Today, in honor of World AIDS Day on December 1st, we want to recognize and honor a group that was fundamentally responsible for changing the tide on the AIDS crisis. ACT UP, an acronym that stood for AIDS Coalition To Unleash Power, was founded in 1987. At this time, over 40,000 Americans had died of the AIDS crisis and the President had only just acknowledged there was even a pandemic happening. Funding was still obsolete and most doctors couldn’t convince people that this was not a “gay disease”. And they certainly couldn’t convince people to care about all the gays who were dying of this mysterious virus. The world needed to wake up and start taking action on a crisis that had been raging for nearly a decade. As organizer Phil Reed stated:
“Our community has come up against a disease and it will do one of two things. It will either kill us, or it will politicize us”.
On March 10, 1987, outspoken activist Larry Kramer stood in a New York auditorium full of fellow queer people and asked for two-thirds of the audience to stand up. He then said plainly “In 5 years, all of you standing will be dead”. Kramer had been speaking out about the crisis since news reports first broke in 1980. Yet for most of the previous 7 years, he had been shrugged off as an alarmist or deliberately silenced by more powerful leaders in the community. Kramer had attempted to start a relief and response group through the Gay Mens Health Crisis but eventually was pushed out of the Board because he was too loud and aggressive. Yet Larry Kramer was never a person who cared to be silent or tamed. On this morning, he once again demanded to know what the community was going to do about a pandemic that had destroyed them. Kramer called out the GMHC and reproached them for their lack of real response. He stated firmly:
“If my speech tonight doesn't scare the shit out of you, we're in real trouble. If what you're hearing doesn't rouse you to anger, fury, rage, and action, gay men will have no future here on earth. How long does it take before you get angry and fight back?”
The crowd erupted in a resounding agreement with Larry. These were individuals who all knew someone who had died. Most of them knew many people who had died, plenty were anticipating the death of friends and family, some, who attended. knew their own days were numbered. Two days after Kramer's speech, 300 people met to discuss what must be done. Their first protest happened just two weeks later on Wall Street in response to the HIV drug, AZT, being sold at an unaffordable cost. It would be another 2 years before the pharmaceutical company, Burroughs Welcome, lowered their annual costs by about $3,500 a year. This comparatively small reduction came after more than 120 people were arrested just for protesting this issue alone.
As momentum grew other chapters began to start across the country. For many people, this was the only way they could connect with others who understood their pain. ACT UP was a source of healing that allowed folks to channel their grief and rage. It also began to shake down a country that had largely ignored the deaths of AIDS victims. In January of 1988 the first women-led protest took place in a call to cancel, or shut down, Cosmopolitan magazine. This was unique as most AIDS protests had been largely male lead up to this point. Even before ACT UP was founded, folks almost unanimously saw AIDS as a gay, male problem. When Cosmopolitan published an article claiming females could not contract HIV/AIDS, despite overwhelming contradictory evidence, the women of ACT UP staged a protest. Nearly 150 gathered outside the magazine headquarters shouting “Say NO to Cosmo!”.
By the following year, the grassroots organization had doubled in size. In May of 88,600 people demonstrated outside of the state capitol in Albany, New York. Here, Vito Russo gave a heartbreaking speech on what it felt like to live with AIDS and watch those around you dying off while the rest of the world pretends its not happening. Russo would pass away just 2 years later, but his speech is still considered one of the most important of the AIDS crisis. And it is no wonder, as the middle-aged author poignantly described a community being ravaged while everyone else looked away. The few resources available were heavily overpriced and government red tape kept any cheaper or experimental drugs tied up for years. Many reports stated that anywhere between 50-80 viable, experimental drugs were being tested during this time, and the process required nearly a decade of tests before the drugs could be released to the public. Meanwhile, Europe testing in Europe and other countries was significantly faster.
In fact, most early protests focused on demanding that the FDA and pharmaceutical companies stop withholding potentially life-saving medications. On October 11, 1988, what would later be named National Coming Out Day, 1,500 protesters surrounded FDA headquarters in Rockville, Maryland. They held banners with the upside down, pink triangle, and chanted “Silence Equals Death”, and “Release the drugs!” and “FDA, how many people have you killed today?”. Over 100 people were arrested as police rounded up the protesters and forced them onto buses. Other activists broke free and laid in front of the buses, doing their best to prevent them from leaving the premises. The highly televised and publicized event drew national attention to the queer community. This was perhaps the first time the entire nation really saw the effect the crisis was having on the LGBTQ+ community.
One reason ACT UP is still seen as one of the most effective grassroots groups to ever exist is because of their no holds barred activism. Members would charge into offices and through the streets wearing gloves covered in blood. They chained themselves to balconies and stairwells and office chairs. They flipped over lunch tables and poured fake blood onto computers. And in the end, many members of ACT UP had little to lose. They either dying of an incurable disease or someone they loved was dying of an incurable disease. The threats and pressures to conform and behave in society did not apply and the punishments of fines and imprisonments meant little to them. And it was this desperate message that caught the eye of the public. No matter how a person felt about the queer community, it was hard to watch them plead and fight for their very lives and not feel moved.
But while there were plenty of emotions driving the group, there was also plenty of strategic planning. Organizers took aim at events where the press or video cameras would already be located. Protests erupted in ballpark stadiums and at local town halls or behind commemorative ceremonies. Once ACT UP had made a name for itself, a quick phone call to a reporter could almost insure the press would follow them to wherever they went. Leaders also made sure to have protesters visiting from out of state hold sign placards that showed where they were from. This showed that the crisis was widespread and also worked as a local reference point for many local newspapers. Rather than burying a story from New York on its back pages, a newspaper in say, Montana, might print a front-page story about a group of Montana citizens that traveled to New York for a protest.
There were also the signs protesters carried. Of course, the upside down pink triangle bearing the words “Silence Equals Death” lent quite a powerful message. Its reference to the Holocaust and the history of resounding silence as LGBTQ+ people suffered packed a double punch. But there were so many more signs. Many of those diagnosed with HIV or AIDS carried images of tombstones that read “Killed by the FDA”, “Died at the hands of the System”, “Dead due to lack of funding”, and more. In one protest in front of a Rite Aid, protesters changed the stores’ sign to read Fite Aids. They also often wrapped themselves in red tape to signify the red tape keeping them away from potentially life-saving drugs. And of course, there was always the main sign that bore the rising tally of those who had died of AIDS. All of this provided a very intimidating and overwhelming presence when the group would show up on-site for a protest.
Part of the brilliance of ACT UP can be attributed to its structure and lack of direct hierarchy. The group has never been filed as a 501(c)3 (the typical, federal, non-profit status) or any legal entity for that matter. Ultimately members determined they wanted nothing to do with the government and this allowed them to freely operate as they pleased. And that’s exactly what they did, hosting regular weekly meetings, usually on Monday nights, and held in an open forum style that allowed any person or group to speak. The organization consisted of numerous, smaller, affinity groups that were all, individually, doing their own organizing. Rather than a president or oversight board, each local group was overseen by two or more committees. These committees could often be joined by any person who wished and members would draft proposals to be taken to the floor for a full vote.
The Issues Committee and the Actions Committee were seen in every group and were the most crucial. These groups determined what needs should be focused on and how they would go about their disruptions, which they referred to as Zaps. Many of the larger chapters also had committees on finance, outreach, image, housing, media, and more. Yet even if an individual couldn’t get their committees approval for a vote, or if the person wasn’t a part of any committees at all, they were still allowed to bring a vote to the floor. ACT UP’s ability to remain almost completely democratic was quite remarkable and also directly responsible for its success. As Anna Blume told producers in the documentary United in Anger: A History of ACT UP,
“It was brilliant because it was organic and it came out of necessity...because ACT UP always wanted the freshness of irreverence, and irreverence can’t come from consensus.”
In late 1988, ACT UP continued to lead the way on revolutionizing activism when they launched AIDS Community Television. Before social media, an individual had to have contacts in news or television in order to get their information out to the public. For the last decade, queer people had watched their narrative and the narrative of the crisis become distorted and twisted by a biased media. By launching A.C.T. (AIDS Community Television) they could take back that narrative as well as provide reliable information to the public. When a national magazine like Cosmopolitan is publishing such erroneous information - that women can contract AIDS - it becomes imperative to combat that misinformation. ACT UP’s media was able to give credible and extensive knowledge around the AIDS crisis as well as the government and law enforcement’s response to protesters. Additionally, they were also able to humanize many queer people who were typically othered by society.
Most of their footage came from an affinity media group DIVA-TV. Which stood for, Damned Interfering Video Activist Television. DIVA filmers always had their camera on them at all times, which is quite a job when one considers how large cameras were in the late 80s and early 90s. Today we have the benefit of cameras that fit into our pockets. But DIVA team members hauled the cameras around in back packs, whipping them out at a moment’s notice. This was one of the first and earliest forms of documenting police brutality on film. Between 1989 and 1997, DIVA-TV collected more than 700 hours of protest footage. When the internet began to take off in the mid-90s, DIVA started streaming their footage online using webcast series. Another media partnership was Grand Fury, in which artists anonymously created images to represent ACT UP and it's mission. When public entities rejected promotional flyers or billboards, Grand Fury would often post their work illegally on the buildings of Wall Street.
In 1989, the group ramped up it’s activism with even more bold and aggressive tactics. That March, they sat outside of New York’s City Hall in cardboard boxes, protesting against the denial of housing for AIDS victims. Many also laid in the streets telling reporters “they’re kicking us out into the streets so we’re going to block the streets”. Organizers introduced a new method to their resistance and implemented “wave systems”. This meant that there were 3 to 4 groups that would take on the tasks most likely to get them arrested. Only they now broke into waves which meant that as soon as group one was arrested and hauled away, group two stepped into their place. This greatly prolonged the length and effectiveness of the protests as law enforcement were kept busy.
Several months later, yet another protest on Wall Street finally brought about the slight reduction in the HIV/AIDS medication, AZT. Activist also took on more of their own community, challenging the diplomatic and overly cautious way many other Gay leaders were treating the crisis. The group crashed the Montreal AIDS Conference in June of that year and demanded that PWA (People With AIDS) be given a part in the conference. It sounds ridiculous to imagine that those who had the disease were being excluded from planning the world's response to the virus. Yet this was the truth in most groups and organizations responsible for addressing the crisis. Even in those collectives that were mostly run by LGBTQ+ people. As a whole, PWA’s along with transgender individuals were nearly entirely omitted from any formal organization. And few included any people of color or women in their planning and operations. This was a big reason the Women’s Caucus as well as the Latino Caucus of ACT UP were formed, in order to ensure their voices would not be silenced in this group as well. And they were not silenced by rather magnified which again attributed to the success of the movement.
However, ACT UPs most notorious and controversial demonstration took place in mid December. Just a few weeks earlier the archbishop of New York had declared that condom use was a sin no matter if it prevented the spread of HIV. The church leader also condemned homosexuality and evolving abortion laws. A small affinity group took over the emergency wing of St. Vincent's Medical Center and covered all the crucifixes in condoms. However, the sisters on site did not press charges but rather sat down and spoke with the organizers. While this was a brief moment of understanding between two groups on opposing sides, a more blatant and provocative protest was in the works. Over the next two weeks, hundreds of ACT UP members strategized and planned a response to the Cardinal and the entire Catholic clergy in New York and abroad.
On December 10th, several thousand protesters descended on St. Patrick's Cathedral in New York. The group was a mix of ACT UP and its many affinity groups along with several women’s rights groups. After all, the Church’s history of attacks and abuses against women is just as long as their abuse against the LGBTQ+. Many demonstrators were armed with pamphlets that looked like the programs St. Patrick’s would hand out to parishioners each week, yet inside was a list of their complaints and grievances against the church. Ray Navarro, a leading voice during this time, showed up dressed as Jesus Christ and did a mock news story of the event. As the time for Mass drew closer, the crowd outside continued to swell. Police officers had already been deployed to keep protesters out since ACT UP had made it clear that they planned to demonstrate.
But officers could only stop the “obvious protesters” and more than 50 individuals made it inside the church and even a few were armed with hidden cameras. As soon as the Cardinal began to speak, several dozen protesters laid down in the aisles, staging a die-in. The idea was to silently lay on the ground and make their point. But when the Archbishop urged for peace and continued on with his homily as usual, the dismissal was too much. His refusal to acknowledge the staged die-in was exactly like his refusal to acknowledge the thousands of real deaths that had occurred due to AIDS. At this time, protesters began to scream, yell, and read through the lists of offenses. Some chanted, “Stop killing us” and “We’re fighting for your lives too”. One individual took the holy Eucharist (a wafer used in Christian religious ceremonies), chewed it up, spit it out, and left the mess on the floor.
Plain clothed officers were finally given the go-ahead and descended on the protesters. Forty-three people were arrested inside the church and most had to be dragged or carried out on stretchers. Outside the church the crowd had grown to nearly 7,000 people, which was the biggest picket protest a church had ever experienced. Police arrested 68 more people and aggressively tried to keep the crowd in check. By that evening all news stories were covering the atrocities that had happened in St. Patrick's Cathedral. The reaction was overwhelmingly negative as many found the protests went “too far”. But as one activist bluntly put it,
“There was this idea that we needed people to like us. But ACT UP said ‘so what? Why do we need to be liked?’ We are human beings, we need certain things. And the reason we’re not getting these things is because they don’t actually like us that much, and they wont”.
The idea that all human beings deserve housing and healthcare and basic needs was the driving ideology behind ACT UP. These were concepts spoken about and protested over since the organization's inception. And it was because of this that so many marginalized groups found a home in ACT UP. They weren’t simply advocating for a response to the AIDS crisis, they were advocating for a response to the human crisis. And to a racist, sexist, and capitalist culture that denied an equitable lifestyle to all individuals. The protests in 1990-1991 especially showcased this drive as ACT UP members stormed the National Institutes of Health in Maryland, chanted outside the Holy Cross Cathedral in Boston, overtook the Los Angeles County Board Supervisors, and put a 15 foot condom over the home of anti-queer senator Jesse Helms. One of the final, biggest demonstrations came in January of 1991 during the Day of Desperation when thousands of activists protested against Operation Desert Storm demanding “Money for AIDS not War”. The group filled Grand Central Station and made headlines across the country.
However, while the brilliancy of the movement is what made it so effective, it is also what made it more susceptible to group splits. As 1991 came to a close, many chapters had detached from the ACT UP name. While the group was incredibly successful, the reality was that many individuals were still dying. With drugs only becoming slightly more accessible, too many who were a part of the early movement were dying off. This wore down the morale of the movement and tore at the very fabric of the organization. This, combined with natural differences and bickering, eventually lead to a general dissolvement of ACT UP, though some groups would continue on for many more years. As a final, collective act, a few hundred demonstrators marched to the White House of George H. W. Bush and dumped the ashes of their loved ones on the White House Lawn. The moment poignantly showed the real cost of the movement and perfectly depicted exactly why ACT UP had ever existed.
Though the organization slowly fell away, its legacy had forever impacted the LGBTQ+ Community and the world at large. ACT UP changed the narrative on AIDS, and healthcare, and women's rights, and government support of the people. Those in the movement saw that while the government’s lack of response to AIDS was a direct threat, it was only a symptom of a much larger problem. As activist Zoe Leonard said:
“What AIDS revealed was not the problem of the virus. What AIDS revealed was the problem of our society. It was this fissure through which ... all the ways in which our society wasn’t working became abundantly clear”
Your recommended resources are the documentary United in Anger: A History of ACT UP available for free on Amazon Prime or linked in our script to YouTube. Or the book How to Survive a Plague by David France.
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