Abstract
“If it weren’t for HIV, I’d probably be dead,” said Dawn, a Black woman now thriving with HIV. This chilling provocation opens Remaking a Life: How Women Living with HIV/AIDS Confront Inequality. The book synthesizes a decade of intersectional research on HIV/AIDS. It is a must read for HIV/AIDS professionals and students in Women and Gender Studies, Medical Sociology, Public Health, Nursing, and Social Work. Watkins-Hayes artfully bridges a historical account of HIV/AIDS infrastructure in the United States with team-based engagement projects with Black cisgender women living with HIV/AIDS (WLWHA) around Chicago, Illinois. She weaves six core analytics through the book: injuries of inequality, the movement between dying from to living with to thriving despite, the sexualized drug economy, the HIV safety net, framing institutions, and the transformative project. Remaking a Life breathes new sociological insight into public health in the Undetectable = Untransmittable (U=U) era of HIV treatment and prevention. Beautifully written and clear-eyed in style and substance, Watkins-Hayes invites the HIV/AIDS world to cite black women as transformers of HIV/AIDS institutions and policies in the United States and beyond.
Watkins-Hayes reminds biomedical and public health experts that we cannot end the epidemic without the leadership of HIV-positive women. Warning of an “undetectable divide” (180), Watkins-Hayes argues that the social and cultural resources, infrastructure, and supports of the HIV safety net remain crucial public health tools in the medicalized era of Treatment-as-Prevention. The peer connections, information, frameworks, and language that enabled women to incorporate HIV into their lives was a social precursor to biomedical viral suppression.
Watkins-Hayes’ team shadowed women who moved from “dying from” to “thriving despite” injuries of inequality. These women shifted their interpretations, tactics, and strategies for addressing entwined inequalities. Watkins-Hayes argues the moves from dying from to thriving despite are a form of social mobility to consider alongside traditional SES indicators. In this rethinking of mobility and status, Watkins-Hayes theorizes illness as an intersecting identity.
The framing of HIV status fundamentally shaped possibilities for women to “rewrite” their identities and life stories (142). The “safety- net that AIDS activism built” is crucial among the framing institutions and supports that made such life transformations possible. Watkins-Hayes extends the social history of HIV/AIDS in the United States and shows how the unique federal funding streams of the 1990 Ryan White Comprehensive AIDS Resources Emergency Act (the CARE Act) patched together community-based AIDS Service Organizations and institutionalized a billion-dollar HIV/AIDS infrastructure. This HIV safety net became the gold standard of care for marginalized communities across the United States. However, the resources and supports were conditional on the diagnosis of an infectious public health threat. These threats were precisely the conditions of the HIV safety net’s possibility. Watkins-Hayes sees the HIV safety net as an alternative path for serving vulnerable populations, but selling the legislation as a targeted emergency response to a public health crisis (rather than a welfare program) secured its bipartisan alliance.
The AIDS model of care, and the large popular federal funding program behind it, are exceptional in the U.S. healthcare landscape. The social safety net is broadly denigrated, activism did not build a parallel safety net for cancer care or heart disease, and the participatory ethos of the HIV community is unique among a sweep of poverty programs that view people as problems to be solved. We might further ask whether the HIV safety net portends an increasing dependence of medico-legal disability classifications and diagnoses within the social safety net. Indeed, the institutionalization of HIV/AIDS infrastructure was itself buttressed by the thorough (and profitable) biomedicalization of public health and welfare institutions.
Recent work on the politics of HIV in U.S. communities of color, particularly Sangaramoorthy’s (2014) ethnography of race and citizenship in Miami, shows how emergent forms of biological citizenship dwell in uneasy tension with nationally bound ideas of social citizenship. And yet, these transformations in social belonging, rights, responsibilities, and political claims about race and health are absent in Watkins-Hayes’ analysis. Unfortunately, Remaking a Life sidesteps theories of stratified biomedicalization and biopolitical citizenship. Given the careful attention to the formation of political identities around health, some readers will consider the omissions conspicuous. The bibliography reflects several missed opportunities for bridging boundaries within and across subfields.
In the last, I was left sitting with the sharp edges of the question that opens the book: “How can a life-threatening illness, responsible for the deaths of millions around the world, actually help prevent a death?” (11). Why has HIV/AIDS remained siloed as exceptional in the U.S. and transnationally (Benton 2015)? Moreover, what framing institutions and transformations are needed to shift our praxis around HIV/AIDS, and health, illness, and disability more broadly? How do we forge the vital intersectional tactics for collective survival in the face of injuries of inequality? Remaking a Life offers an important entry point for these crucial questions: Follow the women of color thriving with HIV/AIDS.