Book Review: Deadly Disease, Life-giving Partnerships

Celeste Watkins-Hayes’s Remaking a Life has a very precise title. Remaking a Life explains how women living with HIV/AIDS find the tools they need, not to rebuild their lives as the common expression goes, but to entirely remake them. This is an important difference in meaning that reveals valuable lessons for those seeking to understand entitlement programs. The process of remaking a life is a difficult and dramatic transformation; it is a series of “deeply social events—negotiated processes influenced by the people, places, and public policies that we encounter,” Watkins-Hayes writes. Although the text focuses on women of color, Watkins-Hayes takes care to show how her analysis of the economic welfare programs and AIDS advocacy has widespread implications for all members of our society.

Remaking a Life opens with the account of a woman named Dawn Stevens who spends nearly a decade dying from HIV/AIDS before she remakes her life. She experiences childhood sexual abuse, addiction, survival sex work, homelessness, imprisonment, and the loss of all four of her children to the state’s punitive child welfare system. Stevens comes to believe that contracting HIV saved her life, because it was this diagnosis that brought her into contact with the AIDS social service network. After a stint in prison, she enters a halfway home that allows her to complete HIV education and interact with others living with HIV/AIDS. The stability from the halfway home enables her to access healthcare and maintain the necessary health regimen she needs to live. Later, she finds full-time employment in the HIV advocacy community, a stable home, and forms a new family with a loving partner and adopted child. It was the HIV/AIDS social service community that enabled her to find the care and treatment she was never able to access.

Watkins-Hayes has been interviewing women living with HIV/AIDS for over ten years. After getting her PhD in sociology from Harvard University, Watkins-Hayes went on to complete scholarship in African American Studies and public policy. Much of her work focuses on health disparities caused by differences in social and economic hierarchies. She conducted over ten years of research on the survival strategies of women living with HIV/AIDS in the Chicago area for Remaking a Life. During this time, she heard countless distressing stories like Stevens’s.

One of the most important findings from her research concerns the shift from dying from to living with HIV/AIDS. Watkins-Hayes points to three factors that made survivors such as Stevens more susceptible to contracting HIV/AIDS. These factors include trauma from childhood sexual abuse, drug dependency, and the shame surrounding the disease. These three factors were often compounded by unsupportive communities, poverty, and lack of access to healthcare. It was the support of the AIDS advocacy community and government/non-profit assistance, in Watkins-Hayes’s view, that allowed these women to win the battle against the social/physical death and childhood trauma that nearly destroyed them.

The AIDS safety net is the result of extensive mobilization and decades of work by AIDS activists. This unique form of assistance is composed of a partnership between public, private, and non-profit partners working to connect people living with HIV/AIDS to social, economic, and communal benefits. This net combines affordable healthcare, economic assistance by way of disability benefits and free access to public transit, social support from others living with AIDS, and a chance to participate in political advocacy in the form of community advisory boards and community-based organizations. This underappreciated network offers “access to healthcare, modest economic assistance, extensive social support, and a path to political and civic engagement.” Perversely, this form of assistance only becomes available when individuals are already deeply suffering. It was not designed to keep women from contracting HIV but rather to address the public health threat posed by it.

Remaking a Life is not just intended for an audience of service providers, black feminists, or other academics. There are key lessons for socialists and movement members as well. It reveals key insights into how structural violence is compounded, how communities fail the most vulnerable, and how even the gravest injustice can be rectified. The AIDS safety net represents an important tool for helping women regain their strength after surviving trauma.

Remaking a Life concludes by highlighting the radical potential for this social safety net to cover more members of society. Watkins-Hayes notes that “the AIDS response demonstrates that the chance to remake our lives following tragedy and trauma should not be reserved for the most privileged among us.” Remaking a Life offers a clear justification for those fighting to expand the welfare state. The most salient takeaway is that our society can lessen economic and social inequities through investment in social programs, paired with the promotion of civic and political opportunities. This combination can, not only, allow the most hurt to repair their lives following a tragedy, but it can also protect the health and well-being of its citizens before they end up at risk in the first place.