Book Review: Holding On: African American Women Surviving HIV/AIDS

Holding On: African American Women Surviving HIV/AIDS. Alyson O’Daniel, Lincoln: University of Nebraska Press, 2016, 264 pp.

This critical ethnography presents different life experiences and survival strategies exhibited by 40 HIV-positive African American women living in Midway, North Carolina. Deploying the methods of participant observation and in-depth interviewing, the author highlights the heterogeneity of survival practices that participants implement in the context of HIV policy changes. The book explains the evolution of The Ryan White CARE Act, a public health HIV policy enacted in 1990. This policy sought to address the health care needs of HIV-positive individuals who had no viable financial support or resources. Initially created as a temporary safety net to curtail challenges associated with living with HIV, the policy was changed and now favors neoliberal beliefs and practices highlighting self-management and personal responsibility in the use of governmental-mandated health care by HIV-positive African American women. A rigid and systematic implementation of rules and documentation ultimately marks HIV-positive women for inclusion or exclusion of HIV health care services. In addition, these policy shifts divest interest in the daily needs and concerns of these women.

This book highlights variability between women that O’Daniel categorize as stable, precariously situated, and vulnerable HIV-positive African Americans. The author describes the intersections of their daily lived experiences, use of HIV care services, and interaction with providers in Healthcare Partnership, a Midway HIV/AIDS service organization, that provides a nuanced view of how these women differentially maintain survival in their health care. The book focuses on two tangible services that are desirable in adopting a neoliberal identity—namely, attendance and participation in HIV/AIDS educational forums and laboratory testing. Both are attributed to shifting HIV discourse and policy from a social concern to a medical concern.

O’Daniel notes that stable women are the most economically secure, given that they draw from a variety of income resources, including disability and social security benefits. She also notes that stable women generally have either no prior history or long-term abstinence of substance abuse. In contrast, precariously situated women represented a group at various stages of their substance abuse recovery and showed less economic stability, as evidenced by a portion of their monthly expenses forwarded into subsequent billing cycles, periodic eviction, and disconnection of utilities. Vulnerable women showed signs of ongoing chemical dependency and are described as unable to pay their rent, often resulting in chronic homelessness. There is an important relationship between substance abuse and social networks, with stable women often belonging to social networks that did not include individuals who used drugs. However, in the vulnerable group, women were usually a part of a social network that included drug use as a result of desperation for housing and lack of social support. Many precariously situated and vulnerable women expressed a desperate need for primary material resources centered on housing, food, and health care. In contrast, stable women viewed material items such as hygiene and toiletry products as important to their lived experience since concerns related to housing, food, and health care were generally met.

In the wake of policy reform that advocated for a client’s demonstration of self-surveillance in medical management, this ethnography illustrates that this compliance also created differences in the women’s ability to associate with service professionals and organizations that could potentially translate to social and economic benefits. O’Daniel describes this phenomenon as “social network surrogacy.” Stable women benefited greatly from a social network surrogacy because, despite their HIV status, they embraced middle-class norms and behaviors that assisted them in greater access to HIV programming services. In appearing to be independent and grateful for the assistance they were provided, stable women drew on various resources not provided to precariously situated or vulnerable women. This was due in large part to their community involvement and advocacy that are not so easily accessible to precariously situated and vulnerable clientele. Through avoidance of appearing entitled to services, providers of Healthcare Partnership found stable women easy to assist in their appointed role as state-sanctioned agents. These providers are required to prioritize funding concerns as opposed to addressing health outcomes in the face of structural vulnerability—a focus of past public health HIV policy.

In addition, this book highlights the importance that laboratory blood work plays in health care for all three categories of women and what it means to negotiating daily survival in the context of HIV. This book notes that HIV-positive African American women are required to follow stringent rules surrounding documentation of their HIV status via medical quantification laboratory methods to secure specific services. Stable women were the most critical of the three groups, noting that blood work was imperfect, incomplete, and situational. Despite this critique, their regular compliance and documentation rewarded them with the inclusionary status of “therapeutic citizens,” which allowed them entry into social memberships and resources that provided them with the ability to plan for the future. Contrary to the beliefs of stable women, precariously situated women used their blood work results as a way to manage their mental health and found comfort in the quantification, particularly when lab results indicated that their disease was being managed effectively. Unlike the stable women, this group were focused on immediate life concerns and not on the future. Finally, the book illuminates how vulnerable women are less likely to incorporate a medically oriented HIV perspective due to barriers surrounding lack of attendance at HIV-sponsored educational events. Because of this, they were the group most likely to view medical testing as less important to immediate issues surrounding maintenance of social networks in an effort to survive in a context of instability with housing, food insecurity, and social stigma and abandonment.

At a time when the lives of African American women surviving with HIV are not commonly illuminated, Holding On provides an important addition to the anthropological and public health literature. The centering of HIV-positive African American women’s voices reveals their diversity when they are often viewed as a homogeneous group. The multiplicity of experiences and survival strategies outlined in this ethnography contributes to broader anthropological and public health literature. This can translate to applied approaches in HIV public health policy warranting a critique of the neoliberal goals of self-surveillance toward a reinvestment in the daily needs and concerns among HIV-positive African American women. This ethnographic narrative of survival in the context of ever evolving public health care policies would be useful to social science scholars interested in health care policy and a welcome addition to upper-level undergraduate and graduate medical anthropology courses as well as public health and public policy courses

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