Bringing the Body Back: Adults with Developmental Disabilities, Resistance, and Independence
Kathleen Y Herzog
2015
In this thesis, I engage with the following research problem: how the body can practically, theoretically, and comprehensively be brought back into conversations of disability, while simultaneously acknowledging the agency (vis-à-vis independence) of individuals with disabilities as well as social factors associated with disability. To address this research problem, I interviewed Edmontonian adults with developmental disabilities who are part of the Persons with Developmental Disabilities
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... m (PDD), and gathered well-rounded accounts of their lives. These accounts include information about their identities, physical and social experiences within the broad context of the PDD program, as well as the meanings that independence and autonomy had for them, whether they felt this way, and why. In particular, while participants were unfamiliar with "autonomy," they were at ease with the term independence, which had unique meanings for them based on personal experiences and relationships. Additionally, I use Deleuze and Guattari's theory of the body-without-organs (BwO), or body-self, to interpret participants' accounts and ascertain one of the major insights of this thesis. Specifically, that although use of the medical model of disability (by PDD and others) seeks to pathologize and medicalize (territorialize) this study's participants, as passive and dependent on the services offered to them, participants attempted to resist this territorialization in their everyday lives through their relations with assistive designs and devices, medical procedures, family, and support staff. There are several people I would like to thank for their contributions to this thesis. Firstly, to my supervisors, Dr. Lisa Strohschein and Dr. Rob Shieldsthank you for all your advice and support over the past two years. I hardly know where to begin -thank you for inspiring me and encouraging me to really pursue my interests, even when I wasn't sure what exactly these were; thank you for ensuring I was prepared and had the necessary background to conduct and write about this study; thank you for promptly reading countless drafts and providing me with helpful feedback; and thank you for seeing this project all the way through. Secondly, to my external examiner, Dr. Nancy Spencer-Cavalierethank you for being part of this project; it has certainly been valuable to have a more interdisciplinary perspective, and I have strived to incorporate your insights and suggestions. Thirdly, to this study's participants -I truly couldn't have done this without you. Thank you for sharing your stories with me; I learned a lot from each of you and am sure the readers of this thesis will too. Fourthly, to this study's gatekeeper -thank you for taking the time out of your busy schedule to help make this research possible. You are a true role model for myself and others working within the field of disability supports. Fifthly, to my family and friendsthank you for encouraging me to follow my dreams, and never doubting I could do this. Lastly, thank you to all those within the Department of Sociology; I have found everyone to be so welcoming, kind, and supportive.
doi:10.7939/r3np1ws5h
fatcat:v2lpomkkrvh2llj26uuawjo3g4