pissant anti-discrimination bill through the city council. A homosexual is somebody who knows nobody and who nobody knows.” The closeted Cohn does not need ACT UP; he blackmails the White House to get him AZT, threatening to blow the whistle on the Iran-Contra scandal (the play is set roughly in 1987). No randomized clinical trials for people like Roy Cohn.

But the character Cohn finds out that he may only be taking a placebo from his cross-dressing nurse Belize, not from his well-connected friends in Washington. The government would even deny Cohn potentially life-saving medicine, Belize informs him, in a line right out of the ACT UP playbook, in the interest of getting results that will satisfy “the New England Journal of Medicine.”

By the time Cohn gets AZT, it’s too late. As soon as Cohn dies, Belize takes the rest of Cohn’s ill-gotten stash and gives it to Louis for Louis’s former lover, Prior Walter, who is also infected. Cohn dies, but, as the play ends several years later, Walter, possibly because of the purloined AZT, survives. Thus, the out gay community triumphs where the closeted, evil-doing McCarthyite conservative fails. As the curtain falls, Walter, who has some gift of prophecy, looks out at the audience and says, “This disease will be the end of many of us, but not nearly all, and the dead will be commemorated and will struggle on with the living, and we are not going away. We won’t die secret deaths anymore. The world only spins forward. We will be citizens. The time has come.”

The Time Has Come

“We die/they do nothing” could describe most of human history. A few hundred—at its height ACT UP/NY had a thousand people attending weekly meetings—members of a despised and marginalized minority, just emerged from crazy and disloyal, still sinful and recently reconfirmed as criminal by the Supreme Court, defied that ancient order. The ones who were HIV-positive resembled the victims of the Holocaust in that they had, literally, the freedom of those with nothing left to lose. Positive or negative, they were numerous, they were loud and disruptive, male and female, they were macho. Screaming, dressed in similar uniforms, disrupting public ceremonies, massing, forcing their way into the heart of the shadowy bureaucracy with tombstones as symbols, they could not be ignored. With their advertising-driven laden graphics, they were cool.

And they were hot. ACT UP, which at one point seriously debated whether members should carry firearms, pushed the very limits of peaceful civil disobedience. They didn’t kill anyone or destroy any buildings, but they stopped business at St. Patrick’s Cathedral once, at the Stock Exchange at least twice, and at the heart of the government science establishment repeatedly. If Stonewall had not been enough to convince the majority society that the gay population would stand up for itself, ACT UP—and its offshoots like the Lesbian Avengers, with a ticking bomb as their symbol—reiterated the message.

After the emergency receded, years later, the image of the booted, leather-jacketed man yelling that the government has blood on its hands and the lesbian women with their bomb letterhead changed the way people thought about gays and lesbians and so changed the gay revolution for good. In their actions, they continued the work that began at Stonewall of pushing gays and lesbians into the social contract. They would be citizens.

By late 1995, when the Food and Drug Administration announced it was approving the last of the drugs in the drug cocktail, the United States National Institutes of Health was spending well over a billion dollars a year on AIDS research. Although gay men were by no means the only Americans suffering from the disease, nor the only people acting politically to mobilize the government to act, they were certainly at the heart of the action. No other social movement has leveraged public resources so effectively. They essentially redefined the content of the liberal state to include spending large amounts of resources to protect a vulnerable minority from a fatal disease. But, as Larry Kramer said, sadly, when asked about his starring role, at what a terrible price.

Two weeks after starting the new medicines, Cleve Jones got out of his deathbed and went down to the little store on the corner. He thought he’d get himself an English muffin.