Expert Group Meeting on
HISTORICAL OVERVIEW Outline:
Traditional approaches to disability have depicted it as a health and welfare issue, to be addressed through care provided to persons with disabilities in the form of charitable handouts and similar measures. Persons with disabilities have been viewed as abnormal, deserving of pity and care, and not as individuals who are entitled to enjoy the same opportunities to live a full and satisfying life as other members of society. As a consequence, persons with disabilities have been marginalized and excluded both from the mainstream of society, and have been denied, or significantly limited in the enjoyment of, their fundamental human rights and freedoms.
This approach has also been accompanied by a way of thinking about disability (known as the 'medical model' of disability, among other names) which has been described in the following terms:
"Disability tends to be couched within a medical and welfare framework, identifying people with disabilities as ill, different from their non-disabled peers, and in need of care. Because the emphasis is on the medical needs of people with disabilities, there is a corresponding neglect of their wider social needs. This has resulted in severe isolation for people with disabilities and their families."1
In recent years, however, this approach has been superseded by a broader understanding of disability, sometimes referred to as the 'social model'. This analysis recognises that the circumstances of people with disabilities and the discrimination they face are socially created phenomena and have little to do with the impairments of people with disabilities.2
This is a critical reorientation of perspective, which has important implications for the way in which law and policy in relation to disability are developed, as well as for its substantive content. It focuses on the many ways in which the existing social environment places barriers in the way of persons with disabilities who seek to carry out the usual activities of everyday life and to participate in the full range of activities in society. Thus, this model sees the problem not as residing in the person with a disability, but as resulting from the structures, practices and attitudes that prevent the individual from exercising his or her capabilities: the cure to the problem of disability lies in restructuring society.3 A number of examples given in the South African White Paper on an Integrated National Disability Strategy illustrate the significance of the shift in perspective the social model entails:
"It is the stairs leading into a building that disable the wheelchair user rather than the wheelchair.
It is defects in the design of everyday equipment that cause difficulties, not the abilities of people using it.
It is societys lack of skill in using and accepting alternative ways to communicate that excludes people with communication disabilities.
It is the inability of the ordinary schools to deal with diversity in the classroom that forces children with disabilities into special schools."
The move from the patronising and paternalistic approach to persons with disabilities represented by the medical model to viewing them as members of the community with equal rights has also been reflected in the evolution of international standards relating specifically to disability, as well as in moves to place the rights of persons with disabilities within the category of universal human rights.
In the 1970s, the evolution of thinking on disability issues at the United Nations manifested itself in a number of United Nations initiatives that embraced the growing international concept of human rights of persons with disabilities and equalization of opportunities for them. In furthering the advancement of the rights of persons with disabilities, the efforts were intensified within the framework of the United Nations Decade of Disabled Persons 1982-1993. A major outcome of the International Year of Disabled Persons which preceded the Decade was the World Programme of Action concerning Disabled Persons (1982), the most comprehensive global strategy, which took "equalization of opportunities " as its guiding principle for the achievement of full participation of persons with disabilities in all aspects of social and economic life. The Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) was a major outcome of the Decade of Disabled Persons, which is an instrument for policy-making and a basis for technical and economic cooperation.
There are a number of 'general' conventions and recommendations that are applicable to the rights of persons with disabilities which have adopted under the auspices of various intergovernmental bodies and international agencies. The inclusion and the reaffirmation of the human rights of persons with disabilities in documents such as the Vienna Declaration and Programme of Action (1993), the Copenhagen Declaration and Programme of Action (1995), and the Beijing Declaration and Platform for Action (1995) also reflect the increasing recognition given to the human rights of persons with disabilities.
The Meeting noted that these and earlier instruments addressing disability and the right of persons with disabilities reflect the evolution of approaches to the subject. As a consequence, some provisions of the earlier instruments (and also some of the more recent ones) are based on assumptions and analyses which do not reflect current thinking and which persons with disabilities would today consider inappropriate or offensive. One example was the reference in article 7 of the Declaration on the Rights of Disabled Persons (1975) to the right of disabled persons "according to their capabilities, to secure and retain employment or to engage in a useful, productive and remunerative occupation" (emphasis added) The group therefore noted the need for caution in relying on international instruments in this field, particularly in the context of efforts to incorporate them as part of national law and practice.
The Meeting considered that it was desirable to approach the subject of the rights of persons with disabilities from a human rights perspective, which recognised that persons with disabilities were entitled to enjoy the full range of internationally guaranteed rights and freedoms and to do so without discrimination on the ground of disability. When one adopted this approach against the background of a social model of disability an insistence that the State take positive measures to ensure that in reality persons with disabilities are in a position to exercise those rights - sometimes described as equalisation of opportunities - could be seen as a particular instance of the general obligation of the State to take such steps as are needed to enable the exercise in practice of guaranteed rights by any group in society, rather as an making exceptional provision for persons with disabilities. (Such measures might also be viewed as temporary special measures to redress disadvantage; these are permissible under international law, and arguably mandated in certain circumstances.) At the same time, the adoption of international standards dealing specifically with the human rights of persons with disabilities could be seen as part of the process of giving more detailed content to the general human rights standards in order to ensure their enjoyment in practice by all groups in society.
The Meeting thus considered that many of the injustices inflicted on persons with disabilities and the claims made by them fell within existing human rights concepts and norms, though in many cases they had not been conceptualised as such and little attention had been given to them within that framework. However, it was noted that some of the references in universal human rights instruments to persons with disabilities appeared to reflect an assumption that persons with disabilities were in need of social support and assistance, rather than being the holders of the full range of human rights on the basis of equality and full and productive participants in the life of the community. It was also recognised that the dominant conceptions and norms might fail to reflect the violations of human dignity experienced by persons with disabilities and that radical reinterpretation of existing norms or supplementation of them by new norms might be necessary. The example was given of the rights of members of minorities under existing international human rights law: although the concept of minority included ethnic, linguistic or religious groups, claims that hearing-impaired persons who used sign language could qualify as a linguistic minority had not been accepted by the dominant human rights discourse.
The Meeting noted the difficulties in defining disability in a manner which reflected the social dimensions of disability, avoided the construction of persons with disabilities as abnormal or inferior, and reflected the fact that disability was frequently dependent on context. At the same time it recognised the need to define or describe disability for certain purposes.
A number of definitions were identified as providing a starting-point for formulation of a definition: that contained in the 1993 report of Mr Leandro Despouy, the Special Rapporteur on Human Rights and Disability of the Sub-commission on Prevention of Discrimination and Protection of Minorities, those contained in the Americans with Disabilities Act and the Hong Kong Disability Discrimination Ordinance, and that of the Draft Inter-American Convention on the Human Rights of Persons with Disabilities.
The Meeting also took note of the on-going revision of ICIDH (International Classification of Impairments, Disabilities and Handicaps)4 and its current adoption of social and political dimensions of the classification.
The Meeting recognised that the question of prevention of disability and its relationship to efforts to promote the human rights of persons with disabilities was complex and contentious. On the one hand, among the major causes of disabilities in the modern world were poverty, environmental pollution and degradation, and violence in various forms (including wars and their aftermath). There were powerful reasons for attempting to prevent the occurrence of these phenomena and to limit their impact on people so far as possible, while existing international law norms and United Nations programmes sought to address those problems squarely, it was important - especially in many developing countries - to recognise this as a priority concern.
On the other hand, the view was expressed that it was necessary to accept that there will always be persons with disabilities and that there were dangers in attempting to address all these phenomena within the framework of the human rights of persons with disabilities (one such danger being as the encouragement of the view that certain characteristics and the persons who have them are undesirable). The goal of eliminating disabilities and the potential use of reproductive technology, genetic testing and the increasing ability to manipulate genes gave rise to serious concerns. At the same time, it was noted that prevention of disability rarely included the goal of ensuring that persons with existing disabilities did not experience further disablement (for example, in the work place).
The Meeting took as its starting point for analysis the social model of disability, and recognised that disability is a result both of the biological condition or functional capacity of the individual and of the social status that attaches to that biological condition5, and that there was a broad set of social factors that contribute to exclusion and inability to exercise human rights6. The Meeting recognised that the many forms of discrimination and exclusion experienced by persons with disabilities involved violations of fundamental human rights guaranteed to all members of society as well as being inconsistent with international standards dealing explicitly with the human rights of persons with disabilities.
The Meeting noted that there had been some efforts to address questions relating to the human rights of persons with disabilities within the United Nations human rights framework. It noted in particular the 1993 report by Mr Leandro Despouy, Special Rapporteur of the Sub-commission on Prevention of Discrimination and Protection of Minorities7, the jurisprudence of the Committee on Economic, Social and Cultural Rights8 and of the Committee on the Elimination of Discrimination against Women9, the conclusions of the Committee on the Rights of the Child following its general day of discussion on children with disabilities10, and resolution 1998/31 of the United Nations Commission on Human Rights11. Nevertheless, they noted that there was still much that needed to be done to ensure that violations of the human rights of persons with disabilities were both recognised and responded to by human rights organs.
The Meeting considered that there were benefits in a two-pronged strategy: insisting on the full measure of general human rights guarantees in the case of persons with disabilities, as well as developing specific instruments that refine and give detailed contextual content to those general guarantees.
The Meeting agreed that it was critical to start from a framework of general human rights guarantees when developing law and policy in relation to the denial of rights suffered by persons with disabilities. Not only did this give the claim of universality of human rights real meaning, but it underlined the fact that persons with disabilities were full members of the community equal in dignity and entitled to enjoy the same human rights and freedoms as others. It was well-accepted that the steps a State may have to take to ensure the full enjoyment of rights by particular groups within the community might vary according to the situation of those social groups; this might apply in relation to persons with a disability. The mode of ensuring effective realisation of a right may vary, but the right, which was being guaranteed, was the same right.
1,2,3 See "South African Integrated National Disability Strategy", White Paper Office of the Deputy President of South Africa, 1997
4 WHO, International Classification of Impairments, Disabilities and Handicaps(1980; reprinted 1993)
5,6 See "Enabling the Well-being of Persons with Disabilities", entourage, v.11, nos. 2-3, 1998, 11, at 18
7 See "Human Rights and Disabled Persons", Centre for Human Rights, New York / Geneva 1993
8 See "General Comment No. 5", in: General Comments, adopted by the Committee on Economic, Social and Cultural Rights, 9 December 1994
9 See "General Recommendation No. 18", in: General Recommendations, adopted by the Committee on the Elimination of Discrimination against Women, 1991
11 E/1998/23, E/CN.4/1998/177