Seminars

Cluster Three:

• Scope
• Draft Agenda

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Organization

• Cluster One
• Cluster Two
• Cluster Three

Cluster Three

New and emerging approaches to definitions of disability: social, cultural and environmental perspectives on disability and development

Scope

Cluster three areas include: (1) assessment of existing definitions of disability in scholarship, national laws, and international policies; (2) definitions of disabilities in its environments and in promoting equalization of opportunities for persons with disabilities; and (3) analyzing of new formulations on the implementation of international norms and procedures for a strategic framework.

Draft Agenda for Cluster Three Sessions on Definitional Issues concerning Persons with Disabilities

The following draft outline of topics anticipates approximately ten sessions with two to three hours allocated for each session. The main categories for the set of topics to be considered are (A) Conceptual Frameworks, (B) Definitions in National and International Policies, (C) Definitions of disabilities and the environments in relation to equalization of opportunities for persons with disabilities, and (D) Implications of Reframing the Issue.

Provisional Outline of Topics

A. Conceptual Frameworks

- 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. Another concern will be to evaluate basic categories such as distinctions among three types of disability: mental, physical and sensory. Participants will reassess the utility of these classificatory schemes.

- Images of Disability Varying conceptualizations as reflected in folklore, popular culture, and religion.

B. Definitions in National and International Policies

- Definitions: National Legislation

What constitutes a disability?
National models - ADA, Quebec model, and others

This session considers the treatment of disability in legal systems around the world. The question is whether there is convergence with respect to particular aspects of disability. After deterring whether this comparative law approach can yield cross-cultural universals, we review in what contexts the definitions 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 may wish to consider some examples such as the ADA.

The Americans with Disabilities Act defines a disability as:

(A) a physical or mental impairment that substantially limits one or more of the major life activities of (an ) individual;

(B) a record of such an impairment; or

(C) Being regarded as having such impairment.

The question is whether this framework has been adequate to the task of guaranteeing rights for persons with disabilities in the United States¹. It is also worth discussing whether this model is suitable for other national contexts.

Hong Kong's definition: "Disability" in relation to a person, means -- (a) total or partial loss of the person's bodily or mental functions; (b) total or partial loss of a part of the person's body; (c) the presence in the body of organisms causing disease or illness; (d) the presence in the body of organisms capable of causing disease frilliness; (e) the malfunction, malformation or disfigurement of a part of the person's body; (f) a disorder or malfunction that results in the person learning differently from a person without the disorder or malfunction; or (g) a disorder, illness or disease that affects a person's though processes, perception of reality, emotions or judgment or that results in disturbed behaviour, and includes a disability that -- (i) Presently exists; (ii) previously existed but no longer exists; (iii) may exist in the future; or (iv) is imputed to a person;²

What are the common features of disability definitions? Some interpret disability in percentages of loss of function.

- Definitions: International Norms and Standards WHO ICIDH 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.

Consideration of measurements based on the WHO model.³ Some of the measures, which define disability as the absence of health, are cause for alarm, e.g., Dalys measure.

The World Health Organization attempted to delineate various concepts under the title of the ICIDH. The three main types of conditions are:

Impairment: any loss or abnormality of psychological, physiological, or anatomical structure or function.

Disability: any restriction or lack (resulting from impairment) of ability to perform an activity in the manner within the range considered normal for a human being.

Handicap: a disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents the fulfillment of a role that is normal (depending on age, sex and social and cultural factors) for that individual.

The disability rights movements, including Disabled Peoples' International, have called for the WHO to recognize the environmental dimension in the revision of ICIDH⁴ (Fougeyrollas 1997). ICIDH-2 dropped the use of the term "disability" and instead refers to "the disablement process"⁵. It approaches disablement from a "multidimensional" and "multi-perspective" (p.12). The new definition includes the following:

Impairment is a loss or abnormality of body structure or of a physiological or psychological function.

An Activity is the nature and extent of functioning at the level of the person. Activities may be limited in nature, duration and quality.

Participation is the nature and extent of a person's involvement in life situations in relation to Impairments, Activities, Health conditions and contextual factors. Participation may be restricted in nature, duration and quality (p.14).

A key question is whether the ICIDH-2 is a viable research tool for developing national databases⁶. Analysts differ as to whether the revision avoids the "medicalization" of disability⁷. The instrument has been reviewed at a series of meetings⁸.

- Definitions: International Human Rights Instruments Standard Rules How governments have interpreted their obligations under the Standard Rules

C. Definitions Implicit in Policies Concerning the Environment

- Universal Design

This session will explore the basic principles of universal design. One model for consideration is Albert A. Peloquin's Barrier-Free Residential Design⁹, whose preface describes it as a "how-to" for professionals and for the layperson and architecture student on the removal of barriers to the disabled and elderly.

Sensitizing city planners, architects, and other to these principles will be beneficial to many segments of the population. Heavy doors are problematic for women and children, the aging. Curb cuts help women pushing baby carriages, individuals with suitcases, and others. It is important to recognize that the principles of universal design are advantageous not only advantageous for the disabled, though that would be sufficient reason to follow them in any event.

If we have an approach that focuses on the environment rather than the person with the disability, then the definition of disability might simply be a list of necessary changes to remove barriers such as curb cuts, ramps, assistive technology, screens, and Braille in elevators.

These necessary 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.

D. Reframing the Question

- Self-Definition

Empowerment of persons with disabilities
Effect on framing of issues and policy formulation
Definition of persons with disabilities as a whole versus specific communities, e.g., the Deaf
How rights of persons with disabilities intersect with other human rights such as the rights of women, the rights of children, the rights of linguistic and religious minorities.

- Cross-cultural definitions of disability

If disability is a social construct, which varies from one culture to another, what kinds of cross-national measures are possible? If disability is interpreted differently in various countries, is it possible (or necessary) to have a consistent definition? For data collection - need for common definition to facilitate international efforts to gather data, including reporting requirements for human rights treaty bodies. Funding - need for target population to justify allocation of resources.

It should be possible to come up with categories that do not reinforce stereotypes. Policies should acknowledge difference without permitting the difference to be stigmatized.

E. Conclusions: Connecting the Definitions to Specific Policy Implementation - Incorporating disability sensitive approaches into policies

- How reconceptualization of definitions can influence implementation of international norms and standards

In the final sessions, Cluster Three participants will offer reach some conclusions regarding the topics covered during the week. They will adopt a final report and recommendations for future action.

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Notes:

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

² Disability Discrimination Ordinance, Chapter 487. Honk Kong: Government Printer.

³ One measure tool is LIFE-H. See P. Fougeyrollas et al. (1998). Social Consequences of long term impairments and disabilities: conceptual approach and assessment of handicap. International Journal of Rehabilitation Research 21, 127-141.

⁴ Fougeyrollas, Patrick (1997). Les Déterminants Environnementaux de la participation sociale des personnes ayant des incapacités: le Défi socio-politique de la révision de la CIDIH. Canadian Journal of Rehabilitation 10 (2), 147-160.

⁵ ICIDH-2, BETA-1 Draft for Field Trials, June 1997, p. 24.

⁶ Ibid., p.29. The last section 10, explores potential future uses of the ICIDH-2.

⁷ 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.

⁸ In April 1999 a London meeting reviewed the instrument. Appendix 6 lists the WHO Collaborating Centres for ICIDH including members of the tasks forces, NGOS, consultants, and WHO staff.

⁹ Albert A. Pelonquin's Barrier-Free Residential Design (New York; McGraw-Hill, 1995).

¹⁰ This is a key point in the disability studies scholarship. See, e.g., James I. Charlton (1998). Nothing About Us Without Us: Disability Oppression and Empowerment. Berkeley: University of California Press.

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Last updated 12/09/99.