After conducting Fulbright research on the cultural politics of HIV/AIDS in Jamaican women’s lives, I became interested in exploring how Afro-diasporic women matter in responses to the pandemic. This interest grew alongside both my personal experiences as an HIV tester in Detroit and my exploration of the global dilemmas surrounding sexual and reproductive health. The real world effects of health policy changes both domestically and internationally continue to shape Black women’s health in profound ways, as is evident by President Donald Trump’s reinstatement of the Reagan-era policy known as the Global Gag Rule, which freezes funding for sexual and reproductive health services of nongovernmental organizations in poor countries in regions such as the Caribbean and Sub-Saharan Africa.
Responses to HIV and AIDS expose the cultural dilemmas about marginalization and health. Public discourses about the epidemic that have framed Black women as “carriers of diseases” reveal how Black women’s bodies and sexualities remain a terrain upon which contested notions about race, gender, class, and sexuality are worked. Although HIV disproportionately impacts Black women, they remain peripheral to HIV-related research and funding agendas, clinical trials, and public health interventions. This neglect reveals the racialized, gendered erasures within responses to HIV/AIDS, highlighting the systematic divestments in the health of Black women globally.
In the fourth decade of the global HIV/AIDS pandemic, the world faces a striking phenomenon: disproportionately high HIV and AIDS rates among Black women. African American women in the United States accounted for 61% of new HIV diagnoses among women nationally in 2015. As the epidemic shifts from the urban epicenter to the South, African American women in the region accounted for 69% of all HIV diagnoses among women. These trends mirror those in Jamaica, where young women between the ages of 10 and 19 are three times more likely to be HIV positive than boys of the same age. Reductions in AIDS-related deaths have occurred among people of all age groups except young women ages 14-26.
This observation begs the question: Do Black women’s lives matter in national responses to HIV/AIDS? The growing gender and racial disparities in HIV and HIV-related health outcomes in countries such as the United States and Jamaica invite further exploration of the historical dimensions of HIV/AIDS.
National HIV/AIDS Response in the U.S.
The early responses to the epidemic in the U.S. in the 1980s focused primarily on the experiences and needs of white gay men, whose mobilization was widely documented in mainstream political activism, media, public discourse, and public health interventions. Political scientist Cathy Cohen notes that black political leaders contributed to this active silencing around HIV in black communities because they invested in the politics of respectability rather than the lives of those multiply marginalized groups most affected by HIV and AIDS.
Amid tensions at the national levels of political leadership, black researchers, black activists, and their allies worked hard to mobilize the public health system around what was viewed as a “white gay disease.” For example, the strategic organizing of Black gay men to address AIDS in Black communities was a striking contrast to government inaction. Groups such as “Majority Action Committee,” which was led by gay men of color within ACT UP, a predominately white HIV activist group, amplified the voices of people of color by directly protesting the racism members experienced in the medical and social service establishment and connecting AIDS to long-standing manifestations of inequality in the U.S.
The activism of Black intellectual, political, and cultural leaders pressured the CDC to respond to the growing impact of HIV and AIDS among African Americans. The expansion of the CDC’s research and programmatic efforts includes initiatives such as the Minority AIDS Initiative and the Diffusion of Effective Behavioral Intervention, which provided resources to strengthen community-based capacities to serve people of color living with HIV and training for individuals to deliver culturally-informed HIV-prevention initiatives.
While these programs have provided funding and enabled greater involvement of Black religious and community leaders, they do not directly address the racialized, sexual, and gendered dimensions of the epidemic. The overemphasis on behavioral “risk factors” typical of public health interventions ignores how the structures of racism, misogyny, and classism affect the daily lives of Black women.
In order to develop effective approaches to HIV, responders must understand how entrenched social determinants contribute to and often create the foundation for disparities in HIV incidence and diagnoses and AIDS diagnoses and deaths. This will require interventions at both structural and interpersonal levels, as well as the recognition of the critical roles of community and cultural context.
National HIV/AIDS Response in Jamaica
The exclusion of Black women in the national HIV/AIDS response has a long history in the Caribbean. The close identification of the virus with gay men meant that women were nearly invisible at the beginning of the HIV/AIDS epidemic in the Caribbean. Even by the early 2000s, when it was recognized that women were acquiring HIV heterosexually, and today, when women are accounting for an increased proportion of the AIDS cases that are reported annually, prevention efforts and public health campaigns have heavily emphasized target narrow risk-group categories such as “men who have sex with men (MSM)” and “commercial sex workers.”
Unlike the US, Jamaica’s growing dependence on foreign aid to fund its national response significantly impacts its national efforts to address HIV/AIDS. The enduring legacies of British colonialism and American imperialism have created long-term economic and social inequities that have solidified the role of international forces in contemporary responses to the epidemic.
This increasing reliance on aid from the US, Germany, and other countries within the European Union also stems from long-standing challenges of postcolonial Jamaica’s experience with debt and structural adjustment policies that led to reductions in government health care expenditures, privatization of medical care, and underemployment. These forces have provided funding and resources that have allowed Jamaica to establish a public access program for ARV treatment of persons with AIDS and advanced HIV. However, their growing presence has also increased their power to crystallize priority areas and populations, which continue to exclude Black women.
This backdrop provides the context to understand the gendered erasures in the Jamaican epidemic. The efforts of the late 1980s and early 1990s incorporated culturally informed approaches such as media interviews and regular mass media campaigns that promoted prevention messages and condoms. Yet, the prevailing perception remained: HIV and AIDS happened to homosexuals and sex-workers and not to “average” Jamaicans.
The second decade of the pandemic saw changes in these prevailing attitudes as the epidemic shifted from a generalized to a concentrated epidemic among youth, women and low-risk heterosexuals. However, efforts to “integrate and mainstream” gender within the local HIV/AIDS responses were only limited as national efforts failed to fully address gender equality and gender-based violence in policy and practice. Meanwhile, the entrance of non-governmental organizations into the space of development and health aid strengthened the country’s capacity to develop and implement public education and communication programs at national and regional levels.
Today, the country has become part of a global network of “low- and middle-income countries” that comprise the growing share of the global HIV/AIDS burden. Yet, Jamaican women remain at the periphery of funding and research agendas. This sustained inattention to their lives as well as the structural inequalities and gendered violence they face severely undermines the effectiveness of HIV interventions and research.
Broader Implications of Gender, Health, & Marginalization
The ongoing erasures of Afro-diasporic women in national responses to HIV/AIDS in the U.S. and Jamaica are telling of the ways gender, race, and health inequity are written on Black women’s bodies. The failure of governments, researchers, policymakers, and advocates to come to terms with the role of gender and marginalization in the experience of illness and persistent health inequities has long-term consequences on national and global health.
The larger stakes of these historical exclusions become apparent in the simultaneous invisibility and centrality of Black women to contemporary approaches to the epidemic. They include the ways power shapes who is deserving and undeserving of aid, which bodies are pitiable and which are immoral, which stories of suffering and pain get told, and importantly, how the politics of life and death play out in ordinary lives.
As cultural anthropologist Shanti Parikh incisively notes, “HIV is not simply a medical condition, but also a socially constructed set of facts and a site for ideologically driven interventions.” Public health HIV decisions tell who and what are worthy of life-saving investments. Local and international health policy and programs have emphasized that Black women are not worthy of resources crucial to their basic functioning.
We see this as African American and Jamaican women shoulder the lethal effects of the Global Gag Rule’s ban on U.S. global health assistance to international health organizations that provide family planning. These divestments are also evident in Trump’s recent decision to fire all the members of the HIV advisory panel. They are clear in his re-stigmatizing of people who have HIV/AIDS and Haitians in particular and the demonizing of Afro-diasporic populations.
Efforts to appropriately address HIV/AIDS must come to terms with how marginalized groups embody deep inequities in the most intimate ways. This will require more culturally-informed interventions that consider how interlocking forms of social stratification create unique needs. It will also require interdisciplinary approaches and cross-national perspectives about gender, health, and inequality.
This will make the crucial difference between life and death.