What Activists Who Fought the AIDS Crisis Can Teach Us About Organizing During a Pandemic

More than 30 years after ACT UP was founded, their bold activism in response to the AIDS crisis offers critical lessons for those mobilizing around COVID-19.

By Loretta Graceffo

During the peak of the coronavirus pandemic in New York, Avram Finklestein was inundated by the blaring noise of ambulance sirens outside his apartment. “Just day and night … it was constant,” he said. “Even though I’ve been social distancing, I have not been able to escape this pandemic, not for one second.”

For Finklestein, a 68-year-old artist and activist who lives in Brooklyn, witnessing the U.S. government stand by as the death toll climbs to over 200,000 is especially painful. As a survivor of the AIDS crisis, the current pandemic has been what he calls “a revisitation of suffering that can only be triggered by America at its most cruel.”

At the height of the AIDS epidemic, Finklestein was galvanized into action by the death of his partner, Don. In 1987, Finklestein helped found the AIDS Coalition to Unleash Power, or ACT UP, a grassroots direct action group advocating for AIDS research, treatment and policy change. “We were fighting for our lives first,” he said. “It was a moment that was enraging, terrifying, solidifying.”

The “Read My Lips” poster by Gran Fury ACT-UP! (Flickr/Banana Leaf)

Finklestein was also a founding member of Gran Fury, a guerilla art collective that sought to bring attention to the crisis through provocative graphic design, most notably the iconic Silence = Death poster, which urged passersby to “Turn anger, fear, grief into action.” 

“The poster had to do with who is allowed to die — whose lives were valued and whose lives were considered expendable,” he said. “Which isn’t that different from the questions of social justice in America now.”

Lawyer Terry McGovern, who has spent much of her life providing legal advocacy for low-income HIV positive individuals, describes the U.S. government’s catastrophic response to COVID-19 as “completely predictable.”

“So many times throughout this whole experience, I thought about those early days of AIDS,” she said. “There is something about the absolute scrounging around to get thermometers and masks for healthcare workers, and iPads so people can say goodbye to their loved ones,” McGovern said. “You just have to wonder, ‘How could we have not learned anything?’”

Seven months since the nation entered lockdown, tales of resistance, mutual aid and solidarity are more crucial to survival than ever — and the work of ACT UP has much to teach organizers about the months that lay ahead.

“It’s an ongoing struggle to get these stories told,” McGovern said. “But I think that they’re very important because, ultimately, they’re hopeful stories.”

Utilizing ‘every tool in the toolbox’

When ACT UP first formed in 1987, the AIDS crisis had been going on for six years. Nearly 41,000 people had died and more than 50,000 people had been diagnosed. The Reagan administration, which was recorded laughing about the epidemic behind the scenes, did not publicly acknowledge the virus until there had been four years of casualties.

“Just like with coronavirus, there were two aspects to the AIDS epidemic,” said Jim Hubbard, a filmmaker whose documentaries chronicle queer life and resistance. “There’s the disease itself, and there’s the way the society deals with it. And the government, when it wasn’t being openly hostile, was simply ignoring the situation.”

The callous indifference of the U.S. government took on many forms: politicians of the era banned HIV-positive individuals from entering the country, refused to update the sex education programs being taught in schools, failed to establish needle-exchange programs and did nothing to curb drug profiteering

Zidovudine, commonly known as AZT, had just become the first anti-HIV drug to be approved by the Food and Drug Administration — and at $10,000 a year, it was the most expensive drug in history.

Hubbard’s introduction to ACT UP was when he spotted a poster on the subway advertising the March 24 demonstration on Wall Street. “At first, I didn’t understand why they were demonstrating there,” Hubbard recalled. “I thought, ‘Well, it’s the government that’s the problem.’ But that was my misunderstanding. Because the AIDS crisis was a crisis of capitalism.”

This analysis was critical to the work of ACT UP, which took on many forms — from working with scientists around the world to mass protest in the streets.

Members of ACT UP  interrupted news broadcasts, covered a homophobic senator’s house with a giant condom, chained themselves to a balcony at the New York Stock Exchange and staged a die-in during mass at Saint Patrick’s Cathedral to protest the church hierarchy who condemned contraception. 

“When it comes to resisting late capitalism, I have always felt that you really need to try every tool in the toolbox,” Finklestein said. “I mean, we were driven by rage over the fact that people were literally dying in the corridors of hospitals. There wasn’t anything we considered off the table.”

At one point, the Women’s Caucus of ACT UP registered as Republicans so they could attend a Republican fundraiser. For the dessert table, they supplied fortune cookies that contained clinical data about immunosuppression in women. In another instance, activists broke into New York’s Centers of Disease Control, where they inserted fact sheets about AIDS into every single file folder and book in the director’s office, so that he couldn’t open anything without seeing their demands. 

In October 1992, over 300 people marched from the Capitol Building to the White House, chanting “Bring the dead to your door, we won’t take it anymore.” There, activists staged a political funeral for those who had been “murdered by AIDS and killed by government neglect,” scattering the ashes of their loved ones on the White House lawn. 

“We did everything possible,” Finklestein said. “The nature of [fighting against] late capitalism is constant engagement. Not engagement once. Not engagement over one incident. It’s constant.”

Though members of ACT UP were trained in nonviolent civil disobedience, many approached nonviolence as a tactic rather than as an absolute philosophy. As the death count grew and desperation mounted, a small but significant segment of ACT UP began to consider employing body bombs to draw attention to the cause by taking their own lives. “It’s not surprising that some more radical questions arose,” Finklestein said. “Many of us felt that we were dying and were going to die anyway.” 

Ultimately, the direct action campaigns employed by ACT UP succeeded in drastically changing the U.S. government’s response to the epidemic. Their victories included ensuring that HIV-positive individuals were included in clinical trials, changing the procedures of the FDA to speed up the release of experimental drugs, developing a condom distribution plan that was approved by the NYC Board of Education and significantly lowering the price of life-saving drugs.

The fight for accessibility 

According to Hubbard, one of the most devastating similarities between AIDS and COVID-19 has been the disproportionate effect on low-income people of color. 

Partnering with Occupy Wall Street, ACT UP marked its 25th anniversary on April 25, 2012 with a march and direct action demanding a tax on Wall Street transactions to fund global AIDS treatment, prevention and care. (Flickr/Michael Fleshman)

“Sometimes, at the ACT UP meetings, people would get up and talk about things, and other people would scream out, ‘What does that have to do with AIDS?’” Hubbard remembered. “But if you’re a homeless person with HIV, it’s not only about the treatment, it’s about a home. It’s about a place to sleep. It’s about food. Not everybody is in the same situation. And things that don’t seem to be connected may be intimately connected for other people.”

In 1989, McGovern founded the HIV Law Project to provide legal services to HIV positive individuals from underserved communities, particularly low-income women of color who had nowhere else to turn.

 “There was so much rampant discrimination,” she said. “I remember the receptionist spraying Lysol when my clients would come in. A lot of lawyers didn’t even want to take on cases of people with HIV.” 

Early on, McGovern represented a closeted man who was gravely ill. His lover had died of the virus — and because his partner’s name had been on the lease of the apartment and public housing’s definition of family did not include gay couples, the man was facing eviction.

“When we went to the housing authority to advocate for family status, they were very homophobic and basically kicked us out,” McGovern said. Shortly after, her client died by suicide. The tragedy prompted activists to organize a demonstration outside his housing project, which secured a number of changes prohibiting HIV discrimination in public housing. 

A turning point in AIDS activism took place in 1990, when McGovern filed a class action lawsuit against the Department of Health and Human Services to expand the Social Security Administration’s definition of AIDS. 

At the time, the definition included symptoms predominantly found in gay men, whose diagnosis automatically qualified them for disability and an array of housing benefits. Meanwhile, women and IV drug users with the virus were being denied Social Security and Medicaid and didn’t qualify for disability, even as they were dying. Many lived in public housing and faced eviction. Some were facing court battles with the city to prevent their children from being taken away. 

“The biggest lesson that I learned from ACT UP is that a small group of people — extremely focused on analysis and practical solutions to the problem — can change the world”

The plaintiffs in the lawsuit, some of whom chose to remain anonymous, were made up mostly of queer women of color, including Iris De La Cruz and Phyliss Sharpe, whose 5-year-old daughter also had the virus. “They were all extremely powerful women, and very brave,” McGovern said. “For many of them, this fight was going on in the last year of their lives.” 

Among her clients was Katrina Haslip, a Black Muslim woman, former sex worker and jailhouse lawyer who was beloved by her fellow inmates. During her time at Bedford Hills Correctional Facility in New York, there was an outbreak of HIV behind bars — and after months of falling asleep listening to others die in their cells, Haslip became an AIDS educator and advocate. 

Two weeks after being let out on parole, Haslip violated her probation by heading to Washington, D.C. to protest at the Department of Health and Human Services. There, she publicly shared her story. 

“She was very, very ill in the last part of her life,” McGovern said. “It was very upsetting and engaging. She died without ever qualifying for disability.” 

Haslip died in December of 1992, just one month before the CDC announced an expanded definition of the virus to include symptoms commonly found in women,enabling thousands of women to get the services they desperately needed. None of the eight women involved in the lawsuit survived to see the treatment breakthrough of 1995.

For McGovern, the current race to develop a COVID-19 vaccine raises similar questions of accessibility. “Say we do get a vaccine that works — who gets it? How do we make sure there’s equity in distribution?” McGovern asked. She fears that due to the history of medical experimentation on people of color, many underserved communities may regard the vaccine with suspicion. “We’re going to need public health leaders who people really trust, who have an intersectional analysis of things.” 

Reasons to hope

Finklestein has spent the past few months serving on the organizing committee of Free the Vaccine for COVID-19, a coalition of artists, students and medical workers fighting to ensure equitable distribution of a COVID vaccine. As the global community grapples with an uncertain future, he believes it is imperative to study social movements of the past in all of their complexity.

“The historiography of ACT UP goes something like this: A community acting in solidarity on its own behalf protested, and it led to the release of drugs that eventually made AIDS a chronic manageable position,” he said. “The actual story is much more vast and disturbing and complex than that. But it suits capitalism to tell that first story, because it indicates that the system works.”

What’s often left out of the story is that the release of AIDS drugs being accelerated went hand-in-glove with the right-wing movement for deregulation during the Reagan era. “Life-saving medications were expedited as a result of ACT UP,” said Finklestein. “But if you think about it in context, people were asking for expedited release of drugs, and pharmaceutical companies love that.” 

Still, Finklestein believes there are reasons to be hopeful — among them, the uprisings around the world in the wake of George Floyd’s murder. “It may be a reflection of my own privilege to say that I find this moment of resistance in America inspiring when so many people are suffering and dying, but it is inspiring,” he said. “Watching this political moment is like a master class in organizing.” 

Among the veterans of ACT UP is an awareness of the long road that lies ahead. Between battling evictions and securing workplace protections to ensuring equity in vaccine distribution and access to healthcare, the next few years will hold a lot of work to be done. 

“The biggest lesson that I learned from ACT UP is that a small group of people — extremely focused on analysis and practical solutions to the problem — can change the world,” Hubbard said. “We don’t need millions of people to change the momentum of the coronavirus pandemic. A small, intense group of people can do it. And I think that happens over and over again.”

Loretta Graceffo is a writer, artist and activist from New Jersey. She currently attends Saint Peter’s University. Tags: Civil disobedience, Coronavirus, Corporations, COVID-19, Protests, United States

This article was published on October 6 at Waging Nonviolence.

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