Of Disability

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Disability as an Entanglement: A New Materialist Reimagination of Disability A thesis submitted in fulfilment of the requirements for the degree of Doctor of Philosophy in the Faculty of Education at The University of Waikato by Ingrid Rose-anne Jones 2019 Abstract: Research and contemporary practice indicate that people labelled as learning disabled remain positioned on the margins of humanity, despite decades of hard work from the disability rights movement, support workers, and families and whānau, among many others (Goodley, 2017). In this thesis, I seek to find some answers as to why this situation persists. I seek further to investigate if this ongoing marginalisation can be challenged through using new materialist theory to reimagine disability. The thesis begins by outlining the big picture of disability oppression in Aotearoa New Zealand and across the globe. Thereafter, literature from disability studies and the humanities more widely is drawn upon to argue that the binary notions of “learning disability” and “normal, ideal humans” are not fixed, indisputable concepts. Instead, they can be viewed as artefacts of the historical, spiritual, political and social structures which have emerged over the past few centuries in the Western world. Learning disability becomes of necessity positioned as inferior within this binary and, it can be argued further, this positioning plays a crucial role in the validation and perpetuation of disability oppression. The key conceptual frameworks shaping policy and practice in Aotearoa New Zealand are examined. This is done with a focus on the ontological underpinning of the ideal human inherent in many of these frameworks, and how this underpinning inhibits challenge to exclusionary structures and practices. The conceptual framework is formed from agential realism (Barad), citational chains and lines of flight (Bergson / Butler, as used by Davies), performativity (Butler), affect (Wetherell), desiring silence (Jackson and Mazzei), and disability pride (Parsons). Datum was generated through a series of nine “hui”, or research meetings. These were held with a co-facilitator and seven participants, all of whom have been assigned the label of learning disabled through diagnostic processes. i The analysis begins with participant responses to the collaborative exploration of ideas related to disability pride and ableism. Whilst there was evidence that participants enjoyed discussions related to ableism, many displayed a powerful adverse reaction to visual displays on pride. In particular, participants’ affective responses to the videos and discussions regarding pride signalled the limitations of the view that the problem is largely discursive. Exploring this challenge using the conceptual framework ultimately enabled me to propose a new means of conceptualising disability: disability as an ongoing series of entanglements. The entanglements which rose to the fore during data generation and analysis were the affective entanglements of disability, the desire for recognition as a viable subject, the silences regarding disability, and the drive to help. This thesis proposes that these entanglements serve to further the inferiorisation of disability and hold it in a static place of “otherness”, and thus foreclose potential for radical transformation to exclusionary structures and practices. However, by drawing upon agential realism I also highlight the ever-present possibility of rupture which lies within each of these entanglements. Based on the findings of this thesis, I conclude that radical potential for change can potentially be found by understanding and reworking these entanglements. ii Acknowledgements: The work in this thesis was made possible thanks to the support of many people. I would first like to thank my supervisory team – Lise Claiborne, Carol Hamilton and Alison Henderson, who provided me with unfailing support throughout the thesis journey. From my “what’s the point of theory?” days, through to the many, many chapter reviews, you were always on-hand to steer me in the right direction, and always made sure I knew that you had my back. I feel incredibly lucky to have had you as my supervisory team. I would like to thank my friends and family whose offerings of love, time, emotional support, finances and food helped me through this journey. I would particularly like to thank my mum, who never failed to make sure I felt supported, had warm clothes and plenty of food (as I write this I have a box of home-made biscuits labelled “PhD Sustenance” sitting next to me), and my partner Matthew, who spent many an hour being an ear to my endless ramblings. Thank you to my participant group. You were such a big help in my research. I really liked how you were honest with me about the things that were hard to talk about. I learnt a lot from the things you told me. I also really liked how keen you were to be a part of the research, to support me, and to laugh and have fun. I also want to say thank you to my co-facilitator, Glen. You did a great job helping me to plan the hui, thinking up ideas for the different activities and resources, and facilitating the hui. Your help made a big difference. I would like to thank the disability community in Aotearoa New Zealand, who have let me in as an honorary member, and who often provided a sounding- board for the project as it was developing. Lastly, I would like to thank the many disabled people and families who have let me into the lives over the years, and who have kept my heart in the disability sector. iii Nō reira, ka nui te mihi ki a koutou katoa (my sincere thanks to all of you), Ingrid Jones November 2018 iv Table of Contents: Abstract: ....................................................................................................................i Acknowledgements: ................................................................................................ iii Table of Contents: .................................................................................................... v Chapter 1: Introduction .......................................................................................... 1 A Note on Writing Style ................................................................................. 2 Disability Oppression - The Big Picture .......................................................... 4 Rethinking the “Problem” of Disability ........................................................ 10 Tools for Rethinking the “Problem” of Disability ............................... 11 Ableism. ......................................................................................... 11 Disability Pride. ............................................................................. 12 Conclusion.................................................................................................... 12 Thesis Structure ........................................................................................... 12 Chapter Outline ........................................................................................... 13 Chapter 2: Conceptualising Learning Disability ................................................... 17 Truth-Claims of Learning Disability .............................................................. 18 Pre-Contemporary Conceptualisations of Learning Disability .................... 22 Learning Disability as an Artefact of Modernity and Capitalism ................. 24 The Modernist Human, Capitalism and the Emergence of Learning Disability ............................................................................................. 24 The Bell Curve and the “Norm” .......................................................... 28 Ableism and the Concept of the Ideal Human ............................................ 33 The Inferior “Other” of the Ableist Binary ......................................... 35 Broader Processes of Othering .................................................................... 37 The Real World Consequences of Inferior Positioning ................................ 39 v Conclusion.................................................................................................... 42 Chapter 3: Learning Disability in Aotearoa New Zealand ..................................... 44 Medicalised Conceptualisations of Learning Disability ............................... 46 Normalisation .............................................................................................. 48 Normalisation and Support Services .................................................. 51 Normalisation, the Ideal Human and Devaluing Difference .............. 53 The Social Model ......................................................................................... 55 Local and International

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