Change and Power
Part I includes an introduction that summarizes ACT UP’s primary tactics and sources so that contemporary activists can have a stand-alone handbook of general principles and takeaway ideas. This is followed by a look at two influential Puerto Rican activists in ACT UP who worked in the context of four Latino-oriented committees, exploring how they negotiated and experienced power structures inside and outside the organization. Finally, an examination of the first wave of treatment activists analyzes how they started to unpack governmental and pharmaceutical obstructions to people with AIDS, and the ingenious methods they developed for direct action to combat them.
Introduction: How Change Is Made
This is the story of a despised group of people, with no rights, facing a terminal disease for which there were no treatments. Abandoned by their families, government, and society, they joined together and forced our country to change against its will, permanently impacting future movements of people with AIDS throughout the world and saving incalculable numbers of future lives. Some men and women with AIDS fought until the day they died. The dead and the living ultimately transformed the crisis.
This is an apocalyptic story of the first generation of AIDS activists, who experienced the virus in a way that no subsequent generation would ever have to experience it again. For some, their days, months, and years in ACT UP were the most important times of their lives. For others, it was a chapter in a series of contributions. Some people went on to find a place in the world; some lost their place forever. But because of commitment and brilliance, only these survivors carry the burden of the first years of the mass death experience that was AIDS. They made the world better, to some degree, for every subsequent HIV/AIDS generation, that is, the future.
This is a story that should have been impossible, which is why it is crucial for us now to understand how and why it happened. These were the people least likely to make substantive change, participating in the broadest possible coalition, most of whom, in some or all aspects of their lives, were excluded from basic rights. As Dudley Saunders points out, in a way, “the win obscured the process,” one that we need to learn from right now. And our distorting cinematic concepts of what constitutes heroism have also made it impossible to look at the flaws clearly, as well as at their consequences. Understanding mistakes does not undo successes. Learning to hold both, at the same time, is necessary in order for new generations of people under attack to feel capable of moving forward.
On July 25, 1989, 150 members of ACT UP demonstrated in front of the New York Times publisher Punch Sulzberger’s residence at 1010 Fifth Avenue and then marched to the West Forty-Third Street offices of the paper. After threatening a sit-in in Times Square, the protesters were finally allowed to picket on the sidewalk opposite the Times. Several demonstrators held a die-in in front of the building. The demo was preceded by a Sunday zap in which outlines of dead bodies were stenciled on the streets around Sulzberger’s houses, and his neighborhood decorated with stickers emblazoned with ALL THE NEWS THAT KILLS. “AIDS Crisis Escalates While N.Y. Times Sleeps” was the headline on the leaflet ACT UP distributed, which asked: “Why, instead of actively investigating the work of federal health organizations, does the Times merely rewrite [their] press releases?… Such compliance makes the Times a mere public relations agent for an ineffective government … Why did the Times, in its June 29 editorial (Why Make AIDS Worse Than It Is?) dismiss a new federal study finding a 33% under-reportage of AIDS infections in the US? This callous editorial assured its general readership that AIDS will be over soon, once infected members of undesirable risk groups die off.”
From left to right: Steven Helmke, Rob Kurilla, Jody Rhone, Conyers Thompson, Glenis Redmond, Rand Snyder, Donna Minkowitz, Lee Arsenault, Dan Keith Williams, Wayne Kawadler, Julie Clark, Marc Rubin, Tom Blewitt, David Falcone, Blaine Mosley. (Photograph by T.L. Litt)
FACING THE PAIN
Although the story of AIDS activism is one of heroism, it actually starts in suffering. AIDS without medication is a grotesque display of loss. Every faculty disintegrates: the brain, the lungs, the nerves in one’s legs, the ability to control shit, the tongue covered in thrush, the broken skin. Even the normally unconsidered capacity to swallow and then to retain nutrition disappears. The body is no longer a mystery of synchronicity; it is a trap of literal pain and confusion, but also of social isolation. The diarrhea machine; the literal scarlet letter of cancerous Kaposi sarcoma eating away one’s face, torso, legs, and arms; the rambling dementia; the shooting flames of neuropathy making walking impossible or a horrific ordeal—even the fungal toenails—don’t usually allow someone to make new friends.
With the lack of treatment and services also came the abandonment by family—if they hadn’t already thrown you out or driven you away for being queer. Life was surrounded by death. There was the systematic loss of the friends who were your support network and the witnesses to your life, the deaths of whom became the end of context and memory. There was the loss of jobs, the end of careers, the disappearance of income, the losing of your apartment, the stares on the street, the shunning by neighbors, acquaintances turning their backs or fading away, the silence of the government. Inevitably came a horrible death, possibly while you were lying on a gurney in a hallway of an overwhelmed hospital or on a sofa in a friend’s cramped apartment, emaciated and swimming in endless diarrhea.
But, surprisingly, while many people joined ACT UP NY to end their own suffering, others came to confront someone else’s pain. ACT UP was simultaneously a place of decline and a place of defiance of loss. Every Monday night those few hundred people entered the ground-floor meeting room at the crumbling old school that had become the Gay Center, then the Lesbian and Gay Center, and now the renovated, corporate Lesbian, Gay, Bisexual & Transgender (LGBT) Community Center on West Thirteenth Street, next to the disappeared St. Vincent’s Hospital to the east, and across from the still-present Integral Yoga Institute to the north. They came to save lives with humor, commitment, profound innovation, genius, will, and focus, and sometimes wild acting out, ruthlessness, and chance. But that meant that they also came to die and to watch disintegration. Because, to make something better, we have to face it at its worst. And only a small group of people on this earth are willing to look pain in its real face, assess it accurately, listen, and then criticize themselves with rigor, find a productive way to cooperate, and rise to the occasion to solve a problem. People who are desperate are much more effective than people who have time to waste.
Most of the men and women in New York City with AIDS never came to ACT UP, even at the height of its impact from 1987 to 1992. Most of the people who loved someone with AIDS and wanted their lives to be saved, most of the people who felt empathy or identification with people with AIDS, never came to an ACT UP meeting or action. Most people, after all, do not act to create change, no matter what. Then there were specific obstacles: there were many thousands of people who died in the closet rather than come to ACT UP. There were literally thousands, if not millions, of people who wanted AIDS to end who never could imagine themselves in a state of overt, physical, and public opposition to the police, the mayor, the president, The New York Times, science, government, art museums, and pharmaceutical companies. The thought of being handcuffed and arrested on television—publicly associated with AIDS, drugs, and anal sex—disrupted their image of their futures, which were never going to happen, but, in fantasy, depended on being appropriate. Being oppositional instead meant “no business as usual,” which for many was itself a loss of order and ambition. In order to change institutions, we have to confront institutions. And institutions, as well as the individuals who gain their power by being associated with them, become angry and punitive when they are questioned. In order to get out of hell, you have to be in hell, so pretending it’s all fine and will all be fine won’t get you out. Going to ACT UP meant attending every Monday night for the general meeting, and for some most every other night of the week, and mornings before work for demonstrations or zaps (creative but confrontational protests that inherently challenged frames of power). This decision toward action required constantly committing every literal day to face the disgusting, overwhelming, unbearable suffering of the fragile, devastated, deteriorating, enraged, sad, ingenious, committed, and very young people with whom we chose to be.
The AIDS Coalition To Unleash Power was founded in New York City in 1987; it split in 1992 when twelve people left to form Treatment Action Group (TAG). The year 1996 saw the popular availability of protease inhibitors, the compound medications, taken daily, that make it possible for people with HIV who have access to health care to live. In that short time:
ACT UP designed a fast-track system in which sick people could access unapproved experimental drugs, and then, through direct action, forced the U.S. Food and Drug Administration to adapt it.ACT UP ran a four-year campaign to change the U.S. Centers for Disease Control’s definition of AIDS so that women could get access to benefits and be included in experimental drug trials.ACT UP made needle exchange legal in New York City, and started Housing Works, a service for homeless people with HIV/AIDS.ACT UP also helped force pharmaceutical companies and the government to change priorities in medical research to stop the same failed drugs from being studied over and over again.ACT UP’s “Countdown 18 Months” campaign influenced a refocus of research onto opportunistic infections, thereby reconceptualizing the image of effective treatment. Reality made us evolve from the fantasy of one pill that would “cure AIDS” to diversified, individualized treatment combinations that would address the impact of HIV on each body.ACT UP ended insurance exclusion for people with AIDS and confronted the Catholic Church’s attack on public school condom distribution, abortion, and needle exchange.Images of ACT UP fighting back on the nightly news and through posters, community-distributed video, and still photography created a new face for the world of people with AIDS and their allies as a vibrant and powerful grassroots force. This new queer/PWA stood publicly with power and grace, and this defiant determination had long-range influence on how people with HIV and queer people saw themselves and were in turn understood by others.While very few people joined ACT UP, larger numbers were involved in helping people with AIDS. Most volunteers preferred to participate in social services, from being a “buddy” through Gay Men’s Health Crisis, walking dogs of people with AIDS through PAWS, serving meals through God’s Love We Deliver, and working with many other crucial, life-enhancing organizations. Yet only a very small number were actively involved in what ACT UP called “direct action to end the AIDS crisis.” At its height, ACT UP had about five to eight hundred people at a meeting. Our largest demonstration, Stop the Church, had only seven thousand people. A few committed activists, when focused on being effective, can accomplish a lot.
WHO MAKES CHANGE?
What kind of person decided to be in ACT UP, and why were they so effective? After all, AIDS activism was, perhaps, the most recent successful social movement in America. It was “successful” in that, over fifteen short years, the broad coalition of people working on AIDS was able to transform the disease, and—in part—the society that surrounded it. The AIDS coalition of activists, scientists, medical personnel, journalists, and social service workers was able to force industry and government to take the necessary actions to go from a state of disaster, with no treatments for people with no rights, to the creation of medications that render a seropositive person with health insurance so virally suppressed that they are biologically incapable of infecting anyone and can live a normal life-span. They created complex social services, tried to change public representation, and impacted how bureaucracies function so that a more truthful story could be told that supported and helped a wider range of people.
However, while advocates were able, in a sense, to beat HIV, they could not beat capitalism. And so, today, because of the greed of international pharmaceutical companies and various health industries, large numbers of people with HIV in the United States and around the world cannot receive medications that already exist. For this reason, around three-quarters of a million people throughout the world still die every year of a disease that is entirely manageable. In the United States, infected people without insurance, living in states with no targeted funding, do not have access to the current standard of care because we don’t have a coherent health insurance system. Direct care workers have told me that in New York City today, many AIDS deaths are diagnosed in the emergency room, often because the person had no health care. According to The New York Times, reporting on the fiftieth anniversary of Stonewall, “of the 1,790 people who died of AIDS in New York City in 2016, 1,471 were black or Latinx, and more than half were living in extreme poverty. Across the country, according to the U.S. Centers for Disease Control (CDC), African-Americans accounted for 43 percent of H.I.V. diagnoses in 2017, though they represent just 13 percent of the population.”
So now, in 2020, as we in the United States are in the middle of a national cataclysm of corruption, illness, and racism, it makes sense to look back at the structure and strategies of ACT UP that were successful and unsuccessful, and why they worked and didn’t work. Some of these ideas are applicable and helpful to those of us today who are committed to transforming our contemporary crisis of scapegoating, deprivation, brutality, greed, and neglect. This is the time to learn from our activist past, a history that has not so far been told in Oscar-winning movies and Pulitzer Prize–winning plays and books, from HBO to the nightly news.
What kind of person takes on this responsibility? What kind of person actually rises to the occasion of a mass calamity? I think the answer is very surprising. ACT UP’s motto, recited at the start of each Monday-night general meeting, was “The AIDS Coalition To Unleash Power is a diverse, non-partisan group of individuals, united in anger and committed to direct action to end the AIDS crisis.” And as this book will show, this is an accurate description. The people interviewed in the ACT UP Oral History Project are from very different backgrounds and experiences, with different temperaments and abilities. In trying to understand what they all had in common that brought them together, I started out expecting some kind of shared foundational preparation. In the beginning of the interview process, Jim and I thought that perhaps they might have all grown up with some value of community. For the first few years I asked a lot of questions about early family sense of belonging. Did they go to church? Were their parents community-oriented? Part of the PTA? But this line of questioning led nowhere. Many reported no early orientation toward collective responsibility, while others came from generations of activists. There was no thread.
Once Jim and I discarded that idea, we thought that perhaps they had all had fundamentally transformative relationships to AIDS or the gay community, but over the years even this did not pan out. Of course, many ACT UPers had AIDS or were HIV-positive, feared becoming infected, or had lost lovers, close friends, or even, as in the case of Alexis Danzig, her father. There were others who had an impulse connection. Sharon Tramutola was sitting with her friend in Newark watching television when an ACT UP demonstration came on. The next day she took the New Jersey Transit into the city, went to Greenwich Village, entered the Gay Center, and joined ACT UP. Karen Timour, working as a bookkeeper, saw images of ACT UP and thought that it might be a great place to make some friends. At a meeting someone asked for a volunteer to work on insurance. She thought, Sure, I can try that. And Karen ended up masterminding an enormous campaign conducted by snail mail in fifty states that led to winning basic insurance eligibility for people with AIDS. Over six hundred thousand HIV-positive Americans became eligible for insurance because of her work. Some of ACT UP’s most effective members had little or no relationship to AIDS when they first joined the organization. What did these people have in common with Peter Staley, a bond trader who came to ACT UP when he himself became infected? Or with Jim Eigo, an HIV-negative gay man who had been a playwright and theater critic?
At this point I focused on people whose demographic was unusual in the ACT UP collective, hoping that the exceptions would reveal the commonality. Karen Ramspacher was one of a handful of straight people who were entirely integrated into the heart of ACT UP’s work. But when I asked her and other straight people why they had joined when most heterosexuals in America were shunning and blaming people with AIDS, they didn’t seem to understand the question. In almost every case I had to make overt my goal: that I was trying to comprehend why they joined ACT UP when most straight people refused to help. Repeatedly, respondents would tell me that they didn’t understand why the others weren’t there! It seemed so obvious a step for each of them that they found other straight people’s indifference to be perplexing.
I entirely gave up this thread of pursuit after I interviewed Patricia Navarro, the mother of Ray Navarro, a much-loved Chicano gay artist who died a brutal AIDS death that included blindness and dementia. Patricia had come from her Latino community in Los Angeles to be with Ray in New York, and subsequently became a well-known member of ACT UP. But when I asked her why she was the only parent of a person with AIDS who joined ACT UP, she was confused. She insisted that she wasn’t alone. She did belong to a mother’s group that overlapped slightly with ACT UP, but none of those women were activists in the ACT UP mode but her. Patricia Navarro had just never noticed that she was an exception because it seemed to her, as it did to Karen Ramspacher, that joining ACT UP was the only logical choice. But of course, if the families and straight friends of people with AIDS had followed the exceptional Karen and Patricia, the world would have been an entirely different place.
It was almost eight years into the process that I suddenly realized what the common denominator was. We were interviewing Rebecca Cole, by then a well-known TV personality associated with upscale urban gardening. But when Rebecca first came from the Midwest to New York in the 1980s to be an actress, she had a job working in a bar while going out on auditions. A coworker there told her that the newly formed AIDS Hotline needed volunteers to get off the ground; she signed up, even though she knew nothing about AIDS. But actually very few people at the hotline knew much more, because there were no treatments, there wasn’t that much to know, and the calls reflected this lack. SPREE, whom we interviewed at the Radical Faeries homeland of Short Mountain, Tennessee, told us about her time at the AIDS Hotline, and the content of the average call.
“Here’s a typical one. Someone from the city, the big city, visits the country. They give it to a cow … Can you get [AIDS] from eating a hamburger from this cow?… This woman was doing her laundry. She dropped some of her laundry onto the floor. She then rationalized that, what if someone threw a used condom onto the sidewalk. Someone steps in it. Then goes into the laundromat and walks where she had dropped her laundry. Is she in any danger of getting it?”
But one day Rebecca received a phone call from a woman in Connecticut who had AIDS and had been refused entry into a local experimental drug trial because they were not accepting women. Rebecca was outraged. On her own, she phoned the Centers for Disease Control, made an appointment, went there with another young woman, met with them, and in this way initiated the movement in solidarity with women with AIDS.
Hearing this remarkable story, I suddenly realized that what all these ACT UPers had in common was not experiential. That there was no common concrete factor in their lived lives. Rather, it was characterological. These were people who were unable to sit out a historic cataclysm. They were driven, by nature, by practice, or by some combination thereof, to defend people in trouble through standing with them. What ACT UPers had in common was that, regardless of demographic, they were a very specific type of person, necessary to historical paradigm shifts. In case of emergency, they were not bystanders.
Copyright © 2021 by Sarah Schulman