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"We Got to Fight for Each Other": The ACT UP Experience in the Fight against HIV/AIDS

The dimension of the community became fundamental during the HIV/AIDS epidemic that devastated the lgbtq+ community since the very first years of the 1980s and that drastically changed the urban layout of major cities as well as the ways of doing activism. The threat of HIV/AIDS firstly appeared in homosexual circles: people began to show lesions to the skin and pneumonia without an apparent cause, and the new mysterious disease was initially named “gay-related immune deficiency”. Soon after the nomenclature of the disease was changed in “acquired immune deficiency syndrome” (AIDS) because it became the cause of death of non-homosexual people as well. Nonetheless, the original name had the consequence of attaching an additional layer of stigma on homosexual and gender variance identities with the result that much political, religious, and scientific reflection froze and greatly delayed the needed actions to stop the spread of the disease.

In the early stages of the pandemic, the scientific community did not understand what caused AIDS: only by 1983, the virus responsible for the disease was identified, HIV (human immunodeficiency virus). However, there was still much confusion on how the virus spread and which was the complete array of its symptoms; thus, it was complicated to make a diagnosis and to estimate the survival rate for patients. This lack of information rendered HIV/AIDS extremely frightening for society at large, and a death sentence for everyone who had the virus.

Given the fact that HIV first spread within the white homosexual sub-culture, and that it rapidly arrived to infect the queer community of color, especially transgender women, it became intrinsically associated with homosexuality and in the public imagination, this sexual identity became synonymous with the fatal illness. Gay people had to confront not only with a deadly virus but also with the social stigma that depicted them as plague-spreader. This narrative was presented by the political establishment and the religious authorities, and reiterated by the media, and it had terrible consequences: in fact, «this stigmatization led to numerous laws that discriminated against people with AIDS in insurance, the workplace, and housing» (Bronski, 2012, 226), and the situation's gravity was conspicuously ignored by the government.

After Ronald Reagan was elected as the fortieth president of the United States, the country experienced a rise of Christian fundamentalism that was openly supported by the newly elected president and that has led the government to be critically neglectful in relation to HIV/AIDS: in fact, the epidemic had been extensively used by the religious and political right to address the old claim that homosexuality is a sin against nature and God, and this new disease was a sort of divine punishment not only for those people who were engaging in disgraceful sodomy but also for the society that tolerated the presence of gay people. Thus, the rhetorical discourses behind HIV/AIDS were built in an attempt to reinforce traditional ideas and norms about sexuality, in a period where homosexuality was progressively accepted and was not considered a pathology anymore - homosexuality was removed from the DSM in 1973. Consequently, in cities such as New York City and San Francisco, public policies that targeted spaces where queer people could meet were passed in an attempt to carry out the ideological project of “cleaning” America from perverse and dangerous sexual practices. These attempts to regulate sexuality had the effect of impeding an adequate public health response to the epidemic.

The narrative around and about HIV/AIDS was constructed by the political, religious, and mediatic authorities in such a way that the disease was an exclusive concern of homosexual and queer people, and for the first few years, the scientific community did not propose an alternative vision. On the contrary, for quite a while there was the idea that women could not get the virus, and thus that heterosexual couples should not be concerned with a disease that was decimating the gay and queer subcultures. The misconception that women were somehow not affected by the virus has been one of the most difficult to eradicate, and the medical establishment largely ignored the specificities of HIV/AIDS for cisgender women, and much of the public discourse was only considering the possibility that cisgender woman could get the virus in the case that their partners were engaging in homosexual sex. There are different ideas behind the narrative that had been proposed about HIV/AIDS: besides the aforementioned targeting of homosexuality, there is also a consistent underestimation of the importance of women health, both heterosexual and lesbians, as well as a complete erasure of the identitarian claims of transgender women who, evidently, were not considered to be “real” women. The reiteration of this narrative had the consequence that cisgender women were ignored by the medical community, and the feminist movement had to re-organize around this problem.

A similar necessity of making community face the threat of the epidemic was present among queer people of color as well: because of the historical disenfranchisement suffered by this community, which had among its consequences poor access to health care services, queer people of color had to invent specific strategies of care to survive the plague of HIV/AIDS. In this regard, Hines (2007, 164) argues that the social marginalization that queer people have to deal with prompt the creation of practices of care based upon shared experience: in this context, the group ACT UP (AIDS Coalition to Unleash Power) has historically been the fundamental activist presence that pressured the scientific community, the pharmaceutical industry, and the US government to fund research and trial programs, to develop treatments, and to adopt concrete measures for HIV/AIDS.

ACT UP was born as a direct result of the political idleness demonstrated by the presidential and the various local administrations: in March 1987, playwright and activist Larry Kramer spoke at the “New York Lesbian and Gay Center” giving voice to the necessity of forming a group that would pressure the government and the scientific community in order to finally have some action from their part in the fight against HIV/AIDS; two days later, more than three hundred people met and organized the group and project that became known as ACT UP.

The first successful protest pursued by the group was the march on Wall Street that took place on March 24, 1987, in New York City. The protesters demanded a reduction of the price for the only drug available at the time to treat AIDS, AZT (Azidothymidine). More complaining followed: in October 1988 ACT UP seized control of the headquarter of the FDA (Food and Drug Administration) in Maryland asking for a faster process of drug-testing, and subsequent approval and release, given the critical situation that the virus had at that point created. But the activist group did not target solely the pharmaceutical industry and the political authorities, but also the religious establishment that was indeed causing incredible damages with its rhetoric that, as illustrated above, articulated the epidemic as a divine punishment for homosexuals and other “perverts”. Particularly dangerous resulted from the stance of the archbishop of New York, Cardinal O'Connor, who promoted the falsehood that the use of condoms was ineffective in preventing the transmission of HIV, while also lobbying to stop programs that dispensed condoms in public spaces such as homeless shelters (Bronski, 2012, 235). In response to the position of the Archbishop and its Church, ACT UP organized, in conjunction with affiliated groups such as the “Women’s Health Action and Mobilization” (WHAM), a peaceful protest at St. Patrick Cathedral in December 1989, that became one of the most famous political protests in the history of the organization: over a hundred people entered the cathedral, and lay down in the aisles, remaining for the large part in silence. At one point the demonstrators began to yell “stop killing us” creating bustle among the people who were praying; thus, the police intervened to stop the manifestation, and people were dragged away and arrested for social disobedience. Another popular ACT UP demonstration was organized in September 1991: Peter Staley and other activists wrapped the house of Senator Jesse Helms in a giant condom to protest against the politician's statements that HIV was a punishment for homosexuals and that as such they did not deserve public support in the health crisis.

The fundamental action of ACT UP permitted the activist to achieve crucial goals: among the others, in March 1989 ACT UP managed to have the Centers for Disease Control (CDC) change the definition of AIDS that, until that moment, ignored the specificities that the virus caused for the health of women and for injected-drug users. And in 1996 the project that ACT UP had been, with its intent of fighting for the dignity of people living with HIV/AIDS and for having more effective and affordable treatments for the disease, reached its peak with having successfully pressured the pharmaceutical industry to release a new cocktail of drugs called HAART (that stands for “Highly Active Anti-Retroviral Therapy”), a revolutionary, more affordable, treatment that extended the lives of people with AIDS.

The incredible successes that ACT UP achieved are a consequence of the fact that, although the group was born within the LGBT community, it soon organized its action around an alliance politics which saw the contribution of different subcultures and communities. ACT UP's project translated into a multi-community coalition where the lines that usually separate different races, classes, nationalities, sexual orientations, and genders had faded to encompass various instances of activism to adequately respond to the HIV/AIDS epidemic.


Images references

  • ACT UP members march in the Gay Pride Parade, New York, June 1989.

  • Members of AIDS activist group ACT UP (AIDS Coalition to Unleash Power) hold up signs of George W. Bush, Ronald Reagan, Nancy Reagan, Jesse Helms and other with the word "Guilty" stamped on their foreheads, along with a banner stating "Silence Equals Death" at a protest at the headquarters of the Food and Drug Administration (FDA) on October 11, 1988 in Rockville, Maryland. The action, called SEIZE CONTROL OF THE FDA by the group, shut down the FDA for the day. (Photo by Catherine McGann/Getty Images)

  • ACT UP Demonstration Outside St. Patrick's Cathedral (Original Caption) A crowd of ACT UP activists march in front of St. Patrick's Cathedral during the twenty-fifth anniversary celebration of the Stonewall Uprising. On June 26, 1969 gay men and women barricaded themselves in Manhattan's Stonewall Inn and united against sexual discrimination and police brutality in the first act of unity for gay rights. (Photo by mark peterson/Corbis via Getty Images)

  • Image credit: The “People With AIDS” contingent in the 1983 San Francisco Gay Freedom Day parade; photo by Marie Ueda, Marie Ueda Photographs (2006-12), GLBT Historical Society.

Author Photo

Marica Felici

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