"The majority of people dying of AIDS were people of color": AIDS Activism & Rising Inequality

By Tamar W. Carroll

Members of the ACT UP Majority Action Committee demonstrate at the Food and Drug Administration in Washington, DC in 1988. Their demands included that the drug approval process for AIDS treatments be shortened and that people from all affected populations, including women, people of color, poor people, and IV drug users, must be included in clinical trials. The t-shirts they designed and wore, "WE DIE -- THEY DO NOTHING" list in fine print that WE = "People of color, whether we are Afro-American, Native American, Hispanic, Latino, or Asian, women, men, IV drug users, partners of IV drug users, lesbians, gays, straights, the homeless, prisoners, and children affected by the AIDS crisis," while THEY = "Ronald Reagan, George Bush, Michael Dukakis, the NIH, the FDA, the U.S. Congress, the Congressional Black and Hispanic Caucus, our national media, our national minority leaders. The border repeats "WE RECOGNIZE EVERY AIDS DEATH AS AN ACT OF RACIST, SEXIST, AND HOMOPHOBIC VIOLENCE." See footnotes for citation. Photo by and curtesy of Donna Binder.

Members of the ACT UP Majority Action Committee demonstrate at the Food and Drug Administration in Washington, DC in 1988. Their demands included that the drug approval process for AIDS treatments be shortened and that people from all affected populations, including women, people of color, poor people, and IV drug users, must be included in clinical trials. The t-shirts they designed and wore, "WE DIE -- THEY DO NOTHING" list in fine print that WE = "People of color, whether we are Afro-American, Native American, Hispanic, Latino, or Asian, women, men, IV drug users, partners of IV drug users, lesbians, gays, straights, the homeless, prisoners, and children affected by the AIDS crisis," while THEY = "Ronald Reagan, George Bush, Michael Dukakis, the NIH, the FDA, the U.S. Congress, the Congressional Black and Hispanic Caucus, our national media, our national minority leaders. The border repeats "WE RECOGNIZE EVERY AIDS DEATH AS AN ACT OF RACIST, SEXIST, AND HOMOPHOBIC VIOLENCE." See footnotes for citation. Photo by and curtesy of Donna Binder.

While they have often been criticized for practicing narrowly focused, single-issue politics, AIDS activists correctly saw cultural and economic issues as linked and sought to combat both antigay sentiment and the ascending neoliberalism of the Reagan era.

In the late 1980s and early 1990s, AIDS activists’ stunning visual art and spectacular street theater reshaped the social geography of Lower Manhattan, leading to a dynamic coalition between gay men, lesbians, and feminists supporting not only sexual freedom but also health care for all. The public art and dramatic street theater of the AIDS Coalition To Unleash Power (ACT UP) and its ally, Women’s Health Action Mobilization! (WHAM!), brought once-isolated men and women together and gave them an immediate sense of connection. It also changed the way they experienced space in Lower Manhattan, producing a vocal and visible activist queer community that rejected established gender norms and embraced a fluid rather than fixed understanding of sexuality. Like previous gay rights advocates, queer activists reappropriated what had been a derogatory term for homosexuals and used it as a “sly and ironic weapon” against homophobia….[1]

Although ACT UP’s many chapters and dramatic, highly publicized demonstrations gave it a global presence, a locally based sense of place was essential to the group’s identity and targets.[2] ACT UP targeted institutions with particular resonance to New Yorkers, such as Wall Street and the New York Times, and leveraged the media to boost their national and international significance. The organization unleashed a flurry of activity in its first several years, holding large and raucous demonstrations periodically as well as smaller, more spontaneous “zap actions” continuously. In addition to medical and public health authorities and the pharmaceutical and financial industries, ACT UP targeted the media for its inaccurate portrayal of the epidemic and especially who was at risk; luxury real estate developers like Donald Trump for exacerbating homelessness; and city hall for its inadequate response to the epidemic.

Because of his vocal and staunch opposition to homosexuality, condom use, and abortion, Cardinal John O’Connor, head of the Roman Catholic Church in New York, emerged as ACT UP New York’s leading enemy and the target of its most memorable protests. Hand-selected by Pope John Paul II to be Archbishop of New York in 1983, O’Connor quickly became a leading public figure in the city, installing a press booth in St. Patrick’s Cathedral and offering weekly press conferences.[3] O’Connor was combative and controversial, exemplified by his declaration that abortion was equivalent to the Holocaust and his threats to excommunicate Gov. Mario Cuomo for his support of abortion rights. He nonetheless remained highly influential and was seen as the Vatican’s leading spokesperson in the United States and the voice of conservative Catholicism nationally.[4]

While courting the press and Mayor Ed Koch, O’Connor worked to restrict abortion, gay rights, and sex education in public schools and to consolidate the archdiocese’s role as a key provider of health and social services. This was accomplished through the church’s facilities such as the Terence Cardinal Cooke Health Care Center, which was the site of New York’s first comprehensive-care ward for AIDS patients and was funded by the New York State Medical Care Facilities Finance Agency.[5] People with AIDS and their allies were painfully aware of the increasing influence the Catholic Church had over the provision of health care, both in New York City and across the United States. As many community hospitals closed and hospital and health-care center mergers and acquisitions increased, by 1985 the Catholic Church operated approximately one third of the nation’s health care systems. The Church did so in accordance with its own religious directives for care, while still receiving substantial public financing.[6] In this respect, O’Connor is representative of other conservative Christian leaders in the 1980s and 1990s who sought to gain both the moral high ground in national political discourse and an increasing share of newly privatized social service provision.[7] In its demonstrations against O’Connor, ACT UP sought both to reveal the human costs of homophobia and of restriction of abortion and sex education and to call attention to the public funding that the Church received to operate its hospitals, nursing homes, and homeless shelters, all of which banned discussion of contraception (including condoms), sterilization, or abortion with clients….

ACT UP’s confrontations with O’Conner culminated in its largest and most notorious protest, Stop the Church, at St. Patrick’s Cathedral in December 1989.  Credit: Manuscripts and Archives Division, The New York Public Library Digital Collections.

ACT UP’s confrontations with O’Conner culminated in its largest and most notorious protest, Stop the Church, at St. Patrick’s Cathedral in December 1989.

Credit: Manuscripts and Archives Division, The New York Public Library Digital Collections.

Manuscripts and Archives Division, The New York Public Library Digital Collections.

Manuscripts and Archives Division, The New York Public Library Digital Collections.

ACT UP and WHAM! members gather outside St. Patrick’s Cathedral during their “Stop the Church” action in December 1989. They protested Cardinal O’Connor’s opposition to condom use and to comprehensive sex education in New York City’s public schools. They also sought to raise awareness of the significant influence the Catholic Church wielded over the provision of health care for People with AIDS and the public funding it received for this purpose. ©Stacy Walsh Rosenstock

ACT UP and WHAM! members gather outside St. Patrick’s Cathedral during their “Stop the Church” action in December 1989. They protested Cardinal O’Connor’s opposition to condom use and to comprehensive sex education in New York City’s public schools. They also sought to raise awareness of the significant influence the Catholic Church wielded over the provision of health care for People with AIDS and the public funding it received for this purpose. ©Stacy Walsh Rosenstock

Women and people of color in ACT UP successfully pushed the organization to address not only the development of new AIDS treatments but also the larger, structural issues underlying the epidemic, including homophobia, racism, sexism, and class stratification. In May 1988, for example, ACT UP New York coordinated with other ACT UP branches in more than fifty cities around the country to launch nine days of protests focused on “unattended aspects” of the epidemic, including “IV drug use, homophobia, people of color, women, testing programs, prison programs and children with AIDS….”[8]

The Majority Action Committee, so named “because the majority of people dying of AIDS were people of color,” addressed the ways in which racial and economic inequalities shaped the epidemic. The committee was formed in late 1987 to represent the “Black, Hispanic, Indian, Asian, and other minority communities.”[9] African American law professor Kendall Thomas, who had participated in civil rights activism with his family and church as a child, explained the impetus for its founding. He stated that within ACT UP there was “a degree of ignorance, of such profound ignorance about issues of racial power, privilege—white skin privilege—the racially specific character of people’s experiences with the health care system—a whole range of issues—that we felt it necessary, particularly as members of the populations which, together, made up a majority of the people living in the city hardest hit by HIV/AIDS, to have our own presence and our own space, within ACT UP.”[10]

Lei Chou explained that “Majority Action was all the people of color in ACT UP that got together . . . to put the issues of people of color on the agenda, because ACT UP was so overwhelmingly white back then.”[11] The Majority Action Committee also worked to forge coalitions with community-based organizations that “weren’t likely to come to Monday night” ACT UP meetings, such as Baptist churches in Harlem and Asian American groups including Gay Asian Pacific Islander Men of New York (GAPIMNY), and to provide information on safe sex, testing, and treatment options to those communities.[12]

Lack of affordable housing for PWAs quickly emerged as a key issue for the Majority Action Committee. ACT UP estimated that 8,000 homeless people with AIDS, and thousands more infected with HIV, lived in New York City in 1980,while the city provided housing for only 1,316 of them. Homeless PWAs were particularly susceptible to opportunistic infections, including tuberculosis, which was on the increase after a long decline.[13] The growth in the homeless population was an unintended outcome of the deinstitutionalization movement of the 1960s and 1970s and the subsequent withdrawal of public funding for services to the mentally ill. The development of tranquilizers and antipsychotic drugs in the 1950s, combined with the efforts of advocates who exposed the dismal conditions in many institutions, led to the release of mentally ill patients into the city’s single-room-occupancy hotels, supported by public assistance. Seeking to restore its tax base during the financial crisis of the 1970s and early 1980s, the city offered developers substantial tax incentives to convert those hotels into luxury condominiums and apartments, and between 1970 and 1983, the number of single-room-occupancy units decreased 87 percent. The resulting lack of low-income housing and assistance, along with the steep recession of the early 1980s, led to a crisis of homelessness. By 1983, officials estimated there were 40,000 homeless people in New York City, including many families, the mentally ill, and alcoholics.[14] Thousands of homeless poor camped on the streets and in the subway system causing consternation among visiting tourists who were forced to step over their bodies.[15]

Members of the Majority Action Committee, including Chou and Keith Cylar, along with white allies Charles King, Eric Sawyer, and Gedalia Braverman, formed a Housing Committee to press the city to increase the supply of affordable housing for PWAs and coordinated with other advocates for the homeless to stage a series of actions. On Thanksgiving Day 1988 the ACT UP Housing Committee led a demonstration in front of the $200 million Trump Tower. Braverman explained the choice of location:

The feeling was that instead of these wealthy landlords getting tax abatements and incentives to develop housing for rich people, the city should be providing funds and services to target people who were homeless or on the verge of becoming homeless, because of the conglomeration of problems that occurred as people became ill and lost jobs. So, the idea was to target the Trump Tower which was at that time, the symbol of real estate gigantic-ness in Manhattan.[16]

Trump received the first-ever tax abatement for a commercial developer for his Grand Hyatt Hotel Project, near Grand Central Station. Like other Trump projects such as Trump Plaza at Third Avenue and 61st Street, the huge, mirrored Trump Tower loomed over its smaller neighbors on Fifth Avenue and featured an extravagant pink marble atrium with a $1 million waterfall. The development, with its luxury retail stores on the ground floor, was aimed at what Trump called the “world’s best people,” with apartments ranging in price from $550,000 to $10 million and doormen dressed like Buckingham Palace guards.[17]

Recognizing Trump as a key symbol of the privatization of New York that contributed to the rapid increase in economic inequality in the 1980s, ACT UP continued to target him. The Housing Committee returned to Trump Tower on February 11, 1989, for the “Soup Kitchen Rally,” in which a coalition of city groups protested the city’s failure to address homelessness, and again on Halloween 1989, when ACT UP members passed out candy, condoms, and information about AIDS and homelessness.[18] On November 9, 1989, the ACT UP Housing Committee held a “sleep in” at Grand Central Station, itself the site of an upscale redevelopment featuring a privatized Business Improvement District, to protest sweeps of homeless people from the subways. Members also maintained an ongoing presence outside the Department of Housing Preservation and Development. They “set up house” in front of the office building, chaining themselves to “beds, sofas, desks” and demanding a meeting with Commissioner Abraham Biderman. This pressure prompted the Housing Authority to earmark additional units for PWAs and the Koch and Cuomo administrations to dedicate $50 million in capital funds to housing for homeless people with AIDS.[19]

ACT UP’s Housing Committee focused attention on the lack of affordable housing for People with AIDS Credit: Manuscripts and Archives Division, The New York Public Library Digital Collections.

ACT UP’s Housing Committee focused attention on the lack of affordable housing for People with AIDS Credit: Manuscripts and Archives Division, The New York Public Library Digital Collections.

Next on the Housing Committee’s agenda was preventing this money from flowing into the Roman Catholic archdiocese’s coffers. Cardinal O’Connor had opposed New York City’s 1986 Gay Rights Bill and banned masses held by the gay Catholic organization Dignity from taking place in Catholic churches. He denounced the use of condoms to prevent the spread of HIV, even when the National Conference of Catholic Bishops approved condom use as a limited exception to the ban on contraception. At the Vatican’s first conference on AIDS, O’Connor announced, “I believe the greatest damage done to persons with AIDS is done by those health care professionals who refuse to confront the moral dimensions of sexual aberrations or drug use.” Opposing distribution of clean needles to IV drug users in an effort to curb the spread of HIV, O’Connor said repeatedly, “Good morality is good medicine.” Beyond his public statements, O’Connor worked to advance these views in public policy, sitting on the President’s Commission on AIDS and placing representatives on the committees determining the sex education curriculum for the New York City schools as well as the schools’ Citywide Advisory Council on AIDS.[8]

ACT UP opposed the public subsidies, including tax abatements, tax incentives, and subsidized loans, that went to the Roman Catholic archdiocese’s skilled nursing and other health-care facilities designed to treat PWAs. In February 1990, it protested a proposal to allow the archdiocese to operate five new nursing homes, citing the ban on discussion of condoms, clean needle provision, contraceptives, abortion counseling, and gynecological care, and, more fundamentally, the Church’s equation of homosexuality and extramarital sex with sin and its opposition to sex education in public schools. Braverman explained: “We thought it was just a great slap in the face to gay people who might be homeless, to have to spend their last days in a nursing facility that was run by the Archdiocese, where they’d be dying and judged simultaneously, and where the state and the city were providing funds to the Catholic Archdiocese for these people’s care.”[9] Furthermore, ACT UP charged that the archdiocese’s request to place a ten-year limit on the city’s requirement that the new facilities be specifically for AIDS patients meant that after ten years, the nursing homes would no longer be available to PWAs and would instead house “elderly Catholics.”[10] ACT UP members trailed Cardinal O’Connor throughout the city, disrupting his news conferences and public events including an award ceremony honoring his work with the homeless, shouting “You have blood on your hands!” until they were dragged out by police….[11]

Despite some success in provoking public scrutiny of the archdiocese’s practices, Housing Committee members realized that “if anyone was going to develop humane, non-institutional housing [for PWAs], it would have to be us.” They worked with Nick Rango of the AIDS Institute and architect Richard Jackman to develop a plan for comprehensive housing for PWAs that would allow them to remain in their apartments and receive the care they needed nearby. However, when the Housing Committee brought their proposal to the general meeting, ACT UP members opposed expanding the group’s mission, fearing that accepting government contracts and hiring paid staff to provide housing and related services to PWAs would “compromise the voice of the organization.”[12] Therefore, the Housing Committee decided to spin off and form a new organization.

In June 1990, along with his partner and fellow homeless advocate, attorney Charles King, and other members of the ACT UP Housing Committee, Keith Cyler founded Housing Works, a service agency dedicated to helping homeless people of color with HIV/AIDS and a history of mental illness or chemical dependency.[13] Since that founding, Housing Works has provided comprehensive services to more than 25,000 low-income PWAs in New York, and it currently operates more than 170 units of housing, including apartments specifically for transgendered people and for formerly incarcerated women, as well as housing facilities with health-care centers attached.[14] Although Housing Works was a separate entity, the split was not acrimonious, and it continued to collaborate with ACT UP. For example, in 1992 and 1993, Housing Works worked with ACT UP and the Coalition for the Homeless to get HIV-positive Haitian political refugees released from a holding facility in the United States’ Guantanamo Bay detention center and to provide those who came to New York with housing and medical treatment.[15] Some members continued to participate in ACT UP, and they, along with the Majority Action Committee, frequently collaborated with the ACT UP Women’s Caucus…..

Tamar W. Carroll is Assistant Professor of History and Program Director, Digital Humanities and Social Sciences, at Rochester Institute of Technology. This is the third and final excerpt from the author's new book, Mobilizing New York.


You can listen to excerpts and read the full transcripts of interviews with more than 100 former ACT UP members at the ACT UP Oral History website. A trailer for Jim Hubbard and Sarah Schulman Below's documentary film “United in Anger: A History of ACT UP” is available below.

NOTES

* [Photo] Douglas Crimp, "Before Occupy: How AIDS Activists Seized Control of the FDA in 1988," The Atlantic, Dec. 6, 2011.

[1] “Queer Nation Manifesto,” June 1990, http://www.actupny.org/documents/QueersReadThis.pdf (accessed 15 May 2013).

[2] Douglas Crimp and Adam Rolston, eds.,AIDS Demo Graphics (Seattle: Bay Press, 1990),13.

[3] Leslie Bennetts, “Man in New York,” Vanity Fair, August 1990.

[4] Peter Steinfels, “Death of a Cardinal,” NY Times, May 4, 2000.

[5] Felicia Lee, “At a Catholic Health Center, a Haven for AIDS Patients,” NY Times, April 21, 1989; Bruce Lambert, “A Nursing Home Ward is Approved for AIDS,” NY Times, August 12, 1988.

[6] Increased competition from for-profit hospital networks led to the closure of more than 600 community hospitals in the 1980s. Some Catholic congregations had already been operating more than one health care institution and were well positioned to expand their systems. According to Barbra Wall, “by 1985 there were 91 Catholic health systems out of a total of 268.” Barbara Wall, American Catholic Hospitals: A Century of Changing Markets and Missions (New Brunwick, NJ: Rutgers University Press, 2011), 16–17.

[7] While scholars have rightly focused attention on the Charitable Choice Provision of the Personal Responsibility and Work Opportunity Act of 1996 (P.L. 104–938 section 104) because it allows religious groups including churches, mosques, and synagogues to receive government funds directly (as opposed to receiving them through a nonprofit), the privatization of social welfare provision started in the early 1980s under the Reagan administration began this shift toward government funding of faith-based initiatives. Carol J. De Vita and Sarah Wilson, “Faith-Based Initiatives: Sacred Deeds and Secular Dollars,” in Emerging Issues in Philanthropy (The Urban Institute, 2001), available online at http://www.urban.org/UploadedPDF/ 310351_philanthropy_5.pdf (accessed 30 March 2010); William Saletan, Bearing Right: How Conservatives Won the Abortion War (Berkeley: University of California Press, 2003); Robert Wineburg et al., “Leveling the Playing Field: Epitomizing Devolution through Faith-Based Organizations,” Journal of Sociology and Social Welfare 35, no. 1 (March 2008): 17–42.

[8] “ACT UP/NY Capsule History,” p. 1, WHAM! Records, Tamiment Library Archives, New York University.

[9] Deborah B. Gould, Moving Politics: Emotion and ACT UP’s Fight Against AIDS (Chicago: University of Chicago Press, 2009), 334. “Invitation to ACT/UP Majority Action Committee Meeting,” July 13, 1988, Box 2, Folder 37, Robert Garcia Papers, 1988–1993, Cornell University Library, Division of Rare and Manuscript Collections. Subsequently, a Latino/Latina caucus and an Asian Pacific Islander caucus formed.

[10] Kendall Thomas, interview by Sarah Schulman, May 3, 2003, transcript of video recording, p. 13, ACT UP Oral History Project, http://www.actuporalhistory.org/.

[11] Lei Chou, interview by Sarah Schulman, May 5, 2003, transcript of video recording, p. 21, ACT UP Oral History Project.

[12] Thomas interview, 14, 20; Chou interview, 22.

[13] Robert Sullivan, “Tuberculosis in City Reported on Rise,” NY Times, March 3, 1980, p. B3; Crimp and Rolston, AIDS Demo Graphics, 122–29.

[14] Edward Gargan, “Ducking for Cover Over the Homeless,” NY Times, November 27, 1983, p. E7.

[15] Russell Baker, “A Cold Hard Net,” NY Times, December 18, 1982, p. 27.

[16] GedaliaBraverman, interview by Sarah Schulman, April 20, 2003, transcript of video recording, pp. 13–16, ACT UP Oral History Project.

[17] William Geist, “The Expanding Empire of Donald Trump,” NY Times Sunday Magazine, April 8, 1984, p. 31. Trump had sought a $20 million tax abatement and was granted $6 million. Crimp and Rolston, AIDS Demo Graphics, 122.

[18] “An ACT UP Chronology,” 1994, WHAM! Records.

[19] Braverman interview, 16; Eric Sawyer, interview by Sarah Schulman, March 10, 2004, transcript of video recording, p. 26–27, ACT UP Oral History Project;Bruce Lambert, “In Spite of Crisis, New York Lacks Basic Services for AIDS Patients,” NY Times, January 3, 1989.

[20] The Reagan administration chose Cardinal O’Connor for its AIDS panel, despite his claim that homosexuality was sinful and his opposition to promoting condom use as a way to prevent the spread of AIDS. “Reagan’s AIDS Panel: Who the Members Are,” NY Times, July 24, 1987, p. A12; “Vatican AIDS Meeting Hears O’Connor Assail Condom Use,” NY Times, November 14, 1989, p. A10; Bruce Lambert, “Nursing Homes to Increase Beds for AIDS Cases: New York State to Help Archdiocese in Plan,” NY Times, January 10, 1990, p. B3; Bruce Lambert, “A Church-State Conflict Arises Over AIDS Care,” NY Times, February 23, 1990, p. B2.

[21]“Clinic Will Become AIDS Nursing Home,” NY Times, March 19, 1989, ACT UP/NY Capsule History, p. 3; Braverman interview, p. 17.

[22] Sawyer, interview by Schulman, 27–29.

[23] Rebecca Cole interview by Sarah Schulman, June 30, 2008 , transcript of video recording, pp. 63–64, ACT UP Oral History Project.

[24] Sawyer interview by Schulman, 21, 35.

[25] Benjamin Shepard, “Building a Healing Community from ACT UP to Housing Works,” in Benjamin Shepard and Ronald Hayduk, eds., From ACT UP to the WTO: Urban Protest and Community Building in the Era of Globalization (New York: Verso, 2002, pp. 351-59),358. See also http://www.housingworks.org /aboutus/history.html.

[26] Housing Works 2012 Annual Report, http://www.housingworks.org/annual_report.html#page/4 (accessed 10 July 2013).

[27] “An ACT UP Chronology,” 8, WHAM! Records.