LIFE AFTER THE SCANDAL: Thalidomide, Family, and Rehabilitation in Modern Canada, 1958-1990 By Christine Anna Chisholm, BA (Hons), MA 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 History Carleton University Ottawa, ON © 2019, Christine Chisholm Abstract In the late 1950s and early 1960s, the drug thalidomide was prescribed to pregnant women around the world as a sedative to combat morning sickness. Instead of being “completely safe,” as advertisements had promised, thalidomide caused “deformities” in children born to mothers who took the drug. In Canada thalidomide was licensed for prescription use on April 1, 1961 and remained on the market until the spring of 1962, despite knowledge of the possible connection between the medication and birth defects in newborns. This dissertation focuses on thalidomers’ lives after the scandal. It argues that in Canada, thalidomiders’ experiences in the aftermath of the tragedy demonstrate that their disabled bodies remained political and public bodies, even in the most intimate and private aspects of their lives. Drawing on disability history and medical history, this dissertation extends the approach of patient histories to include thalidomiders’ social lives and disability as a lived experience. Because disability is always political, this case study of thalidomiders in Canada builds on the feminist critique of a public/private dichotomy and suggests that people living with disabilities do not simply blur but always transgress the public/private divide. Through an examination of rehabilitation, school, families, sexuality and reproduction, this dissertation demonstrates that thalidomiders’ lives were political as they, both inadvertently and intentionally, confronted notions of normality and engendered the limits of socially-prescribed norms. In addition, their very existence challenged ideas of humanness and belonging, and their lives were defined by their conscious and subconscious resistance to notions of abject bodies. Canadian thalidomiders have challenged the cultural importance of physical “normality” in Canada through everyday performances, and counteracted deep-seated fears of difference and “the abnormal” through their presence in communities. This dissertation is the ii first study to use oral history methodology to bring the voices of Canadian thalidomiders to the attention of scholars. iii Acknowledgements Throughout the research and writing of this thesis, I received an incredible amount of support from those around me. Without this support I could not have completed this project and I am forever thankful. The Department of History at Carleton University has been a welcoming and nurturing home for my studies. Not only has the financial assistance of the University and the Department been critical to my studies, but the collegial way in which I received academic guidance from Professors and peers alike has been central to my success. I also received important assistance from archivists, librarians, and staff at each of the archives and libraries I visited. Special thanks to Joan White who has, time and time again, made sure all my administrative requirements were in order. Dr. Jennifer Evans, Dr. Susan Whitney, and Dr. Dominique Marshall have supported me along the way. At one point or another, each of them has posed questions to me that have helped me look beyond my initial understanding of this project and for that I am grateful. They have also provided letters of recommendation that have helped me receive funding or access to archives when I required their support. Dr. Patrizia Gentile joined my dissertation committee alongside Dr. Dominique Marshall and they both deserve recognition for their thoughtful reviews and suggestions. Each of them dedicated their time and expertise to supporting me. I have been fortunate to be able to draw on the knowledge of such wonderful scholars. I would also like to thank Dr. Dagmar Herzog, who provided me with thoughtful questions during my dissertation defence. Unbeknownst to her, I began my graduate studies by iv writing a historiographical essay about her and her academic work. Having her on my defence committee was an honour. Her insightful questions during my defence were both challenging and stimulating. I gratefully acknowledge the Nursing History Research Unit Scholarship, which I received in 2014/15, for the financial support. Specifically, this scholarship gave me the opportunity to complete a research trip to Germany and have ample time to search the archive in a thorough manner. With the scholarship, I was able to devote my time undividedly to the research and writing stages of this thesis. The Nursing History Research Unit also provided room for feedback and peer support during our meetings. Furthermore, this research was supported by the Social Sciences and Humanities Research Council of Canada, for which I am thankful. Thank you to all of those who agreed to speak with me for this research project. I appreciate your willingness to share your experiences. The individuals interviewed for this dissertation were wonderful about sharing their stories so that I and others may learn from them and understand better this important history. They made themselves vulnerable in a way that I admire and appreciate. I apologize to anyone who would have spoken with me, but whom I did not manage to contact. Above all, my supervisor Dr. Susanne Klausen deserves my thanks. She went above and beyond lending her expertise and criticism to move the project along. Her enthusiasm and dedication to her work has inspired me. Her patient revisions have made this dissertation what it is today. Her kind words encouraged me when I felt overwhelmed. Her role in allowing me to succeed was instrumental. I could not have wished for better guidance. Susanne, you are brilliant! v Outside of the academic realm this thesis benefitted from the loving support of my parents, Cornelia and Ralf. Not only was it their loving encouragement that allowed me to always want to better myself and aspire to achieve my goals, they taught me about the value of dedication and hard work. Not only that, but I have been fortunate that they not only knew to teach me about work ethic, but they also, time and time again, reminded me to be forgiving with myself when I became too driven. It is because of them that I was able to finish this project. I am also thankful for the support of my husband Tim, who believed I could do this when I did not. Like my parents, Tim encouraged me to pursue whatever I wanted to be in life without limitation. His unfailing support throughout my years of study mean the world to me. Lastly, I would like to acknowledge my daughter Clara, whom I want to make proud. vi This research was supported by the Social Sciences and Humanities Research Council of Canada. vii Table of Contents Abstract ........................................................................................................................................... ii Acknowledgements ......................................................................................................................... iv Table of Contents ......................................................................................................................... viii List of Illustrations ......................................................................................................................... ix Introduction: An Oral History of Thalidomide on a Borderland of Scholarly Inquiry ................... 1 Historiography ........................................................................................................................ 7 Methodology ......................................................................................................................... 29 Chapter Overview ................................................................................................................. 50 Note Regarding Terminology ................................................................................................ 54 Chapter 1: The Canadian Thalidomide Tragedy ........................................................................... 55 Part 1 – Thalidomide and Institutional Settings .......................................................................... Chapter 2: Rehabilitation and Artificial Limbs ............................................................................ 99 Chapter 3: Thalidomide and Canadian Education ...................................................................... 142 Part 2 – Thalidomide and Family Life .......................................................................................... Chapter 4: Childhood .................................................................................................................. 167 Chapter 5: Sexuality, Intimacy, and Abuse ................................................................................ 207 Chapter 6: Reproduction ............................................................................................................. 239 Conclusion .................................................................................................................................. 266 Bibliography .............................................................................................................................. 275 APPENDIX A: Ethics Clearance Forms....................................................................................