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Down Syndrome and Kinship Futures in Jordan by Christine Sargent A Ambivalent Inheritance: Down Syndrome and Kinship Futures in Jordan By Christine Sargent A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy (Anthropology) in the University of Michigan 2018 Doctoral Committee: Professor Andrew Shryock, Chair Associate Professor Fida Adely, Georgetown University Associate Professor Amal Hassan Fadlalla Associate Professor Krisztina Fehervary Associate Professor Elizabeth F.S. Roberts Christine Sargent [email protected] ORCID: 0000-0001-8519-2483 © Christine Sargent 2018 Acknowledgments The daunting task of writing this dissertation still seems infinitely easier than attempting to thank everyone who has stayed with me over the many twists and turns of the project. The advisor-student relationship is a delicate and curious thing that requires mutual care and respect. I am immensely grateful to Andrew Shryock for his support, humor, wisdom, and snark – all of which were necessary for keeping me out of my head and grounded in my ethnographic data. Kriszti Fehervary pushed me to think more carefully about the larger anthropological stakes of my work, while also reminding me to keep breathing. Liz Roberts signed onto my committee at a later stage; I have and will continue to benefit from her incisive feedback and immensely creative mind. Fida Adely’s keen ethnographic sensibility forced me to think carefully about my positionality and the nature of the claims I make. Amal Fadlalla offered her sharp, inter-disciplinary perspective on morality, gender, and sexuality when I most needed it. Lara Deeb and Pardis Mahdavi have supported me since the very beginning of this journey. The Department of Anthropology at the University of Michigan is home to brilliant minds who just also happen to be kind and caring mentors and friends. Damani Partridge, Jason de León, Scott Stonington, Matt Hull, Holly Peters-Golden, Abby Dumes, Ana Vinea, Zhiying Ma, and Ellen Rubinstein all contributed to this dissertation in its various stages. My cohortmates Michael Prentice, Chip Zuckerman, and Brady G’Sell remained steadfast allies from Year One through Year n, while Elizabeth Johnson provided friendship, solidarity, and wine. Geoffrey Hughes, Lamia Moghnieh, Nama Khalil, and Bridget Guarasci offered advice and wisdom during my most challenging moments, both in the field and while writing up. Allison Caine ii provided unfailing logistical, editorial, and life support. Fellowships with the Institute for Research on Women and Gender and the Institute for the Humanities allowed me to get critical chapter drafts off the ground and into the arms of more capable colleagues. Samiyya Ayyash and Wael Fararjeh helped me wade through my audio materials. A research award from the Fulbright (IIE) U.S. Student Program provided me with the financial means to conduct my primary fieldwork and also facilitated key connections with peers and research mentors. Alain McNamara continues to carefully protect and nurture this this amazing program, allowing it to flourish under difficult global circumstances. Eda Pepi provided me with a home and emotional sustenance. Rayya El Zein and I laughed our way through the moments that made us want to cry. Susan MacDougall helped me navigate missteps and mistakes with her unparalleled powers of perception. These exceptional friends and scholars continue to read and engage with my work, and I could not ask for a more generous or demanding audience. My Jordanian interlocutors and friends deserve the lion’s share of my thanks. Imm Zahra literally made this project possible. Hiba and Kawthar graciously humored my entrance into their lives. Reem opened her doors and never failed to include me in her plans. Dunia and her family offered me a place to call home and come back to. The families and individuals who participated in my research offered candor, warmth, and hospitality beyond measure. I hope I have done them justice, and I alone am responsible for any faults or misinterpretations in this text. My amazing family has always offered encouragement and enthusiasm, and they repeatedly forgave me so spending so much time far too far away from them. My final thanks go to Sadie, for being a good dog, and to Travis, has who supported and quite literally sustained me with food, love, and copy-editing. iii Table of Contents Acknowledgments ............................................................................................................................... ii Note on Language ............................................................................................................................... vii Abstract ................................................................................................................................................ viii Chapter 1. Introduction ...................................................................................................................... 1 I. Counting disability, making disability count ...................................................................................... 1 II. Kinship futures ........................................................................................................................................... 5 III. Narratives of change and progress ..................................................................................................... 9 IV. The al-Nur Society: A meeting space ............................................................................................... 17 V. Situating disability .................................................................................................................................. 24 VI. Economies of care: disability, religion, and kinship .................................................................. 34 VII. Ambivalent Inheritance ..................................................................................................................... 37 VIII. Organization of the dissertation .................................................................................................... 39 Chapter 2. Risk .................................................................................................................................... 43 I. Diagnosing Down Syndrome ................................................................................................................. 43 II. Neither sick nor normal ........................................................................................................................ 46 III. Marital prognostics ............................................................................................................................... 54 IV. Moral etiologies ...................................................................................................................................... 62 V. Past perfect futures: New temporalities of diagnosis ................................................................. 73 VI. Children of Adam ................................................................................................................................... 81 iv Chapter 3. Acceptance ...................................................................................................................... 83 I. Disability, modernity, and “good mothers” ..................................................................................... 83 II. Rejection .................................................................................................................................................... 86 III. Acceptance ............................................................................................................................................... 93 IV. Being-with disability as a collective project ................................................................................ 112 V. Acceptance? ............................................................................................................................................. 120 Chapter 4. Inclusion ....................................................................................................................... 124 I. The right of every child ......................................................................................................................... 124 II. Access and inclusion ............................................................................................................................ 126 III. Inclusive education: An overview .................................................................................................. 132 IV. Paying for inclusion: The commodification of education ....................................................... 137 V. “She cannot be educated”: Debating educational futures ........................................................ 142 VI. Costs and benefits: Thinking toward the future ........................................................................ 148 VII. Inclusion into what? .......................................................................................................................... 152 Chapter 5. Adulthood ..................................................................................................................... 156 I. Disjunctures ............................................................................................................................................. 156 II. Life stages and embodied asynchrony ..........................................................................................
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