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DISABILITY and the DESIRE for COMMUNITY by Eliza Chandler A

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DISABILITY and the DESIRE for COMMUNITY by Eliza Chandler A DISABILITY AND THE DESIRE FOR COMMUNITY by Eliza Chandler A thesis submitted in conformity with the requirements for the degree of Doctor of Philosophy Sociology Justice Education University of Toronto © Copyright by Eliza Chandler 2014 DISABILITY AND THE DESIRE FOR COMMUNITY Eliza Chandler Doctor of Philosophy Social Justice Education University of Toronto 2014 Bringing together disability studies with aspects of diaspora studies and feminist theory, and written through an interpretive methodology informed by hermeneutics and phenomenology, this dissertation explores the phenomena of “disability community.” I analyze how disability communities are enacted through a desire for disability and how such enactments bring new meaning to disability, community, and geography. I begin by exploring how meanings of geographic spaces and meanings of people, are produced in and through culture in entangled ways. I trace out a few historic examples of how disabled, racialized, and racialized people were culturally produced as ‘non-human’ (‘slaves,’ ‘fools,’ ‘freaks,’ and stateless bodies) by and within geographic sites such as slave ships, ships of fools, freak shows, asylums, and immigration offices. Turning to contemporary examples, I explore how particular environments are culturally produced as disposable, a production closely connected to how their (poor, racialized) inhabitants are produced. I attend to how disabled and racialized people are rendered not simply as undesirable citizens, but as bodies in a perpetual state of ‘unbelongingness,’ for we live in geographic spaces in which we are both undesirable, as manifestations of abnormalcy, and desirable, for the ways that such manifestations are necessary for the ii production of normalcy. Turning to the particular geographic space of a university campus, I engage stories generated in interviews. My interviews reveal that a sense of belonging in community is produced by feelings, rather than structures, common identities, or shared embodiments. I explore how enactments—fleeting, unstructured, and, perhaps, unexpected moments wherein people come together through a desire for disability of disability— of community can rework these terrains. I end by proposing that enactments of crip communities ‘crip,’ that is, open up with desire for the way that disability disrupts, ways that we understand disability and how we come together in community. iii ACKNOWLEDGMENTS This dissertation was produced out of my desire for crip community and was written for this community. From inception to final edits, every bit and piece of this work was inspired and supported by (my) others. Although there are too many to name, and lots of whom I don’t know the name, there are a few people who I must thank specifically. First to my committee: Thank you to Dr. Tanya Titchkosky, a most supportive, wise, patient, and creative supervisor, whose teaching, scholarship, and mentorship has taught me the theoretical possibilities for creating new meanings of disability and new ways of making disability matter, communally. Not only did Dr. Titchkosky teach me how to attend to the stuff of everyday life with wonderment and theoretical rigor, she taught me that my lived experience mattered, and it mattered to and for disability studies. Her countless and careful readings and re-readings of this work have immeasurably strengthened my scholarly practice. Thank you to Dr. Rinaldo Walcott for giving me the space to carefully think through the connection between disabled people and people of the diaspora in relations to questions of belonging, unbelonging, and home. Thank you, also, to Dr. Walcott for introducing me to and helping me to think with some of the key theorists and poets I engage throughout this work. Thank you to Dr. Susan Antebi for her close readings of my work and for her questions, which prompted me to think carefully through my theoretical engagement of the materiality I take up. To Dr. Carla Rice who, in addition to her thoughtful iv commentary on this work which brought an important feminist analysis to bare, I thank for giving me the opportunity to ‘put into action’ my thinking on community and for being open to and excited by discussions of fleeting communal enactments in the midst of our shared desire to create a community that would last. Thank you, too, for allowing me the space to rediscover my artistic practice and discovering disability arts anew. I thank Dr. Alison Kafer, whose close, careful, and highly insightful reading of my work and generous and critical questions I will carry with me as I move forward with this work and my scholarship. Thank you to Dr. June Larkin for graciously engagement my work and asking important questions that prodded at the essence of this work. Thank you to Dr. Rod Michalko from whom I learned how to listen carefully to the sidewalks around me, who challenged me to orient to community and crip community beyond simply a taken-for-granted and wholly knowable thing in the world. This challenge provided the initial and ongoing impetus for this work. Thanks to Dr. Michalko for teaching me how to treat disability as a teacher and provoke others to do the same, which is a most important lesson as I move along in academia. Thank you to my research participants for their generosity, their stories, their willingness to rethink community, and for challenging me to do the same. Thank you to my colleagues, who are more than just colleagues, for your robust support, collaborations, and friendship. Thank you for being an embedded part of my thinking, reading, and writing practices. For you engaging me and my work, and for your ongoing v enactments of community, my dissertation is more dynamic and alive. Thanks in particular to a few key members of my ‘sounding board’: Jijian Voronka, Erick Fabris, Katie Aubrecht, Kelly Fritch, Ryan Parrey, Kelly Munger, Anne McGuire, Sheyfali Saujani, Manulea Ferrari, Elisabeth Harrison, Kirsty Liddiard, Kathryn Church, Esther Ignagni, Melanie Panitch, Heather Norris, Kim Collins, Danielle Landry, Andrea White, Laura Thrasher, Fran Odette, Liz Brockest, Rachel Gorman, Mel Chen, and Kaitlin Noss. A heartfelt thank you to Sarah Snyder, for without her engagement, support, and belief in me and my work, and creating a warm home to do this work in, this project would not have been possible. Thank you to Patrick Drazen, who carefully read over this dissertation when I needed it the most. Deep thanks and love to my friends who inspire new meanings of disability and community. Thanks to a special few who offered consistent support, provided me with an unwaveringly comfortable and love-filled home throughout this process, and whose reminders to have fun and understandings when I could not, sustained me: Erin Bosenberg, Carrie Singh, Jijian Voronka, Erick Fabris, Jes Sachse, Lindsay Fisher, Chris Treblicock, John Buchan, Yvette Laing, David McCaughna, Anita Block, Kirsty Liddiard, Sergi Romero, Cara Eastcott, Janna Brown, Jeremiah Bach, Denis Calnan, Jen Marchand, Ryan Parrey, Kelly Munger, Jac Alyanakian, Amber Reid, Zack Harper, Jan Kavanaugh, Emily Cameron, Sheyfali Saujani, Tanya Workman, Dawn Matheson, Kelly Fritsch, Katie Aubrecht, Anne McGuire, Cody Trojan, Healy Thomson, Andrea White, Jan Derbyshire, Manulea Ferrari, Fran Odette, and Lorna Renooy. Thank you to David Quarter for his relentless kindness, support, warmth, and care. To my family— my mom, vi my dad, Frani, and Devon for giving the foundation of love, support, and trust from which I could take this risk. To my family— Geoff Hughes, Sarah Snyder, and Jessi Dutton whose constant insight, humor, love, and ability to provide levity mean the world to me. And finally, to Mayine Dutton who came into the world just when we needed him. Thank you for showing me a love that really is ‘so big.’ This research has been supported by an Ontario Graduate Scholarship, a Keith A. McLeod Fellowship, a New College Senior Doctorial Fellowship, and a doctoral fellowship from the Social Sciences and Humanities Research Council of Canada. I am deeply grateful for this support. vii Table of Contents Abstract ii Acknowledgements iv List of Appendices x CHAPTER ONE 1 An Introduction to Storying Difference Different Stories of Difference 4 Different Stories, Stories of Difference 15 Mapping Critical Clarifications 22 The Challenge of Crip Community 30 Overview of Chapters 39 CHAPTER TWO 50 Mapping Difference Storying the Land 56 Tangled Knots of Humanness and Geography 60 Geographic Stories 91 The Difference that Debility Makes 102 “Blinded Knowledge” 111 Maps and Stories 121 CHAPTER THREE 126 Stories from the Down Below Listening to Stories: A “Compelling Invitation” 128 Generating Stories 137 Communities as Structures and Feelings 143 Communal Dynamics 167 viii CHAPTER FOUR 181 Desiring Disability Desiring Disability, Narrating Community 182 Enactments of Community 193 Generating Feelings 202 CHAPTER FIVE 223 Narrating Crip Futures Producing and Productive Stories 229 Disabling Futures 238 Crip Futures 242 References 248 Appendices 265 ix List of Appendices Appendix A: Recruitment Letter 265 Appendix B: Letter of Informed Consent 266 Appendix C: Interview Guide 268 Appendix D: Ethics Approval (2013) 269 Appendix E: Ethics Approval (2012) 270 Appendix F: Ethics Approval (2011) 271 x The truth about stories is that that is all we are…. - Thomas King, 2003, p. 2 The spoken word is a gesture and its meaning, a world. - Maurice Merleau-Ponty, 1945, p. 1 xi Chapter One: An Introduction to Storying Difference I was walking home from school one night on a busy street in downtown Toronto. As I was crossing the street, my walking pace— perhaps slow and somewhat shaky— synched up with another’s. Previously apart, we were now communicating with each other through our gait, swinging arms, and sideways looks across the sidewalk. We began to walk together. Our togetherness was not constituted by a sameness in our gait, nor mimicry, not even a stated commitment to stay together in the midst of the busyness of the sidewalk.
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