The last moments of AIDS activist David Kirby’s life, 1990, LIFE Magazine, photographer: Therese Frare, Pater Noster House, Columbus, Ohio (posterpage.ch/exhib/ex262aid/ex262aid.htm, February 2012). Top image: worldaidscampaign.org/country-reports, February 2012
Acquired immune deficiency syndrome (AIDS) is a medical condition that is characterized by severe suppression of the immune system, often resulting in numerous opportunistic infections. AIDS is caused by the human immunodeficiency virus (HIV), a retrovirus that attacks white blood cells responsible for preventing infections. Since its emergence in the late 1970s, AIDS has grown into a global pandemic.
Activism was already a LGBTQ folkway before the AIDS epidemic, and AIDS activism followed many of the same tactics as earlier forms. AIDS awareness and activism continue to be important aspects of Gay identity and community. Much of the LGBTQ AIDS activism that began in the USA inspired similar activism across the globe, with an ethic of inclusion that extends across ethnicity, gender, race, religion, and orientation.
Protester in front of the government office of the Secretaría de Economía in Mexico City, 2008, demanding lower prices for AIDS-related medication. The group delivered a message written in human blood: “Precios más bajos medicamentos VIH” (“Much lower prices (for) HIV medicine” (www.nydailynews.com/latino/20-000-gather-aids-conference-mexico-city-article-1.317450, January 2012)
Origins of the Epidemic, Giving It a Name
HIV infections appear to have originated in equatorial Africa. One of the first European victims of the as yet un-named illness was Danish Dr. Grethe Rask, a surgeon who had done extensive work in the hospitals of Zaire.
The illness initially manifested in the United States amongst members of metropolitan Gay communities, particularly in San Francisco and New York. In 1979, numerous doctors began noticing young men coming into clinics with inexplicable illnesses such as Kaposi’s sarcoma, pneumocystis carinii pneumonia (PCP), and toxoplasmosis. Other than their same-sex orientation, the only thing these men had in common was high-risk sexual behavior (particularly anal intercourse without a condom) and recreational drug use. As the number of cases increased, the Centers for Disease Control (CDC) and the National Cancer Institute began to take an interest in 1981. Although many officials held on to the hope that the immune suppression causing these bizarre diseases could be traced to poppers (amyl nitrate, an inhalant used by homosexual men to generate feelings of intoxication and to relax sphincter muscles during anal sex), more scientists realized that sexual transmission was a better explanation.
Due to its presumed exclusivity to the Gay community, names like “gay cancer” and “gay-related immune deficiency” (GRID) were used to describe the condition in the late 1970s and early 1980s. By 1982, it had become apparent that to some officials that the disease could likely be spread to hemophiliacs and transfusion recipients through contaminated blood. At a special meeting in Washington, DC between members of the CDC, blood industry, hemophiliac groups, the Gay community, and other government health organizations, the neutral AIDS acronym was coined.
Three Indonesian waria (an Indonesian transwoman identity) at the funeral for a friend who died from AIDS complications. Photo: Oliver Purser (vice.com/read/warias-come-out-and-plaaayayay-0000007-v18n10?Contentpage=2, March 2012)
Slow Response
In the 1980 USA presidential election, Ronald Reagan defeated incumbent Jimmy Carter with the help of Christian Fundamentalist groups such as Jerry Falwell’s Moral Majority as well as advocates of fiscal conservatism. The result of this victory was the advent of an administration that would slash domestic spending. The political climate in America fostered a federal government reluctant to spend money on a group of people that many citizens believed were undermining the morality of America. Initially, the Reagan Administration held that there was no compelling evidence that AIDS was a serious health priority. Since there was minimal funding for research that would prove the scope of the AIDS epidemic, the government waited until the late 1980s to take significant action. By the time President Reagan would make his first speech on the epidemic in 1987, there would be 36,058 diagnoses and 20,849 deaths in America.
Image of Ronald and Nancy Reagan with friend and fellow actor Rock Hudson, lampooning President Reagan’s reluctance to acknowledge the AIDS crisis (http://reagan-was-a-horrible-president.tumblr.com/post/3322007979/ronald-reagan-and-aids-read-the-truth, December 2011)
Responsibility for the care of AIDS patients and prevention efforts in the early years of the epidemic largely fell upon the Gay community, and only a few members within the community were prepared to take action to curb the rate of infection. The strong connection between identity and free sexual expression made preventative measures difficult to implement. Folk discourse of the Gay men’s movement held that having an active and uninhibited sex life was a central component to Gay liberation. Sexual behaviors such as cruising (looking for sexual partners) and visiting bathhouses were conceptualized as part of Gay male identity. Anyone who advocated curtailing these practices in the name of public health was lambasted in the Gay press as a sexual fascist and often accused of homophobia. High-risk sexual behavior involving unprotected sex largely continued unabated through the early 1980s, even as infection rates began to soar.
When Legionnaires disease took 29 lives in 1976, there was daily coverage of the crisis, resulting in millions in federal funding. On the issue of AIDS, however, media coverage was sparse, even though AIDS was claiming significantly more lives at a pace that showed no signs of abating. Not until the late 1980s did major newspapers take notice of the AIDS epidemic, and by then it was too late for the media to act as a source of AIDS awareness and prevention. During the early days of the epidemic, researchers and doctors across the nation had waited in vain for the media to catch the story and apply pressure on the government to release much needed funds.
Activists demonstrate in fron of the Food and Drug Administration in DC, 1988 (hab.hrsa.gov/livinghistory/voices/legacy-photography.htm, January 2012)
Rise of AIDS Awareness
By 1985, too many Gay men and transwomen had lost friends and lovers to AIDS for the Gay men to ignore the severity of the epidemic and not change their ways. An unprecedented change in Gay male folklife had occurred within the community. According to a survey by the AIDS Foundation in 1985, four in five San Francisco Gay men claimed to avoid all high-risk sexual behavior. There was a trend towards safer sex within committed relationships. Gay male identity no longer revolved around the free and frequent pursuit of sexual partners. For all the populations within the larger collective of Gay-related identities, to be Gay meant to be a part of a loving and caring community that took care of its own when no one else cared. Members of the Lesbian community were especially supportive of Gay men and transwomen as well as cisgender women who became HIV-positive.
In the summer of 1985, Rock Hudson (a masculine and presumably Straight Hollywood sex symbol) openly admitted to having AIDS. Although many famous people had already succumbed to the illness, few obituaries identified AIDS as a factor in their deaths due to the stigma of the disease. The media became interested when Hudson collapsed in Paris and was rushed to a hospital. After Hudson acknowledged his diagnosis, AIDS went from a taboo subject to front-page news, and AIDS-related fundraising efforts and support groups increased.
Continued Denial
Despite the best efforts of activists to raise awareness of the severity of the problem, misinformation, silence, and outright denial of the epidemic continued well into the first decade of the twenty-first century. One stark example was Manto Tshabalala-Msimang, Minister of Health in South Africa from 1999 until 2008, who questioned the link between HIV and AIDS. She also was critical of what she saw as Western medical solutions for Africa’s health problems, and recommended that AIDS be treated by folk remedies, such as one made with garlic, lemon juice, and beetroot, rather than antiretroviral medication. For this recommendation, AIDS activists called her “Doctor Beetroot.”
Mural in South Africa promoting safer sex (southafrica-for-dummies.com, January 2012)
GMHC and the Shanti Project
An early grassroots organization that dealt with the AIDS epidemic was the Gay Men’s Health Crisis (GMHC) in New York City. GMHC was formed in 1982 by a group of Gay men, including Paul Popham, Larry Kramer, and Enno Poersch, who lost friends and lovers to AIDS. Its primary goals were to spread up-to-date information on the epidemic and to provide various services to People with AIDS (PWAs). One of the organization’s earlier endeavors was to set up a hotline that Gay men could call to ask questions, seek social support, and request assistance. Eventually, GMHC set up a “Buddy Program” that offered basic services to ailing people and coordinated numerous support groups for PWAs.
Volunteers from New York Cares who serve dinners at GMHC in Chelsea, Manhattan are honored by GMHC for their work (blog.newyorkcares.org/?p=2630, December 2011)
The San Francisco-based Shanti (Sanskrit: “peace”) Project was another crucial grassroots effort. This organization was founded at the University of California-Berkeley seven years prior to the government’s acknowledgement of the outbreak of the AIDS epidemic as a community-based effort to help PWAs deal with the emotional and spiritual aspects of terminal illness. Both GMHC and Shanti were criticized for not being firm enough in condemnation of practices like unprotected sex and bathhouse cruising as causes for increased infection.
Project Lazarus, ACT, and Rézo
Similar organizations to GMHC and Shanti arose across North America. In response to the growing number of homeless people with AIDS, shelters and hospices were opened in major cities, including Project Lazarus in New Orleans (1983), a collaborative effort between the city, the Gay community, and the Roman Catholic Church to set up a refuge for PWAs with no other place to go. In Canada, urban organizations would work to help PWAs and educate the public, such as ACT (AIDS Committee of Toronto, 1983) and R´EZO in Montreal (formerly known as Séro-Zéro, “Zero Seroconversions,” with origins in the mid-1980s).
ACT UP
In 1987, former GMHC chairperson Larry Kramer helped found the AIDS Coalition To Unleash Power (ACT UP) in New York City, a confrontational organization dedicated to the rights and lives of PWAs, regardless of their sexual orientation. Branches soon formed across the nation. By utilizing often controversial public protest, civil disobedience, and theatrical performance (often in the form of zaps, sensational and sudden disruptions), ACT UP sought to put pressure on the Food and Drug Administration to rush approvals and cut the cost of drugs, such as Gancyclovir and AZT, which were deemed essential to prolonging the lives of AIDS patients.
The Quilt
chsweb.lr.k12.nj.us/eregn/std/pictures.htm, December 2011)
During a memorial service for Harvey Milk in 1985, Gay activist Cleve Jones envisioned what would become the AIDS Quilt, 3’X6’ panels of cloth made by friends and family of those who had died of AIDS, that would be sewn together in large 12’ blocks and displayed publicly to bring home the severity of the epidemic. In 1996, the Quilt in its entirety was displayed on the Mall in Washington, DC, covering the Mall’s expanse. Weighing over fifty tons, the Quilt is one of the largest continuous folk art projects in existence, with panels sent in from countries all over the world.
Red Ribbon
AIDS ribbon on White House, Obama administration, 2011 (signsbytomorrow.com/franchisee/news/default.aspx?id=416&d=rockville, December 2011)
The single-loop red ribbon was designed by the Visual AIDS Artists Caucus in 1991 to symbolize compassion for PWAs. Since its creation, the red ribbon has become an internationally recognized symbol for AIDS awareness, and inspired a variety of ribbons in different colors to represent various causes. This particular symbol has never been exclusively for the Gay community, and has been embraced by many people in the Straight community since its beginning. It may best be considered an example of collaborative Gay and Straight folk art.
The Circuit
In addition, the GMHC sponsored fundraiser entertainment and dances, including the Fire Island Morning Party, which became part of the Circuit (large-scale weekend-long dance events for Gay men and their allies). Other AIDS organizations would sponsor Circuit events, such as the National Gay and Lesbian Task Force (White Party and Winter Party in Miami, Ascension on Fire Island), the Sapphire Fund in Philadelphia (Blue Ball), Bad Boy Club Montreal (Black and Blue), Halloween’s In New Orleans, and Dallas Purple Foundation (Purple Party).
Winter Party, Miami (www.gay.net/travel-escapes/2011/12/15/miami’s-winter-party-festival-2012-february-29-march-5, January 2012)
The Morning Party, however, lost its GMHC sponsorship in 1998 due to a death from irresponsible GHB drug use that occurred in 1998, bringing accusations of gross irresponsibility against the GMHC for sponsoring events that appeared to not only foster drug abuse, but also irresponsible sexual behavior.
PrEP and Slut Shaming
In 2012, the USA’s Food and Drug Administration approved the use of the drug Truvada for use in pre-exposure prophylaxis (PrEP), a treatment that dramatically reduces seroconversion. But some activists in the Gay male community criticized Truvada as a party drug, that is, an excuse for promiscuous men to behave irresponsibly and act as if HIV and other sexually transmitted diseases were no longer health risks. Others in the community saw such criticism as slut shaming, attempts to humiliate vulnerable members of the community. Slut shaming would undermine the importance and effectiveness of PrEP in reducing HIV transmission, stigmatizing not only those who are sexually active with multiple partners, but also those serodiscordant couples (in which one partner is HIV positive, while the other is negative) who use PrEP as part of their safer-sex regimen.
– Jaime Hartless and Mickey Weems
QEGF Authors and Articles
QEGF Introduction
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Further reading:
Deverell, Katie. Sex, Work, and Professionalism: Working in HIV/AIDS. London: Routledge, 2001.
Edwards, Jeffrey. 2000. “AIDS, Race, and the Rise and Decline of a Militant Oppositional Lesbian and Gay Politics in the US”. New Political Science. 22: pp. 485-506.
Goldstein, Diane. Once Upon a Virus: AIDS legends and Vernacular Risk Perception. Logan, UT: Utah State University, 2004.
Shilts, Randy. And the Band Played On: Politics, People, and the AIDS Epidemic. New York: St. Martin’s, 1987.