Sociologist, Celeste Watkins-Hayes, has written an extraordinary book that should be read by all practitioners and policy makers who work in the treatment and prevention of HIV. It is drawn from ethnographic interviews and observations of more than 100 Chicago women diagnosed with HIV. Unlike typical research reports that begin with a review of the literature, followed by the problem or hypothesis, and then move on to methods, results, and analysis, Remaking a Life immediately engages the reader in the riveting story of Dawn, who tells us in her own words, how her HIV diagnosis at age 24 actually saved her life. And so begins a rich narrative, grounded in the real-life experiences and voices of women living with HIV. The obligatory study tables and summaries of results (e.g., more than 60% of the women in this study were childhood victims of sexual abuse) are tucked into the appendices of the book and occasionally woven into the text to lend both credence and color to the experience of particular women.
Interestingly, Watkins-Hayes begins her treatise with a description of the male experience of HIV and AIDS early in the epidemic. Far from being a distraction, this provides a useful benchmark to assess the very different experiences of the Chicago women. Unlike the gay, predominantly White men for whom degrees of privilege and the unifying bond of homophobic stigma brought them together as activists, the experience of the Chicago women was characterized by anxiety, desperation, and isolation as they tried to live without resources and without fellowship. However, Watkins-Hayes also shows us how the gay male experience eventually was instructive for these women, ultimately encouraging women with HIV to form relationships with other women living with HIV ("Oh my God, we all have it"), to act collectively, and to learn how to present their HIV status to friends and family as they pursued the struggle from victimization to agency.
The sagas of these Chicago women challenge the usual concepts and even the language that pertain to the care of women with HIV, most notably, reframing "cure" to "transformation," and "living with" rather than "dying from" HIV. This shift was only partly about the advances in medical science that has permitted HIV to move from an acute, almost certainly fatal disease to a chronic and almost nontransmittable disease. What we learn in this book from Dawn and Keisha and Rosaria and others as we march toward zero new cases is the importance of a safety net of publicly supported facilities and essential services-housing, transportation, child care, personal safety, therapy, and access to healthy food that reinforce a successful transition to "living with" HIV.
Watkins-Hayes takes umbrage with health care intervention that relies on medical management based solely on tracking viral load and T-cell counts that ignores the necessity of the structural, cultural, and economic elements of the HIV safety net. Based on stories from the women in her study who described being too depressed to show up for physician appointments or too stressed to take their medication, she makes a strong case for the mutual reinforcement of medical treatment and a public health safety net that promotes transition as well as cure. Their stories-both wrenching and heartening-breathe life into the stale and tepid notions of social determinants, replacing them with what they really are: injuries of inequality, which must be addressed in conjunction with medical treatment. These Chicago women emphasize the necessary fluidity and interdependency between medical management and community services.
The value of this book for social workers, nurses, physicians, pharmacists, as well as public health providers and policy makers working in the prevention and treatment of HIV is indisputable. Indeed, it would be hard to find any health care professionals touched by the HIV epidemic-particularly at its apogee-who would not be deeply moved by this book and inspired to re-think their views of afflicted persons and, perhaps, their own practices. Indeed, Remaking a Life sends the entire health care community a very important message about the nature of treatment in general, redefining HIV patients who happen to be women as women who happen to have HIV.
Nurses, especially, will resonate with this book because it is completely consistent with Nightingale's definition of nursing as "helping people to live well." Remaking a Life reminds us that it is not just about managing the disease but also about managing how the disease is experienced and that we need to listen to the Dawns and Keishas and Yvettes and Beverlys and all those afflicted with injuries of inequality to properly assist them in their transformation. Watkins Hayes has provided us with a stunning reminder to challenge our current practices in a way that is truly person centered.
Remaking a Life is in an infinitely engaging, beautifully written, and often riveting narrative of real women facing the reality of a monstrous epidemic. If I were teaching a first course in public health, I would begin with this book. It is exquisitely readable, replete with heroes, and even a few villains. There are some things that simply cannot be learned from a controlled, double-blind, laboratory experiment. For those doctoral students contemplating an ethnographic research design, this is a striking example of how it can be conducted and presented to produce a compelling treatise for the discipline or profession that is both edifying and practical.
Disclosures
The author reports no real or perceived vested interests related to this article that could be construed as a conflict of interest.