Interregional Seminar and Symposium on
International Norms and Standards relating to Disability,
REPORT
Part: 1 2 3 4 5 6 7 8

IV. Overview of international norms and standards relating to disability

A. Overview of the Seminar

The overview of the Interregional Seminar on international norms and standards was convened in plenary and moderated by Associate Professor Andrew Byrnes, Director, Centre for Comparative and Public, Faculty of Law, University of Hong Kong.

Professor Byrnes reviewed the background to and the objectives of the Seminar. He recalled that the Seminar was based upon findings and recommendations of an “Expert Meeting on International Norms and Standards relating to Disability” held at Boalt Hall School of Law of the University of California at Berkeley (USA) from 8 to12 December 1998 and relevant resolutions of the United Nations General Assembly on disability policies and programmes. The current Seminar will provide an international forum to exchange knowledge and experiences on international norms and standards and their application in the design and development of strategies, policies and programmes to promote equalization of opportunities for persons with disabilities in a broad human rights framework. Three issue clusters had been identified by which the Seminar will conduct most of its work: a cluster to review and examine international norms and standards and national jurisprudence as well issues related to elaboration of a new international instrument relating to persons with disabilities; a cluster to review and evaluate issues in national capacity building for equalization of opportunities, which would include an experimental programme in advocacy training in which multimedia and Internet technologies will be used; and a cluster to review and discuss approaches to definition of disability. A principal product of the Seminar was envisaged to be a concise analytical report of findings and recommendations for future action to further equalization of opportunities by, for and with persons with disabilities.

B. Overview of Cluster One: issues and trends in international norms and standards

Ms. Janet Lord, moderator of the Cluster, introduced the programme of work to be undertaken by participants of Cluster One. She recalled that disability activists had successfully countered the myths and negative stereotypes long associated with having a disability, prompting a paradigmatic shift away both from the view that disability is a condition that requires a cure and resulting policies of exclusion and institutionalisation. The work of disability rights advocates had led to the shaping of new understandings whereby living with a disability was something for society to accept and accommodate.[11] The emergence of international norms and standards relating to disability carried with it the potential of law to transform an "almost universally pejorative" cultural resistance to equalization of opportunities for persons with disabilities. The challenges that remained and the opportunities presented for furthering the human rights of persons with disabilities were considerable. The point of departure for articulating workable strategies for respecting and protecting the human rights and fundamental freedoms of persons with mental and physical disabilities both within and among States was the emerging regime of international disability rights law.

Against the construction of disability acknowledging the disabled person as the “marginalized other” in social relations, the promise of international norms and standards relating to disability appeared remote at best. Consideration of international norms and standards in Cluster One would focus on (a) placement of international disability rights within a broad human rights framework and (b) strategies that might be employed to strengthen the role of international disability norms within and among societies. Participants in Cluster One would review and critically examine international norms and standards relating to disability and the role of international lawyers, policy analysts and disability rights advocates in advancing the rights of disabled persons. Discussions would consider, in particular, strategies to move the disability agenda from the periphery within the United Nations system to the core of the United Nations human rights system; creative approaches to the incorporation of international norms and standards into domestic law through model legislation and other mechanisms; and how international norms and standards on disability may be translated into local action through, for example, the educative efforts of disability rights groups. Discrete topics would also be analysed in detail including (a) international standards on access to education for persons with disabilities; (b) international standards on health care facilities and support for persons with disabilities; and (c) promotion of international norms for women and girls with disabilities.

An underlying theme of Cluster One concerned the importance of participation of persons with disabilities at all levels of decision-making and their critical role in setting disability rights standards, as well as in the promotion, implementation and evaluation of those standards. Procedural rules affecting participation, whether at the international or domestic level, should be regarded as instrumental to values apart from outcomes. Grants of participatory rights in decision-making processes facilitated shaping a culture in which disability was accepted and accommodated and also dignified persons with disabilities by recognizing their right to a voice in forums where their interests are affected. This perspective acknowledged that persons with disabilities were not passive recipients of social welfare and charity but bearers of rights and worthy of accommodation as vital participants in a society for all.

In summary, Seminar participants in Cluster One would (a) review and assess existing international norms and standards for person with disabilities and (b) examine progress and remaining obstacles in strengthening, promoting and implementing existing international norms and standards on disability with the overall objective of identifying strategies to further the promise of promoting and protecting the rights of persons with disabilities through international law.

C. Overview of Cluster Two: capacity building for equalization of opportunities

Mr. Eric Rosenthal, Executive Director, Mental Disability Rights International (Washington, DC (USA)), provided an overview of advocacy with reference to mental disability. In his brief remarks Mr. Rosenthal noted that the Internet and related communications technologies had resulted to new approaches and strengthened efforts in advocacy of the rights of persons with disabilities, particularly through the sharing and exchange of knowledge and experience. In the field of mental disability there is great potential for abuses of basic rights because of limited understanding of the issue. Experience suggests that community-based approaches are especially important in the promotion of the rights and well being of mentally disabled persons. Public information on international norms and standards relating to mental disability serve to promote awareness and understanding as well as encourage improved oversight and monitoring of conditions. There is also an observed need for better communication among the disability communities and cooperation among institutions concerned with mental disability. Technical exchanges and training, which is the focus of this Cluster, are important both for building skills and knowledge and for sharing knowledge and experiences so that past errors are less likely to occur.

Mr. Ron Chandran-Dudley, moderator of the Cluster, reviewed the evolving role of organizations of persons with disabilities in the implementation of international and regional instruments related to persons with disabilities. He observed that on the eve of the new Millennium persons with disabilities had for the first time experienced full and effective participation. He recalled the “full participation and equality” goal of the World Programme of Action concerning Disabled Persons and the more recent notion of “sharing” of ideas, knowledge and experiences in the “Agenda for Action” of the Asian and Pacific Decade of Persons with Disabilities (1993 - 2002). In his view this is a decisive time for stock taking of past efforts concerning the rights and well being of persons with disabilities.

Mr. Chandran-Dudley identified aspects of the “Agenda for Action” that were of particular concern to persons with disabilities in Asia and the Pacific and which could be developed further in the course of the pilot workshop on training of trainers for advocacy and lobbying. These included the following priority areas of the “Agenda for Action”: training and employment; prevention of causes of disability; and rehabilitation services, with emphasis on community approaches. He noted that the focus for action to further implement the objectives of the “Agenda” was at the national level and that regional support could include establishing and developing networks -- or more precisely, specialised sub-networks in the region -- to exchange knowledge and experience among interested countries on a range of disability issues, and periodic monitoring and review of action in further implementing the “Agenda”.

Empowerment of persons with disabilities for full and effective participation requires knowledge and information. This needed strong disability rights organisations, whose members must be “Disciplined, Organised and Educated (DOE)”. A second area concerned the development of research skills so that persons with disabilities can effectively search for, locate and use information relevant to their needs and interests. This consideration introduced the need to allocate resources to support development of teams of persons with disabilities as research specialists so that they can effectively and efficiently prepare and manage research designs and applied studies that best met their needs. Information and communications were a third area that can contribute to the empowerment of persons with disabilities. He noted that efforts were now underway in Singapore to wire the island with high-speed telecommunications networks, with a projected completion date of 2002. Persons with disabilities in all of Singapore were expected to have the same level of access to knowledge and information as was available generally throughout the island. This could also involve partnership with the private sector.

The pilot training workshop will use interactive training technologies, including the Internet, to address a number of these key areas. It was envisaged that the training will contribute to development of advocacy capacities of disability rights organizations that were disciplined, organised and educated; these organizations will also be better able to participate in full and effective partnership in the community and the integration of services of benefit to all. The training was expected to build capacities so that there can be - to quote a Polish peasant proverb, “Nothing about us without us”.

An overview of the Cluster and its pilot workshop was provided by the head of the international presentation team, who delivered her remarks via Internet since she was not able to be physically present at Hong Kong. As circulated to participants, Sra. Maria Cristina Sará-Serrano Mathiason (President, Associates for International Management Services, New York (USA)) stated that the Cluster would emphasize the interplay between international norms and national action, with a goal of achieving agreement on strategies to be followed. This is based on the understanding that there is a two-way flow between the national and international levels in terms of norms and standards for the equalization of opportunities for persons with disabilities. International norms can be an instrument for persons with disabilities to advocate for the implementation of their rights at the national level. International norms must be based on national realities and experience and will be empty if they are not implemented in a way that benefits both national society and the persons with disabilities that form part of it.

Cluster two looks at how this interaction can strengthen the position of persons with disabilities in their struggle to eliminate discrimination and achieve equalization of opportunities.

The first element of the Cluster examines the international norms that have been agreed by Governments and, therefore, constitute a moral imperative for them, in terms of national realities. This requires an understanding of the nature of international norms, their origins and their limitations.

The Cluster focuses on the Standard Rules for the Equalization of Opportunities for Persons with Disabilities that were adopted unanimously by the United Nations General Assembly in 1993. These constitute the most comprehensive statement of international norms concerning full participation and equality of persons with disabilities. They Standard Rules represent what Governments were willing to agree to at the time of their formulation at the end of the United Nations Decade of Disabled Persons (1983-1992). Because the Rules are subject to periodic review, they can be a powerful focus for new issues, if these are deemed to be relevant and appropriate.

To be able to use the Rules at the national level, two things must be accomplished. First, there must be an understanding of what the Rules are expected to mean as Governments agreed to them. Second, there must be an examination of their relevance to each national situation. The Cluster will look at both aspects.

The Cluster will include an examination of the content of the Rules in operative terms. It will look at the definitions used, the underlying assumptions and the kinds of detail included in the text.

Knowing the Rules is only the first step. To use them effectively, two types of tools are needed. These constitute key capacities that need to be developed at the national level. The first is the use of data and information for advocacy. The Rules provide a standard against which national situations can be compared. For the comparison to be effective, there must be measurement. Statistics and indicators about disability are notoriously uneven. Nevertheless, national statistics can be used and additional indicators developed

While an old epigram attributed to a former British Prime Minister is often quoted, "there are lies, damn lies, and statistics"[12], in fact credible information is a powerful tool for advocacy. An ability to use indicators that will show how far a country has come in conforming to the Rules is a key capacity. The Cluster will include a discussion of the main concepts that are necessary to know in order to collect, analyse and use information effectively. These include knowing something about the WHO's new standards in the revision of the International Classification of Impairment, Disability and Handicap (ICIDH),[13] as well as a few basic concepts of sampling and comparison.

The second capacity could be called "lobbying". Persons with disabilities are a minority in most societies, and are often not well endowed with resources. However, they have many natural allies that can be mobilized. Lobbying, or skill in influencing public policy, is a learned ability. It involves understanding the political environment, identifying key potential allies, and providing them with information and support. The Cluster will look at this particularly in terms of the interface with Government officials who report on national implementation of international norms.

The Rules are, in many ways, less than would be desirable. An international convention would be stronger and probably more effective. The Rules are often vague and do not adequately deal with new technologies. They are not equally important or applicable.

Changing the Rules or promoting a convention, however, will require lobbying at both national and international levels. One approach would be to set priorities for implementing the Rules in each country and use obstacles encountered as an illustration of why the Rules need to be modified or replaced by a Convention. The Cluster will try to engage participants in setting these priorities on a country-basis.

An additional approach would be to reach agreements on next steps to take at the international level to update and refine the Rules, taking into account the schedule of events that can be foreseen in the next year or so. Outlining such a strategy will be the final exercise of the Cluster and a contribution by its participants to the work of the Seminar.

D. Overview of Cluster Three: new approaches to definitions of disability

Ms. Alison Dundes Renteln, moderator of the Cluster III, stated that the participants in the Cluster would review and discuss definitions of disability in terms of their social, cultural, and environmental perspectives on disability and development. The purpose of the group work is to consider the concept of disability from a global perspective. Because much disability literature is based on the North American experience,[14] a more comparative approach to the question of human rights for persons with disabilities was thought to be desirable.[15] A cross-national dialogue about a human rights approach to disability with experts from many parts of the world would elucidate some of the issues on the agenda.

Cluster Three seeks to interpret the idea of disability, a notion that is a cultural construct. In the process of interpreting disability, it would be necessary to examine various conceptualisations across the globe.[16] Cluster Three would focus on such questions as: what is the most appropriate terminology; what types of conditions are considered disabilities in different societies; and is it possible to identify universal definitions of disability which apply cross-culturally. In order to find concepts that are trans-cultural, it is important to acknowledge some of the difficulties associated with defining disability.

The first problem is nomenclature, because terminology is often offensive. Another problem is that in some languages there is no single word, which is the linguistic equivalent of disability. Instead of referring to persons with disabilities in terms of a larger conceptual category, in many societies there is a tendency to use specific names for particular disabilities. Another complication is that the same conditions may not be considered disabilities in all societies. In fact, there are some culture-bound syndromes such as "running amok" which are most certainly not universal.

Even when a particular disability is found all over the world, e.g., blindness, the extent of the condition necessary for a person to be said to have that disability may vary. For example, in a study of blindness in an Egyptian community, Sandra Lane et al. found that "only those with no light perception whatsoever are called ama or kafeef (blind) ...Thus, while blindness is a physical condition, the precise definition of what constitutes blindness is socially and legally constructed."[17]

Not only are there practical problems with undertaking comparative work on disability, there are political objections as well. Definitions are suspect because many regard them as used only to deny individuals access to benefits or to exclude them from many aspects of social life. In some cases, the ethnographic record does indicate that there may be a tendency for societies that classify persons as disabled to segregate them.[18] This is one of a number of reasons why there is a resistance to the idea that definitions of disability are useful. Many express the concern that definitions are used to exclude persons with disabilities from social programs, for instance to “dis-entitle” them.

Others, while acknowledging the potential misuse of definitions, recognize the practical need for them. Since Governments need to determine who will be the beneficiaries of policies, definitions will inevitably be used.[19] If there is a desire to standardize definitions on an international basis to ensure that the policies implemented are the most inclusive and do, in fact, guarantee the broadest range of human rights, the international human rights community should encourage the formulation of cross-culturally applicable definitions of disability. It may be necessary to have different sorts of definitions, depending upon the type of policies, for instance anti-discrimination laws versus criminal responsibility statutes.

One of the first challenges is to identify the most appropriate conceptual framework for the analysis of disability.[20] As the disability rights movement has worked to shift from the “medical” model to a “socio-political” model, this has meant that the emphasis has been placed on barriers in the environment, which prevent complete and equal participation rather than on impairments in the individual.[21] Because of the shift from persons to the environment, any attempt to define disability becomes problematic.[22]

The question of the definition of disability is important to the discussion because most of the standards were created under the auspices of the World Health Organization (WHO), which meant that they were based on the “medical” model.[23] The primary tool of the WHO has been the International Classification of Impairments, Disability, and Handicap, which is in the process of being revised.[24] Because of definitional difficulties, collection of data is difficult.[25]

Since there was has been shift from the medical model to the social model, it becomes more difficult to define disability insofar as the analysis focuses not on the individual but on the environment.[26] Furthermore, to the extent that “the environment” varies from one society to the next, conceptualising disability according to the new model will be challenging. Global policies, intended to be universally applicable, for instance principles of universal design, have to be flexible enough to address culturally varying needs.

The Cluster will consider four issue complexes:

The first issue complex is the conceptual framework for definitions of disability.

Session 1. Appropriate terminology and models: medical versus social-political. One objective of this session is to try to find terms that match the new social-political model on disability. Another concern will be to evaluate basic categories such at distinctions among three types of disability: mental, physical and sensory. Participants will reassess the utility of these classificatory schemes.

Session 2. Images of disability. Participants will consider various conceptualisations of disability as eflected in folklore, contemporary culture, and religion.

The second issue complex will consider definitions of disability as reflected in selected national and international policies and law.

Session 3. Definitions: national policies and legislation. The session will consider the question of “what constitutes a disability” and review and discuss selected examples of national practice in the treatment of disability in legal systems around the world.

One question will be whether there is convergence with respect to particular aspects of disability. After determining whether a comparative law approach can yield cross-cultural universals, the group will review in what contexts definitions of disability are part of effective policies. The idea is that where clear formulations exist, this results in more efficacious policymaking. Moreover, can the definitions tied to specific policies be exported as legal transplants.

The Cluster will consider selected national practice such as the “Americans with Disabilities Act”. The question is whether this framework has been adequate to the task of guaranteeing rights for persons with disabilities in the United States.[27] It is also worth discussing whether this model is suitable for other national contexts.

Session 4. Definitions: international norms and standards. The session will focus on the International Classification of Impairments, Handicap and Disability (ICIDH) of the World Health Organization and its revision, ICIDH BETA-2 (International Classification of Impairments, Activities, and Participation) (WHO/MSA/MNH/EAC/97.2).

This session will evaluate the ICIDH-2 as outlined in the document and consider other measurements based on the WHO model,[28] such as measures which define disability as the absence of health and are cause for alarm, for example, the “Dalys measure”.[29]

A key question is whether the ICIDH-2 is a viable research tool for developing national databases.[30] Analysts differ as to whether the revision avoids the “medicalization” of disability.[31] The instrument has been reviewed at a series of technical meetings.[32]

Session 5. Definitions: international human rights instruments. The session will consider the role of the United Nations Standard Rules and review and discuss ways in which Governments have interpreted their obligations under the Standard Rules and how this has been measured.

The third issue complex focuses on definitions of disability implicit in policies on the environment.

Session 6. Universal design. Environmental variables will first be considered with reference to the concept and principles of universal design. For instance, in the built environment use of basic principles of universal design by planners, architects[33] and others will produce results beneficial to many segments of the population: heavy doors are problematic for women with children and older persons; curb cuts help all who are pushing baby carriages or carrying suitcases and other parcels. It is important to recognize that the principles of universal design are advantageous not only to the disabled, though that would be sufficient reason to follow them in any event.

Approaches that focus on the environment rather than persons with disability, then the definition of disability might simply be a list of necessary changes to remove barriers, such as curb cuts, ramps and identify assistive technology such as touch-sensitive screens and Braille in public areas. Such environmental modifications indirectly acknowledge particular types of conditions. While such a roundabout method of interpreting disability might be more politically acceptable, it begs the question as to what conditions constitute disabilities.

The fourth issue complex will reframe the question of what conditions constitute disability.

Session 7. Self-definition of disability. The session will review and discuss empowerment of persons with disabilities[34] and implications for framing the issue and formulating policy options. The group will consider definitions of persons with disabilities as a whole and for specific communities, such as the Deaf. It also will consider how rights of persons with disabilities intersect with the human rights of women and of other social groups, such as the rights of children, or of linguistic and religious minorities.

Session 8. Cross-cultural definitions of disability. The session will discuss whether disability is a social construct, which varies from one culture to another; and if so, what kinds of cross-national measures are possible? If disability is interpreted differently in countries, the question becomes whether it is possible (or necessary) to have a consistent definition? For data collection, there is a need for common definitions to facilitate international efforts to collect and analyse data, which can include reporting requirements of human rights treaty bodies. For funding – and related resource allocation decisions – there is a need for consistent definitions of a target population (or consumers) to justify resource allocation decisions and the evaluation of outcomes. The group will identify categories that do not reinforce stereotypes; policies should acknowledge differences without allowing differences to stigmatise.

The group will conclude its work by formulating conclusions and recommendations, which seek to connect definitions of disability to specific policy options and implementation measures.

Session 9. Incorporating disability sensitive approaches into policy options

Session 10. How reconceptualization of definitions of disability can influence implementation of international norms and standards

Group work will address these four objectives:

Assess the need for definitions of disability and identify options with special reference to interdisciplinary approaches;
Assess the challenge to find universal measures of disability in a pluralistic world in the light of selected examples of national and international strategies, policies and legislation;
Review and assess policy implications of adopting different measures of disability; and
Formulate strategic options for cross-cultural data collection, analysis and evaluation.

E. Discussion of the presentations

Several participants commented on the approaches to disability. One participant observed that formulation of a single definition of disability might prove to be an elusive task due to cultural and contextual sensitivities. In reply it was recalled that much work on policies and programmes is premised on “definition” of disability, as is the case in the World Programme of Action concerning Disabled Persons, the United Nations “Standard Rules on the Equalization of Opportunities for Persons with Disabilities” and the “Americans with Disabilities Act” of the United States. A second participant noted the potential for overlap in the discussions of the substantive Clusters One and Three, which suggested the need for joint work on legal definitions.

Some participants suggested that an important emerging area of concern is the question of “bio-ethics” and its consideration in discussions on international norms and standards. One participant noted that UNESCO recently had adopted a “Declaration” on bio-ethics[35] and that the question had also been addressed to the member States of the Council of Europe.[36]

One participant drew the attention of the Seminar to the importance of elaborating a “universal magna carta” for persons with disabilities to promote and protect their human rights. Another participant raised the question of how to reflect disability concerns more effectively in both national and international development activities. The exchange suggested an important new area of work, observed a participant, which would be establishment of an international compilation of case law related to the rights of persons with disabilities as reflected in the application of international norms and standards to national legislation and the implementation in practice.

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[11] “…disability is normal. By normal, I do not mean that disability is the most common state in which people live. It isn't. Instead, I mean that all kinds of disabilities happen to all types of people at all stages in their "normal" human lifecycles.” In “Planning for disability,” by Robert L. Metts, PhD.; paper for “United Nations Panel on Independent Living of Persons with Disabilities (8 December 1998)” <http://www.un.org/esa/socdev/enable/disid98f.htm>.

[12] Benjamin Disraeli, Earl of Beaconsfield (1804-1881), “There are three kinds of lies: lies, damned lies and statistics.”

[13] World Health Organization, International Classification of Impairments, Disabilities, and Handicaps: A Manual of Classification Relating to the Consequences of Disease (Geneva, 1980)

[14] An excellent compilation of material on disability and culture in North American can be found in Mariellen L. Kuehn. Cultural Diversity and Disability: an annotated bibliography (Madison, Wisconsin: Waisman Center University Affiliated Program, University of Wisconsin-Madison, 1998).

[15] Unfortunately, relatively little information is available for the purpose of identifying cross-cultural definitions of disability. The scholarship on the subject is sparse. Most of the published works on cultural constructions of disability are based on the North American experience. Moreover, studies of the disabled outside the United States tend to focus on a single group in one national setting.

[16] See Jessica Scheer and Nora Groce (1988). Impairment as a Human Constant: Cross-Cultural and Historical Perspectives on Variation. Journal of Social Issues 44 (1), pp. 23-37. Nora Groce and Jessica Scheer (1990). Introduction to special issue, "Cross-cultural Perspectives on Disability”. Social Science and Medicine 30 (8), pp. V-VI. Benedicte Ingstad and Susan Reynolds Whyte (Eds.) Disability and Culture (Berkeley, University of California Press, 1995). Benedicte Ingstad (1988). “Coping Behaviour of disabled persons and their families: cross-cultural perspectives from Norway and Botswana”. International Journal of Rehabilitation ResearchII (4). pp. 351-359. Robert B. Edgerton. “Mental retardation in non-western societies: toward cross-cultural perspective on incompetence”. Peabody-NIMH Conference on Social-cultural Aspects of Mental Retardation. (New York, Appleton-Century-Crofts, 1970). J. Paterson, W. Boyce, and M. Jamieson (1999). The attitudes of community based rehabilitation workers towards people with disabilities in south India. International Journal of Rehabilitation Research 22, pp. 85-91. Richard Jenkins (Ed.), Questions of Competence; culture, classification, and intellectual disability. (Cambridge: Cambridge University Press, 1998). Mary L. Manion and Hank A. Bersani (1987) “Mental Retardation as a Western Sociological Construct: a cross-cultural analysis”. Disability, Handicap, and Society 2 (3), pp. 231-245. Dieter Neubert, Behinderung und Behinderete in verschiedenen Kulturen: eine vergleichende analyse ethnologischer studien (Heidelberg: Edition Schjindele, 1987). Anna-Claudia Guimbous, Behinderte in Kenia (Frankfurt: IKO-Verlag fur Interkulturelle Kommunikation, 1993). Thomas Kegel, Das Behindertenwesen in der Volksrepublik China (Frankfurt: Verlag fur Interkulturelle Kommunikation, 1991). Behinderte Menschen am Rande der Gesellschaften: Problemstellungen und Losungsstrategien von "Sonderpadogogik Dritte Welt", Freidrich Albrecht and Gabrielle Weigt, (Eds.). (Frankfurt: Verlag fur Interkulturelle Kommunikation, 1993).

[17] Sandra D. Lane et. al. (1993) “Sociocultural aspects of Blindness in an Egyptian Delta Hamlet: visual impairment vs. visual disability”. Medical Anthropology 15, pp. 245-260.

[18] See, for instance, Sylvia van Maastricht “Work, opportunity, and culture: (in)competence in Greece and Wales” (pp. 125-152). In Richard Jenkins (Ed.), Questions of Competence; culture, classification, and intellectual disability. (Cambridge, Cambridge University Press, 1998).

[19] In a world without finite resources, any one claiming the benefits would be entitled.

[20] One of the first attempts to define disability was Saad Z. Nagi. “The Concept and Measurement of Disability” (pp. 1-15). In Edward D. Berkowitz (Ed.) Disability Policies and Government Programs (New York, Praeger, 1979).

[21] See Harlan Hahn. “The Political Implications of Disability Definitions and Data” (pp. 3-11). In Robert P. Marinelli and Arthur Dell Orto (Eds.), The Psychological and Social Impact of Disability (4th edition) (New York, Spring Publishing Co., Inc, 1999). See also Jerome E. Bickenbach. “Minority Rights or Universal Participation: the politics of disablement” (pp. 101-116). In Melinda Jones and Lee Ann Basser-Marks (Eds.) Disability, Divers-ability, and Legal Change. (The Hague, Kluwer Law International, 1999). For a critique of the functional limitations approach, see David Pfeiffer (1993). “The Problem of Disability Definition”. Journal of Disability Policy Studies 4 (2), pp. 78-82.

[22] It is difficult to identify the populations requiring accommodation if the definition cannot be linked to individuals.

[23] Definitions in the Standard Rules on the Equalization of Opportunities for Persons with Disabilities are:
Paragraph 17. The term “disability“ summarizes a great number of functional limitations occurring in any population in any country of the world. People may be disabled by physical, intellectual or sensory impairment, medical conditions or mental illness. Such impairments, conditions or illnesses may be permanent or transitory in nature.

Paragraph 18. The term “handicap” means the loss or limitation of opportunities to take part in the life of the community on an equal level with others. It describes the encounter between the person with a disability and the environment. The purpose of this term is to emphasize the focus on the shortcomings in the environment and in many organized activities in society, for example, information, communication, and education, which prevent persons with disabilities from participating on equal terms. Source: General Assembly resolution 48/96, annex of 20 December 1993 <http://www.un.org/esa/socdev/enable/dissre00.htm>.

[24] WHO is working on the refinement of ICIDH-2, which is called the International Classification of Impairments, Activities and Participation WHO/MSA/MNH/EAC/97.2 (1997). Subsequent to the Hong Kong seminar and symposium on norms and standards, the fifty-fourth World Health Assembly endorsed, on 22 May 2001, a revision of the ICIDH, the International Classification of Functioning, Disability and Health (ICF), which is to provide a “unified and standard language and framework for the description of health and health-related states” (ICF, “Introduction” p. 3).

[25] Despite the challenges of data collection, most studies state that there are over 500 million persons with disabilities across the globe with the vast majority in “developing” countries. See Theresia Degener. “Disabled Persons and Human Rights: the legal framework”(p. 9). In Theresia Degener and Yolan Koster-Dreese (Eds.). Human Rights and Disabled Persons: essays and relevant human rights instruments. (Dordrecht, The Netherlands, Martinus Nijhoff Publishers, 1995).

[26] The types of disabilities that exist are implied by the types of modifications that must be made in the environment. For instance, ramps imply mobility limitations.

[27] Robert F. Ladenson (1996). “What is a Disability?” International Journal of Applied Philosophy 11 (1), 1-10.

[28] One measure tool is LIFE-H. See Patrick Fougeyrollas et al. (1998). “Social Consequences of long-term impairments and disabilities: conceptual approach and assessment of handicap”. International Journal of Rehabilitation Research 21, pp. 127-141.

[29] Disability Adjusted Life Years (DALYs) is a population-based measure developed at Harvard Center for Population and Development Studies. It is based on epidemiological estimates of incidence, duration and case-fatality for more than 100 diagnostic groups and together with health-economic tools such as disability weighting and discounting, time lost due to death and morbidity is weighted together to one measure. See “Health policy research and development”. Department of Public Health Sciences, Kraolinska Institute (Stockholm, 1999) <http://www.phs.ki.se/socmed/research/se/health_policy_research_and_devel.html>.

[30] Fougeyrollas et al., op. cit., p. 29. The last section, 10, explores potential future uses of the ICIDH-2.

[31] T.Bedirhan Ustun, Jerome Bickenbach, Elizabeth Badley & Somnath Chatterji (1998). “A Reply to David Pfeiffer: the ICIDH and the need for its revision”. Disability and Society 13 (5), pp. 829-831.

[32] In April 1999 an expert meeting held in London reviewed the instrument. Appendix 6 lists the WHO Collaborating Centres for ICIDH including members of the task forces, non-governmental organizations, consultants, and WHO staff.

[33] Albert A. Pelonquin. Barrier-free Residential Design (New York, McGraw-Hill, 1995).

[34] This is a key point in disability studies scholarship. See, for instance, James I. Charlton. Nothing About Us Without Us: disability oppression and empowerment. (Berkeley, University of California Press, 1998).

[35] “Universal Declaration on the Human Genome and Human Rights, 1997” adopted by the General Conference of UNESCO, twenty-ninth session, 11 November 1997 <http://www.unesco.org/human_rights/hrbc.htm.>.

[36] Council of Europe. Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (European Treaty Series No. 164) 4 April 1997 <http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm>; and Additional Protocol to the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine, on the Prohibition of Cloning Human Beings (European Treaty Series No. 168) 12 January 1998 <http://conventions.coe.int/Treaty/en/Treaties/Html/168.htm>.

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