Part I The concepts: The human rights framing of disability to take charge of their own lives and to pursue their goals on an equal basis with others. In less affluent States, it meant confining people with disabilities to their family homes or otherwise out of sight.18 If confronted to justify the status of persons with disabilities, most people in the past would automatically do so in terms of providing social welfare or social protection. They would not naturally view the situation of persons with disabilities from a broader perspective of social justice or human rights. This made it difficult for civil society organisations to advocate for a human rights frame on disability since they might be criticised for being ungrateful for the social supports provided to persons with disabilities. The resulting inequality, however, contributed to a vicious cycle of inequality and poverty. As persons with disabilities were marked apart – and then kept apart by public policies – their personal skills and capacities became degraded, which only served to reinforce in others the idea that the resulting inequalities were somehow ‘natural’. The resulting ‘spoiled identity’19 set in train a self-perpetuating cycle of exclusion. The problematic nature and unacceptable consequences of the ‘medical’ approach to disability was summarised by the Office of the United Nations High Commissioner for Human Rights (OHCHR): [W]hen disability is perceived in this way, society’s responses are restricted to only one of two paths: individuals can be “fixed” through medicine or rehabilitation (medical approach); or they can be cared for, through charity or welfare programmes (charity approach). According to this old model, the lives of persons with disabilities are handed over to professionals who control such fundamental decisions as where they will go to school, what support they will receive and where they will live.20 The process of challenging this framing of disability only took hold in the past 30 years. The shift from the medical model to the ‘social model’ meant, first of all, understanding that a person with a disability is not defined by their disability; in other words, their personhood transcends their disability. Disability is something that complicates life but it does not efface it. Second, it means locating the human rights ‘problems’ that people with disabilities experience in the barriers that society has established. In other words, it is society that compounds the problems associated with the impairment and thus creates the disability; the so-called ‘social construction’ of disability.21 While the impact of impairments or health conditions on the functional capacities of individuals is not denied, ‘disability’ is now best regarded as the product of an interaction between impairments and socially constructed disabling barriers that prevent people with impairments from exercising their own autonomy and from participating fully in all spheres of life. This is sometimes referred to as the ‘social model’ of disability or the ‘human rights model’. Though closely related, the social model of disability does not exactly overlap with the human rights model of disability. One eminent commentator, Theresia Degener, current Vice President of the Committee on the Rights of Persons with Disabilities, draws six interesting distinctions between the two models.22 A first point of distinction is that the human rights model moves beyond social observation to provide the moral signposts for reform. Degener says that “while the social model merely explains disability, the human rights model encompasses values for disability policy that acknowledge the dignity of disabled persons”. Further, “the social model does not seek to provide moral principles or values as a foundation of disability policy. The CRPD, however, seeks exactly that.”23 18 E. Kamundia ‘Choice, Support and Inclusion: Implementing Article 19 of the Convention on the Rights of Persons with Disabilities in Kenya’ in African Disability Rights Yearbook, Vol. 1, 2013, pp. 49-72; available at www.adry.up.ac.za/index.php/2013-1articles/elizabeth-kamundia. 19 For a classic statement on ‘spoiled identity’ – that is, internalising the views others hold on one and thus perpetuating a vicious circle – see E. Goffman, Stigma: Notes on the Management of Spoiled Identity, 1963. 20 OHCHR, Monitoring the Convention on the Rights of Persons with Disabilities Guidance for Human Rights Monitors, Professional Training Series No. 17, 2010; available at www.ohchr.org/Documents/Publications/Disabilities_training_17EN.pdf. 21 See M. Crossley, ‘The Disability Kaleidoscope’ in Notre Dame Law Review, Vol. 74, 1999, p. 653; see also United States National Council on Disability, Righting the Americans with Disabilities Act, December 2004; available at www.ncd.gov/publications/2004/ Dec12004. 22 T. Degener, ‘A Human Rights Model of Disability,’ in P. Blanck and E. Flynn (eds.), The Routledge Handbook of Disability Law and Human Rights (forthcoming). 23 Ibid. Chapter 1: The human rights re-framing of disability | 11