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Fiona Campbell Thesis THE GREAT DIVIDE: ABLEISM AND TECHNOLOGIES OF DISABILITY PRODUCTION by Fiona Anne Kumari Campbell B.L.S. (Hons) Latrobe; J.P. (Qual) Qld. Centre for Social Change Research, School of Humanities and Human Services, Queensland University of Technology, Brisbane, Australia. Submitted in full requirement for the award of Doctor of Philosophy (PhD). 2003 This thesis is dedicated to: Julia Pastrana, posthumously. Julia was born in 1832 and was a short statured woman. Due to her differently appearing body Julia worked in circus and freak shows until her death in 1860, aged 28 years. Julia’s ‘act’ was billed as the ‘Ugliest woman in the world’. Her name became synonymous with monstrosity. Death did not release Julia from the violence inflicted upon her – a Professor Sokoloff mummified her body and Pastrana became a public spectacle for another hundred years. Julia Pastrana is remembered and acknowledged as one of our disability martyrs. This dissertation is an offering of recompense for the injustice done to her. i KEYWORDS Ableism; Cyborgs; Disability Theory; Ethics; Embodiment; Legal Disability; New Technologies; Normalcy; Ontological Formations; Personhood; Science Studies; Theology; Wrongful Life. ii ABSTRACT Subjects designated by the neologism 'disability' typically experience various forms of marginality, discrimination and inequality. The response by social scientists and professionals engaged in social policy and service delivery has been to combat the 'disability problem' by way of implementing anti-discrimination protections and various other compensatory initiatives. More recently, with the development of biological and techno-sciences such as 'new genetics', nanotechnologies and cyborgs the solution to 'disability' management has been in the form of utilizing technologies of early detection, eradication or at best, technologies of mitigation. Contemporary discourses of disablement displace and disconnect discussion away from the 'heart of the problem', namely, matters ontological. Disability - based marginality is assumed to emerge from a set of pre-existing conditions (i.e. in the case of biomedicalisation, deficiency inheres in the individual, whilst in the Social Model disablement is created by a capitalist superstructure). The Great Divide takes an alternative approach to studying 'the problem of disability' by proposing that the neologism 'disability' is in fact created by and used to generate notions and epistemologies of 'ableism'. Whilst epistemologies of disablement are well researched, there is a paucity of research related to the workings of ableism. The focal concerns of The Great Divide relate to matters of ordering, disorder and constitutional compartmentalization between the normal and pathological and the ways that discourses about wholeness, health, enhancement and perfection produce notions of impairment. A central argument of this dissertation figures the production of disability as part of the tussle over ordering, emerging from a desire to create order from an assumed disorder; resulting in a flimsy but often unconvincing attempt to shore up so-called optimal ontologies and disperse outlaw ontologies. The Great Divide examines ways ‘disability’ rubs up against, mingles with and provokes other seemingly unrelated concepts such as wellness, ableness, perfection, competency, causation, productivity and use value. The scaffolding of the dissertation directs the reader to selected sites that produce epistemologies of disability and ableism, namely the writing of 'history' and Judeo-Christian renderings of Disability. It explores the nuances of ableism (including a case study of wrongful life torts in law) and the phenomenon of internalized ableism as experienced by many disabled people. The study of liberalism and the government of government are explored in terms of enumeration, the science of 'counting cripples' and the battles over defining 'disability' in law and social policy. Additionally another axis of ableism is explored through the study of a number of perfecting technologies and the way in which these technologies mediate what it means to be 'human' (normalcy), morphs/simulates 'normalcy' and the leakiness of 'disability'. This analysis charts the invention of forearms transplantation (a la Clint Hallam), the Cochlear implant and transhumanism. The Great Divide concludes with an inversion of the ableist gaze(s) by proposing an ethic of affirmation, a desiring ontology of impairment. iii TABLE OF CONTENTS KEYWORDS .................................................................................................................... II ABSTRACT ...................................................................................................................III TABLE OF CONTENTS ................................................................................................ IV LIST OF FIGURES........................................................................................................VII LIST OF TABLES..........................................................................................................VII ABBREVIATIONS .......................................................................................................VIII STATEMENT OF ORIGINAL AUTHORSHIP .......................................................... IX ACKNOWLEDGMENTS ............................................................................................... X DIVISION ONE: BODIES OF KNOWLEDGE ............................................1 CHAPTER 1 - INTRODUCTION............................................................................................2 CHAPTER 2 - METHODOLOGICAL AND EPISTEMOLOGICAL ASSUMPTIONS..................17 2.1 Methods................................................................................................................... 17 2.2 Dissertation’s Relationship to Disability Studies Literature.................................... 27 2.3 On Matters Relating to Terminology ....................................................................... 33 2.4 Knowledge Standpoint of the Researcher and the Ethics of Research..................... 37 CHAPTER 3 - HISTORICAL AND THEOLOGICAL INCURSIONS CONCERNING ANOMALOUS BODIES ................................................................................40 3.1 Doing a History of Disability? – Problematisations................................................ 40 3.1.1 Writing ‘In’ Disability – Problematisations ................................................. 41 3.1.2 Genealogies of Disability in Western Thought ............................................ 46 3.2 Deconstruction: Judeo-Christian Renderings of ‘Disability’ .................................. 56 3.2.1 Abusive Theologies of Disability................................................................. 56 3.2.2 Reading the Holy Books in a Different Key ………………………………..59 3.2.3 Alternative and Oppositional Theologies..................................................... 69 3.2.4 Reinscribing Disability into Scripture - Moses’ Mouth - New Ways of Mentoring................................................................................................ 80 CHAPTER 4 - THE POLITICS OF ABLEISM AND HATRED..................................................90 4.1 Shifting the Gaze - Exposing Ableism...................................................................... 91 4.2 Unraveling Internalised Ableism and the Docile Disabled Body........................... 104 4.3 Case Study: Disability and Tortuous Liability – Wrongful Birth/ Life Actions ...... 115 4.3.1 The Basis of Torts...................................................................................... 116 4.3.2 Fundamentals of Wrongful Birth and Life Actions.................................... 117 4.3.3 Legal Reactions – the United States........................................................... 119 4.3.4 Legal Reactions Australia .......................................................................... 122 4.3.5 Summary of Grounds for Rejection of Wrongful Life Actions .................. 127 4.3.6 Ontological Outputs, Philosophical and Legal Implications ...................... 127 iv DIVISION TWO: PRACTISED BODIES..................................................133 CHAPTER 5 - GOVERNING ‘DISABILITY’ IN THE SPIRIT OF THE ENLIGHTENMENT .....134 5.1. The Ableist Sovereign Subject of Liberalism.......................................................... 135 5.1.2 Autonomy as Freedom – a Recapitulation of Ableist Subjectivity? ........... 137 5.1.3 ‘Governing the Remainder’: Bound by Mutual Obligation ........................ 143 5. 2 Biomedicalism Meets the Counting of Cripples.................................................... 146 5.2.1 The Biomedicalisation of Disability........................................................... 147 5.2.2 The Social Model of Disability .................................................................. 156 5.2.3 Knowing the Population: The Science of Counting Cripples ..................... 165 5.2.4 A Grand Fabrication: The Universalising and Essentialising of Disability ................................................................................................... 173 5.2.5 An Australian Disabled State, or the State of Disability in Australia ......... 176 5.3 Operationalising Disability: Social Role Valorization Theory as Discourse: Bio-medical Transgression or Recuperation? ....................................................... 182 5.3.1 History and Diversity................................................................................
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