The Political Economy of Stigma: HIV, Memoir, Medicine, and Crip Positionalities
Autor Allyson Dayen Limba Engleză Paperback – 28 sep 2021
In The Political Economy of Stigma, Ally Day offers a compelling critique of neoliberal medical practices in the US by coupling an analysis of HIV memoir with a critical examination of narrative medicine practice. Using insights from feminist disability studies and crip theory, Day argues that stories of illness and disability—such as HIV memoirs—operate within a political economy of stigma, which she defines as the formal and informal circulation of personal illness and disability narratives that benefits some while hindering others. On the one hand, this system decreases access to appropriate medical care for those with chronic conditions by producing narratives of personal illness that frame one’s relationship to structural inequality as a result of personal failure. On the other hand, the political economy of stigma rewards those who procure such narratives and circulate them for public consumption.
The political economy of stigma is theorized from three primary research sites: a reading group with women living with HIV, a reading group with AIDS service workers, and participant observation research and critical close reading of practices in narrative medicine. Ultimately, it is the women living with HIV who provide an alternative way to understand disability and illness narratives, a practice of differential reading that can challenge stigmatizing tropes and reconceptualize the creation, reception, and circulation of patient memoir.
| Toate formatele și edițiile | Preț | Express |
|---|---|---|
| Paperback (1) | 281.73 lei 38-44 zile | |
| Ohio State University Press – 28 sep 2021 | 281.73 lei 38-44 zile | |
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| Ohio State University Press – 28 sep 2021 | 630.78 lei 38-44 zile |
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Specificații
ISBN-13: 9780814258057
ISBN-10: 0814258050
Pagini: 212
Dimensiuni: 152 x 229 x 15 mm
Greutate: 0.29 kg
Editura: Ohio State University Press
Colecția Ohio State University Press
ISBN-10: 0814258050
Pagini: 212
Dimensiuni: 152 x 229 x 15 mm
Greutate: 0.29 kg
Editura: Ohio State University Press
Colecția Ohio State University Press
Recenzii
“Ally Day’s The Political Economy of Stigma isn ambitious and innovative piece of interdisciplinary scholarship.…At its heart, this is a book that aims to resist reductive medical narratives and find ways to address medical and social inequality.…The importance of this work is to highlight how social justice can help us to reframe the conversation away from stigma of disability and individual responsibility, and toward the systemic structures that reinforce the injustices of discrimination, race, poverty, ableism, and the narratives of wellness.”—Alice Brumby, H-Net
“The Political Economy of Stigma is a fresh, fierce, and deeply necessary text for life writing scholars, memoir fans, and health/illness practitioners and activists. … Day’s insights on the relationship between medicine, narrative, and stigma are relevant beyond the case studies she explores in her groundbreaking and politically salient book.” —Adan Jerreat-Poole, Auto/Biography Studies
“In this groundbreaking book, Day builds on and extends key conversations about audience reception and reaction to memoir, motivations for reading and writing disabled lives, and the operation and maintenance of intersectional disability stigma. It is a must-read for scholars interested in life writing, textual circulation, disability studies, and humanistic approaches to medicine.” —Stephanie L. Kerschbaum, author of Toward a New Rhetoric of Difference
“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.” —Harry Barbee, Gender & Society
“This new theorization of stigma in relation to political economy is an important contribution to disability and crip studies, to literary studies, and to health humanities. Its innovative methods and its new concepts of ‘diagnostic’ and ‘differential reading’ are sure to stimulate discussion in these fields.” —Olivia Banner, author of Communicative Biocapitalism: The Voice of the Patient in Digital Health and the Health Humanities
“The Political Economy of Stigma is a fresh, fierce, and deeply necessary text for life writing scholars, memoir fans, and health/illness practitioners and activists. … Day’s insights on the relationship between medicine, narrative, and stigma are relevant beyond the case studies she explores in her groundbreaking and politically salient book.” —Adan Jerreat-Poole, Auto/Biography Studies
“In this groundbreaking book, Day builds on and extends key conversations about audience reception and reaction to memoir, motivations for reading and writing disabled lives, and the operation and maintenance of intersectional disability stigma. It is a must-read for scholars interested in life writing, textual circulation, disability studies, and humanistic approaches to medicine.” —Stephanie L. Kerschbaum, author of Toward a New Rhetoric of Difference
“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.” —Harry Barbee, Gender & Society
“This new theorization of stigma in relation to political economy is an important contribution to disability and crip studies, to literary studies, and to health humanities. Its innovative methods and its new concepts of ‘diagnostic’ and ‘differential reading’ are sure to stimulate discussion in these fields.” —Olivia Banner, author of Communicative Biocapitalism: The Voice of the Patient in Digital Health and the Health Humanities
Notă biografică
Ally Day is Associate Professor at the University of Toledo.
Extras
I have been meeting and reading with a group of women living with HIV for months. We’ve been spending late afternoons once a week together, talking about HIV memoir. This week we are discussing Regan Hoffman’s mass-market memoir I’ve Got Something to Tell You, which recounts the experience of contracting HIV from the perspective of a White, well-educated, and wealthy Gen X woman on the East Coast. I ask, in what has become our usual ritual, whether anyone wants to begin by giving us a brief summary of what they have read so far. One of the group participants leans back in her chair, holds the book out over the table as she stretches her legs, and pronounces, “To be honest, I couldn’t get past the image of her and her damn horse!” The other members erupt in laughter, nodding in agreement in their distaste for the book cover, which features a photograph of a White woman with cascading blonde hair obscuring her face, seated on a brown horse and surrounded by pasture. They are responding as women living with HIV, Black and White, working-class, neither East Coast nor West Coast but rust-belt dwellers.
A few years later, I am hosting another reading group, this time with AIDS service workers in another rust-belt city. We are also discussing Hoffman’s memoir, but for this group, the book would be an overwhelming favorite. One of my participants, a White gay man with a graduate degree, tells the group, “This book actually made me cry. It was like ‘oh.’ It’s like that doesn’t usually happen with books with me.” Around the table, I notice others nodding (9/8/2015). The book this group disliked the most was the oldest HIV memoir we read in both groups, AIDS Memoir: Journal of an HIV-Positive Mother, written by Catherine Wyatt-Morley, a religious African American woman in the Deep South in the mid-1990s. The AIDS service workers group understood Wyatt-Morley as “historical” and “no longer relevant,” perhaps also related to the memoir’s cover, which features three family photos of Wyatt-Morley with her children, easy to date with hair and fashion as the early 1990s. In contrast, the group composed of women living with HIV felt a distinct connection to the writing of Catherine Wyatt-Morley and found her book to be the most relatable one they read during our time together. Unlike with other authors, this group referred to Wyatt-Morley by her first name, Catherine, and consistently circled back to her story as we read other books. Most notably, it was while discussing Wyatt-Morley’s book that they shared the most about their own experience with work, medical care, and the process of their own complicated HIV disclosures. What explains this discrepancy in reader reception? How can the group of AIDS service workers have such a different perspective from the group of women living with HIV? In what follows, I recount and analyze my experience with these two reading groups—that is, women living with HIV and AIDS service workers—in order to address the divergent impact of narrative on medicine and care. The Political Economy of Stigma provides a methodological innovation: a reading group praxis for creating theory through narrative and medicine that is collaborative, critical, and creative. It also provides a theoretical apparatus for reading and interpreting disability and illness narrative within a neoliberal medical economy; I call this apparatus the political economy of stigma. I define the political economy of stigma as the formal and informal circulation of personal illness and disability narrative that benefits some while hindering others. On the one hand, the political economy of stigma works to decrease access to appropriate medical care for those with chronic, unpredictable conditions by producing narratives of personal illness that frame one’s relationship to structural inequality as a result of personal failure. On the other hand, the political economy of stigma rewards those who procure such narratives, such as medical practitioners, and circulate these narratives for public consumption, either in publications or in professional education settings. While not all narratives of illness and disability circulate within the political economy of stigma (for instance, can a doctor living with HIV treating patients living with HIV be neatly encompassed in the binary positionalities of the political economy of stigma? How about a doctor disabled by Parkinson’s treating HIV patients?), the political economy of stigma as an apparatus for analysis can help us understand why some memoirs are more popular than others, why some patient case studies are written about by doctors, and why mainstream reader interpretation remains entrenched in stigmatizing tropes, such as pity and triumph, elaborated on frequently by disability life-writing theorists.
A few years later, I am hosting another reading group, this time with AIDS service workers in another rust-belt city. We are also discussing Hoffman’s memoir, but for this group, the book would be an overwhelming favorite. One of my participants, a White gay man with a graduate degree, tells the group, “This book actually made me cry. It was like ‘oh.’ It’s like that doesn’t usually happen with books with me.” Around the table, I notice others nodding (9/8/2015). The book this group disliked the most was the oldest HIV memoir we read in both groups, AIDS Memoir: Journal of an HIV-Positive Mother, written by Catherine Wyatt-Morley, a religious African American woman in the Deep South in the mid-1990s. The AIDS service workers group understood Wyatt-Morley as “historical” and “no longer relevant,” perhaps also related to the memoir’s cover, which features three family photos of Wyatt-Morley with her children, easy to date with hair and fashion as the early 1990s. In contrast, the group composed of women living with HIV felt a distinct connection to the writing of Catherine Wyatt-Morley and found her book to be the most relatable one they read during our time together. Unlike with other authors, this group referred to Wyatt-Morley by her first name, Catherine, and consistently circled back to her story as we read other books. Most notably, it was while discussing Wyatt-Morley’s book that they shared the most about their own experience with work, medical care, and the process of their own complicated HIV disclosures. What explains this discrepancy in reader reception? How can the group of AIDS service workers have such a different perspective from the group of women living with HIV? In what follows, I recount and analyze my experience with these two reading groups—that is, women living with HIV and AIDS service workers—in order to address the divergent impact of narrative on medicine and care. The Political Economy of Stigma provides a methodological innovation: a reading group praxis for creating theory through narrative and medicine that is collaborative, critical, and creative. It also provides a theoretical apparatus for reading and interpreting disability and illness narrative within a neoliberal medical economy; I call this apparatus the political economy of stigma. I define the political economy of stigma as the formal and informal circulation of personal illness and disability narrative that benefits some while hindering others. On the one hand, the political economy of stigma works to decrease access to appropriate medical care for those with chronic, unpredictable conditions by producing narratives of personal illness that frame one’s relationship to structural inequality as a result of personal failure. On the other hand, the political economy of stigma rewards those who procure such narratives, such as medical practitioners, and circulate these narratives for public consumption, either in publications or in professional education settings. While not all narratives of illness and disability circulate within the political economy of stigma (for instance, can a doctor living with HIV treating patients living with HIV be neatly encompassed in the binary positionalities of the political economy of stigma? How about a doctor disabled by Parkinson’s treating HIV patients?), the political economy of stigma as an apparatus for analysis can help us understand why some memoirs are more popular than others, why some patient case studies are written about by doctors, and why mainstream reader interpretation remains entrenched in stigmatizing tropes, such as pity and triumph, elaborated on frequently by disability life-writing theorists.
Cuprins
Contents
Acknowledgments
Introduction Disability, HIV, and the Political Economy of Stigma
Part I The Neoliberalizing of Narrative
Chapter 1 Producing Memoir within The Political Economy of Stigma
Chapter 2 Writing Labor, Writing Privilege in HIV Memoir
Part II The Privilege of Privacy
Chapter 3 Diagnostic Reading and the Limits of Disability Memoir
Chapter 4 Privacy, Bioethics, and Narrative Medicine
Part III Beyond the Parallel Chart
Chapter 5 Work, Disclosure, and the HIV Origin Story
Chapter 6 Power, Resistance, and Differential Reading Practices
Conclusion Debility, Disability, and Reading for Unruly Subjectivity
A Pandemic Post-Script
Appendix A Reading Group Bibliography
Appendix B Reading Group Discussion Guidelines
Works Cited
Index
Acknowledgments
Introduction Disability, HIV, and the Political Economy of Stigma
Part I The Neoliberalizing of Narrative
Chapter 1 Producing Memoir within The Political Economy of Stigma
Chapter 2 Writing Labor, Writing Privilege in HIV Memoir
Part II The Privilege of Privacy
Chapter 3 Diagnostic Reading and the Limits of Disability Memoir
Chapter 4 Privacy, Bioethics, and Narrative Medicine
Part III Beyond the Parallel Chart
Chapter 5 Work, Disclosure, and the HIV Origin Story
Chapter 6 Power, Resistance, and Differential Reading Practices
Conclusion Debility, Disability, and Reading for Unruly Subjectivity
A Pandemic Post-Script
Appendix A Reading Group Bibliography
Appendix B Reading Group Discussion Guidelines
Works Cited
Index
Descriere
Looks at HIV memoirs to analyze how we interpret and circulate narratives about disability, unveiling strikingly different reading practices between medical providers and those they treat.