The Social Life of TBI: the Embodied and Constructed Meaning of Moderate/Severe Traumatic Brain Injury in the United States
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The Social Life of TBI: The Embodied and Constructed Meaning of Moderate/Severe Traumatic Brain Injury in the United States Item Type text; Electronic Dissertation Authors Duncan, Austin W. Citation Duncan, Austin W. (2020). The Social Life of TBI: The Embodied and Constructed Meaning of Moderate/Severe Traumatic Brain Injury in the United States (Doctoral dissertation, University of Arizona, Tucson, USA). Publisher The University of Arizona. Rights Copyright © is held by the author. Digital access to this material is made possible by the University Libraries, University of Arizona. Further transmission, reproduction, presentation (such as public display or performance) of protected items is prohibited except with permission of the author. Download date 29/09/2021 11:35:50 Link to Item http://hdl.handle.net/10150/650832 THE SOCIAL LIFE OF TBI: THE EMBODIED AND CONSTRUCTED MEANING OF MODERATE/SEVERE TRAUMATIC BRAIN INJURY IN THE UNITED STATES by Austin W. Duncan __________________________ Copyright © Austin Duncan 2020 A Dissertation Submitted to the Faculty of the SCHOOL OF ANTHROPOLOGY In Partial Fulfillment of the Requirements For the Degree of DOCTOR OF PHILOSOPHY In the Graduate College THE UNIVERSITY OF ARIZONA 2020 2 THE UNIVERSITY OF ARIZONA GRADUATE COLLEGE As members of the Dissertation Committee, we certify that we have read the dissertation prepared by: Austin W. Duncan titled: and recommend that it be accepted as fulfilling the dissertation requirement for the Degree of Doctor of Philosophy. Eric D Plemons _________________________________________________________________ Date: ____________Dec 10, 2020 Eric D Plemons _________________________________________________________________ Date: ____________Dec 14, 2020 Monica Casper Brian E Silverstein _________________________________________________________________ Date: ____________Dec 14, 2020 Brian E Silverstein Susan Shaw _________________________________________________________________ Date: ____________Dec 14, 2020 Susan Shaw Final approval and acceptance of this dissertation is contingent upon the candidate’s submission of the final copies of the dissertation to the Graduate College. We hereby certify that we have read this dissertation prepared under our direction and recommend that it be accepted as fulfilling the dissertation requirement. Eric D Plemons _________________________________________________________________ Date: ____________Dec 10, 2020 Eric D Plemons School of Anthropology _________________________________________________________________ Date: ____________Dec 14, 2020 Monica Casper Gender and Women's Studies 2 Acknowledgements No anthropologist ever completes an ethnographic monograph in pure isolation. Granted, there have been several stretches during this odd period of social-distancing in response to the COVID-19 pandemic where I have not seen any other human being all day long. I just sat at home alone, feverishly working on my dissertation. But my committee, other advisors, family, and other non-romantic “significant others” were always a click or a call away for advice. I could not have completed this dissertation without their help. They have my undying gratitude and love, one and all. I also have to thank the thirty survivors, their friends and families, and the many policymakers and NGO staff who shared their stories and bits of their work and personal lives with me during my year of participant-observation. The Social Life of TBI may be about an injury, but it is told through their stories. I do not think I will ever be able to adequately repay them for their openness and candor. But I have targeted this dissertation and any products that come from it to helping raise awareness and improve services for survivors and their significant others. Finally, this dissertation was funded with a National Science Foundation Doctoral Dissertation Research Improvement Grant in Cultural Anthropology, a Brain Injury Alliance of Washington Survivor’s Higher Education Grant, and an Emil W. Haury Dissertation Completion Fellowship from the School of Anthropology at the University of Arizona. Initial presentations of my findings were funded by the School of Anthropology and the Sonoran University Center of Excellence in Disabilities at the University of Arizona. 3 Dedication This dissertation is dedicated to two groups of people. First I want to dedicate it my thousands of compatriot survivors in the city of Seattle and the millions more across the US, most of whom are unaware of the efforts of a small but significant band of individuals trying to make their lives better. I hope this dissertation and any products that come out of it will be able to help us all. Second, I dedicate this dissertation to those who have served as “significant others” in the seventeen-and-a-half years since I survived my own severe TBI. The second group includes most obviously my parents, as well as my brother, the Alias and De Vallejos, my dear friends and colleagues in the US and abroad, and the rehab teams who treated me in Egypt and Seattle. I could never have come this far without their assistance in my life “with TBI.” 4 Table of Contents Abstract ................................................................................................................................7 Chapter 1 – Introduction: From Injury to Impairment .........................................................9 Introduction .......................................................................................................................9 TBI as Injury ...................................................................................................................12 TBI as Impairment ..........................................................................................................18 TBI After Rehab .............................................................................................................24 Toward the Social Life of TBI ........................................................................................27 The Multiple Meanings of the Social Life of TBI ..........................................................34 Conclusion ......................................................................................................................39 Part 1: Individual Embodiments of TBI .............................................................................41 Chapter 2 – Living the Social Life of TBI: The Theory, Settings, and Methods of a Lightly Embodied Ethnography .........................................................................................43 Introduction .....................................................................................................................43 Blurring the Line Between Autoethnography and Ethnography ....................................45 Lightly Embodied Ethnography, Positionality, and the 3 Bodies ...................................51 The Social and Political Setting of a Lightly Embodied Ethnography ...........................54 Field-walks: Bridging Participant-Observation and Embodied Ethnography ................59 Preliminary Investigations ..............................................................................................63 Phase 1: Phenomenology, Narrativity, Particularity .......................................................64 Phase 2: Performativity, Significant Others, Case Study ...............................................68 Phase 3: Policy, Governmentality, Organizations ..........................................................72 Conclusion ......................................................................................................................77 Chapter 3 – “If you’ve seen one TBI, you’ve seen one TBI:” TBI as Narrative Particularity ........................................................................................................................78 Introduction .....................................................................................................................78 Constructing TBI Narratives ...........................................................................................80 Tethering TBI ..................................................................................................................86 The Particularity of TBI Narrative ..................................................................................97 Beyond the Injured Body ..............................................................................................110 Conclusion ....................................................................................................................116 Chapter 4 – “It Happens to the Whole Family:” Living “with TBI” as Complex Embodiment .....................................................................................................................118 Introduction ...................................................................................................................118 Embodying TBI ............................................................................................................120 Performing TBI .............................................................................................................133 The Disability of TBI ....................................................................................................144 Tetherball ......................................................................................................................156 Conclusion ....................................................................................................................161