The ability contract full dissertation

            The Ability Contract: The Ideological, Affective, and Material Negotiations of Women Living with HIV Dissertation   Presented in partial fulfillment of the requirements for the Degree Doctor of Philosophy in the Graduate School of The Ohio State University       Allyson Lesley Day, MA Graduate Program in Women’s, Gender and Sexuality Studies The Ohio State University 2014 Dissertation Committee: Dr. Wendy Smooth, Co-Advisor Dr. Brenda Brueggemann, Co-Advisor Dr. Shannon Winnubst     Copyright by Allyson Lesley Day 2014           Abstract This dissertation project theorizes the ability contract as a means for understanding the experience of women living with HIV in the United States.

I understand the ability contract as the triad of labor-utility-predictability that is central to the construction of the liberal citizen-subject, extending the work of John Locke, Carol Pateman, Charles Mills and Shannon Winnubst. The theory of this project is rooted in my original field research; during the 2012-2013 academic year, I spent six months facilitating a reading group for women living with HIV. Together, we read popular memoirs written by women with what I have termed invisible episodic illness, such as lupus, early stage m., chronic depression and HIV. Participants in the reading group used these books as a catalyst for discussing their daily negotiations of labor, family and the medical industrial complex in relation to disability identity.

I also conducted one-on-one preliminary and follow-up interviews. What I found was that my research participants all resisted a disability identification, despite many of them accessing disability resources. They also all closely connected their identity not to their current employment conditions, but to their prediction of how they will ii             be able to work in the future. This prediction of becoming a wage-earner was the primary reason for their dis/identification with disability.

What explains this close connection of disability with future labor? And what is the relationship between labor and disability at the intersection of gender, race, class, and (medical) citizenship? In order to address these questions, I developed a three-tier reading group research method; in my dissertation, I analyze life narratives of women living with HIV, both the narratives of the women in my group and published narratives; I also analyze the reading group reception to those life narratives; finally, I re-read social contract theory alongside American multiracial feminisms, disability theory, autobiographical theory, and affect theory to understand the Ability Contract as affective, material and ideological; this interpretation leads me to an analysis of narrative medicine, where I argue against the fetishization of narrative within the medical industrial complex. iii             For Catherine iv             Acknowledgments My gratitude to my Dream Team; in particular, Brenda Brueggemann, who has been with this project since its inception in my first Disability Studies course and whose enthusiasm for this project and for the field of Disability Studies has inspired not just this work but an entirely transformative way of looking at the world; Wendy Smooth, whose insistence on tangible social justice work and critical intersectionality has left me questioning my questions, providing deep guidance that will no doubt sustain a future career worth of deep holes; and finally, Shannon Winnubst, who took a risk on a wayward graduate student and asked the tough questions of evidence and scope. Thank you! Special thanks to the Elizabeth D. Gee Grant Committee and Arts and Humanities Graduate Grant Committee for financially supporting this project.

I also want to thank those who have been informal mentors and intellectually generous throughout my career at Ohio State, including: Cricket Keating, Kimberly Springer, Guisela Latorre, Jenny Suchland, Judy Wu, Kimberly Springer, Linda Bernhard, Lynn Itagaki, Mytheli Sreenivas, and Rebecca Wanzo. Thanks to my colleagues and peers, including Amanda Rossie, Andrea Guilino, Brena Yu-Chen Tai, Dawn Miles, Deema Kaedbey, Haley Swenson, Judy Rodriguez, Julia Istomina, Justin Acome, Lindsay Bernhagen, Lois v             Kwa, Meredith Lee and Stacia Kock. Thanks, too, for a killer WGSS administrative team: Andy Cavins, Lexie Beer, Lynaya Elliot, and Tess Pugsley. Thanks to the Society for Disability Studies community, especially those colleagues and mentors who have taken the time to sit with this project: Aimi Hamraie, Allison Kafer, Kate Caldwell, and Sami Schalk.

I look forward to many more projects! Beyond thanks to the community that saw this project in its earliest phases at Simmons College: Prof Beck Thompson, Prof Jyoti Puri and Prof. And to my radical, pitcher- sharing feminist collective when we were all first reading Foucault together as MA students: Brenda Sanya, Candace Cheatham, Elizabeth Lehr, Gwen Warman, Jess Guerrero, Meiver De La Cruz, and Shana Russell. And finally, for Catherine Harrington, who shared the pitchers, the poverty, and the celebrations. This project is as much yours.

vi             Vita 2005……………………………………………………BFA Creative Writing/BA Political Science The University of Maine at Farmington 2009……………………………………………………MA Gender and Cultural Studies Simmons College, Boston, MA PUBLICATIONS “Emobodied Triumph and Political Mobilization: Reading Marvelyn Brown’s The Naked Truth: Young, Beautiful and (HIV) Positive” in a/b: Journal of Autobiography, 28. Emily Hipchen and Ricia Chansky, Chapel Hill, NC. “Toward a Feminist Reading of the Disability Memoir: The Critical Necessity for Intertextuality in Marya Hornbacher’s Wasted and Madness” in Disability Studies Quarterly,31:2. Brenda Brueggeman and Scot Danforth.

FIELDS OF STUDY Major Field: Women’s, Gender and Sexuality Studies vii             TABLE OF CONTENTS Abstract……………………………………………………………………………………………………………………………………………ii Dedication…………………………………………………………………………………………………………………………………………iv Acknowledgements…………………………………………………………………………………………………………………………v Vita…………………………………………………………………………………………………………………………………………………………vii Introduction: Illuminating Parameters and Politicizing Feminist Disability Methodology……………………………………………………………………………………………………………1 Chapter 1: Consciousness and Differential Identification: Introducing the Ability Contract…………………………………………………………………………………16 Chapter 2: The Ability Contract as Ideological: The Circulation of Autobiography and Subjectivity……………………………………52 Chapter 3: The Ability Contract as Affective: Women, Reproductive Labor and Early HIV Narrative……………………………………93 Chapter 4: The Ability Contract as Material: Women’s Negotiations of Labor, HIV and Disability Identity…………149 Chapter 5: Negotiating the Labor of Writing…………………………………………185 Chapter 6: Narrative Medicine, The Ability Contract, and the Fetishization of Narrative within the Medical Industrial Complex………………………………………………………………………………………………………………………………….……………222 Conclusions: Neoliberalism, the Hermeneutics of HIV, and The Future of the Ability Contract…………………………………………………………………………258 References…………………………………………………………………………………………………………………………………………267 Appendix A: Initial Open-Ended Interview Script and Demographic Questionnaire…………………………………………………………………………………………………………………………………281 Appendix B: Booklist…………………………………………………………………………………………….………………284 Appendix C: Reading Group Questions and Follow-Up Interview……………………………………………………………………………………………………………………………………………286 viii             Introduction: Illuminating Parameters and Politicizing Feminist Disability Methodology The Beginning It is possible that this project really began when I was a 19-year old poet, taking my first creative nonfiction class and becoming enraptured by life writing. While I did complete my BFA in creative writing, I was never totally sold on understanding nonfiction (or any literature) from a strictly formalist context- my women’s studies and political science classes gave me more tools for interrogating how literature can be mobilized for social justice. In many ways, this project began when I first read Audre Lorde’s The Cancer Journals, an origin story that I share with many feminist projects about illness and disability. As a white working class lesbian hospitalized for bulimia nervosa, I was consistently being given scripts for my illness (I was nieve and taking media’s misogyny too far, I hated myself and needed men to love me, my mother was too controlling, I was just an out of control addict) that did not seem to fit my reality.

My hospitalization came after a few emergency room visits that indicated cardiac abnormalities and severe internal bleeding of 1           my esophagus and stomach. At the time of my first admission, the director of the program told me that my esophageal bleeding was encroaching on my aorta artery and that another purge could kill me. Every eating disorder book that I had been devouring was leaving me hungry for reasons that I did not quite understand. All I knew was that the eating disorder narrative that I had learned to perform in order to access treatment could not be reconciled with my actual, lived experience.

My experience with bulimia as a white, working class lesbian was not understood within the eating disorder treatment framework. The narrative I was given was a narrative of privilege that I, simply, do not have nor understand. It was Lorde who first spoke to me about this schism between actual lived disease experience and the narrative we are taught by medical professionals and the hegemonic white, middle and upper class society as a whole. Lorde taught me about the importance of life narrative in disability.

Ultimately, my mental illness (which as taken various DSM diagnosis over the years) caused several long-term physical impairments, a connection that brought me to the young field of Feminist Disability Studies. During my MA work, following my own exploration of life writing with my BFA portfolio, I began an excavation of Lorde’s The Cancer Journals, finding theories of the collective body 2           established by other black feminist writers thinking about Cancer, writers like Toni Cade Bambara. In tracing a geneology of these ideas, I discovered, through the writing and advocacy of Essex Hemphill and Cheryl Clarke, a connection between understandings of cancer and HIV. The combination of queer theory and black feminist thought provided me with the deep theoretical tools for excavating these connections but it also left me hungry to reach beyond the page, to understand the experience of women who do not have the material and intellectual privilege to publish their work.

When I began my PhD Program, I began to knit connections between mental illness and chronic illness like HIV or lupus, seeing them as sharing a messy corner of feminist disability studies, one with permeable boundaries and incongruous edges that I have come to label invisible episodic conditions. I had grand ideas about painting this corner with broad strokes, writing a comparative and exhaustive project about all invisible episodic conditions and yet, I kept coming back to HIV. The literature on women and HIV was growing the works of Michelle Berger and Patti Lather being particularly influential, but no one was discussing women and HIV within disability studies or the feminist health movement. I began volunteering at the local AIDS Service Organization, while I read broadly and taught women’s health courses.

My students, quarter after quarter, continued to 3           surprise me with their interest in women and HIV and my own collection of teachable source material only reinforced that gaps in feminist scholarship. It began to seem as if my project as choosing me. Working with people living with HIV has also given me the opportunity to work with people that I have always understood as a part of my chosen family, the mentors that took me in when my father, a conservative evangelical minister, refused to support me after I came out. HIV is not my illness and yet, HIV is very much mine.

HIV has co-constructed a radical queer community that gave me my tools for recovery and, quite literally, saved my life. The Methodology Once I decided to focus my work on women living with HIV, I kept asking about identity and how women with HIV identify—is HIV a part of their identity, the way it was claimed by some queer activists in the 1980’s and 1990’s? Is disability a part of these women’s identities? Is there space for coalition-building between women with HIV and women with other recognized disabilities? Do they share experiences? Does how one identifies affect what services one accesses? Does a woman living with HIV need to understand herself as part of a disability community in order to access disability resources? Because I am asking directly about identity in my project, I realized very early on (and this is 4           actually what was so exciting to me) that I would need to really develop a research model that could address questions of identity that are not just one-time, yes or no questions. I knew, from the outset, that identity is a lot more complicated than that.