Abstract
In The Political Economy of Stigma, Ally Day provides an innovative analysis of how illness narratives are negotiated and sanctioned. Using the lens of feminist disabilities studies, Day explores how the field of narrative medicine and individuals’ readings of memoir are embedded within, and affected by, a medical context that emphasizes attention to individual responsibility over systemic inequality. Day’s project involves analyzing two reading groups—one of women living with HIV and the other of HIV service workers—who collectively debrief their readings of HIV memoirs. Day supplements her study of these reading groups with other data sources, including her analyses of major texts in the field of narrative medicine as well as Day’s own experience in a narrative medicine workshop. Overall, this book provides an important critique of neoliberal medicine and offers unique tools to disrupt taken-for-granted practices that reinforce gender, racial, class, and health inequalities.
Day’s careful intersectional analysis is a major strength of the book. The two reading groups in the study comprise participants of diverse backgrounds—they are different ages and have different gender, racial, and sexual identities, and some are HIV positive or living with a disability. Throughout the text, Day examines how these social locations influence respondents’ beliefs about or experiences of illness, always linking the analysis back to a critique of structural inequality. Day—who is a white, queer woman with an invisible disability and not living with HIV—is consistently reflective of her own positionality throughout the text. Speaking as a scholar who studies LGBTQ+ (lesbian, gay, bisexual, transgender, queer (or sometimes questioning), and others) health, I appreciated that Day centered the experiences of women living with HIV. Her focus on this group uncovered important gendered processes involved in construction of illness narratives that are otherwise ignored when scholars only prioritize the experiences of men.
This book offers important methodological and theoretical contributions. Methodologically, Day demonstrates how a reading group of women living with HIV uses memoir—including the lives of the HIV positive women in the memoirs—to collectively theorize the experience of illness while respecting each other’s privacy. Theoretically, Day’s introduction of the concept “political economy of stigma” challenges analysts to consider how cultural beliefs about illness take root across institutions and trickle down to the interpersonal and individual levels, ultimately structuring how medical providers and patients determine who is deserving of appropriate health care.
Despite the many strengths of this book, I believe Day’s application of crip theory could have used more detail. As a scholar who is not deeply entrenched in this literature, I struggled to understand how this theoretical framework operates. I perceived my lack of understanding as significant given how prominently the framework played in Day’s analysis. To her credit, Day provides several statements about what the framework is “meant to” do or what it “asks us” to do. However, integrating more concrete examples of how crip theory has been applied—or could be applied—might have been useful to non-specialist readers. Importantly, this critique does not represent a negative feeling toward the book. Rather, it reflects my view that this book has strong potential usefulness to many audiences.
This book will be a useful resource for scholars, students, practitioners, and policymakers who are interested in the social construction of illness and understanding health inequalities. Day’s project derives from the medical humanities, particularly the study of narrative medicine, but her close attention to cultural, structural, and interpersonal processes speaks directly to myriad fields in the social sciences. The writing is rigorous but also accessible and engaging, making it appropriate for graduate and undergraduate courses. Health care providers would also benefit from reading this book by more deeply understanding their positionality within neoliberal medicine and considering ways to disrupt processes through which many patients’ experiences are erased and marginalized. Finally, I believe policymakers would benefit from reading this text. Day connects the issues of health and illness described by her HIV positive participants to major public policies, such as the Americans with Disabilities Act and the Ryan White Act. Policymakers will gain from this text a deeper understanding of how policy affects individual lives and may provide inspiration for generating new policy changes that reduce inequalities.
In sum, this book is a well-written, theoretically compelling, and highly approachable study that amplifies the experiences of women living with HIV. Ally Day documents the experiences of her participants in rich detail, all while generating innovative understandings of illness narrative that will resonate across many audiences. I consider this book to be essential reading for feminist and disability scholars.