Black Lesbian Feminist Intellectuals and the Struggle Against HIV/AIDS

Darius Bost. Souls. Volume 21, Issue 2-3. 2019.

On June 6, 2017, the New York Times Magazine published a feature story, “America’s Hidden H.I.V. Epidemic,” written by black lesbian journalist and professor and chair of the journalism program at the City College of New York, Linda Villarosa. The magazine article was picked up by various news outlets and circulated widely across the internet. The article served as a corrective to whitewashed histories of the epidemic and linked these histories to the disproportionate impact of the epidemic on contemporary black and brown communities, especially in the U.S. South: “As the widely accepted media narrative went, the disease was attacking seemingly healthy gay, white men, mainly in New York and San Francisco. But in reality, in the mid-80s, the incidence rate of HIV was three times higher for Black and Brown people than for whites. And 25 percent of new cases were in Blacks, even though we made up only 12 percent of the population. This counter narrative, also known as the truth, didn’t fit neatly into the image of AIDS. So Black folks were made invisible in the epidemic; we were erased—which cemented another host of problems that have followed us for three decades.” Though Villarosa identified an overall decline in HIV infection rates in black communities and significant spending by the CDC in recent years, she also highlighted ongoing structural inequalities as the cause of the disproportionate impact in black Southern communities: “The disease doesn’t take hold for no reason. It strikes those less equipped to fight it off. Limited access to health care, joblessness, poverty, housing insecurity, incarceration, homophobia, and racism—have fueled the epidemic across Black communities. To make matters worse, a number of southern states have refused to expand Medicaid under the Affordable Care Act, limiting access to prevention, care and treatment options for everyone, most pointedly people living with HIV.” Villarosa’s article brought attention to the ongoing effects of the AIDS epidemic in the South, and to the structural inequalities that keep it “hidden.” However, in my interview with her, Villarosa noted that those who remarked on “America’s Hidden HIV Epidemic” did not know that she had been reporting on the AIDS epidemic since 1986. She also stated that the 2017 article marked a shift in her designation as an expert in this field. Despite her experience and training, Villarosa experienced discrimination at the New York Times. In a 2000 article titled “A Conversation with Phill Wilson: Speaking Out Makes AIDS an Issue of Color,” her editors did not see Wilson, then the executive director of the African American AIDS Policy and Training Institute at the University of Southern California, as a legitimate source of knowledge on the subject of AIDS: “They did not see him as a credible source of knowledge. His race and sexuality made him not credible. And me.”

This essay explores the work of three noted black lesbian feminist intellectuals—Linda Villarosa, historian of science Evelynn Hammonds, and political scientist Cathy Cohen—who have traversed and unsettled the boundaries between academic scholarship, public engagement, and community activism to produce and transform knowledge about HIV/AIDS. In June 1987, Villarosa co-wrote the first article on AIDS published in an ethnic magazine, “Nobody’s Safe” for Essence magazine, while Hammonds published her important article, “Race, Sex, AIDS: The Construction of the ‘Other’” in Radical America magazine in October 1987. In the same year that Randy Shilts’ And The Band Played On: Politics, People, and the AIDS Epidemic was published and received as “the prime text representing ‘the gay history’ of AIDS that scholars and journalists utilized to write about the evolution” of the epidemic, Villarosa and Hammonds published articles that sought to reframe the epidemic through a black lesbian feminist lens that viewed racism, capitalism, sexism, and heteronormativity as interlocking structures of oppression. Though people of color had been affected by AIDS since the epidemic’s appearance, scientific and media discourses of AIDS persistently represented its victims as white gay men. The dominant focus on white gay men and their “unsafe” sexual practices occluded a structural analysis of epidemic, of how conditions of socioeconomic inequality would deem those who are multiply marginalized as disproportionately vulnerable. However, Hammonds, Villarosa, and later Cohen advanced an “integrated analysis” of AIDS that did not see scientific approaches as separate from a structural analysis, nor privilege academic training over community-based knowledge.

Drawing from close textual analysis of their published works and interviews, I situate the work of these scholars within a genealogy of black lesbian feminist knowledge production. My analysis draws from and builds on the work of black feminist historians who have begun to investigate the intellectual history of black women. In Towards An Intellectual History of Black Women (2015), black feminist historians foreground “ideas as necessarily produced in dialogue with lived experience and always inflected by the social facts of race, class, and gender.” Focusing on “out” black lesbian intellectuals allows for the inclusion of sexuality in general, and lesbian sexuality in particular as also central to that dialogue. Building on the work of Hammonds, I theorize black lesbian feminism as an epistemological location from which to disrupt the “structured silence” that prohibited a complex analysis of black female sexuality in general, and scholarly and activist responses to black women’s experiences during the early era of AIDS in particular. I then demonstrate how Villarosa’s, Hammonds’, and Cohen’s involvement in intersectional activism (black feminist, student, women’s health, and gay and lesbian) shaped their intellectual approaches to the AIDS epidemic, and their efforts to reframe AIDS as a political issue.

Through close textual analysis of Villarosa’s 1987 article in Essence magazine and Hammonds’ 1987 essay in Radical America, I show how black lesbian feminists drew attention to the racial, gender, and sexual biases circumscribing the production and dissemination of scientific knowledge, and how their public intellectual work addressed these biases in order to inform black and Latinx communities about their risk for the disease in its early era. I then turn to an analysis of the development, publication, and reception of Cohen’s seminal study, The Boundaries of Blackness: AIDS and the Breakdown of Black Politics over the course of the 1990s. Examining Cohen’s decision to focus on black AIDS mobilization within the field of political science, I show how black feminist intellectual critiques of AIDS unsettled and transformed disciplinary knowledge production. Interrogating the book’s turn away from dominant institutions of scientific knowledge production, like the Centers for Disease Control and Prevention (CDC), and towards knowledge produced within black communities, I demonstrate how Cohen’s work challenged earlier academic cultural and social theories that took the CDC—and lesbian and gay activist contestations of the knowledge it produced—as paradigmatic in ways that did not account for black people’s marginal access to and invisibility within these institutions.

Black Lesbian Feminists in the Academy

Evelynn Hammonds earned a bachelor’s degree in electrical engineering at the Georgia Institute of Technology and a bachelor’s degree in physics at Spelman College in 1976 before receiving her master’s degree in physics from the Massachusetts Institute of Technology in 1980. She then worked as a software engineer for five years before entering the doctoral program in the history of science at Harvard University in 1985. There she studied the history of epidemiology and public health, focusing in particular on the origins and impact of disease in U.S. cities from the colonial period to the present, and the public health and medical communities’ responses to these epidemics. In the last week of one of her graduate courses, the instructor asked students to write about any aspect of the AIDS epidemic. Shocked and concerned by the rising rates of HIV infection among black women, and that no one else was writing about it, she focused her assignment on representations of black women in AIDS discourse. While the students in her class felt that she was engaging a set of questions that were unimportant, as a black woman, black feminist, and historian focused on race and public health, she saw these questions as significant not only to her scholarly work but also to her broader communities. Hammonds felt that the CDC was making it hard to understand what was happening to black women and other women of color, and that the CDC, for the most part, seemed disinterested. This led her to engage in activist work in Boston. She recalled sitting in meetings with folks at Harvard Medical School and listening to the “unbelievable string of negative characterizations shaping AIDS policy.” She remembered that black women were represented as deviant: they were put into the category of “drug user” and “prostitute” but excluded from the category “women.” She remembered that the people making decisions about AIDS were predominantly white, and that their decisions did not speak to the needs of black people. Often the only person writing on African American women in publications about AIDS, she envisioned her academic work as an intervention into how the epidemic was being framed.

Hammonds’ critique of the framing of the epidemic at the expense of black women is best exemplified in “Missing Persons,” published in 1990 in Radical America, a Marxist-inflected political magazine that formed out of university-based, New Left movements of the 1960s: “The way in which AIDS was first conceptualized as a disease of “gay men” then a disease of various “risk groups,” e.g., intravenous drug users, foreclosed the recognition of women as potentially a significant portion of the AIDS caseload.” Rather than perpetuate the scientific community’s focus on the epidemiological origins of the disease, Hammonds focused her analysis on the relation between the invisibility and objectification of African American women in the epidemic and “the historical treatment of African American women with respect to sexually transmitted disease. “She demonstrated how black women appeared in dominant AIDS discourses only as vectors of disease (to their children and men) and not as subjects in and of themselves. Moreover, she noted how representations of poor black women as “powerless” victims of the disease did little to address their lived experiences—personal and economic difficulties they face, including emotional trauma, stigma, survival strategies, and how it affects their daily lives. She connected these contemporary representations of black women to their historical representation in medical studies. Since the professional background of CDC officials most responsible for formulating AIDS policy was in venereal disease control, she established linkages between the medical establishment’s historical failure to deal with the prevalence of sexually transmitted diseases in African American women and their marginalization in medical and public health discourses of AIDS: “As it is with AIDS today, commentary on the impact of syphilis as experienced by African American women is absent from the literature.” Given black women’s marginality in AIDS discourse, Hammonds called for “a viable black feminist movement” to “intervene in public and scientific debates about AIDS” in order to make plain “the impact that medical and public health policy will have on African American women.”

But this call was difficult to answer given the precarious position of black women in the academy in the 80 s and 1990s. In her 1997 article, “Toward A Genealogy of Black Female Sexuality: The Problematic of Silence,” Hammonds linked the historical legacy of deviance that has marked black female sexuality since the era of European colonial contact to representations of black women’s sexuality in the early era of AIDS. She described how after the formal end of slavery, white middle class attitudes shifted in relation to Victorian sexual ideology and state practices of repression, defining black women as the immoral, pathological, impure embodiment of ‘sex’ that white womanhood defined itself against. She pointed out how black women reformers in the late 19th and 20th centuries deployed a politics of silence around sexuality—what Darlene Clark Hine calls a “culture of dissemblance”—as a counter to dominant and increasingly hegemonic constructions of black female sexuality, a strategy she continued to see in late twentieth century academic black feminism: “Reclaiming the body as well as subjectivity is a process that black feminists in the academy must go through themselves while they are doing the work of producing theory. Black feminist theorists are themselves engaged in a project of fighting to reclaim the body—the maimed, immoral, black female body—which can be and is still being used by others to discredit them as producers of knowledge and as speaking subjects.” She argued that the hypervisibility of black women academics and the contemporary fascination with “the commodification of otherness” placed black women academics in a precarious position; they were caught within a double-bind of visibility that sexualized them and designated them as inauthentic knowledge producers in the academy, thereby forcing them to avoid theorizing about sexuality—a form of “structured silence” that “can be used to control the intellectual issues that black women can and cannot speak about.”

Due to this structured silence the experiences of black women in the AIDS epidemic went undertheorized. Hammonds noted, “the controlling images of black women with AIDS has foregrounded stereotypes of these women that have prevented them from being embraced by the public as people in need of support and care…Black women with AIDS are largely poor and working-class; many are single mothers; they are constantly represented with regard to their drug use and abuse and uncontrolled sexuality.” These representations revealed, she argued, the disciplinary practices of the state against black women, and how the presence of disease was being used to justify the denial of welfare benefits, treatment, and some of the basic rights of citizenship, such as privacy for black women and their children. While gay men were using the ideological space framed by the epidemic to contest notions of homosexuality as ‘abnormal”—to preserve the right to live out their desires—black women were rendered silent. She suggested that without a black feminist analysis or a strong black movement, like the one Ida B. Wells led against lynching at the turn of the 20th century, the relationship between black women in the AIDS epidemic and state practices would not be articulated: “black feminist critics must work to find ways to contest the historical construction of black female sexualities by illuminating how the dominant view was established and maintained and how it can be disrupted,” claiming that this work might save some black women’s lives.

Building on the research she had conducted on AIDS since the mid-1980s, Hammonds’ essay developed a complex analysis of black female sexuality that had been focused on heterosexuality: “I want to suggest here that if we accept the existence of the ‘politics of silence’ as an historical legacy shared by all black women, then certain expressions of black female sexuality will be rendered as dangerous, for individuals and for the collectivity. It follows then that the culture of dissemblance makes it acceptable for some heterosexual black women to cast black lesbians as proverbial traitors to the race. And this, in turn, explains why black lesbians—whose deviant sexuality is framed within an already existing deviant sexuality—have been wary of embracing the status of ‘traitor,’ and the potential loss of community such an embrace engenders.” She further claimed that although some black lesbians have hidden the truth of their lives, others like Audre Lorde have claimed both black and lesbian difference. Lorde’s writing, with its focus on the erotic, on passion and desire, suggested that “black lesbian sexualities can be read as one expression of the reclamation of the despised black female body.” She believed that a focus on black lesbian sexuality offered an alternative to discourses of silence: “Black lesbian sexualities are not simply identities. Rather they represent discursive and material terrains where there exists the possibility for the active production of speech, desire, and agency. Black lesbians theorizing sexuality is a site that disrupts silence and imagines a positive affirming sexuality.”

By linking black lesbian theorizing to the disruption of the structured silence in academic black feminist theory, Hammonds’ research modeled the way for black feminist critics to illuminate “how the dominant view” of black women with AIDS had been “maintained and how it can be disrupted.” By theorizing black lesbian sexuality not solely as an identity, but also as a “discursive and material terrain where there exists the possibility for the active production of speech, desire, and agency,” she reframed black lesbianism as an epistemological location and disruptive force that could transform academic knowledge formations and institutions that “control the intellectual issues black women can and cannot speak about.” Black lesbian feminist theorists of AIDS took on the status of “traitor” in order to reclaim the “despised” bodies of AIDS-infected black women as subjects of black feminism and as a critical sites of knowledge production regarding black women’s relationships to the state and broader discourses that either perpetuated or resisted representations of black female sexual deviance. That Hammonds conjured Wells’ campaigns against lynching suggests that her intellectual work was also political work that aimed to correct the “red record” of black women’s struggles against AIDS at all costs. She viewed the work of black feminist knowledge production as having the potential to save black women’s lives. One could read Hammonds’ prolific work on AIDS in magazines and scholarly venues in the late 80 s and early 90 s as a campaign to break the silence surrounding its disproportionate impact on black women that had been guised—much as it had during the era of lynching—by dominant images of deviant black sexuality. Indeed, throughout the 1980s and 90 s black lesbian feminist intellectuals launched activist-intellectual campaigns against AIDS that, much like gay anti-AIDS activists, used the ideological space created by AIDS to contest notions of black (female/lesbian) sexuality as ‘abnormal,’ and to provide a space for black women across a range of class locations and sexual practices to live out their desires.

Genealogies of Black Lesbian Feminist Activism

Broader black, feminist, and lesbian social movements, as well as intellectual and artistic traditions, informed black lesbian feminist intellectual work on AIDS. In her history of the Black Panther Party’s engagement with health politics, Alondra Nelson extends the long history of black health activism into the 1970s. She describes the Party’s health cadre as mostly women, which reflected the fact that the Party was made up of 60 percent women. This work is significant given the dismantling of the welfare state under the Nixon Administration. In his study of health epidemics impacting urban blacks since 1900, historian David McBride states that in the 1970s, black community centers funded by the Office of Economy Opportunity and the Economic Opportunity Act were dismantled. McBride also notes that these community health centers often acted without input from poor communities and neglected the shifting social structure of black communities and neighborhoods. Black feminist activists extended health activism into the late 1970s and 1980s, with greater input from poor communities and greater attention to shifting social structures of black communities and neighborhoods. Ula Taylor identifies the formation of black women’s health networks as a crucial feature of “third wave” black feminism, noting that “at last, the physical and mental well-being of black women takes precedence.” Taylor documents black women’s creation of community-based self-help programs, conferences, and community centers to combat the health crises affecting black women, including, but not limited to: breast cancer, domestic violence, rape and sexual abuse, drug use, mental health, weight loss, and AIDS. Black women’s health movements also coincided with the emergence of “third wave” black feminist intellectual formations in the late twentieth century, with several black (lesbian) feminist artists producing work on black women’s health in general and HIV/AIDS in particular. Lesbians were involved in AIDS activism since its appearance in the U.S. Jennifer Brier connects lesbian involvement in AIDS activism to knowledge derived from previous social movements since the postwar era, including feminism, women’s health movements, and gay and lesbian liberation. In her study of emotion among members of activist group AIDS Coalition to Unleash Power (ACT UP), sociologist Deborah Gould describes the various routes of and motivations for their involvement. Some lesbians became involved with AIDS activism because of their shared identity as sexual minorities who were under assault by the media and right-wing politicians. Lesbian sex radicals saw the conservative public discourses emerging in response to the AIDS epidemic as an assault on sexual freedom more broadly. Others saw AIDS as a site at which multiple modes of oppression intersected: “Lesbians who had antiracist and feminist politics also got involved because they saw through the gendering of the epidemic and very early in the crisis recognized that women, particularly poor women of color, were going to be affected in ways that were inflected by race and class.” I include Villarosa, Hammonds, and Cohen among the latter.

In my interview with her, Hammonds described her involvement with feminist movements on the East Coast, especially her political involvement with the Combahee River Collective in the Boston area, as central to her intellectual work on AIDS. Kimberly Springer argues that the East Coast branches of Third World Women’s Alliance and Combahee River Collective “laid the foundations for challenging heterosexism and including lesbianism as an integral part of the black feminist movement.” Springer also notes that after the decline of much of black feminist organizations due to the backlashes against gains made during Civil Rights and women’s movements after the rise the Reagan presidency, black feminism became institutionalized in many sites, including the academy. Jennifer Brier identifies Boston as a city with a long history of women’s and gay and lesbian health activism, embodied by the Boston Women’s Health Collective, author of Our Bodies, Ourselves, and by the fact that gay and lesbian health activists took over a community health center called the Fenway Clinic. Brier also situates Hammonds’ early work among a contingent of radical social historians who served on the editorial board of Radical America, where Hammonds published several of her earlier pieces on AIDS. The fact that Hammonds identified herself as a “black lesbian feminist, scientist, and activist” and a “graduate student in the history of science” in those early publications demonstrates how she brought a black lesbian feminist analysis and activist history to bear on her research on AIDS.

Linda Villarosa studied journalism as an undergraduate at the University of Colorado-Boulder. After she graduated in 1981, she moved to New York City. She began her career in health journalism at Essence magazine in the mid-1980s as a freelance writer. She eventually became its health editor in 1988, where she wrote a number of articles on HIV. While still working at Essence, Harvard University selected her as a communications fellow at its school of public health in 1992. In an interview with her, she credited her time at Harvard as part of her “training ground” as a health journalist, in addition to her “on-the-job training writing about the HIV epidemic since the beginning.” She left Essence magazine in the late 1990s to be the health editor of the New York Times, where she wrote two cover stories about HIV in the black community. She has received awards for her health journalism from the American Medical Writers’ Association, the Arthur Ashe Institute, the National Lesbian and Gay Journalists’ Association, and the Callen-Lorde Community Health Center. Based on her reporting of AIDS in Africa, the Kaiser Foundation hired her to train journalists from around the world how to cover the international HIV/AIDS pandemic and international AIDS conferences.

Villarosa was not “out” at Essence magazine while she served as its health editor, fearing how the editor and her colleagues would respond to her lesbian identity. This changed in May 1991 when the magazine published a cover story titled “Coming Out,” featuring Villarosa and her mother, which catapulted Villarosa into the public eye as a black lesbian, doing speaking tours and a follow-up feature story called “Readers Respond to Coming Out” in the October 1991 issue of Essence. Though the article received a mostly positive reception from the magazine’s readers, in “Revelations,” a meditation on religion and black lesbian identity, Villarosa recounted the homophobic vitriol she experienced while on the speaking tour and in several letters to Essence. She recalled how deeply hurt she was by these expressions of homophobia, especially those coming from other black women. However, Villarosa was sustained by her lesbian community in New York City, some of whom were involved in ACT UP-New York and Women’s Health Action Network (WHAM!), an activist group who used direct action to counter the state’s attacks on women’s reproductive freedom. In an interview, Villarosa mentioned that “many of these women did not get credit for their work.” Though Villarosa did not get politically involved with these groups so as to maintain her objectivity as a journalist, the loss of gay male friends and the whitewashing of AIDS in the media fueled her intellectual work.

Cathy Cohen “came up and out” as an undergraduate at Miami University in Ohio (class of 1983), but described her connections to friends and comrades as a graduate student at the University of Michigan in the late 1980s as critical to her black lesbian feminist consciousness. This is where she first met folks like Barbara Ransby, Tracye Matthews, Kimberly K. Smith, Regina Freer, and Premilla Nadasen, “a group of primarily black women who did work on that campus to help move issues around race and racism,” helping to create institutions like the Ella Baker-Nelson Mandela Center in 1988. Cohen became involved in anti-racist student movements at the University of Michigan in the late 1980s. She entered the university on the tail end of student anti-apartheid movements that prompted the university to divest from corporations linked to the South African apartheid state. She became politically involved in United Coalition Against Racism (UCAR), an intersectional and multi-racial organization led by Barbara Ransby, that aimed to unify the various anti-racist student groups that had emerged in 1987 to address the institutional racism and rise of racist incidents on campus. However, UCAR experienced hostility as a black feminist-led organization with a multi-issue platform that included racism, sexism, classism, militarism, and heterosexism. An activist throughout UCAR’s post-1987 mobilization, Kimberly Smith reflected on the hostility towards multi-issue mobilization which was led by women of color: “To say that we were trying to fight sexism, as well as racism and homophobia, Oh no! How dare we mention something like that. And, “why are we talking about issues of South Africa?” We were criticized for being multi-issue. I think that’s very important to understand. (Now) what is needed, not one issue oriented, but multi-issue-oriented organizations.” Cohen’s student activism at the University of Michigan alerted her to the hostile responses to an intersectional, multi-issue approach, as well as to the broad platform necessary for addressing her own multiple marginalization.

Cohen continued this multi-issue organizing and analysis when she moved from Ann Arbor to the New York City to complete her dissertation research on AIDS in black communities in 1991. While in New York she was a part of a group that formed and eventually became a co-chair of the Audre Lorde Project, which was “first brought together by Advocates for Gay Men of Color (a multi-racial network of gay men of color HIV policy advocates) in 1994 out of “the expressed need for innovative and unified community strategies to address the multiple issues impacting Lesbian, Gay, Bisexual, Two-Spirit, Trans and Gender Non-Conforming People of Color.” She also served on the planning committee for the historic “Black Nations/Queer Nations” conference held in 1995. The conference brought together an array of dynamic scholars, activists and cultural workers including Essex Hemphill, Kobena Mercer, Barbara Smith, Urvashi Vaid and Jacqui Alexander “to interrogate the economic, political and social situations of diasporic lesbians, gay men, bisexual and transgendered peoples.” Cohen also served on the board of Kitchen Table: Women of Color Press, the women of color feminist press described as “the only publisher in North America committed to publishing and distributing the writing of Third World women of all racial/cultural heritages, sexualities, and class,” that was “both cultural and political, connected to the struggles for freedom of all of our peoples.”

In my interview with her, Cohen described her research on AIDS as influenced by her involvement with a cohort of organic intellectuals in New York who were thinking about AIDS through blackness. She attended meetings of ACT UP-New York and Gay Men of African Descent (GMAD), a local black gay organization founded in 1986 and dedicated to the empowerment of black gay men through the creation of opportunities for fellowship and support. The group’s founder, the Reverend Charles Angel, died of AIDS in 1987. She also cofounded Black AIDS Mobilization (BAM!), a New York City-based, black lesbian and gay organization committed to ending AIDS in black communities. These community organizations and spaces were not free of conflict around issues of race, class, gender, and sexuality. In “Punks, Bulldaggers, and Welfare Queens,” Cohen discussed moments when other women of color, more economically vulnerable than her, “expressed superiority and some feelings of disgust when they realized that the nice young professor (me) was ‘that way.’” These community spaces most often provided alternatives to dominant knowledge systems “which constructed gay and lesbian lifestyles, drug use and premarital sex in general as wrong and immoral.” They generated community-based knowledges that challenged state-based epidemiological approaches to AIDS which marked black people’s susceptibility to disease as a result of cultural deviance or genetic difference.

Why Are Women Getting a “Gay” Disease?

On June 5, 1981, Dr. Michael Gottlieb and his colleagues at the University of California, Los Angeles, published a notice in Centers for Disease Control and Prevention Morbidity and Mortality Weekly Report about five cases of a rare cancer, pneumocystis carinii pneumonia, in five previously healthy, white gay men. The report did not mention that there were two additional men, one of Haitian descent, and the other an African American gay man. However, the report prompted doctors in New York, San Francisco, and major urban areas around the country to report similar cases, gathering the constellation of symptoms witnessed in gay men under the categories “gay cancer’ and “Gay Related Immune Disorder.” Of the 355 cases of Kaposi sarcoma (KS) and serious opportunistic infections reported between June 1981 and May 1982, thirteen were heterosexual women, who were more likely than homosexual patients to be black or Hispanic. In July 1982, the CDC reported more than 86 cases of AIDS among African Americans, 20 percent of the cases reported for that year. In November 1982, the CDC published a follow-up report that expanded the populations “with apparently increased risks of AIDS” to include gay men, hemophiliacs, Haitian immigrants, and intravenous drug users. Race and heterosexual sex were deemed risk factors in January 1983 when a CDC report noted that sex partners of injection drug users and diagnosed AIDS patients may also be at risk. The report included one black and one Latina woman, both of whom had been diagnosed with AIDS and had no other risk factors other than their sex partners. In that same year the CDC detailed 16 cases of AIDS found in male prisoners in New York and New Jersey, four of whom were black, and two of whom were Latino. Most of the men reported that they were heterosexual and had used IV drugs. In June 1984, the CDC found that 50% of all pediatric cases of AIDS were among African Americans.

In September 1985, President Ronald Reagan first mentioned AIDS in a press conference, ensuring his constituents—who feared that school-aged children and healthcare workers would be at risk—that AIDS research was a top priority for his administration. Because the Reagan administration’s right-wing governance pathologized black people in general, and black women in particular in order to justify the elimination of welfare statism, and many black leaders and community members distanced themselves from the stigma attached to AIDS, multiply marginalized communities participated in grassroots efforts to combat AIDS in their communities. Beginning in 1985, groups like Blacks Educating Blacks About Sexual Health Issues (BEBASHI) in Philadelphia, Black and White Men Together (BMWT) in San Francisco, Us Helping Us, Inc, in Washington, D.C., Sisterlove, Inc. in Atlanta, South Carolina AIDS Education Network (SCAEN) in Columbia, South Carolina, and the Minority AIDS Project (MAP) in Los Angeles created education programs, safer sex campaigns, and structures of community care in the absence of state protection and community support. The emergence of these local organizations catalyzed national efforts to combat AIDS in black communities, represented by the National Coalition of Black Lesbian and Gays-sponsored National Conference on AIDS in Black Communities held in July 1986 in Washington, D.C.

It is in this context of increased attention to the vulnerabilities of AIDS among the most marginalized in black communities, and growing local grassroots and national responses to AIDS in black communities, that Linda Villarosa began reporting on the epidemic. Villarosa drew on her connections to various activist communities, community-based knowledge, and her training in journalism and public health to develop an innovative approach to health journalism. In an interview Villarosa described her work as “engaged journalism,” which emphasizes “deep reporting, historical inequality and thoughtful narrative storytelling.” In 1986, Villarosa received a call from Essence magazine editor-in-chief, Susan Taylor, asking her to write a feature story about a mysterious new virus that was killing black women. Taylor had heard about the virus from professor Joan Roberts at Fordham University, and recommended that Villarosa call her to sort through the complicated science of the disease. Villarosa also talked to the Gay Men’s Health Crisis (GMHC), a nonprofit, volunteer-supported and community-based AIDS service organization founded in 1982 in New York City after the initial CDC reports found a “rare cancer” affecting previously healthy white gay men. Villarosa asked a “government epidemiologist” at GMHC why women were getting a “gay” disease, and if AIDS was a “lesbian” disease. The epidemiologist only reiterated earlier reports that included homosexuals, Haitians, hemophiliacs, and heroin users as the primary risk groups. GMHC sent Villarosa to the Bronx to interview a black woman with a six-month old daughter who had contracted the disease from her boyfriend, who was a heroin addict. Villarosa noticed white lesions in the baby’s mouth, and after the interview described these lesions to Roberts. Roberts explained that it was a fungal infection called thrush that was associated with AIDS, which deeply impacted Villarosa: “At that moment, I grew quiet as I truly grasped that this virus was slowly eating away at both this woman and her daughter.”  By the time the article based on her findings was published in Essence magazine in June 1987, the mother and daughter Villarosa interviewed were dead.

Villarosa and Roberts’ article, “Nobody’s Safe,” is considered one of the first articles on AIDS published in an ethnic magazine. Fashion model Grace Vyent graced the cover of the issue in which the article appeared, dressed conservatively in a white sweater set, and described as “healthy, fit, and ready for summer.” In the lower right-hand corner, superimposed on Vyent’s sleeve is the byline, “AIDS—You Can Protect Yourself.” The two-and-a-half-page feature story includes the article title in bold, covering half of the page. Taking up the rest of the page is the subheading in all caps, “AIDS: UNTIL RECENTLY, MOST PEOPLE THOUGHT OF IT AS A ‘GAY PLAGUE,’ A TERRIFYING DISEASE THAT WAS EXACTING A HEAVY DEATH TOLL MAINLY AMONG HOMOSEXUAL MEN. BUT THAT’S NOT TRUE ANYMORE. EVERYONE IS AT RISK. THE TRUTH IS THAT THE MAJORITY—52 PERCENT—OF WOMEN CONTRACTING AIDS ARE BLACK. AT PRESENT NO CURE EXISTS; THOSE WITH AIDS WILL DIE OF IT.” Villarosa and Roberts must have culled these statistics from the 1986 CDC MMWR on “AIDS Among Blacks and Hispanics” which found that African Americans accounted for 51% of all AIDS cases among women and had an overall AIDS rate three times higher than whites. Black feminist scholars such as Hammonds, Cohen, and Ayana Weekley have critiqued this article and other early black media coverage of AIDS for the ways it presented black women as innocent and respectable victims of AIDS, and figured AIDS as infiltrating heterosexual and middle-class black communities, thereby pathologizing and marginalizing IV drug users and gay and bisexual men. While these claims hold true, less attention has been paid to the work these articles did to translate scientific knowledge to the African American public. Weekley writes, “For the premier article in Essence, the overall story is very informative, providing facts, citing recent CDC studies, and attempts to educate the female readers.” The collaborative relationship between Roberts and Villarosa helped to distill highly specialized knowledge to African American women, who, if encountering the unfolding epidemic in the mainstream media, may have understood AIDS as a “gay disease.” This does not preclude the fact that many African Americans distanced themselves from the suffering of IV drug users, poor women and their children, and same-sex desiring men who were dying of AIDS.

The importance of black lesbian feminist intellectuals’ translation of scientific knowledge for the public is also evident in the work of Evelynn Hammonds. In her October 1987 article, “Race, Sex, AIDS: The Construction of the ‘Other’” in the “Facing AIDS” special issue of Radical America, Hammonds drew on her knowledge of the history of science and community-based knowledge to reconstruct AIDS as a political issue: “In this culture, how we think about disease determines who lives and who dies. The history of black people in this country is riddled with episodes displaying how concepts of sickness, disease, health, behavior and sexuality, and race have been entwined in the definition of normalcy and deviance. The power to define disease and normality makes AIDS a political issue.” She tracked white doctors’ constructions of disease among blacks in the nineteenth century, and how these discourses of disease were used to construct narratives of black people as inferior and immoral. She focused on how STIs like syphilis had been constructed as a disease of the “other,” and how the black community’s response to this was sexual conservatism. She then examined how AIDS had been discussed within black cultural discourse, and attributed primarily to drug use and homosexuality and bisexuality. Moreover, she examined the silence in the mainstream press about the rise of AIDS in black and Latinx communities, and the racial and sexual pathologization that pervaded representations of these groups when they were mentioned. Her concern was that, similar to nineteenth century discourses, scientific communities still viewed blacks as “inherently different or behav[ing] differently.” She concluded the essay by noting how, “there is no recognition of how medical and media construction of AIDS as a ‘gay disease’ or a disease of Haitians has affected the black and Hispanic communities.” Hammonds’ essay demonstrated how the production and dissemination of scientific knowledge, historically ridden with racial, gender, and sexual biases, impacted how black and Latinx communities came to understand the epidemic in the early years. Moreover, her essay acted as a corrective to this misinformation, and as a critique of the conservatism and biases present within communities of color.

Despite Hammonds’ prolific research on HIV/AIDS from the late 1980s to the mid-1990s, her work has been marginalized in historical research on HIV/AIDS. In my interview with her, Hammonds lamented not being asked to contribute to the early U.S. AIDS history anthology, AIDS: The Burdens of History (1988); while some attention was given to categories of race, gender, and sexuality in three of the chapters of this volume, Hammonds’ contribution might have offered an intersectional analysis that did not see these axes of power as discrete categories of vulnerability. Conversely, within the interdisciplinary fields of feminist and queer studies, Hammonds’ article “Black (W)holes and the Geometry of Black Female Sexuality” enjoys canonical status for its call for black feminists to theorize black female sexuality, and for her use of physics as a method for theorizing against the “problematic of silence” conscribing black female sexualities in black and white feminist discourse. Though Hammonds cited the influence of her prolific research on black women and AIDS as central to the development of this theory, black women’s experiences of AIDS still remain marginal in black feminist and queer theories, and studies of black female sexuality. This process of untethering black lesbian feminist theory from its historical and political context was also evident in the reception of Cathy Cohen’s work. In an interview Cohen discussed how her widely cited book The Boundaries of Blackness has been taken up for her theory of secondary marginalization, but that the theory has been largely divorced from the context of the black AIDS epidemic. The next section of this essay attempts to resituate Cohen’s research within the historical and political context of its production.

The Deadly Consequences of ‘Secondary Marginalization’

In the preface to The Boundaries of Blackness, Cathy Cohen explained the impetus for her project, “This project began as an effort to do something I felt was lacking in many of the seminars that constituted my graduate education: work on issues that were directly tied to the daily survival of individuals and their communities.” In excess of her traditional training, she “felt a need to turn to work where the link between political science and people’s lives was much more direct and meaningful.” Addressing social scientists who might be confused as to why she decided to write a book about black AIDS mobilization, she suggested that scholars reflect on “the homophobia, racism, and sexism that condition individuals to look upon research focusing on the experiences of oppressed communities as nonscientific.” Cohen illustrated how racial, gender, and sexual politics are often excised or obscured in the construction and disciplining of scientific knowledge. She refused to be disciplined by the mandates of objectivity and distance that legitimate social science research, however, and turns her gaze back toward social scientists who “often find it more convenient to explore questions that are distant and less charged with direct implications regarding life, death, and quality of life.”

Cohen entered graduate school in political science at the University of Michigan in 1986. Under the mentorship of political scientists Michael Dawson and Steven J. Rosenstone, she focused her dissertation on AIDS ten years into the epidemic because she was surprised by the lack of knowledge about AIDS in the black community, and disheartened by the moral conservatism that caused community leaders and members to distance themselves from those who were most vulnerable to AIDS—”junkies, fagots, punks and prostitutes”—thereby marking them as expendable bodies. Her own marginalization as a working-class black lesbian and intimate relationships with black gay men who were sick and dying also informed her research. She moved to New York City in 1991 to conduct her fieldwork. As one of the epicenters of the epidemic, and a visible site of AIDS mobilization, New York was a ripe site for investigation. In 1990, over 2 million black people lived in New York City, comprising nearly 30% percent of the city’s population. At that same time, Blacks were overrepresented in New York City’s AIDS cases, primarily due to IV drug use and heterosexual transmission. The New York State Department of Health’s approval of a small-scale needle exchange program in 1988, and its rejection by black congressional leaders, city officials, church leaders, black health service providers, and the broader black community prompted Cohen to question the “fundamental relationships between power, status, and action within African-American communities” Given the devastating impact of AIDS in black communities, Cohen wanted to understand the barriers to and absence of mobilization in black communities.

It was in New York that she developed relationships with black community activists and intellectuals, like Linda Villarosa (who she first met when she interviewed her for her book), who were thinking about the relationship between blackness and AIDS. Her black lesbian feminist politics urged her to mobilize the knowledge she gained toward transforming institutions and how we attach to them, including the academy. Cohen took on this challenge by redirecting her attention away from the social construction and power’s production of scientific facts that had been the locus of earlier scholarly works on AIDS, and toward the fact of blackness and its social construction and conscription by power. In an early discussion of why black communities have been reluctant to “own” the AIDS epidemic, Yale Law professor and member of the National Commission on AIDS under the Bush administration Harlon Dalton argued, “the black community’s impulse to distance itself from the epidemic is less a response to AIDS, the medical phenomenon, than a reaction to the myriad social issues that surround the disease.” Though inventive in their attention to how social movements challenge scientific and medical knowledge production, scholars such as Cindy Patton, Paula Triechler, and Steven Epstein took dominant institutions of knowledge production and white gay and lesbian activist contestations of these institutions as paradigmatic to this challenge. Because these pathbreaking studies of the cultural and social constructions of scientific knowledge directed their attention toward dominant institutions, they did not allow for a thorough examination of the “social issues that surround” the (lack of) response to HIV/AIDS in black communities. Cohen showed how dominant institutions like the CDC framed AIDS as a disease of white gay men to the exclusion of drug users and women, many of whom were people of color. She argued that the structure and procedures of the CDC served to bias the system, “making some groups invisible to this institution.” Black people’s invisibility within and marginal access to dominant institutions urged Cohen to examine not only the “obvious acts of dominant actors and institutions which inhibited mobilization, but also the indigenous norms, attitudes, and practices that influenced the participation and mobilization of those concerned about AIDS in African-American communities.” She drew on black (lesbian) feminist knowledge production to challenge the “politics of respectability” and “homophobia” that structured black cultural knowledge production and positioned those most vulnerable to the epidemic as not-black and thus expendable.

Cohen also aimed to transform the university and its structures of disciplinarity. After completing her dissertation, she accepted a tenure-track faculty position at Yale University, and set out to revise the dissertation into a book. In an interview she described the book as a ‘cry for help,’ for “recognition of the humanity of the dying,” and a critique of existing black political structures that were not working for LGBT and poor people. She situated AIDS in the political context of the Reagan administration’s antiblackness and urban crisis, while not excusing black elites who had neglected the impact of a health crisis on its community’s most marginalized members. She hoped to expand black political conversations about state violence from a sole focus on police violence to a broad-based critique of state power that could include AIDS (since more people were dying of AIDS than police violence). By discussing racism in AIDS activist movements and the dangers of professionalizing black AIDS activism, she sought to advance academic conversations about power to include its effects within marginal communities. But these political concerns exceeded the boundaries of the discipline of political science. In the interview she discussed her concerns about getting tenure, and how her joint appointment in African American studies and the mentorship of black feminist scholar Hazel Carby helped to make her book more intelligible to the university. Cohen’s interdisciplinary research challenged received concepts and methods in political science, while bringing an analysis of interlocking systems of oppression to bear on African American studies. Although stating in the book that it was not her aim to “condemn the choices or behavior of any particular group of leaders or organizations,” she still faced criticism from black community members along these lines. More important, she received many notes and phone calls from black women, gays, and lesbians thanking her for her work, stating how much it meant to them. She accepted numerous invitations to speak about AIDS in black communities, so much so that she eventually had to stop responding so that she could continue her research program. Nevertheless, the notes, calls, and invitations suggested that her vision of the book as a “cry for help” was shared and sometimes heard.

The AIDS epidemic offers an important site for tracking the “historical evolution of black women’s thought” because it demonstrates how black women have long challenged scientific and state authority over knowledge. Drawing on black lesbian feminist traditions of knowledge production and activism, these intellectuals contested dominant AIDS discourses that rendered black women as either invisible or othered; conflated the structural determinants of health with black cultural deviance or genetic difference; and privileged scientific authority (unmarked as white and heteropatriarchal) over community-based knowledge. Moreover, they challenged heteropatriarchal and liberal ideologies within black and Latinx communities, which have stigmatized and excluded those most vulnerable to the epidemic—IV drug users, poor women and their children, and same-sex desiring men—in their quests to position themselves as moral subjects worthy of full U.S. citizenship. In turn, their intersectional and interdisciplinary methods, coupled with their racial, gender, and sexual identities have rendered their contributions marginal within their respective fields. Taking on the status as “traitor” and recasting lesbianism as an epistemological terrain that challenged the “structured silence” that prohibited and constrained academic and public conversations about AIDS in black communities, black lesbian feminist intellectuals produced work in the 80 s and 90 s that sought to reclaim the despised bodies of those affected by AIDS in an effort to save lives. Though single-axis movements, disciplinary boundaries, and respectability politics produced fragmentation in their professional, political, and personal lives, they drew from black lesbian feminist genealogies of knowledge production to advance an “integrated analysis” that did not separate scientific approaches from social and cultural approaches, or community-based knowledge from academic research. Their intersectional analyses have demonstrated how racial, class, gender, and sexual ideologies have shaped dominant and indigenous discourses of AIDS in ways that continue to have detrimental effects on the multiply marginalized communities who are most vulnerable to the disease.