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As the AIDS crisis took hold in the 1980s, killing thousands of Americans and ravaging gay communities, the deadly epidemic went unaddressed by U.S. public health agencies—and unacknowledged by President Ronald Reagan—for years. In response, a political group called ACT UP emerged, deciding it needed to do something shocking to draw attention to the crisis and jolt government agencies, drug companies and the mainstream media into action.

So it began organizing protest events where masses of people lay down in a public space, feigning death.

“The strongest thing we can do is something in silence,” declared writer, filmmaker and AIDS activist Robert Hilferty at a November 1989 meeting of ACT UP (AIDS Coalition to Unleash Power). “A die-in. A massive die-in.” 

Founded in 1987, ACT UP ultimately organized thousands of protests, with die-ins becoming a signature tactic. And while AIDS activists weren’t the first to simulate death to call attention to lethal threats, the action became a powerful tool to show that, because the epidemic was being stigmatized and ignored, bodies were piling up. In ACT UP’s case, “they forced social and cultural institutions to take responsibility for the AIDS deaths by having to physically move the protesters’ bodies,” says Matt Brim, professor of queer studies at City University of New York.

READ MORE: How AIDS Remained an Unspoken—but Deadly—Epidemic for Years

The History of Die-Ins

The AIDS die-ins emerged from a longer history of activism that made bodies the focal point of protest, such as suffragettes chaining themselves to railings and civil rights activists staging sit-ins.

One of earliest known references to the term “die-in” came nearly two decades prior to ACT UP, when environmentalists demonstrated on Earth Day, 1970, in Boston, to raise awareness about the deadly impact of air pollution. About a month later, protesters in Seattle fell to the ground at a busy downtown intersection to oppose dangerous nerve gas shipments.

Since then, public die-in stunts have been used to decry everything from war and weapons testing to police violence and cycling deaths. To ratchet up the visual drama, some protesters have employed fake blood and bandages. Others brought coffins.

READ MORE: How the AIDS Quilt Allowed Millions to Memorialize the Epidemic

ACT UP: Fighting for Gay People’s Lives

When playwright and LGBTQ activist Larry Kramer took center stage at the New York Lesbian and Gay Community Services Center on March 10, 1987, and delivered the rousing speech that helped launch ACT UP, the epidemic had entered its sixth year. The U.S. government had yet to approve the prescription sale of a single drug to treat AIDS, and the deaths were largely being ignored by the media. “Unless we fight for our lives, we shall die,” Kramer wrote that month for the New York Native, a bi-weekly magazine aimed at the city’s gay community. As a result, ACT UP worked urgently to train as many individuals as possible in civil disobedience tactics. As an unidentified activist in the documentary United in Anger: A History of ACT UP put it, “you don’t always know when it’s going to happen or when you’ll want to do it.”

Die-ins became important for ACT UP, Michael Bronski, author of A Queer History of the United States for Young People and professor of practice in media and activism at Harvard University, told HISTORY.com in an interview. That’s because “there’s a cultural hesitation to think about death—and the protest made it physical.”

And AIDS activists knew their best chance to affect policies was by affecting public opinion—making the media, rather than politicians or chief executives, die-ins’ primary targets. In United in Anger, an activist remembered how ACT UP clearly viewed civil disobediences, like die-ins, as a “safe tactic for making a stronger statement and as a way of getting media attention.”

READ MORE: History of Gay Rights

From Play-Acting Death to Conducting Public Funerals

In its first decade, ACT UP held thousands of demonstrations across the country and around the world. But not all die-ins focused on the same issue.

On October 11, 1988, ACT UP held its first national demonstration on the doorstep of the Food and Drug Administration, which activists perceived as slow to approve and release new drugs. In front of helmeted police officers guarding the building’s entrances, some activists staged a die-in, holding tombstone-cutouts that read, “DEAD FROM LACK OF DRUGS” and “VICTIM OF F.D.A. RED TAPE.” Less than a year later, the F.D.A approved one other drug and expanded access to another.

Outside the Centers for Disease Control in Georgia, die-ins targeted the narrow definition of AIDS that encompassed diseases observed in gay men, but not those specific to women and IV drug users. “C.D.C. is killing women, redefine AIDS,” activists chanted amid demonstrators sprawled on the sidewalk. In 1993, the C.D.C delivered AIDS activists a victory to their years-long campaign by adding CD4+ T-lymphocyte (T-cell) count to the definition, a count the C.D.C. viewed as having “clinical importance” in categorizing HIV-related conditions. The agency also added invasive cervical cancer to its list of AIDS-indicator diseases, an acknowledgement of the impact HIV was having on women.

Die-ins also occurred on Wall Street, targeting drug prices; at the vacation home of President George Bush, targeting national AIDS funding; at the National Institutes of Health; New York’s Grand Central Station; and in Chicago and San Francisco, among other places and locations.

But in the fall of 1992, the theatrically of die-ins gave way to real artifacts of death.

On October 11, in a demonstration known as Ashes Action, activists gathered in Washington, D.C., some carrying the ashes and bone chips of loved ones who had died of AIDS to disperse over the White House lawn. Others carried corpses that rested in open-faced coffins.

Literally bringing real death to activism was the next logical thing to do, says Bronski. “It came out of frustration that things were not getting better quickly—or at all.”

READ MORE: The Pink Triangle: From Nazi Label to Symbol of Gay Pride

Die-Ins: Part of a Larger Strategy

ACT UP used civil disobedience, like die-ins, not only to vent frustration, but to strategically draw attention to its own proposals and presentations. In the United in Anger documentary, one of the group’s activists succinctly summed up the strategy: “When we get arrested, we usually are aiming to get a meeting set up or deliver a set of demands.”

“Any political movement has to be multifaceted, so that doing aggressive, in-your-face actions have to happen in tandem with people making arguments with politicians,” says Bronski.

Their aggressive actions at the F.D.A. and the C.D.C., for example, helped activists gain meetings that ultimately moved the needle on their pursuit of an AIDS cure. 

“Before AIDS and before ACT UP, all experimental medical decisions were made by physicians,” Dr. Anthony Fauci of the National Institutes of Health told New Yorker magazine in 2002. “Larry [Kramer, founder of ACT UP], by assuring consumer input to the F.D.A., put us on the defensive at the N.I.H. He put Congress on the defensive over appropriations. ACT UP put medical treatment in the hands of the patients. And that is the way it ought to be.”

READ MORE: How Activists Plotted the First Gay Pride Parades

(This article originally appeared on Next Avenue.)

As the modern LGBTQ rights movement gained momentum in the late 1950s, activists realized they faced a major roadblock.

Being gay wasn’t just considered a bad “choice” or something immoral, it was an actual medical condition listed in the American Psychiatric Association’s (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM).

If you were mentally ill, the reasoning went, how could you successfully lobby for equal rights or any rights at all?

The new documentary “CURED” details how pioneering LGBTQ-rights activists decided to take a stand against the medical establishment and eventually won. The APA finally removed homosexuality from the DSM in December, 1973.

“This is a little known story about a group of tenacious activists who refused to accept this oppressive label,” says Bennett Singer, who co-directed, produced and wrote “CURED” with Patrick Sammon. “They not only challenged it but won their battle and transformed the social fabric of American society.”

The film, which has been screened at festivals and other events, is slated to debut this October on PBS’ “Independent Lens.” “CURED” has won audience awards at both the New York and San Francisco LGBTQ+ film festivals, has several virtual screenings available and has been optioned by 20 Century Television for a scripted series from the co-creator of “Pose.”

Without this “instant cure,” as one newspaper put it, LGBTQ-rights milestones like marriage equality, the repeal of Don’t Ask, Don’t Tell and the inclusion of transgender people in the military might not have been possible or might have taken even longer to accomplish.

“The ripple consequences and legacy of the change to the DSM can’t be underestimated,” Singer says. “It was illuminating and inspiring to see how consequential this fight became and how far the ripples extended.”

‘Instant cure’ took years

Combining archival footage and materials with on-camera interviews with key figures, the film vividly captures a battle fought over 81 words and waged at professional meetings, on TV and via live protests.

“We tried to create a sense of suspense and tried to underscore that victory was by no means inevitable,” Singer says.

Led by the late Frank Kameny, Barbara Gittings and other pioneering activists, this effort straddled different eras — and approaches — of the LGBTQ-rights movement, incorporating in-your-face tactics with working for change from within.

Starting in 1970, activists began to disrupt APA meetings, culminating in a dramatic moment at the 1972 meeting in Dallas. There, a man wearing a Nixon mask and known at the time only as Dr. H. Anonymous stood up and declared: “I am homosexual. I am a psychiatrist.”

To have a member of their own profession declare he was gay, even while in disguise, represented a completely new experience for many and helped foster more constructive dialogue between activists and APA members.

“One fascinating piece of the evolution is to think about the shift from confrontation and invasion of APA meetings and gatherings of mental health professionals to dialogue,” Singer says. “For many of these mental health professionals, it seemed like the first time they had sat down with healthy gay people who didn’t want to be viewed as sick.”

“It was the beginning of a transformation of how gay people presented themselves and how psychiatrists and psychologists perceived these people,” Singer added.

Given the advanced ages of the surviving participants, the filmmakers felt an “urgency” to capture their remembrances on film.

Leaders like Kameny and Gittings had already died. But they were able to speak with people like Kay Tobin Lahusen, who photographed the LGBTQ rights movement extensively and was Gittings’ life partner; Harry Adamson, a friend of Dr. H. Anonymous, aka Dr. John Fryer, who helped preserve his papers; and Ronald Gold, a former journalist who gave a key speech to the APA called “Stop it, you’re making me sick!”

Lahusen died on May 26, 2021 at 91; Adamson passed away in April 2021 and Gold in 2017, shortly after sharing his story for “CURED”.

“His [Gold’s] death was a really poignant reminder that the main storytellers in this film are in their 80’s and 90’s, and our goal was to have their first-person testimony driving the narrative,” Singer says.

Using science to debunk myths

Key to the strategy to win over skeptical clinicians was to include gay psychiatrists like Fryer, who practiced in Philadelphia, as well as straight allies from within the profession.

There’s no film footage of Fryer’s landmark speech, but the “CURED” team unearthed the audio tape from among the 217 boxes of his materials at the Historical Society of Pennsylvania.

“I spent some time dutifully listening to those tapes because it wasn’t clear from the inventory what was there,” Singer recalls. “It was miraculous to find that one tape of his historic 1972 speech from the APA meeting in Dallas.”

Although both sides of this issue claimed that facts supported them, LGBTQ activists and their allies successfully debunked the junk science behind conversion therapy, electroshock therapy and other failed treatments of the time.

“It was an astounding twist of fate that Frank Kameny had gotten his Ph.D. in astronomy from Harvard and was a scientist at the core,” Singer says. “He was the absolutely perfect person to pick at the rigor and arguments being made by the proponents of the mental illness label. The debate over science and what constitutes good science — where is the data? — all of the questions that Kameny raised so cogently are at the heart of the story.”

The battle still isn’t over

Despite the steady progress of the LGBTQ-rights movement in recent decades, this battle to be seen as whole people entitled to the same civil rights as everyone else isn’t over. Witness the drive in many states to block transgender rights or deny access to medical treatments for transgender youth.

“There are very clear and chilling parallels between the way gay men and lesbians were treated and perceived in the ’60s and ’70s and the way trans people are being attacked now and being considered ‘disordered,'” Singer says.

The film also shows the benefits of lifting the stigma of being misdiagnosed as sick.

“It speaks to the importance of having dignity and self-worth and the value of being treated as healthy individuals by an institution like the APA,” Singer says. “Barbara Gittings put it brilliantly when she said that an albatross has been lifted from our neck.”

As the city and the LGBTQ community commemorate four decades since the first reported cases of what became known as HIV/AIDS, Maitri Compassionate Care in San Francisco’s Duboce Triangle neighborhood is set to become the home of a new mural bringing into focus the meaning of that anniversary.

The mural, titled “Never Alone,” will be painted by Serge Gay Jr., who told the Bay Area Reporter he wanted to tell a story through the art, which will be on the side of the building at 401 Duboce Avenue that houses the hospice that opened in 1986. While Maitri still cares for people living with AIDS, it also serves those who are homeless with short-term stabilization services, as the B.A.R. previously reported. (https://www.ebar.com/news/news//285966)

“Definitely I wanted to tell the story of what Maitri represents, their history, the people there, and the diversity of the community in the Duboce Triangle,” Gay, a 36-year-old gay man, told the B.A.R. “Overall, it talks about Maitri and the HIV/AIDS pandemic, and the people left behind. I want that story really strongly stamped within the wall.”

Gay said that the mural, which has been designed in draft and will be tweaked considering community feedback, includes “a lot of symbols of people who have died from AIDS and HIV and what has happened, and is still happening.”

For example, people in red symbolize those lost to AIDS. A lotus flower symbolizes life and rebirth. Animals symbolize both caregivers and companions, and are a reminder of nearby Duboce Park, which is a favorite spot for dogs and their owners.

People interested in providing their input were invited to a recent virtual meeting, according to Joaquin Castillo Arana, a member of Maitri’s board of directors, who also said that Maitri has been keeping the Duboce Triangle Neighborhood Association involved in the process.

DTNA did not respond to a request for comment.

Work on the mural is scheduled to begin in “late June or early July” and be “completed by the end of the summer at the latest,” the Reverend Rusty Smith, a gay man and Anglican priest who is the executive director of Maitri, told the B.A.R.

Third AIDS-related mural
It will be the third mural in the Castro district that addresses the AIDS epidemic. On 16th Street at Market is the mural “The Hope For A World Cure.” Elba Rivera and Clif Cox created it in 1998 in collaboration with a number of other artists under the purview of Precita Eyes Muralists. It was damaged in 2017 by a graffiti artist.

The “Laughing Gorilla” mural, on the side of the building at 19th Street at Castro, was inspired both by the AIDS epidemic and the 1989 Loma Prieta earthquake. Created by David Seibold, a gay man, during the height of the AIDS crisis, it was restored in 2019.

It was June 5, 1981, of course, that the U.S. Centers for Disease Control and Prevention’s Morbidity and Mortality Weekly Report noted five cases of pneumocystis pneumonia among previously healthy gay men in Los Angeles. Later, it was understood the men had developed the condition due to HIV infection (though the viral agent was not discovered until 1983).

“That’s what this is about,” Smith said. “The reason we wanted our building to have a mural is the stigma of HIV/AIDS continues today. Maitri was an instrumental place where care, love, and outreach to people with AIDS was one of a kind. … Through ‘Never Alone,’ we look at the bravery that Maitri was part of for people totally alone and abandoned by the community.”

Smith told the B.A.R. that the project was brought to Maitri by the Castro/Upper Market Community Benefit District.

“When this mural came to us, Serge had been chosen by a prior process,” Smith said, adding that Gay is a “rock star.” “We started our process back in September [2020] with different listening groups.”

Gay — also known for a mural on the side of the newly reopened Castro bar Moby Dick at 18th and Noe streets — said that he was selected in 2019 for a CBD-funded mural “that was going to be at the site of Fitness SF” but that “the project failed.”

“The design was completely different because that was for the Castro but this is for the Duboce Triangle community, so I wanted to make sure the design [worked with] the neighborhood,” Gay said. “This is a brand new, different design.”

Gay said that the mural at Fitness SF Castro (which is located at Market and Noe streets) “didn’t work out” due to “complications with the building owner.”

Fitness SF did not respond to a request for comment.

Andrea Aiello, a lesbian who is the executive director of the CBD, stated to the B.A.R. that Gay was chosen through an open, competitive process.

“The mural on Maitri is funded through a grant from the CBD from the SF Arts Commission,” Aiello stated in an email, adding subsequently that the money comes from $25,000 awarded in Fiscal Year 2019-2020.

Arana stated to the B.A.R., “Though the location has changed, the underpinning rationale for why [Gay] was picked not only still holds true, but they are underscored by the location and context. … His ability to present a cohesive and comprehensive submission that indicated not only his artistic ability but his understanding of resourcing (time, supplies, space, etc.) required to execute a mural of this size.”

Smith said that it is his fervent hope that the mural leads to greater awareness of the HIV/AIDS epidemic and Maitri’s work as the city and country emerge from the COVID-19 pandemic this summer.

“HIV/AIDS is still here, in these marginalized communities where people don’t have access to health care,” Smith said. “Maitri is still that place of love, care and acceptance. As a young person in the 1980s, that’s what we said to people we cared for: that we’ll never forget you, and will continue to fight until there’s a cure, and so this 40 year anniversary is hopeful and heartbreaking at the same moment.”

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