Remaking a Life: A New Book about How Women Living with HIV/AIDS Confront Inequality

This post is part of our blog series that announces the publication of selected new books in African American History and African Diaspora Studies. Remaking a Life: How Women Living with HIV/AIDS Confront Inequality was recently published by University of California Press.


The author of Remaking a Life: How Women Living with HIV/AIDS Confront Inequality is Dr. Celeste Watkins-Hayes, associate vice president for research and professor of sociology and African American studies at Northwestern University. She is also a faculty fellow at Northwestern’s Institute for Policy Research. She is a nationally-recognized scholar and expert on HIV/AIDS, urban poverty, social policy, and inequality. Her book, Remaking a Life: How Women Living with HIV/AIDS Confront Inequality (University of California Press, 2019), analyzes the transformation of the AIDS epidemic and is based on interviews with over 100 female AIDS activists, policy officials, advocates, and women living with HIV/AIDS who have been on the front lines of this fight. Her first book, The New Welfare Bureaucrats: Entanglements of Race, Class, and Policy Reform (University of Chicago Press, 2009), was a finalist for the 2009 C. Wright Mills Book Award from the Society for the Study of Social Problems and the 2011 Max Weber Book Award from the American Sociological Association. In addition to her academic articles and essays, Watkins-Hayes has published pieces in The New York Times, The Atlantic, and Chicago Magazine. In 2018, Watkins-Hayes received the E. LeRoy Hall Award for Excellence in Teaching, which is the highest teaching award given by Northwestern’s Weinberg College of Arts and Sciences. She holds a Ph.D. and M.A. in Sociology from Harvard University and a B.A. from Spelman College, where she graduated summa cum laude. Follow her on twitter @watkinshayes.

In the face of life-threatening news, how does our view of life change — and what do we do to transform it? Remaking a Life uses the HIV/AIDS epidemic as a lens to understand how women generate radical improvements in their social well-being in the face of social stigma and economic disadvantage. Drawing on interviews with nationally recognized AIDS activists as well as over one hundred Chicago-based women living with HIV/AIDS, Celeste Watkins-Hayes takes readers on an uplifting journey through women’s transformative projects, a multidimensional process in which women shift their approach to their physical, social, economic, and political survival, thereby changing their viewpoint of “dying from” AIDS to “living with” it. With an eye towards improving the lives of women, Remaking a Life provides techniques to encourage private, nonprofit, and government agencies to successfully collaborate, and shares policy ideas with the hope of alleviating the injuries of inequality faced by those living with HIV/AIDS everyday.

“A brilliant book on political and personal transformation. For anyone interested in how activism and advocacy work to challenge inequality and transform state policy, while also remaking lives in local communities across the country, this book is a must read.” — Cathy J. Cohen, author of Boundaries of Blackness: AIDS and the Breakdown of Black Politics

J.T. Roane: What type of impact do you hope your work has on the existing literature on this subject? Where do you think the field is headed and why? 

Celeste Watkins-Hayes: While conducting fieldwork on the HIV/AIDS epidemic among women in the United States, I found something unexpected — a story of the profound power of personal and political transformation. My book, following up on Cathy J. Cohen’s The Boundaries of Blackness: AIDS and the Breakdown of Black Politics, shows how women with HIV transform from what I call dying from to living with to thriving despite AIDS and other systemic injuries of inequality.

Many of the HIV-positive women I interviewed were grappling with crushing obstacles: poverty, drug addiction, childhood sexual trauma, and nonexistent social services. Once these women received access to healthcare, economic assistance, and robust social support through the HIV safety net, though, they were able not only to live with the disease but also to tap into reservoirs of resolve to thrive despite it. What I call the transformative project involves sustained movement from economic, emotional, and physical crises to greater stability and social well-being, as women’s agency and cognitive shifts intersect with stabilizing institutional supports and responsive public policies. Attaining stability and social well-being enables these women to overcome injuries of inequality and confront the forces that generate them. The transformative project therefore offers a framework for improving women’s lives that has policy relevance, political potential, and theoretical utility. The book also acknowledges the perverse irony that only an HIV diagnosis enabled these women to access the help they always needed. I therefore critique our now-tattered social safety net that leaves so many to fend for themselves as they navigate growing economic and social inequality and the injuries it inflicts on individuals, families, and communities.

Highlighting the experiences of Black women caught up in the AIDS epidemic and contributing to the organized response reveals what conventional public policy analysis often overlooks. I therefore also analyze the politics of HIV/AIDS activism, showing that Black women’s stories don’t end at trauma and victimhood, or even resilience and survival. In my book, we witness Black women becoming leaders, active participants, and key players in shaping public policy. Black women activists, advocates, and policy officials — whether or not they live with HIV — have been instrumental in transforming the AIDS response into a truly intersectional social movement and policy formation. Their histories demand that we revisit how we understand the history of the HIV/AIDS movement and account for the continuing struggles and critical contributions of Black women.

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J. T. Roane

J.T. Roane is assistant professor of Africana Studies in the School for Social Transformation at Arizona State University. Roane is broadly concerned about matters of geography, ecologies, sexuality, and religion in relation to Black communities. He is at work on a manuscript, Dark Agoras: Insurgent Black Social Life and the Politics of Place in Philadelphia. Follow him on Twitter @JTRoane.