Institutions, Families, and the Construction of Difference
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NARRATIVES OF SEPARATION: INSTITUTIONS, FAMILIES, AND THE CONSTRUCTION OF DIFFERENCE MADELINE CATHERINE BURGHARDT A DISSERTATION SUBMITTED TO THEFACULTY OF GRADUATE STUDIES IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY GRADUATE PROGRAM IN CRITICAL DISABILITY STUDIES YORK UNIVERSITY TORONTO, ONTARIO MAY, 2014 © Madeline Burghardt, 2014 Abstract Parents of children with intellectual disabilities born in Ontario in the era following World War II found themselves obliged to make significant yet misinformed decisions regarding their child’s long-term care. Immersed in postwar discourse which promoted the normative construction of the Canadian family, in combination with limited community support and generalized misconceptions of intellectual disability, many families had to choose between two principal options: keep their child at home and raise a child with needs divergent from the “norm” with few resources, or place the child in a segregated institution. Dating back to the latter half of the mid-nineteenth century, large-scale institutions for people with intellectual disabilities had become the predominant model of care for people with intellectual disabilities in Ontario outside of the family home. Many thousands of individuals were admitted to institutions; this bore significant consequences both for those admitted and for the families who decided to send them there. To date, scholarly work on institutions has focused on historical, political, and social factors which contributed to their development, as well as the more recent address of the narratives and histories of people who have lived there. Little is known, however, about the effect on family relationships and understandings of disability when one member of the family is institutionalized. The purpose of this project is to explore family relationships and understandings of disability when a family member with an intellectual disability is institutionalized for an extended period of time. Its principal body of data stems from thirty-six in-depth interviews conducted with the members of several families, including parents who institutionalized their children, siblings of those institutionalized, and those who were themselves institutionalized in Ontario in the years following World War II. Family members had widely divergent experiences in regards to institutionalization processes. Interpretations of the impact ii institutionalization had on the family were dependent on one’s location in relation to institutionalization. Findings demonstrate how relations of power were manifested in the family though institutionalization processes, and show the significant role that discursive constructions of intellectual disability have had on participants’ understandings of disability and of their family member. iii Acknowledgements I am grateful for the assistance of the many dozens of people who assisted me in bringing this work to completion. In particular, I would like to thank my committee: Marcia Rioux, Geoffrey Reaume, and Nora Groce for insightful feedback and ongoing encouragement. I would like to give especial thanks to all of the people who generously offered time and space in their lives to speak with me about their experiences of institutionalization. Your willingness to discuss what was for most people a difficult chapter in their lives did not go unnoticed. To all those in my communities of support and connection, in particular my parents, siblings, extended family and family-in-law, I thank you. To my peers and friends, for conversations that clarified my thoughts more than you will know, I am grateful. For all those who at various points in this project offered child care, meals, kitchen chats, technological help, and endless encouragement, your kindness is appreciated. And to my family—Richard, Seph, Tonnán and Raffi—endless thanks. Your presence has grounded me and given me life throughout this project. iv Table of Contents Abstract.....................................................................................................................................ii Acknowledgements...................................................................................................................iv Table of Contents………………………………………………………………………….......v List of Tables………………………………………………………………………………….vii List of Figures………………………………………………………………………………...viii Part I: Introduction…...................................................................................................................1 Chapter One: Theorizing institutionalization…...............................................................12 Chapter Two: Historical and contextual factors…...........................................................33 Chapter Three: The rise of institutions in North America…............................................53 Chapter Four: The establishment of institutions in Ontario….........................................76 Chapter Five: Families, children with disabilities, and the pressures of cold war conformity…........................................................................101 Part II: Introduction…..................................................................................................................129 Chapter Six: Methodology…............................................................................................131 Chapter Seven: Findings, survivors…...............................................................................155 Chapter Eight: Findings, siblings…...................................................................................192 Chapter Nine: Findings, parents….....................................................................................228 Chapter Ten: Findings, former staff…..............................................................................266 Chapter Eleven: Findings: key informants….....................................................................304 v Chapter Twelve: Summative analysis…..........................................................................329 Concluding Remarks…....................................................................................................364 Endnotes....................................................................................................................................372 References.................................................................................................................................384 Appendices Appendix A: Sample consent form…..............................................................................415 Appendix B: Community Agencies…..............................................................................417 Appendix C: Survivor demographics…............................................................................419 Appendix D: Sibling demographics…..............................................................................421 Appendix E: Parent demographics…................................................................................423 Appendix F: Former staff demographics…......................................................................425 Appendix G: Key informant demographics…..................................................................426 Appendix H: Interview guide…........................................................................................427 vi List of Tables Table One: Schedule One Institutions in Ontario……………………………………………….87 . vii List of Figures Figure One: Number of residents at Orillia Asylum, 1876-1977……………………………...84 Figure Two: Institutions in Ontario, c. 1970…………………………………………………..89 Figure Three: Number of residents at Schedule One Facilities, 1943-1981…………………...92 viii Part I Introduction Parents of children with intellectual disabilities born in Ontario in the era immediately following World War II found themselves obliged to make significant yet ultimately misinformed decisions regarding their child’s long-term care and welfare (Simmons, 1982; Williston, 1971). Confronted with social and political discourse shaped by middle-class “postwar optimism and the boom economy” (Trent, 1994, p. 239), a discourse which promoted the normative construction of the Canadian family and raising “the right kind of children” (Helleiner, 2001, p. 149), many families with a child with a disability felt isolated, ostracized, and uncertain how to best care for their child (Dolmage, 2011; Panitch, 2008). These factors, in combination with limited community and financial supports and generalized misconceptions of disability, meant that families had to choose between the two principal options which existed at the time: keep their child at home and venture into a life-long commitment of raising a child with needs divergent from the norm with few resources and little acknowledgement of both the demands and benefits this might bring to a family, or place the child in a segregated institution (Panitch, 2008; Simmons, 1982). Despite increasing recognition during the postwar era of the fundamental human rights inherent to all peoples and the need to enact access to those rights (Simmons, 1982), placing a child with a disability in an institution remained a viable and acceptable option within the public arena such that admissions to long-term, segregated institutions for people with intellectual disabilities in Ontario continued to rise (Radford & Park, 2003; Simmons, 1982; Williston, 1971). Dating back to the previous century with the establishment of the