Dissertation-Flaherty-Attempt 1
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UNIVERSITY OF CALIFORNIA Los Angeles Growing Old Alone: Disregard, Care and End of Life in St. Croix, U.S. Virgin Islands A dissertation submitted in partial satisfaction of the requirements for the degree Doctor of Philosophy in Anthropology by Devin St Clair Flaherty 2018 © Devin St Clair Flaherty 2018 ABSTRACT OF THE DISSERTATION Growing Old Alone: Disregard, Care and End of Life in St. Croix, U.S. Virgin Islands by Devin St Clair Flaherty Doctor of Philosophy in Anthropology University of California, Los Angeles, 2018 Professor Christopher J. Throop, Chair This dissertation addresses possibilities for aging and end of life on the Caribbean island of St. Croix in the unincorporated territory of the U.S. Virgin Islands. Based on fourteen months of ethnographic fieldwork in the territory, the dissertation focuses on experiences of focal participants near the end of life, alongside the familial, institutional, and broader political and historical contexts shaping those experiences. Central to all of these domains, I argue, is disregard. Advancing disregard as a central analytic and phenomenon for understanding aging and end of life on St. Croix, I present a theoretical framework that considers the work of disregard and attention through time—over historical time at the level of the state and over the life course at the interpersonal level. I theorize disregard as manifesting through bureaucratic, !ii interpersonal, and experiential modes, and illustrate these different modes with ethnographic cases. Section I, “Introduction and Theoretical Framework,” introduces the study’s aims and methods, situating it within literatures in global aging and the anthropologies of care and end of life, and then advancing a theory of disregard for use within anthropology. Section II, “A History of Disregard,” presents a history of St. Croix from European colonialism to the present, arguing that St. Croix has for centuries been positioned as a disregarded space on the periphery of the nation. Section III, “Bureaucratic Disregard” begins the ethnographic portion of the dissertation through an exposition of the landscape of senior healthcare and services on St. Croix at the time of research followed by two ethnographic cases that show how disregard is disclosed through aspects of Medicare bureaucracy that deeply impact end-of-life possibilities for older adults on the island. Section IV, “Embodiments of Bureaucratic Disregard” presents the case of one woman living on St. Croix whose final months were shaped in large part by the forms of bureaucratic disregard described in the previous section. Section V “Caregiving and Intimate Forms of Disregard” turns to interpersonal forms of disregard through addressing a common caregiving structure on St. Croix in which only one family member, in the midst of large families, is providing caregiving for an older relative. Section VI “Experiencing Disregard,” turns to the experiential workings of disregard through examining one woman’s embodied, mooded experiences of disregard during the last three weeks of her life. In the conclusion, in addition to a brief integration of the dissertation’s arguments, I speak to how the effects Hurricane Maria—a storm which hit St. Croix one year after fieldwork ended—has dramatically re-shaped possibilities for care on the island. I focus in particular on !iii how the process of recovery discloses the ongoing role of disregard in shaping experiences and possibilities for older adults on St. Croix. !iv The dissertation of Devin St Clair Flaherty is approved. Linda C. Garro Douglas W. Hollan Elinor Ochs Keith McNeal Christopher J. Throop, Committee Chair University of California, Los Angeles 2018 !v To my parents, for this life And to Kito, for every day !vi TABLE OF CONTENTS Section I: Introduction and Theoretical Framework Chapter 1: Introduction: Growing Old Alone ..............................................................................................1 Chapter 2: An Anthropological Theory of Disregard .................................................................................24 Section II: A History of Disregard Prologue .......................................................................................................................................................45 Chapter 3: From Santa Cruz to St. Croix: A Colony Under Seven Flags (1493-1917).............................. 48 Chapter 4: The American Era (1917-1980) ................................................................................................78 Chapter 5: Recent Developments (1980-2016) ........................................................................................111 Section III: Bureaucratic Disregard Prologue .....................................................................................................................................................128 Chapter 6: Landscape of Care and Services for Older Adults on St. Croix, 2015-2016 ..........................132 Chapter 7: Hospice, Durable Medical Equipment, and Bureaucratic Disregard ......................................180 Chapter 8: Illegibility as a Mechanism of Bureaucratic Disregard: Efforts to Solve the “DME Crisis” .........................................................................................................................214 Section IV: Hospice and the Embodiment of Bureaucratic Disregard Prologue .....................................................................................................................................................239 Chapter 9: Becoming a Hospice Patient on St. Croix ..............................................................................244 Chapter 10: Health Crises in Hospice Care ..............................................................................................281 Section V: Caregiving and Disregard: Sole Family Member Caregivers on St. Croix Prologue .....................................................................................................................................................315 Chapter 11: Local Understandings of Sole Family Member Caregiving .................................................320 Chapter 12: Experiences of Sole Family Member Caregiving .................................................................358 !vii Section VI: Experiencing Disregard Prologue .....................................................................................................................................................392 Chapter 13: Care, Food, and Attention over the Life Course ...................................................................395 Chapter 14: “My Family is Cooking and They’re not Bringing me Any Food”: Ms. Hanks’s Experiences of Disregard at the End of her Life ...............................................418 Chapter 15: Conclusion: Disregard and Aloneness in an Aging World ...................................................442 APPENDIX A: Research Sites ..................................................................................................................461 APPENDIX B: Research Design ..............................................................................................................463 APPENDIX C: Focal Participants ............................................................................................................471 APPENDIX D: Additional Research Activities ........................................................................................477 References .................................................................................................................................................483 !viii LIST OF FIGURES Figure A Apartments on the grounds of Whim Gardens ....................................................165 Figure B The kitchen of a recently vacated apartment at Sunset Palms .............................167 Figure C Apartments on the grounds of Flamboyant Gardens ...........................................168 Figure D A shot of Loving Home from the expansive backyard ........................................170 Figure E A bedroom at Loving Home ................................................................................171 Figure F The Charles Harwood Medical Center ................................................................172 Figure G The Juan F. Luis Hospital (“JFL”) .......................................................................173 Figure H Ms. Hanks’s neighborhood ..................................................................................397 Figure I Ms. Hanks’s nightstand ........................................................................................427 !ix ACKNOWLEDGEMENTS First and foremost, I am deeply thankful to everyone on St. Croix who became involved in this project. I owe my first thanks to the woman I call “Gloria,” for taking me under her wing and bringing me into the world of hospice care on St. Croix. There is so much that she showed me and taught me that exceeds what I was able to represent in this dissertation. On the first day I met Gloria, she did many things that changed the course of my research—and my life. One of them was introducing me to the people who would become my Crucian family. My second thanks goes to them. Crucian momma, Crucian dad: you housed me and fed me and loved me for no good reason. You opened your lives and your hearts (and your house!) to me—and then to us —and I will never really understand why. We came into each other’s lives just when we needed one another. I