ACT UP - Act Up

AIDS Coalition to Unleash Power (ACT UP) is an international direct action advocacy group working to impact the lives of people with AIDS (PWAs) and the AIDS pandemic to bring about legislation, medical research and treatment and policies to ultimately bring an end to the disease by mitigating loss of health and lives.

ACT UP was effectively formed in March 1987 at the Lesbian and Gay Community Services Center in New York. Larry Kramer was asked to speak as part of a rotating speaker series, and his well-attended speech focused on action to fight AIDS. Kramer spoke out against the Gay Men's Health Crisis (GMHC), which he perceived as politically impotent. Kramer had co-founded the GMHC but had resigned from its board of directors in 1983. According to Douglas Crimp, Kramer posed a question to the audience: "Do we want to start a new organization devoted to political action?" The answer was "a resounding yes." Approximately 300 people met two days later to form ACT UP.

ACT UP New York actions

The following chronological accounts of New York ACT UP actions are drawn from Douglas Crimp's history of ACT UP, the ACT UP Oral History Project, and the online Capsule History of ACT UP, New York.

Wall Street

On March 24, 1987, 250 ACT UP members demonstrated at Wall Street and Broadway to demand greater access to experimental AIDS drugs and for a coordinated national policy to fight the disease. An Op/Ed article by Larry Kramer published in the New York Times the previous day described some of the issues ACT UP was concerned with. Seventeen ACT UP members were arrested during this civil disobedience.

On March 24, 1988, ACT UP returned to Wall Street for a larger demonstration in which over 100 people were arrested.

On September 14, 1989, seven ACT UP members infiltrated the New York Stock Exchange and chained themselves to the VIP balcony to protest the high price of the only approved AIDS drug, AZT. The group displayed a banner that read, “SELL WELLCOME” referring to the pharmaceutical sponsor of AZT, Burroughs Wellcome, which had set a price of approximately $10,000 per patient per year for the drug, well out of reach of nearly all HIV positive persons. Several days following this demonstration, Burroughs Wellcome lowered the price of AZT to $6,400 per patient per year.

General Post Office

ACT UP held their next action at the New York City General Post Office on the night of April 15, 1987, to a captive audience of people filing last minute tax returns. This event also marked the beginning of the conflation of ACT UP with the Silence = Death Project, which created the famous poster consisting of a right side up pink triangle (an upside-down pink triangle was used to mark gays in Nazi concentration camps) on a black background with the text "SILENCE = DEATH". Douglas Crimp speaks of the "media savvy" of ACT UP at this demonstration, because the television media "routinely do stories about down-to-the-wire tax return filers." As such, ACT UP was virtually guaranteed media coverage.

FDA

On October 11, 1988 ACT UP had one of its most successful demonstrations (both in terms of size and in terms of national media coverage) when it successfully shut down the Food & Drug Administration (FDA) for a day. Media reported that it was the largest such demonstration since demonstrations against the Vietnam War.

"The AIDS activists shut down the large facility by blocking doors, walkways and a road as FDA workers reported to work. Police told some workers to go home rather than wade through the throng.

"Hey, hey, FDA, how many people have you killed today?" chanted the crowd, estimated by protest organizers at between 1,100 and 1,500. The protesters hoisted a black banner that read "Federal Death Administration."

Police officers, wearing surgical gloves and helmets, started rounding up the hundreds of demonstrators and herding them into buses shortly after 8:30 a.m. Some protesters blocked the buses from leaving for 20 minutes.

Authorities arrested at least 120 protesters, and demonstration leaders said they were aiming for 300 arrests by day's end."

At this action, activists demonstrated their thorough knowledge of the FDA drug approval process. ACT UP presented precise demands for changes that would make experimental drugs available more quickly, and more fairly. "The success of SEIZE CONTROL OF THE FDA can perhaps best be measured by what ensued in the year following the action. Government agencies dealing with AIDS, particularly the FDA and NIH, began to listen to us, to include us in decision-making, even to ask for our input."

Cosmopolitan magazine

In January 1988, Cosmopolitan magazine published an article by Robert E. Gould, a psychiatrist, entitled "Reassuring News About AIDS: A Doctor Tells Why You May Not Be At Risk." The main contention of the article was that in unprotected vaginal sex between a man and a woman who both had "healthy genitals" the risk of HIV transmission was negligible, even if the male partner was infected. Women from ACT UP who had been having informal "dyke dinners" met with Dr. Gould in person, questioned him about several misleading facts (that penis to vagina transmission is impossible, for example), questionable journalistic methods (no peer review, bibliographic information, failing to disclose that he was a psychiatrist and not a practitioner of internal medicine), and demanded a retraction and apology. When he refused, in the words of Maria Maggenti, they decided that they "had to shut down Cosmo." According to those who were involved in organizing the action, it was significant in th at it was the first time the women in ACT UP organized separately from the main body of the group. Additionally, filming the action itself, the preparation and the aftermath were all consciously planned and resulted in a video short directed by Jean Carlomusto and Maria Maggenti, titled, "Doctor, Liars, and Women: AIDS Activists Say No To Cosmo." The action consisted of approximately 150 activists protesting in front of the Hearst building (parent company of Cosmopolitan) chanting "Say no to Cosmo!" and holding signs with slogans such as "Yes, the Cosmo Girl CAN get AIDS!" Although the action did not result in any arrests, it brought significant television media attention to the controversy surrounding the article. Phil Donahue, Nightline, and a local talk show called "People Are Talking" all hosted discussions of the article. On the latter, two women, Chris Norwood and Denise Ribble took the stage after the host, Richard Bey, cut Norwood off during an exchange about whether heteros exual women are at risk from AIDS. Footage from all of these media appearances were edited into "Doctors, Liars, and Women." Cosmopolitan eventually issued a partial retraction of the contents of the article.

Women and the CDC’S AIDS Definition

Following their participation in the Cosmopolitan protest, ACT UP’s Women’s Caucus targeted the Center for Disease Control for its narrow definition of what constituted HIV/AIDS. While causes of HIV transmission, like unprotected vaginal or anal sex, were similar among both men and women, the symptoms of the virus varied greatly. As historian Jennifer Brier noted, “for men, full-blown AIDS often caused Kaposi’s sarcoma, while women experienced bacterial pneumonia, pelvic inflammatory disease, and cervical cancer.” Since the CDC’s definition did not account for such symptoms as a result of AIDS, American women in the 1980s were often diagnosed with AIDS Related Complex (or ARC) or HIV. “In this process,” Brier explained, “these women effectively were denied the Social Security benefits that men with AIDS had fought hard to secure, and won, in the late 1980s.” In October 1990, attorney Theresa McGovern filed suit representing 19 New Yorkers who claimed they were unfairly denied disability benefits because of the CDC’s narrow definition of AIDS. At an October 2, 1990 protest to raise attention for McGovern’s lawsuit, two hundred ACT UP protestors gathered in Washington and chanted “How many more have to die before you say they qualify,” and carried posters to the rally with the tagline “Women Don’t Get AIDS/ They Just Die From It.” The CDC’s initial reaction to calls of the revising the AIDS definition included setting the threshold of AIDS for both men and women at a T cell count of under 200. However, McGovern dismissed this suggestion. “Lots of women who show up at hospitals don’t get T cells taken. No one knows they have HIV. I knew how many of our clients were dying of AIDS and not counted.” Rather, McGovern, along with the ACLU and the New Jersey Women and AIDS Network, called for adding fifteen conditions to the list of the CDC’s surveillance case definition, which was eventually adopted in January 1993. Six m onths later, the Clinton administration revised federal criteria for evaluating HIV status and making it easier for women with AIDS to secure Social Security benefits. The Women’s Caucus’ role in altering the CDC’s definition helped to not only drastically increase availability of federal benefits to American women, but helped uncover a more accurate number of HIV/AIDS infected women in the United States; “under the new model, the number of women with AIDS in the United States increased almost 50 percent.”

"Stop the Church"

ACT UP disagreed with Cardinal John Joseph O'Connor on the Roman Catholic Archdiocese's public stand against safe sex education in New York City Public Schools, condom distribution, the Cardinal's public views on homosexuality, as well as Catholic opposition to abortion. This led to the first Stop the Church protest on December 10, 1989 at St. Patrick's Cathedral, New York. In December 1989, approximately 4,500 protestors mobilized by ACT-UP and WHAM! gathered outside a mass at the cathedral. A few dozen activists entered the cathedral, interrupted Mass, chanted slogans, or lay down in the aisles. One protestor broke a communion wafer and threw it to the floor. One-hundred and eleven protesters were arrested. Only minor charges were filed, punished primarily by community service sentences; some protestors who refused the sentences were tried, but did not serve jail time.

As a result of the St. Patrick's Cathedral action, ACT UP was publicly condemned by Mayor Edward Koch and some media for what they viewed as militancy and disrespect. NY Gov. Mario Cuomo "deplored the demonstration." ACT UP's account of the event notes that "The news media choose to focus on, and distort, a single Catholic demonstrator's personal protest involving a communion wafer." However, the Cathedral protest was criticized as "stupid and wrong-headed" by Andy Humm, a spokesman for the Coalition for Gay and Lesbian Rights, while one ACT UP leader, Peter Staley, denounced the protest as an "utter failure" and a "selfish, macho thing."

Robert Hilferty's documentary about the protest, Stop the Church, was originally scheduled to air on PBS. The film was eventually dropped from national broadcast by PBS, but still aired on Public-access television cable TV stations in several major cities including Los Angeles, New York and San Francisco.

The incident has been compared to the 2012 trial of Pussy Riot for hooliganism and incitement of religious hatred in Moscow after their protest at the Cathedral of Christ the Saviour. A Radio Free Europe Radio Liberty article about the Moscow trial described the Stop the Church protest as "seminal", contributing to early 1990s reforms granting Americans with HIV and AIDS federal protection from discrimination, a U.S. government office on AIDS policy, and millions of dollars for biomedical research. "ACT UP activists now say the St. Patrick's protest changed the way many Americans viewed the Catholic Church. It was no longer untouchable, and its policies -- on everything from condoms and abortion to gay marriage and women priests -- were no longer sacrosanct." Jim Hubbard, an ACT UP member and maker of the documentary "United in Anger" about ACT UP history, said "I wasn't clear about what going inside the church would add at the time. But now I think that the shock of going inside and confronting the cardinal really worked. It helped bring ACT UP to mainstream attention. It brought the crisis to a point where the government and the mainstream media really had to start dealing with it."

NIH demonstration

In May 1990, ACT UP organized a large choreographed demonstration at the National Institutes of Health (NIH) Campus. According to Kramer, this was their best demonstration, but was almost completely ignored by the media because of a large fire in Washington, D.C. on the same day.

Day of Desperation

On January 22, 1991, during Operation Desert Storm, ACT UP activist John Weir and two other activists entered the studio of the CBS Evening News at the beginning of the broadcast. They shouted "AIDS is news. Fight AIDS, not Arabs!" and Weir stepped in front of the camera before the control room cut to a commercial break. The same night ACT UP demonstrated at the studios of the MacNeil/Lehrer Newshour. The next day activists displayed banners in Grand Central Terminal that said "Money for AIDS, not for war" and "One AIDS death every 8 minutes." One of the banners was handheld and displayed across the train timetable and the other attached to bundles of balloons that lifted it up to the ceiling of the station's enormous main room. These actions were part of a coordinated protest called "Day of Desperation."

Seattle schools

In December 1991, ACT UP's Seattle chapter distributed over 500 safer-sex packets outside Seattle high schools. The packets contained a pamphlet titled "How to Fuck Safely", which was photographically illustrated and included two men performing fellatio. The Washington state legislature subsequently passed a "Harmful to Minors" law making it illegal to distribute sexually explicit material to underage persons.

Boston and New England

In January 1988, ACT UP Boston held its first protest at the Boston offices of the Department of Health and Human Services, regarding delays and red tape surrounding approval of AIDS treatment drugs. ACT UP/Boston's agenda included demands for a compassionate and comprehensive national policy on AIDS; a national emergency AIDS project; intensified drug testing, research, and treatment efforts; and a full-scale national educational program within reach of all. The organization held die-ins and sleep-ins, provided freshman orientation for Harvard Medical School students, negotiated successfully with a major pharmaceutical corporation, affected state and national AIDS polices, pressured health care insurers to provide coverage for people with AIDS, influenced the thinking of some of the nation's most influential researchers, served on the Massachusetts committee that created the nation's first online registry of clinical trials for AIDS treatments, distributed information and condoms to the congregation at Cardinal Bernard Francis Law Confirmation Sunday services at Cathedral of the Holy Cross, Boston, and made aerosolized pentamidine an accessible treatment in New England.

Structure of ACT UP

ACT UP was organized as a leaderless and effectively anarchist network. This was intentional on Larry Kramer's part - he describes it as "democratic to a fault." It followed a committee structure with each committee reporting to a coordinating committee meeting once a week. Actions and proposals were generally brought to the coordinating committee and then to the floor for a vote, but this wasn't required - any motion could be brought to a vote at any time. Gregg Bordowitz, an early member, said of the process:

"This is how grassroots, democratic politics work. To a certain extent, this is how democratic politics is supposed to work in general. You convince people of the validity of your ideas. You have to go out there and convince people."

This is not to say that it was in practice purely anarchic or democratic. Bordowitz and others admit that certain people were able to communicate and defend their ideas more effectively than others. Although Larry Kramer is often labeled the first "leader" of ACT UP, as the group matured, those people that regularly attended meetings and made their voice heard became conduits through which smaller "affinity groups" would present and organize their ideas. Leadership changed hands frequently and suddenly.

• Some of the Committees were:
  • Action Committee
  • Finance Committee
  • Outreach Committee
  • Treatment and Data Committee
  • Media Committee
  • Graphics Committee
  • Housing Committee

Note: As ACT UP had no formal organizing plan, the titles of these committees are somewhat variable and some members remember them differently than others.

Along with committees, ACT UP New York relied heavily on "affinity groups". These groups often had no formal structure, but were centered on specific advocacy issues and personal connections, often within larger committees. Affinity groups supported overall solidarity in larger, more complex political actions through the mutual support provided to members of the group. Affinity groups often organized to perform smaller actions within the scope of a larger political action, such as the "Day of Desperation", when the Needle Exchange group presented NY City Health Department officials with thousands of used syringes they had collected through their exchange (contained in water cooler bottles).

Gran Fury

Gran Fury functioned as the anonymous art collective that produced all of the artistic media for ACT UP. The group remained anonymous because it allowed the collective to function as a cohesive unit without any one voice being singled out. The mission of the group was to bring an end to the AIDS Crisis by making reference to the issues plaguing society at large, especially homophobia and the lack of public investment in the AIDS epidemic, through bringing art works into the public sphere in order to reach the maximum audience. The group often faced censorship in their proceedings, including being rejected for public billboard space and being threatened with censorship in art exhibitions. When faced with this censorship, Gran Fury often posted their work illegally on the walls of the streets.

DIVA-TV

DIVA-TV, an acronym for “Damned Interfering Video Activist Television," was an affinity group within ACT UP that videotaped and documented AIDS activism. Its founding members are Catherine Gund, Ray Navarro, Ellen Spiro, Gregg Bordowitz, Robert Beck, Costa Pappas, Jean Carlomusto, Rob Kurilla, George Plagianos. One of their early works is “Like a Prayer” (1991), documenting the 1989 ACT UP protests at St. Patrick's Cathedral against New York Cardinal O'Connor’s position on AIDS and contraception. In the video, Ray Navarro, an ACT UP/DIVA TV activist, serves as the narrator, dressed up as Jesus. The documentary aims to show mass media bias as it juxtaposes original protest footage with those images shown on the nightly news.

Although less as a "collective" after 1990, DIVA TV continued documenting (over 700 camera hours) the direct actions of ACT UP, activists, and the community responses to HIV/AIDS, producing over 160 video programs for public access television channels - as the weekly series "AIDS Community Television" from 1991â€"1996 and from 1994-96 the weekly call-in public access series "ACT UP Live"; film festival screenings; and continuing on-line documentation and streaming internet webcasts. The video activism of DIVA TV ultimately switched media in 1997 with the establishing and continuing development of the ACT UP (New York) website. The most recent DIVA TV-genre video program documenting the history and activism of ACT UP (New York) is the feature-length documentary: "Fight Back, Fight AIDS: 15 Years of ACT UP" (2002), screened at the Berlin Film Festival and exhibited worldwide. DIVA TV programs and camera-original videotapes are currently re-mastered, archived and preserved, and publi cly accessible in the collection of the "AIDS Video Activist Video Preservation Project" at the New York Public Library.

Institutional independence

ACT UP had an early debate about whether to register the organization as a 501(c)(3) nonprofit in order to allow contributors tax exemptions. Eventually they decided against it, because as Maria Maggenti said, "they didn't want to have anything to do with the government." This kind of uncompromising ethos characterized the group in its early stages; eventually it led to a split between those in the group who wanted to remain wholly independent and those who saw opportunities for compromise and progress by "going inside [the institutions and systems they were fighting against]."

Later years

ACT UP, while extremely prolific and certainly effective at its peak, suffered from extreme internal pressures over the direction of the group and of the AIDS crisis. After the action at NIH, these tensions resulted in an effective severing of the Action Committee and the Treatment and Data Committee, which reformed itself as the Treatment Action Group (TAG). Several members describe this as a "severing of the dual nature of ACT UP."

In 2000 ACT UP/Chicago was inducted into the Chicago Gay and Lesbian Hall of Fame.

ACT UP chapters continue to meet and protest, albeit with a smaller membership. ACT UP/NY and ACT UP/Philadelphia are particularly robust, with other chapters active elsewhere.

Housing Works, New York's largest AIDS service organization and Health GAP, which fights to expand treatment for people with AIDS throughout the world, are direct outgrowths of ACT UP.

Factionalism in San Francisco

In 2000, ACT UP/Golden Gate changed its name to Survive AIDS, to avoid confusion with ACT UP/San Francisco (ACT UP/SF). The two had previously split apart in 1990, but continued to share the same essential philosophy. In 1994, ACT UP/SF began rejecting the scientific consensus regarding the cause of AIDS and the connection to HIV, and the two groups became openly hostile to each other, with mainstream gay and AIDS organizations also condemning ACT UP/SF. The group would link up with People For the Ethical Treatment of Animals against animal research into AIDS cures. Restraining orders have been granted after the organization physically attacked AIDS charities that help HIV-positive patients, and activists have been found guilty in misdemeanor charges laid after threatening phone calls to journalists and public health officials.