Human Rights and Disability A Manual for National Human Rights Institutions Chapter 1: The human rights re-framing of disability KEY QUESTIONS • What is the human rights frame on disability? • What difference does it make to move to the human rights frame on disability? • How and why has the conceptualisation and definition of disability changed as a result? 1.1. CONCEPTUAL RE-FRAMING: FROM THE ‘MEDICAL MODEL’ TO THE ‘SOCIAL MODEL’ TO THE ‘HUMAN RIGHTS MODEL’ Disability has historically been regarded as a ‘problem’ of – and primarily for – the individual. It has commonly been seen as a ‘deficit’ of some kind; a physical, sensory, intellectual or mental deviation from a norm. Indeed, the term ‘able bodied’ has been used to mark persons with disabilities apart. This understanding informed the development of the old WHO International Classification of Impairments, Disabilities and Handicaps (ICIDH).16 The obvious intent – seen through the medical frame – was to correct the deficit (‘fix’ the person) or, failing that, care for the person. Transported into the public policy arena, this resulted in policy responses that sought to either cure or care, or a mix of the two. In the process, the impairment was used to define the person and the person, in turn, became the ‘problem’. The ‘medical model’ understanding of disability was not just about ‘control’ of the person by medical and other professionals.17 It centred on the idea that the person’s impairment was the primary thing that required attention, not the person behind the impairment. As a consequence, respecting and honouring the individual’s personhood was overlooked, along with their equal right to pursue their own lives and dreams, with support where needed. The medical model of disability reflected and reinforced the broader public policy response of ‘cure or care’. While the seeming intent of this agenda was to care, it actually served to segregate and isolate persons with disabilities over time. The expectation that underpinned this policy response was that persons with disabilities could not and would not take part in mainstream community life and activities. In practical terms, this meant that, for example, education was provided through segregated schools. It meant that employment options were geared toward segregated facilities and sheltered workshops, with little or no support for people to enter the open labour market. It meant that the various pathways into the physical (and online) environment were not adjusted to take account of the presence of persons with disabilities. It meant that social supports, when they were forthcoming, cushioned persons with disabilities rather than facilitated their active engagement in mainstream activities. It meant that the controlling voice we all expect to hold in our own lives was surrendered to others, including service providers. In relatively affluent States, it meant that the development of a social care floor that provided a minimum material baseline did nothing to open up opportunities and enable people with disabilities 10 16 Available at http://apps.who.int/iris/bitstream/10665/41003/1/9241541261_eng.pdf. 17 See M. Crossley, ‘The Disability Kaleidoscope’ in Notre Dame Law Review, Vol. 74, 1999, pp. 621-716, see also M. Oliver, Understanding Disability: From Theory to Practice, 2009.