Structured Forgetting and the Social Organization of Kidney Exchange in Ontario
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Structured Forgetting and the Social Organization of Kidney Exchange in Ontario by Lindsey McKay, B.A., M.A. A thesis submitted to the Faculty of Graduate and Postdoctoral Affairs in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Sociology with a Specialization in Political Economy Carleton University Ottawa, Ontario © 2015, Lindsey Colleen McKay ii Abstract Theoretical resources regarding the creation of objects and orientations in ideology and material practice are drawn on to develop an original, theoretical account of organ transplantation. This analytical lens is then used to advance understanding of the social relations that enable and inhibit the exchange of kidneys for transplantation. The argument is that customary claims about how to increase organ donation, set within an altruism versus market framework, deflect attention from a significant variable: the legitimacy and limits of removing kidneys from their owners – in other words, alienability. Two sets of rules are revealed, with one set, the rules of altruism, requiring and eliciting public engagement, and the other set, the rules of alienability, being pushed by experts within their realm of authority. Both sets of rules demarcate boundary lines through a fundamental tension between recipients, intermediaries and donors that is demonstrated to be imbalanced by a recipient-centric orientation. As a result, public discourse is focused on a small set of variables and distanced from a far more complex set of dynamics predominantly emerging from the relationality of donors and recipients. Seeing the deflection of attention challenges both the legitimacy of conventional wisdom about transplantation, especially as it informs public policy, and the common view of a complete distinction differentiating altruism from capitalist modes of body part exchange. It also raises new questions about persuasion and public knowledge that trouble altruism, and shows how efforts to alleviate the suffering of some, (potential) recipients, has largely unintentionally led to a structured forgetting of the suffering of others, (potential) donors. This is demonstrated for both deceased donation and living donation using a case study of one organ, the kidney, in one jurisdiction, Ontario, Canada, from 2000 to 2014, with a focus on donors and intermediaries. iii Acknowledgements First and foremost, I am very grateful to the actual and potential donors and recipients of kidney and organ exchange for sharing their stories with me. Along the same lines, I am thankful to key informants in the field of organ donation and renal transplantation who found time within very busy schedules to meet with me. With respect to completing this project, I thank my parents, Sharon McKay and Bruce McKay, for refusing to give up on me. They deserve the highest praise for valuing scholarship enough to support this project through to the end. Such devotion translated into countless hours over two and a half years of various types of care work that sustained me, kept me on an even keel, and kept the kids alive and well. They have also been superb listeners, readers and editors. If I could, I would send them across the podium to collect my degree. I also thank my sisters and their husbands for their support. And, deep wells of gratitude go to my children, Vivien and Zoë, for learning the word dissertation at the age of two, being adaptable enough to be cared for by other people while I worked, and for bringing me and everyone around them tremendous joy. For striking the right balance between giving me the latitude to shape my own course and scholarly guidance, I thank my supervisor Dr. Wallace Clement. Dr. Andrea Doucet has been an invaluable mentor throughout the degree. I also thank my committee members for their contributions, professors Daiva Stasiulis and Alexis Shotwell, as well as Carlos Novas for his feedback on earlier stages of the work. At Carleton University, my journey was also made far better by the calm competence of the departmental Graduate Administrator, Paula Whissell, and the services of the Interlibrary loans department. For being close by throughout the journey, I thank my cherished friends Carla Lam and Kalapi Roy. Moral support and stimulating discussions were also regularly on hand thanks to Christine Morris, Ersin Asliturk, Berrak Asliturk, Salimah Valiani, Tracey Lauriault, Sophie Matheiu, Susan Salhany, Sarah Peek, Leela Ramachandran, Katie Davidman, Katherine Pestieau, and Jill Wiwicharuk, among others. Two great people, Emre Uckardesler and Darryl Leroux, deserve special recognition for providing friendship as well as invaluable feedback and encouragement during various stages of the doctoral iv program. In addition to being solid friends, special recognition goes to the generosity of four wonderful people, Pippy Warburton, Will Ford, Velvet LeClaire, and John Hollingsworth, and their respective children, who made my dreams come true during the PhD, giving me the insight of trying to be a conscientious recipient. The paid care work provided by numerous highly skilled female workers supplied me with the hours needed to write the dissertation. I thank Samantha Lalonde, Denise Revell, Jessica Thompson, Emily Cerantola, Sara Cooper, and Lucy D’Angelo, as well as the staff at St Martin’s Manor, McMaster Students’ Union, and Today’s Family Early Learning Centres. For their help with transcribing, editing and formatting, I thank Christie Bowick, Suzanne Gallant, and Mary Anne Carswell. Generous financial support made it possible to complete the degree. For scholarships, I am grateful to Carleton University, the Social Science and Humanities Research Council of Canada, the Ontario Graduate Scholarship program, and the Eve Frankel Kassirer Memorial fund. I also thank the Canada Student Grant for Persons with Dependents, the Ontario Student Opportunity Grant, and the Ontario Student Assistance Plan. Finally, equal funds that made a crucial difference were received in kind through the Ontario government’s funding of the Hamilton Municipal Child Care Subsidy. v Table of Contents Abstract iii Acknowledgements ............................................................................................................ iv Table of Contents ............................................................................................................... vi List of Tables ...................................................................................................................... x List of Figures .................................................................................................................... xi List of Appendices ............................................................................................................ xii Glossary ........................................................................................................................... xiii Chapter 1 Introduction .................................................................................................. 14 1.1 Sociological Puzzles that Arise from Ontario’s Investment in Organ Donation ..... 15 1.1.1 Ontario as Emblematic ............................................................................................ 21 1.2 Relevant Scholarship and My Theoretical Approach .............................................. 26 1.2.1 Research Questions ................................................................................................. 27 1.2.2 Central Claim........................................................................................................... 28 1.2.3 Implications and Contribution ................................................................................. 28 1.3 The Study................................................................................................................. 29 1.3.1 Chapter Outline ....................................................................................................... 31 1.3.2 Biases, Premises and a Note to Readers .................................................................. 37 Chapter 2 Scholarly Context, Theory and Methodology .......................................... 39 2.1 Critical Scholarship: The Framework of the Gift and the Market ........................... 39 2.1.1 Altruism: Corrupted by the Organ Shortage ........................................................... 44 2.1.2 Capitalism Versus Altruism .................................................................................... 50 2.1.3 Beyond the Binary ................................................................................................... 54 2.1.4 Philippe Steiner: “The Organizational Gift” ........................................................... 59 2.1.5 Gaps in the Literature .............................................................................................. 65 2.2 Theoretical Tools ..................................................................................................... 66 2.2.1 Processes of Objectification: Theories of ‘Things’ ................................................. 68 2.2.2 Knowledge as Dominant and Directional ................................................................ 72 2.2.3 Thinking Through Organized Altruism ................................................................... 73 2.2.3 Democracy ............................................................................................................... 77 2.3 Methodology: An In-depth Case Study of Kidney