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To Download the PDF File Invisible Bodies: Revealing the Unseen Contributions of Persons with Intellectual Disabilities by Jihan Abbas 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 Carleton University Ottawa, Ontario © 2014 Jihan Abbas Abstract This doctoral thesis explores the unpaid labour of persons with intellectual disabilities in rehabilitation and training sites, the home, and the community in order to confront problematic policies and legislation that result in exclusion and exploitation. Grounded in theories of historical materialism, political economies of disability, theories of care, inclusion and exclusion and with attention to intersectionality, this thesis focuses on how these labour experiences are shaped by a legacy of developmental services that are reliant on the economic exploitation and exclusion of these bodies. A qualitative research project, rooted in participatory research and institutional ethnography, and drawing from the labour experiences of persons with disabilities, advocates, and stakeholders, investigates the labour experiences of persons with intellectual disabilities within their broader socio-economic and policy contexts. This thesis makes two key arguments. First, I argue that an examination of this unpaid labour is necessary to make visible the capacities and contributions of many adults with intellectual disabilities and to lay the foundation for funding and policy solutions that promote stronger versions of inclusion that are not reliant on labour market participation or economic norms. Second, I argue that programs and policies that value interdependence and view inclusion as a process separate from the labour market have the potential to support more varied capacities and reshape the social construction of intellectual disability in powerful ways. Finally, this thesis challenges current conceptualizations of caring relationships that have shaped developmental policy for persons with intellectual disabilities; I argue that these conceptualizations are rooted in dominant social constructions of intellectual disability that understand these bodies as dependent and idle. The thesis highlights the urgent need to address existing legislation and policy practices that systemically render these contributions invisible and encourage the exploitation and marginalization of individuals with intellectual disabilities. Its findings lead to calls for policy interventions that acknowledge the unpaid contributions of people with intellectual disabilities, to reimagine how inclusion is conceptualized and promoted, and support the development of concrete measures that recognize and make visible these capacities. ii Acknowledgements I would like to express my appreciation and gratitude to my advisor Dr. Andrea Doucet for her ongoing support, understanding, and encouragement. Her gentle nudges throughout helped this work progress, pushed me to work through difficult aspects of the process, and provided insight and advice on not just moving forward with this research but also beyond the PhD. I am also grateful for my committee members, Dr. Janet Siltanen and Dr. Xiaobei Chen for their active commitment throughout this process, especially with respect to their ongoing support in planning, drafting, and moving this work forward. I am also thankful to the many participants, community agencies, self- advocates, stakeholders, scholars, friends, and colleagues who provided ongoing insight, support, and encouragement throughout this process. I am also appreciative of my family and partner for their continued support, sacrifices, and patience, and specifically I want to thank my mother who continues to fight alongside my brother for inclusion and equity. Finally, a special thank you is extended to my amazing brother for sharing his story and pushing me to always make my work matter. This research would not be possible without the generous support of the Social Sciences and Humanities Research Council through their Vanier Canada Graduate Scholarship. iii Abstract ..................................................................................................................... ii Acknowledgements ................................................................................................... iii Chapter 1: Introduction ............................................................................................ 8 Intellectual Puzzle ............................................................................................................ 11 Research Questions ......................................................................................................... 13 Chapter 2: Theoretical Underpinnings of Unpaid Labour for Disabled Bodies ....... 19 Introduction .................................................................................................................... 20 Using Historical Materialism to Build a Political Economy of Intellectual Disability ............. 22 Political Economies of Intellectual Disability ..................................................................... 32 Theories of Care ............................................................................................................... 37 Feminist Contributions to the Care Debate ....................................................................... 40 Attending to Intersectionality and the Social Construction of Intellectual Disability ........... 42 Understanding Theories of Social Inclusion & Exclusion .................................................... 48 Conclusion ....................................................................................................................... 52 Chapter 3: Methodology - Ways of Making Unpaid Labour Visible ....................... 54 Introduction .................................................................................................................... 55 Qualitative Research Methods ......................................................................................... 56 Participatory Research .......................................................................................................... 57 Emancipatory Research ........................................................................................................ 59 Phronetic Research ............................................................................................................... 63 Institutional Ethnography ................................................................................................. 66 Life Writing & Reflexivity.................................................................................................. 74 My qualitative research project ........................................................................................ 80 Creating a Feedback Loop .................................................................................................... 83 Focus Groups ........................................................................................................................ 84 Interviews ....................................................................................................................... 86 Grounding the Process in Community Needs .................................................................... 89 Data Analysis ................................................................................................................... 90 Chapter 4: A Legacy of Unpaid Labour- Training & Rehabilitation through Developmental Services ........................................................................................... 94 Introduction .................................................................................................................... 95 Behind the Institution’s Walls........................................................................................... 97 Outside the Institution’s Walls ....................................................................................... 104 Focus Group Perspectives on Sheltered Work ................................................................. 111 Understanding the Political Economy of Unpaid Labour .................................................. 115 Alternatives for Skills Development & Employment Support ........................................... 118 Rights-Based Challenges ................................................................................................. 120 Conclusion ..................................................................................................................... 128 Chapter 5: Experiences of Unpaid Labour in the Home - Understanding Intellectual Disability & Interdependence ................................................................................ 130 Introduction .................................................................................................................. 130 Care within the Context of Family ................................................................................... 132 Confronting Conceptualizations of Non-Disabled Children & Siblings in Care Literature ... 135 Where Disability & Feminism Meet: Layering the Care Debate ........................................ 139 iv Questioning Notions of Capacity .................................................................................... 141 Theorizing Care Labour..................................................................................................
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