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United In Anger: ACT UP & The Struggle For Queer Rights Today

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“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.”

This credo was recited every Monday night, in a usually-packed room on 13th Street in Manhattan. From 1987 to 1993, over 800 people – most of them queer or with queer family and friends – routinely attended ACT UP meetings in New York, and by 1990, more than 100 ACT UP chapters existed across the globe. 

Before it split in 1992, ACT UP revolutionized the survivability of HIV/AIDS by taking an all-out, combative approach against government inaction. This was a life or death struggle for leading ACT UP activists, as many of them had contracted the virus themselves or loved someone who had. The movement designed, and forced the FDA to adopt, a fast-track system for sick individuals to access experimental drugs. They won changes to the CDC’s definition of AIDS to include women, allowing them to access experimental drug trials and benefits. They ended insurance exclusion for people with AIDS, and won legalized safe needle exchange in New York City.

Likely the strongest case for ACT UP’s success was its inarguable impact on the epidemic itself: cases of AIDS in the US were sharply rising through the 1980s, peaked in the early 1990s, and have continued to fall ever since.

All this was won in a relatively short period of time, by a movement that was (in the scope of mass movements) quite small – its largest demonstration was a protest of 7,000, a far cry from the heights of the women’s movement of the 1970s or the Civil Rights movement of the 1960s. ACT UP overcame their size, and a homophobic Reagan administration that delayed action on HIV/AIDS until thousands had already died, with militant tactics and a strategy they called “inside/outside.” 

As much as we can learn from ACT UP’s success, it is just as crucial to learn from its failures. By 1992, the conflict of strategy that had been growing within ACT UP for years resulted in a division that arrested the momentum of the movement.

Queer activists today have much to learn from the history of ACT UP. In just a few years, the legal status – and daily lives – of transgender people in many US states has radically changed. As of May, 21 states now ban trans athletes competing in sports consistent with their gender identity. Seventeen states ban gender-affirming care for trans youth. Seven states ban K-12 trans students from using bathrooms consistent with their gender identity. Nine states censor school discussions of queer identity. Where ACT UP activists were fighting for a chance to live against a deadly disease, today trans and queer people are faced with our own fight – for our legal right to exist.

How The ACT UP Movement Was Built

From the get-go, ACT UP was faced with the problem of how to force the government to act on something it wanted absolutely nothing to do with. Initially nicknamed “gay cancer” by the media, and formally called GRID (gay-related immune deficiency) by the CDC, AIDS was as poorly understood as it was deadly. The first US cases were identified in 1981 – by year’s end, 337 cases had been reported, and already, 130 of them died.

The Reagan White House treated HIV/AIDS as a punch line, rebuffing questions on the topic with jokes. But more damaging than words was Reagan’s relentless pursuit of austerity. Alongside cutting social services and busting up the unions, Reagan cut funding to the CDC and the National Institutes of Health, and even pulled the US out of funding the World Health Organization. When the Reagan administration finally did publicly acknowledge the AIDS epidemic, it pressured the Public Health Service to adopt an HIV travel ban, making it impossible for immigrants with HIV to enter the country. By the time Reagan left office in 1989, almost 83,000 cases of AIDS were confirmed, and nearly 50,000 died. In the 1990s, Bill Clinton did not fundamentally change the approach – he continued and even codified the HIV travel ban, which was not ultimately overturned until 2010, and promoted the “Don’t Ask, Don’t Tell” policy for the military. 

During the time when the government’s policy on AIDS was silence, panic grew among the gay community. This was certainly the case at the federal level, as well as in New York City where Mayor Ed Koch and the rest of the political elite slashed spending on healthcare. It wasn’t clear how HIV/AIDS spread, and no effective treatment existed. Getting diagnosed with AIDS didn’t just mean likely death – it also most often meant being abandoned by your family and community for being gay. Aid organizations cropped up to house, feed, and support people with AIDS, but without effective treatment, this was essentially hospice care. The FDA wouldn’t approve a single drug to fight AIDS until 1987.

It was this pressure cooker scenario that led to the explosion of ACT UP. In 1987, Larry Kramer warned a crowd gathered  at the Lesbian & Gay Community Services Center in New York City: “In five years, half of you will be dead!” He later asked, “Do we want to start a new organization devoted to political action?” To which the answer was a resounding “yes” – 300 people met two days later to form ACT UP. 

Just a few weeks later, ACT UP held its first action, now known as First Wall Street. The activists laid down in the road, trying to cause maximum disruption to rush-hour traffic. Their demands included the immediate release of new experimental drugs (like Ribavirin, Ampligen, and Glucan) to be available to AIDS patients, the ending of double-blind studies in which some fatally sick people got placebo pills, treatment affordability, and a massive public education campaign to stop the spread of AIDS. 250 people attended and 17 were arrested. 

In 1988, the group held likely its most famous action, Seize Control of the FDA. This demonstration of 1,500, bringing together ACT UP chapters that had cropped up across the country, ended up on the front cover of most major newspapers, despite the fact that it was held at the FDA headquarters in suburban Maryland. This was a core part of ACT UP’s strategy – that to be effective, actions had to be specific and targeted to where they perceived the problem to be. 

“One group appeared in white lab coats with bloody handprints on their chests, another did a die-in, holding cardboard gravestones over their heads,” said David Barr, an ACT UP organizer, in Sarah Schulman’s Let The Record Show. “It looked much, much larger on television than it actually was because it was so theatrical… This was really the start of the national AIDS movement.”

The action, and the implicit threat that a bigger movement would grow, worked – less than a year later, the FDA approved a new AIDS drug, and expanded clinical trials for one more. 

Fighting To Win

ACT UP’s core driving force was desperation, the reality that if they didn’t get organized, many of them were facing death. They didn’t have any kind of centralized structure, or any elected leadership focusing on finding ways to be effective. To make an impact, their demonstrations could not just be protests that could be ignored, but had to have weight and impact on the people making the decisions. 

They adopted in much of their work a “dual” approach. Some of their members, particularly those who had backgrounds in science and data, pored over medical research, identifying drugs that they wanted the FDA to approve, studying how clinical trials were held to see if they could be amended to treat more people faster. Those members, many of them in the Treatment & Data subgroup, would try to get “inside” the government – gain an audience with the FDA or the NIH and make their specific cases.

But what gave the “inside” tactic any possibility of being effective was its counterpart – confronting government and media officials in public, and making their case to the public rather than just behind closed doors. Meetings that normally pass without comment were the site of protests publicizing demands like increased drug access or expanded clinical trials. ACT UP became particularly famous for their “zaps,” short, punchy actions that assailed vulnerable targets with media attention and raucous noise. 

But in the final analysis, “inside” and “outside” were never equal counterparts. Before the Seize Control Of The FDA action in 1988, the FDA took a dismissive approach to the activists of ACT UP. People within the FDA wouldn’t return their calls. After the action, as David Barr recounts, “they returned the call the next day.” (Let The Record Show, p. 133)

Today, nobody remembers ACT UP for the lobbying they did. Their strength was in their well researched and specific, targeted demands which brought attention to the movement. It was the direct action, the big theatrical demonstrations, and the education to the public through the media, that made ACT UP successful and memorable. 

Importantly, ACT UP understood that being combative was key. In the literal fight for their lives, there couldn’t be any middle ground – even if government officials, politicians, and media figures had sympathy for them in private, that was useless without real action on ACT UP’s demands. 

Learning From Mistakes

The real tragedy of ACT UP was that, as truly effective as it was at winning victories that won survival for thousands of people with AIDS, it had a relatively short life. One important cause for that decline was that many of its foremost members died – for the very people who pioneered access to AIDS treatment, it was in many cases too little and too late to save themselves. 

But ACT UP’s split in 1992 was effectively the end of the half-decade movement. What led to the split, and what lessons can be drawn from it for activists today? 

In part, ACT UP’s horizontalist approach was a factor. Actions and efforts were not centrally coordinated, allowing many people to take up different approaches and for many things to be going on at once: treatment research, big actions, media outreach, and much more. But the lack of elected leadership and of democratic structures (besides one massive floor vote to support things or not) came with a very massive drawback: that de-facto leaders of ACT UP emerged anyway, and in many ways steered the direction of the group – and increasingly, over time, in divergent directions. 

But the split was ultimately a crisis of strategy. Tensions grew over time between the Action Committee and the Treatment and Data Committee, until finally in 1992 the Treatment and Data Committee left ACT UP and reformed as the Treatment Action Group (TAG). Basically, the “outside” and “inside” split from each other. 

But inside and outside could be better named as “direct action” and “lobbying.” ACT UP continued to hold actions after the split in a similar style to how they used to, and TAG became an advocacy lobbyist group, wanting to work more directly with the government and pharmaceutical companies. 

Lobbying remains the dominant strategy of queer organizations today. Organizations like the Human Rights Campaign make appeals to Democratic Party politicians and try to move the needle from the inside. Today, we need to learn this important lesson from the ACT UP period: that government officials and politicians only play ball under duress – under the threat that disruption from a movement will make conducting “business-as-usual” impossible.

Still, the strategy of direct action was incomplete, too. As effective as ACT UP was in winning a future for people with AIDS, what it ultimately never won was affordability. Today, effective treatment for AIDS exists – but only if patients can afford it, because healthcare in the US is still dominated by the capitalist class and the profiteering of pharmaceutical corporations. As ACT UP activist and historian Sarah Schulman wrote, “While advocates were able, in a sense, to beat HIV, they could not beat capitalism.”

Had ACT UP taken on bigger fights, like the fight for universal healthcare, it could have built broader support in the working class connecting with the shared struggle against for-profit healthcare. It was important to show that people dying of AIDS and people going bankrupt from cancer treatments was a product of the same systemic problem. 

Such an approach would have also been effective at fighting the homophobia and transphobia that alienated people with AIDS from society. Movements like the Lesbians and Gays Support the Miners, a queer solidarity effort for a year-long miners’ strike in the UK just two years before ACT UP was founded which radically changed the social attitudes of working-class people in the UK, show just how powerful this approach is.

Applying These Lessons Today

In the over two decades since ACT UP, lobbying has played an ever-increasing role in queer activism. Of course this has meant focusing on the Democratic Party. In a confirmation of the lessons of ACT UP, lobbying ultimately couldn’t get the job done on same-sex marriage, either – mass demonstrations and direct action were needed to win it.

In the fight to defend the rights of trans people from an onslaught of right-wing legislation, the lessons of ACT UP are critical – that to win, we first have to get organized, and we have to take a direct, combative approach with the right wing. We have to make it impossible for them to conduct business-as-usual. 

Queer students have taken an admirable fighting lead by organizing school walkouts, and this foundation can be built upon with mass mobilizations, occupations of state legislatures, and sharp demands for our equality backed up with demonstrating our majority support in society. Following the legacy and lessons of ACT UP, we can build a queer rights movement in the modern day capable of winning not just trans rights, but much, much more. 

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