What We Can Learn From HIV-Positive Black Women
HIV-positive Black women throughout the Americas have organized to combat the effects of the illness, inequality in their access to resources, and exclusion from worldwide HIV/AIDS efforts. They have mobilized themselves and their communities to create support groups and to access the health resources they need based on their own experiences as HIV-positive Black women. In groups such as EVE for Life in Kingston, Jamaica and Positive Support Organization in Detroit, Michigan, Black women have taken up political issues based on their own understandings of themselves as HIV-positive, Black women, mothers, and advocates.
The grassroots organizing of Paula Sirls reveals how Black women have mobilized against the epidemic. Twenty-five years ago, Paula co-founded the Positive Support Organization, a support group in Detroit, Michigan for HIV-positive Black women who are newly diagnosed. She notes the significance of sharing knowledge that demystifies HIV, processing the trauma that comes from stigma, and accessing referrals to services. Paula has become a “framing agent” — which sociologist Celeste Watkins-Hayes describes as institutional actors that collaborate with HIV-positive women to help directly challenge perceptions of HIV as a stigma and a death sentence.
The Context of HIV/AIDS
Globally, AIDS-related illnesses remain the leading cause of death for women of reproductive age, and those ages 15–24 years account for a disproportionate number of new infections. In Jamaica, data show that the percentage of women living with HIV has increased from 30% between 1980 and 1989, to 45% between 2009 and 2012. In the United States, although there has been a steady decline in HIV infection rates among women, African American women account for 61% of new HIV diagnoses. As the epidemic extends from the urban epicenter to the South, African American women in the region accounted for 69% of all HIV diagnoses among women in 2016.
There has been a decrease in support for social welfare, quality healthcare, and HIV prevention in communities of color, and Black women remain neglected in HIV public health interventions as well as in funded research. These erasures are linked to inequalities based on class and healthcare accessibility that cause people of color to have more negative HIV-related health outcomes. A growing chorus of voices has warned us about these inequalities. For example, in Workable Sisterhood: The Political Journey of Stigmatized Women with HIV/AIDS, political scientist Michelle Tracy Berger uses the concept of “intersectional stigma” to offer a model of how to understand Black and Latina women’s access to resources and services, ultimately shaping their health and political participation.
HIV-positive Black women’s activism
I’ve connected with HIV-positive Black women in Detroit, Michigan and Kingston, Jamaica to observe and learn from their grassroots efforts and political lives. My visits revealed how Afro-diasporic women used their unique experiences as resources to gain political recognition, meet financial needs, and maintain their community health work. More specifically, the women I had conversations with in communities, organizations, and clinics emphasized how their diagnoses and social identities as HIV-positive working-class mothers allowed and denied opportunities.
Paula critiques the uneven distribution of public resources for HIV care and prevention: “African American women have disproportionate rates of HIV. Yet, there are no programs to back that up… You have to get HIV to get funded. Ain’t that sad?”
Paula’s question signals the neglect in national responses to HIV. Last December, the Centers for Disease Control and Prevention (CDC) prohibited officials at the nation’s top public health agency from using words such as “vulnerable,” “diversity,” and “evidence-based” in official documents. The banning of these words will further neglect women of color who already are low-priorities for high-level public health leaders.
This occurred two weeks before President Trump’s decision to fire all the members of the national HIV/AIDS advisory council. It happened one year after growing reductions in spending on HIV/AIDS prevention and research, which are respectively 3% and 8% of the US federal budget for HIV/AIDS. Between 2012 and 2017, funding for the CDC Domestic Prevention and Research decreased by approximately $34 million. These divestments reduced crucial preventative services such as HIV screening and linking people with HIV to care and treatment.
What can you do as a practitioner, researcher, or organizer?
The work done by HIV-positive Black women like Paula is important in order to connect individuals, communities, and institutions in the fight against the epidemic in communities of color.
For healthcare professionals, this can mean directly eliminating barriers that prevent people of color from accessing the services and support they need to survive, using your positions to help address the unequal distribution of wealth and public services, improving the cultural knowledge of practitioners, and developing toolkits for training of health care staff at all levels.
For researchers, this means developing interdisciplinary frameworks and asset-based approaches to culture that considers how people and illnesses are embedded in broader structural, communal, and historical contexts. Considering the lived experiences of communities of color will illuminate the various ways marginalized groups embody inequality and develop organic practices to both survive and thrive.
For activists and organizers, this means creating and sustaining movements for social change that transforms processes of violence on vulnerable groups. This will necessarily require confronting competing efforts across organizations, encouraging coordination and dialogue across institutions at the local and state levels, and offering integrated services that sustain long-term coping mechanisms.
These commitments will have an impact on how we apply cultural resources and communal knowledge to our efforts and develop coalitional, intergenerational, and interdisciplinary strategies to eliminate HIV.
As National HIV Testing Day is on June 27th in the United States, it’s worth noting the role of HIV-positive Black women in organizing and advocating for current and future approaches to the epidemic.
The National HIV Testing Day is a CDC-led national effort to spread awareness about early HIV testing and treatment through collaborations with health departments, organizations, and community members. For example, in Detroit, Gospel Against AIDS (a faith-based HIV/AIDS organization), the Michigan Health Department, and Walgreens pharmacy will collaborate to coordinate activities and services, particularly for communities of color disproportionately impacted by HIV/AIDS. Free and confidential HIV testing will be offered at two sites from 10 am to 7 pm: 6331 East Jefferson Avenue and 22380 Moross Road.
Jallicia Jolly is a PhD candidate in the Department of American Culture at the University of Michigan, and a graduate student research fellow at the National Center for Institutional Diversity.
