Seminars

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

VII. Summary of Proceedings: Cluster Three: definitions of disability

A. Introduction

  The objective of Cluster Three was to review the manner in which disability is defined in national and international laws, conventions and measurement tools.  In some cases, laws, conventions and measurement tools specifically define disability, while in others definitions have to be extrapolated from the identification of the target group to whom the law or policy applies because no definition is provided.  Such delineations foster better understanding of current laws and better drafting of new laws. This structural analysis is helpful in clarifying underlying assumptions about disability as encoded in international laws, conventions and measurement tools.

  The first session of Cluster Three discussed conceptual frameworks in which disability is analysed.  Following a discussion of terminology for various disabilities, participants considered ways in which disability is presented in contemporary culture.

  The discussion on concepts and images of disability in contemporary culture touched on a number of topics including the preoccupation in many communities with the causes of disability.  Many participants emphasized the extent to which disability in some societies is attributed to transgressions of ancestors.  The point was raised in the context of a discussion on divergent cultural perceptions of rights and obligations.   Some participants asked whether it would be possible to adopt a human rights approach to disability if there was no tradition of individual rights.

  Participants also discussed the attribution of disability as the interaction between the individual and the environment and the concept of disability, which includes perceived disabilities.  Although some disabilities may be based largely on societal perceptions, there is, nevertheless, a concern with self-rejection due to a disability.   A major part of the discussion focused on ways in which norms pertaining to disability may both vary across cultures and change over time.  Many barriers to the participation of persons with disabilities are attitudinal ones.

  List below are the main points raised during the preliminary exchange on views: 

• What is the purpose of the definition of disability?
• What are the consequences of particular definitions?
• Do the definitions entitle or disentitle?
• Is a definition of disability inherently "medical'" (i.e., based on the bio-medical model)?
• Are definitions needed for policy purposes or for international human rights standard-setting?
• If definitions are required for policy purposes, what are basic categories and sub-categories; are the categories manageable; and what factors should be taken into account?
• Do definitions facilitate governmental actions related to persons with disabilities?
• Can governmental use of definitions be monitored?
• To what extent do definitions of disability help or hinder efforts to promote and protect the human rights of persons with disabilities?

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B. Defining disability

  Defining disability is a long-standing issue of policy, planning and academic concern.   It has long been the quest of medical scientists, biologists, social scientists, policy makers, governmental officials, theologians and writers.  Some participants noted that to face similar dilemmas in defining disability at the end of the twentieth century, albeit with certain changes in areas of emphasis from earlier efforts, is not surprising.  Most recent attempts at definition reflect current concerns with development and globalisation.  Consequently, issues of universalism, economic efficiency and effectiveness and prevention underlie much of this work.

  A number of distinctly different definitions of disability are found in the literature and in national and international policies and legislation.  Examining how disability is defined in national and international laws, policies and measurement tools is an important exercise, which suggests legal, social, political and economic consequences of such definitions.

1. United Nations Commission on Human Rights

  From an international policy perspective, resolution 1998/31 of 21 April 1998, of the United Nations Commission on Human Rights, “Human rights of persons with disabilities” sets forth a number of recommendations related to disability as a human rights issue, paragraph 11 in particular:

“Encourages all the human rights treaty monitoring bodies to respond positively to its invitation to monitor the compliance of States with their commitments under the relevant human rights instruments in order to ensure full enjoyment of those rights by persons with disabilities, and urges Governments to cover fully the question of the human rights of persons with disabilities in complying with reporting obligations under the relevant United Nations human rights instruments …”.[97]

  In this resolution the United Nations presents a definition of disability and considers the implications of disability in a human rights framework. 

  This section will next consider definitions of disability found in national and international laws and conventions and will review a select group of international measures where definitions of disability are expressed or assumed.

2. Categories of definitions

  The myriad of definitions and their variations in national and international literature[98] suggest the usefulness of classifying and characterizing approaches.  A review of contemporary definitions of disability suggests that definitions fall mainly into one of two categories, which reflect the evolving conceptualisations of disability summarized below.

  The first category frames disability with reference to the individual and in terms of individual deficits.  Within this category, definitions fall into two closely related subgroups.   The first subgroup focuses on the individual, and might be called the biological or medical model.  The second subgroup focuses on the promotion of fuller functioning in the individual and is characterized by the functional or rehabilitation approach.    Most of these models assume a norm, below which a person should fall if she or he is identified as a person with a disability.

  The second category focuses not on the individual but on the social, economic, political, institutional and legal conditions that can result in disability.  This second category likewise has two subgroups.  The first subgroup might be called the environmental model.  In this subgroup, attention is directed to the social, cultural and economic barriers of living with a disability.  The second subcategory focuses on the rights to which all individuals in a society, including those with disability, are entitled.   This subcategory is termed the human rights model.

 Table 1 Categories of definitions of disability[99]

  Historically, definitions of disability cluster largely around the bio-medical and rehabilitation models of Category I.  What distinguishes this group of definitions is the view that the etiology of disability resides in the individual as a consequence of events such as disease, accident, war, genetic structure, birth trauma or other acute causes.

(a) Bio-medical definitions

  In the bio-medical approach, attention is directed to the delineation or listing of what physical, intellectual or sensory impairments an individual has to define whether he or she is included in the legislation.  For example, India and the Republic of Ireland have specific definitions of disability based on a list of diagnostic traits.

  (i)         India 

The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 (No. 1 of 1996).[100]

  Chapter I – Preliminary; Definitions

  2.  In this Act …:

…

“(b)      ‘blindness’ refers to a condition where a person suffers from any of the following conditions, namely:

“(i)       total absence of sight;

“(ii)       visual acuity not exceeding 6/60 or 20/200 (snellen) in the better eye with correcting lenses;  or

“(iii)      limitation of the field of vision subtending an angle of 20 degree or worse; …

“(e)      ’cerebral palsy’ means a group of non-progressive conditions of a person characterized by abnormal motor control posture resulting from brain insult or injuries occurring in the pre-natal or infant period of development; “disability” means:

“(i)       blindness;

“(ii)       low vision;

“(iii)      leprosy-cured;

“(iv)      hearing impairment;

“(v)      locomotion disability;

“(vi)      mental retardation;

“(vii)     mental illness;

…

“(l)       ‘hearing impairment’, means loss of sixty decibels or more in the better year in the conversational range of frequencies;

…

“(n)      “leprosy cured person” means any person who has been cured in leprosy but is suffering from:

“(i)      loss of sensation in hands or feet as well as loss of sensation and paresis in the eye and eye-lid but with no manifest deformity;

“(ii)       manifest deformity and paresis but having sufficient mobility in their hands and feet to enable them to engage in normal economic activity;

“(iii)      extreme physical deformity as well as advanced age which prevents him from undertaking any gainful occupation, and the expression “leprosy cured” shall be construed accordingly;

“(o)      ‘locomotion disability’ means disability of the bones, joints or muscles leading to substantial restriction of the limbs or any form of cerebral palsy;

…

“(q)      ‘mental illness’ means any mental disorder other than mental retardation;

“(r)       ‘mental retardation’ means a condition of arrested or incomplete development of mind of a person which is specially characterized by subnormality of intelligence;

…

“(t)       ‘person with disability’ means a person suffering from not less than forty percent of any disability as certified by a medical authority;

“(u)      ‘person with low vision’ means a person with impairment of visual functioning even after treatment or standard refractive correction but who uses or is potentially capable of using vision for the planning or execution of a task with appropriate assertive device …”.

 (ii)       Republic of Ireland

Employment Equality Act, 1998.[101]

2.         Interpretation

(1)        In this Act …

…

“disability” is:

“(a)      the total or partial loss of a person’s bodily or mental functions, including the loss of a part of a person’s body, or

“(b)      the presence in the body of organisms causing, or likely to cause, chronic disease or illness, or

“(c)      the malfunction, malformation or disfigurement of a part of a person’s body, or

“(d)      a condition or malfunction which results in a person learning differently from a person without the condition or malfunction, or

“(e)      a condition, illness or disease which affects a person’s thought processes, perception of reality, emotions or judgment or which results in disturbed behaviour, and shall be taken to include a disability which presently exists, or which previously existed but no longer exists, or which may exist in the future or which is imputed to a person.”

(b) Functional definitions

            Functional or rehabilitation definitions differ from bio-medical definitions.   While both emphasize attributes within the individual, the functional approach to definition of disability emphasizes actions or activities that an individual can perform.   Most countries and organizations using functional definitions stress that reduction in function results from a bio-medical condition. Reduction in function can be considered in two different ways: (1) actual performance of an action or activity or (2) need for help to conduct an action or activities.  Some countries emphasize the bio-medical conditions that lead to a reduction in function, while others emphasize a reduction in function resulting from the bio-medical condition. While this may appear to be a minor distinction, an examination of definitions shows the significance of the different orientations. 

  Examples of bio-medical conditions leading to reduction in the ability to perform an action or activity can be found in legislation from the People’s Republic of China, Costa Rica and the United Kingdom of Great Britain and Northern Ireland.

(i)         China

Law of the People’s Republic of China on the Protection of Disabled Persons, 1990 (Adopted at the 17th Meeting of the Standing Committee of the Seventh National People's Congress on December 28,1990).[102]

  Section 2- Definition, Categories and Criteria

  “A disabled person is a person who suffers from abnormalities or loss of a certain organ of function, psychologically or physiologically, or in anatomical structure and has lost wholly or in part the ability to perform an activity in the way considered normal.  

  “The term ‘disabled persons’ refers to those with visual, hearing, speech or physical disabilities, intellectual disability, mental disorder, multiple disabilities and/or other disabilities.”

(ii)        Costa Rica

Ley núm. 7600, de igualdad de oportunidades para las personas con discapacidad (La Gaceta. 1996-05-29. núm. 102, págs. 1-9).

  ARTÍCULO 2- Definiciones

  “Disability: Whatever physical, mental or sensory deficiencies that substantially limit one or more of the principal activities of an individual.” [informal translation.]

  (iii)       United Kingdom of Great Britain and Northern Ireland

Disability Discrimination Act, 1995 (Chapter 50).[103]

  Part I. Disability

  1. – Meaning of ‘disability’ and ‘disabled person’

  “… a person has a disability for the purposes of this Act if he has a physical or mental impairment which has a substantial and long-term adverse effect on a person's ability to carry out normal day-to-day activities."

  Terms are defined in the Act or elaborated by Government guidance on matters to be taken into account in determining questions relating to the definition of disability.  

  “Schedule 1.     

  “(1)      Impairment”:

Includes physical impairments affecting the senses, such as sigh and hearing, and mental impairments including learning disabilities and mental illness (if it is recognized by a respected body of medical opinion). Certain specified conditions are not regarded as impairments (notably: alcohol or nicotine addiction; hay fever; tendencies to set fires, steal, or abuse another person; exhibitionism; voyeurism; tattoos and body piercing).

  “(2)      Long-term effects”:

Effects must have lasted at least 12 months or be likely to last at least 12 months or for the rest of the life of the person affected. Long-term effects include those, which are likely to recur.

…

  “(4)      Normal day-to-day-activities”:

Are normal activities carried out by most people on a regular basis, and must involve one of the following broad categories: mobility; manual dexterity; continence; the ability to lift, carry or move ordinary objects; speech, hearing or eyesight; memory, or ability to concentrate, learn or understand; being able to recognize physical danger.

  Examples of the reduction in the ability to perform an action or activity as a result of bio-medical conditions can be found in legislation from Fiji and in Convention 159 of the International Labour Organization.

  (iv)       Fiji

Fiji National Council for Disabled Persons Act, 1994.[104]

  “Part 1 – Preliminary Interpretation

       “2 – In this Act, unless the context otherwise requires, “disabled persons” means persons, who as a result of physical, mental or sensory impairment are restricted or lacking in ability to perform an activity in the manner considered normal for human beings …”.

  (v)         International Labour Organisation

  Convention 159 - Vocational Rehabilitation and Employment (Disabled Persons) Convention, 1983. [105]

  Article 1

  “1.        For the purposes of this Convention, the term disabled person means an individual whose prospects of securing, retaining and advancing in suitable employment are substantially reduced as a result of a duly recognized physical or mental impairment.”

(c) Environmental definitions

  There has been a growing awareness over the years that the bio-medical and functional categories do not take into consideration the full range of issues encountered by persons with disability.  Specifically missing from these approaches are the role of social, cultural, economic or political limitations that result in disabilities.  A physical, sensory or intellectual impairment will not limit many individuals as much as being denied an education, the right to employment, or the right to marry and have a family of their own.

  In response to this realization, laws and conventions increasingly have included environmental issues, seeking to address the structural conditions in society that may limit the options of individuals with disabilities.   In this body of work, the focus of limitation has shifted from the individual to society.  The structural conditions in society resulting in disability would then need to be addressed and ameliorated.  The formulations of environmental definitions do not show the same consistency as the bio-medical and functional approaches.  This is not surprising since environmental definitions are not rooted in the more established definitions of disability. 

  The definition proposed by the Union of the Physically Impaired against Segregation, subsequently adopted by Disabled Persons International (a non-governmental organization), was perhaps the first to identify environmental factors as the cause of disability: "Disability is the loss or limitation or opportunities to take part in the normal life of the community on an equal level with others due to physical and social barrier."[106]

  In the early 1990’s, Belgium adopted a definition that delineates the environment in terms of need:

  "Persons with a significant limitation in their chances of social and vocation integration due to a deficiency or the definition of need; an alternation of mental, sensory or physical faculties which require social intervention.  The degree of disability to be taken into consideration is to be determined on the basis of a multi-disciplinary assessment."[107]

  Some countries and international organizations have adopted definitions that combine environmental criteria with aspects of the bio-medical and functional approaches.   Italy and Portugal combine the environmental with the bio-medical, while the Special Rapporteur of the (United Nations) Sub-commission on Prevention and of Discrimination and Protection of Minorities and the Organization of American States combined environmental and functional approaches in his own work.

(i)         Italy

Loi no 104 du 5 février 1992, portant loi-cadre relative à l'aide, à l'intégration sociale et aux droits des personnes handicapées (Gazzetta Ufficiale. 1992-02-17. no 30, pp. 1-38).

  Article 4 of the Act defines a “disabled person” as someone who has a physical, mental or sensory impairment, stable or progressive, resulting in difficulties in vocational training, in social life or in professional integration such as to be at a disadvantage and to lead towards social marginalization.

(ii)        Portugal

Decree Law no. 247/89.[108]

  A disabled person is considered as any individual who, because of limited physical or mental capacity, encounters difficulty in obtaining or holding a job suited to his or her age, qualifications and professional experience.

(iii)       Organization of American States

Inter-American Convention on the Elimination of All Forms of Discrimination Against Persons with Disabilities (AG/RES. 1608 (XXIX-0/99) of 7 June 1999.[109]

  Article I

  “1.        Disability

  “The term “disability” means a physical, mental or sensory impairment, whether permanent or temporary, that limits the capacity to perform one or more essential activities of life and which can be caused or aggravated by the economic and social environment.”

(iv)       United Nations Centre for Human Rights

Report of the Special Rapporteur of the Sub-commission on Prevention and of Discrimination and Protection of Minorities: Human rights and disabled person (1993):

  “Any person suffering from a permanent or prolonged functional disorder, whether physical or mental, which having regard to his age and social environmental entails considerable disadvantages for the purposes of his family, social, educational or occupational integration, and for the effective enjoyment of his human rights, shall be considered disabled.”[110]

(d)        Human rights approaches

  Human rights approaches use a different lens to address the issue of disability.   Rather than focus on disability from either an individual deficit or an environmental perspective, the human rights formulation is premised on the recognition of a set of fundamental rights to which all people are entitled.  By addressing the rights of all people the definition is found with reference to the breach of these rights rather than the delineation of characteristics of the person, consequently reducing the need for a specific definition.  The approach can make people uncomfortable because in the law there is a tradition of using “protected classes” as a unit of analysis - or the traditional way in which the rights of “vulnerable groups” are protected in domestic legal systems.  The other problem is that if the class is undefined, this can make Governments uneasy about the scope of their various obligations.  

  Examples of the use of this approach include the experience of Canada, South Africa, and Uganda.  In each of these cases, the guarantees in question are constitutional provisions rather than specific statutory or regulatory policies.

(i)         Canada

Constitution Act, 1982 (79); Canadian Charter of Rights and Freedoms[111]

 Equality Rights

  “15.      (1) Every individual is equal before and under the law and has the right to equal protection and equal benefit of the law without discrimination and in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age, mental or physical disability.

(2) Subsection (1) does not preclude any law, programme or activity that has as its object the amelioration of conditions of disadvantaged individuals or group including those that are disadvantaged because of race, national or ethnic origin, colour, religion, sex, age, mental or physical disability.”

(ii)        South Africa:

  Constitution of the Republic of South Africa, Act 108 of 1996[112]; see also Integrated National Disability Strategy White Paper (Office of the Deputy President, 1997).[113]

  Chapter 2, “Bill of Rights”, of the 1996 Constitution guarantees fundamental rights to all citizens.  Section 9 of Chapter 2, “Equality”, includes an equality clause, which states, “everyone is equal before the law and has the right to equal protection and benefit of the law”.  Equality “includes the full and equal protection of all rights and freedoms”.  Section 9 also provides that the “state may not unfairly discriminate directly or indirectly against anyone on one or more grounds, including … disability”.  Disabled people are thus guaranteed by the Constitution of the right to freedom, to be treated equally and to enjoy the same rights as all other citizens.

(iii)       Uganda

  Constitution of the Republic of Uganda, 1995[114]

  Chapter 4 – Human Rights and Freedoms

  “Rights of persons with disabilities

  “35.      (1) Persons with disabilities have a right to respect and human dignity and the State and society shall take appropriate measures to ensure that they realise their full mental and physical potential.

(2) Parliament shall enact laws appropriate for the protection of persons with disabilities.”

(e) The Americans with Disabilities Act, 1990[115]

  In the discussions it was noted that some regard the “Americans with Disabilities Act” (ADA) as a human rights formulation.  However, because the “Act” concerns itself with addressing the needs of a protected class – Americans with disabilities - it combines bio-medical, functional and environmental approaches.  ADA merits special mention because of its influence on the formulation of disability policy and legislation in a number of countries.

  In ADA the basic relation concerning disability is defined as a “physical or mental impairment that substantially limits one or more of the major life activities of such individual.”  This clause suggests that the medical/biological condition must lead to a reduction in a functional condition for a person to be disabled.

  However, ADA also introduces an environmental component through its delineation of three ways by which a person may be disabled.  The person may: (a) have an impairment, (b) have a record of such an impairment or (c) be regarded as having such an impairment.  What unifies these definitions is an emphasis on the individual as the unit of analysis.  Because of its strong emphasis on environmental interventions in the areas of transportation, communications, employment and public accommodations, ADA may be viewed as a law that bridges the functional and environmental perspectives. 

C. Disability data and statistics

  In addition to general statutes, disability is defined through other mechanisms, such as for purposes of collecting registration data and national statistical services.   There are a number of national and international measurement tools designed to provide epidemiological and demographic information on disability, which employ a variety of definitions for data gathering.  In the United Nations Disability Statistics Compendium,[116] the Statistics Division of the United Nations Secretariat found a wide range in the percentage of disabled persons in a review of 63 national censuses, surveys and registration systems from 55 countries; this ranged from 0.2 percent to 20.9 percent - and may result from the disparity in definitions of disability used.[117]   The report concluded:

"The high degree of variability in disability rates is at least partly determined by the selection and use of impairment and disability definitions and codes."[118]

  The first review and appraisal of the World Programme of Action concerning Disabled Persons supported the conclusion that socio-economic measures employed for disabled persons should be exactly the same as those used for the entire population.  In that review and appraisal the Statistics Division of the United Nations Secretariat concluded:

  "Indicators of opportunity and integration will very often match indicators developed on the same topics for other population groups.  It is imperative that these statistical indicators be similar, otherwise disabled persons are mistakenly viewed in the analysis as so uniquely different that comparisons with other groups cannot be made. Disabled persons are unique with respect to how they are studied in national surveys, primarily because of an impairment that is being reported.  In all other ways, the goals of survey measurement are the same: assessing demographic characteristics, social and economic status, patterns of school attendance and occupational histories, for example."[119]

  The conclusion paralleled other thinking on approaches policies and programmes related to persons with disabilities.  The approach, if broadened, could be applicable not only in data and statistical issues but in the formulation of disability-sensitive policies, the implementation of programmes and evaluation of results and outcomes.

  If there is general agreement that outcomes can be defined in the same way for persons with disabilities as for the entire population, the problem remains as to how the population with disabilities is to be defined for statistical purposes: if such a population is not defined and measured, how can progress towards equalization of opportunities be assessed?  If the definition is not held consistent over time, conclusions about outcomes may be driven more by changes in the definition then in progress towards specific targets.

D. Findings

  On the basis of the review and discussion of national and international definitions of disability, participants in Cluster Three reached a number of conclusions relating to efforts to define disability for different purposes:

• In legislation, the definition of disability employed depends on the purpose for which it is intended.  For example, a bio-medical definition may be appropriate if the purpose is clinical care.
• If the purpose is to promote human rights, as defined in United Nations Commission on Human Rights resolution 1998/31, or to further equalization of opportunities as presented in the World Programme of Action concerning Disabled Persons, deficit models will not contribute to these goals.

  Development offers countries an opportunity to employ useful definitions consistent with the principles of universal design.  As institutions in sectors such as education, communications and transportation are established, they can be designed so that they provide benefits to all members of society and are non-handicapping.  In such cases, the focus need not be on defining persons with disabilities but rather on establishing environmental and human rights constructs that offer reasonable levels of accessibility.

  Significantly, grouping together the numerous definitions of disability illuminates not only similarities in the types of definitions but also trends in definitions of disability over time.  Overall, the more specific bio-medical definitions of disability are, for the most part, definitions that were formulated in the earlier part of the twentieth century.  For example, in the censuses from 1840 to 1930, the United States had a disability definition of deaf, dumb, blind or insane.  Over the past two decades, definitions of disability have tended to become increasingly less categorical in nature, as reflected in the human rights formulations in the Constitutions of Canada, South Africa and Uganda.

There appears to be a diffusion of ideas found within definitions from one country to another.  Such a genealogy might be fruitfully pursued in further study.

  The importance of definitions of disability must be placed in proper perspective. How legislation is interpreted and enforced may vary considerably among countries.  For example, a relatively narrow definition of disability in a statute can be broadened by supporting regulations or by additional legislation, which ensure greater protection.   Cultural interpretations may also modify or override legal definitions.

  In reviewing definitions of disability, participants of Cluster Three observed that the use of language is often value-laden when there is no such need.  Within a human rights framework, the nomenclature used can intentionally or unintentionally undermine stated goals.  A word can have multiple meanings, pejorative in one context or language but not in another (for instance, handicap).

  This report of the proceedings of Cluster Three has not attempted to define aspects of human rights or equalization of opportunities.  Annex II to this chapter, below, discusses various dimensions of accessibility, since this has been identified by the United Nations General Assembly as a priority issue in furthering equalization of opportunities.[120]

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Chapter VII - Appendix 1

Technical note on data issues

  The variety of definitions of disability used by countries for policy purposes is matched by the variety of definitions used for data gathering.  If there is agreement that outcomes can be defined in the same way for persons with disabilities as for the entire population, a problem remains as to how the population with disabilities is to be defined for statistical purposes.  If such a population is not defined and measured, how can progress towards equalization of opportunities be assessed?  If the definition is not held consistent over time, conclusions about outcomes may be driven more by changes in definition than in progress towards specific targets.

For example, both Zambia and Tunisia have employed the census approach to collect disability data over three points in time.  Both countries have used an Impairment-based approach and have collected information in all three points in time on blind, deaf and/or mute and physical disability categories and usually on mental category as well.  As presented in Figure 1, even with these similarities, the categories changed for every census in Zambia and between the second and third census in Tunisia.   For instance, in its third census Tunisia collected data on the same broad groups but expanded category details.  In its second census Zambia added the mentally retarded and a combination of disabilities category.

  The most extreme change in approach is possibly the dropping of the “sick” category by Zambia between its second and third census.  An examination of the total disability rate for Zambia over time would suggest that there has been a steady decline in the prevalence of disability between 1969 and 1990.  While this may have been true between 1969 and 1980, as documented by Figure 2, the observed decline between 1980 and 1990 was caused by the elimination of the category for sick in 1990.  In 1969 and 1980, those counted as sick accounted for 50.8 percent and 37.8 percent of the reported population with disabilities.  Even if one assumes that (a) the prevalence rates for sickness dropped between 1980 and 1990 in a similar manner to the drop between 1969 and 1980 and (b) some persons who may have been reported as sick were reported in other categories in 1990, the elimination of that reporting category effects how the data are interpreted.  If the trend between 1980 and 1990 is examined employing the 1990 disability reporting structure, the prevalence rate per 100,000 did not decline from 1,615 to 936 but actually increased from 610 to 936 per 100,000.  This reflects a case in which categories reported as disabilities may influence resulting trends.

  The focus of this analysis is not on whether Zambia should or should not have included the sick category as a reported disability category in the national census.  The main point is that such an important decision has important ramifications.  Zambia dropped a census category – “sick”, which makes it possible to examine changes in other categories of disability between 1980 and 1990 (assuming other wording changes in the respective census categories did not influence the resulting trend).

Table 1. Disability categories used in three population censuses of Zambia and Tunisia

Sources:  Republic of Zambia, Census of Population and Housing 1969, Final Report, Volume I - Total Zambia (Lusaka, Central Statistical Office, 1973, pp. 11-14, Table 4 and p. 36, Table 18); and Tunisia, Institut national de la statistique, Recensement general de la population et des logements, 8 Mai 1975, Volume III, Caracteristiques demographiques, tableaux et analyses des resultats du sondage au 1/10eme75 (Tunis, Author, 1975) and Recensement general de la population et de l'habitat, 30 Mars 1984, Volume IV, Caracteristiques demographiques (Tunis, Author, 1984).

  This issue is also illustrated by Tunisian census data for adults 15 years of age and over.  A review of the census data indicate that despite the relative similarity of categories, the number of women reported with disabilities in 1975 was extremely low.   Between 1975 and 1994, while the number of disabled men reported more than doubled, the number of disabled women reported grew by over ten times.  As shown in Figure 3, this resulted in the percentage of women in the disabled population tripling between 1975 and 1994.  (The data indicate that this primarily occurred between 1975 and 1984.)   There are many reasons to speculate about whether disabled women were undercounted in 1975.  Whether the change is real or a statistical artefact, it can influence outcomes that are associated with gender.

Figure 1.         Prevalence rates for disabilities, Zambia, 1969, 1980 and 1990; and for sick and disabled persons, Zambia, 1969 and 1980

Sources:  Republic of Zambia, Census of Population and Housing 1969, Final Report, Volume I - Total Zambia (Lusaka, Central Statistical Office, 1973, pp. 11-14, Table 4 and p. 36, Table 18).

Figure 2. Percentage males and females among disabled persons, 15 years of age and older, Tunisia, 1975 and 1994

                           1975                                                          1994

      Females = 2,660                                      Females = 33,274

                       Males = 22,900                                          Males = 54,736

  Sources:  Tunisia, Institut national de la statistique, Recensement general de la population et des logements, 8 Mai 1975, Volume III, Caracteristiques demographiques, tableaux et analyses des resultats du sondage au 1/10eme75 (Tunis, Author, 1975).

  For instance, measurement of economic activity is a variable that traditionally has had a basis in gender studies since higher labour force participation rates generally are reported for men than women.  Tunisia provides a case study of the results of the increasing prevalence of disability reported for women 15 years of age and over and economic participation.  Between 1975 and 1994, reported economic activity rates for disabled Tunisians declined slightly.  However, as shown Figure 4, the rate for men actually increased over the period while the rate for women declined by over 70 percent.

  At least two factors may explain what appears to be an observed lack of progress in economic activity.  First, if economic activity rates tend to be lower for women than for men, as reported in the 1994 census of Tunisia, the increasing prevalence of women in the disabled population could have the effect of lowering the overall rate of labour force participation for all persons with disabilities.  Second, the participation rate for women in 1975 was higher than for men, suggesting that the 1975 female disabled population was undercounted to such an extent that those who were counted formed a population that may not have been truly representative.  Between 1975 and 1994, the number of reported disabled women in the labour force grew from 610 to 1,910 in Tunisia, which is more than a three-fold increase.

  Without a clear understanding of how the disabled population of Tunisia changed during this period, an economic activity indicator could be misinterpreted.  It might be concluded that participation in the labour force had deteriorated in Tunisia between 1975 and 1994 when the reverse may be true.  Certainly, an understanding of the characteristics of the women who entered the disabled population over the period would contribute to greater understanding in interpreting the economic indicator.

  In the case of Zambia, removal of sick persons from the disabled population in the1990 census influences the interpretation of the trend in economic activity.  Labour force participation rates rose for all men and women between 1980 and 1990.  For women, the rate almost doubled from 16 to 32 percent.  For sick and disabled women, the rate does not increase by as much, growing from 13 to 23 percent.  However, figure 5 indicates that if only disabled women are counted in 1980, the rate more than doubles from 10 percent to 23 percent.  While less dramatic, inclusion of sick men in the 1980 census inflates the rate for men.

  Equally important for purposes of analysis is that the definition of economic activity not change over time.  In many countries disability has been counted as a category of non-participants in the labour force.  To have a robust indicator, disability as a reason for non-participation in the labour force category has to be disassociated from measures of the disabled population.  If not, an effect of multi-collinearity would occur, where the dependent variable, or the indicator in this case, is so highly correlated with disabled persons that it is influencing trends in the indicator.

Figure 3. Economic activity rates by gender for disabled persons, 15 years of age and older, Tunisia, 1975, 1984 and 1994

*Note:  Rates for males and females for 1984 are interpolated due to lack of data for that year.

  Sources:  Tunisia, Institut national de la statistique, Recensement general de la population et des logements, 8 Mai 1975, Volume III, Caracteristiques demographiques, tableaux et analyses des resultats du sondage au 1/10eme75 (Tunis, Author, 1975) and Recensement general de la population et de l'habitat, 30 Mars 1984, Volume IV, Caracteristiques demographiques (Tunis, Author, 1984).

  How progress is measured in terms of economic activity and other indicators is also very important.  For instance even after removal of the “sick” category in the 1980 census of Zambia, the rate doubles for disabled women; the difference in rates between disabled and all women in 1990 is greater in 1990 than in 1980.  Thus, the faster rate of growth for disabled women than for all women can be viewed as progress while the increasing disparity in the rates could be viewed as a lack of progress.   In the light of this countries need to determine how rates will be interpreted and what is expected.  The indicator can then be judged in terms of progress towards targets and not in terms of arguments over statistical interpretations.

  To further implement the World Programme of Action concerning Disabled Persons, current and reliable data are essential for policy formulation, planning and evaluation.   While data improvements, as noted in the concluding remarks above, have been substantial, data for comparative analyses over time and across countries remain somewhat limited.  Data collection programmes in countries provide important opportunities to promote the use of new statistical concepts and methods.  The case studies for Zambia and Tunisia described how two countries have already produced useful data to measure progress towards equalization of opportunities.

Figure 4. Economic activity rates by gender for the entire population and for disabled persons, 12 years of age and older, Zambia, 1980 and 1990; and for sick and disabled persons, Zambia, 1980

      Males

     Females

  In connection with preparations for the year 2000 round of population and housing censuses, the United Nations prepared revised census recommendations[121] and for the first time recommended coverage of the topic of disability; the recommendations are applicable to both censuses and surveys.  If countries apply these recommendations to the 2000 round of censuses, great strides will occur in the availability of disability statistics for analysis and planning at all levels. 

  Countries are urged to consider developing statistics related to the target areas in the Standard Rules and to the environmental variables encountered by disabled persons.

  To measure the disability dimension, the United Nations recommend that a “person with disability” should be defined as a person who is limited in the kind or amount of activities that he or she can undertake because of ongoing difficulties due to long-term physical condition, mental condition or health problem.  Only disabilities lasting more than six months should be included.[122]   The United Nations recommend that, due to the limited space available in a census, a “Disability”-oriented question could be asked (as opposed to an “Impairment” or “Handicap” question).

  The discussion has so far focused on definitions derived from Impairment and Disability variables.  However, the measurement of critical life areas for equalization of opportunities also are needed; these could include measures on whether persons with disabilities are empowered to make decisions independently in their lives, have control over their use of time, have control over economic resources and are prepared for major changes.  Results in these areas often determine if outcome targets for equalization of opportunities will be achieved.  Because each individual's situation is unique and influenced by many factors, such as age, culture or location, it is important to understand the particular factors effecting each disabled person in his or her environment.  If the interactive nature of the concept is not assessed, then an understanding of the critical aspects of barriers to reducing disadvantage may be lost.

  Definitions related to Handicap may often be confused with the “target areas for equal participation” of the Standard Rules.[123]   One analyst has argued that there are two basic approaches to the evaluation of Handicap:  (a) estimation of the gap between persons with and without disabilities and (b) estimation of specific reductions in life roles.[124]  The first type of estimate is associated with the ultimate, desired outputs from the World Programme of Action and the target areas for equal participation in the Standard Rules.  The second type is discussed in annex II to this chapter, “accessibility issues”.

  Because of its influence on both of these dimensions, environmental variables can enhance or block achievement of the goals of the World Programme.  All dimensions need to be considered whatever goal is being pursued.  If both education and employment are target areas, then independence, use of time and related goals in education and employment must be evaluated.  For example, laws outlawing discrimination may allow all children to go to school but students may be ignored by their fellow classmates or not be provided the time they need to complete tasks.  Students with disability may be in a situation where they may have independence and mobility in school but their use of time and social integration experiences are not the same as for other students.  Or students with disability in school situations may have freedom of mobility and experience social inclusion but may not be prepared for the transition from school to work.  Programme monitoring needs to address systematically all Handicap dimensions.  Otherwise monitoring may indicate that environmental variables are changing in the desired way but that students with disability do poorly in school; the monitoring is not able to identify reasons for such a seemingly paradoxical situation.

  While these concepts may appear to be abstract, operational questions have been provided for the critical life area dimensions.   If life area dimensions are measured properly, not as individual abilities but as the actual circumstances in which people find themselves and which may place them at a disadvantage, then programmes can target those specific life areas that have the greatest impact on equalization of opportunities.

  Other programmes of the United Nations collect data and statistics related to persons with disabilities, mainly for purposes of monitoring and evaluation, in addition to the work of the Statistics Division of the United Nations Secretariat.  For instance, the Special Rapporteur on Disability of the Commission for Social Development conducted a survey to assess progress in implementation of the Standard Rules; responses were received from 83 countries.  The International Labour Organization (ILO) collects data to monitor implementation of ILO Convention Number 159 (vocational rehabilitation) and has received data from the 54 countries that have so far ratified the Convention.  Since 1980 UNESCO has collected information on practice in special education; its latest review contains data for 52 countries.  These sources are important because the individual is not necessarily the unit of analysis; the focus is on country policies and practices.

  To promote the implementation of the Standard Rules, the Special Rapporteur meets with Governments, participates in conferences and actively engages in correspondence and communications.  To monitor the implementation of the Rules, the Special Rapporteur conducted questionnaire surveys in November 1994 and August 1995.  The first survey received 38 submissions while the second had 83 responses, a response rate of 45 percent.  

  Findings from the second survey of the Special Rapporteur are summarized below:[125]

(a)        General Policy. Seventy of 82 countries responding stated that they had a disability policy, with 60 having disability policy expressed in national law. 

  In terms of policy emphases, the survey showed that most countries direct more emphasis on individual support (in terms of prevention or rehabilitation) than on accessibility.   This suggests that current disability policy is more the traditional welfare-oriented than human rights-oriented.  In terms of actions taken to promote the Standard Rules, 64 of 79 countries reporting identified support for public information campaigns and for translation of the Rules into the national language.

(b)        Rule 15, Legislation. Fifty-six out of 81 countries responding stated that they had passed specific amendments related to the rights of disabled persons within the general legislation, while 10 reported use of special legislation to protect the rights of disabled persons.  The majority of countries responding stated that mechanisms have been adopted to protect the rights of disabled persons, with the most common judicial mechanism reported being legal remedy through the courts and a governmental (administrative) body being the most-common non-judicial mechanism.

(i)         Education.     Of the 82 countries reporting, 55 stated that disability is not used as the basis for differential treatment.  Twenty-seven reported that persons with disabilities are not considered to be full-fledged citizens in a number of areas:

(1)        no guarantee of the right to education and to employment - 10 countries;

(2)        no guarantee of the right to marriage - 17 countries; and

(3)        no political rights - 14 countries.

(ii)        Employment, income maintenance and social security.  In most countries, one or more of social security and welfare services are not within the legal framework guarantee to all:

(1)        no benefits guaranteed - 4 countries;

(2)        no guarantee of the right to health or medical care - 10 countries;

(3)        no guarantee of the right to training, rehabilitation and counseling - 14 countries;

(4)        no guarantee of the right to financial security - 24 countries;

(5)        no guarantee of the right to employment - 27 countries;

(6)        no guarantee of the right to independent living and participation in decision-making - 34 countries; and

(7)        all benefits guaranteed - 33 countries.

The survey data suggest that Governments are more advanced in establishing laws guaranteeing civil and political rights than in establishing laws guaranteeing social and economic rights.  The more specific the legal guarantees, the stronger the protection for persons with disabilities.  Since the adoption of the Standard Rules by the General Assembly in 1993, 47 percent of the countries responding to the second survey reported having adopted legislation that protects persons with disabilities against discrimination and other forms of unjust treatment.

(c)        Rule 5, Accessibility.   Twenty-three of 83 countries responding reported that they had not enacted any laws or regulations on establishing standards for the built environment.  Forty-two percent of the countries responding reported the existence of accessible means of public transportation.  Eighteen reported no measures at all to facilitate accessibility to the built environment.  Twenty-six countries reported that no special transport arrangements were provided to persons with special needs.  Forty-two countries reported that there was no disability awareness component in training programmes of planners, architects or construction engineers.  In terms of communication, 26 out of 80 countries do not employ sign language in the education of deaf people while 34 provide sign language interpretation for any purpose.  Survey results show that 71 of 81 countries provide literature in Braille or on audiotape; 45 countries provide news magazines in Braille or on audiotape and 25 provide large print readers.  Services for the blind and visually impaired are more available than for those who are deaf or mentally disabled.

(d)        Rule 18, Organizations of persons with disabilities.  Sixty-three of 81 countries reported the existence of a national umbrella organization for persons with disabilities.   In 31 of 80 countries or 39 percent, there are no legal provisions to mandate participation of representatives of national disability organizations in policy-making.  In 65 of 80 countries, umbrella organizations receive financial support from Government.

(e)        Rule 17, Coordination of work.   Sixty-two of 83 countries reported that a coordinating committee or similar body concerned with disability had been established.  Organizations of persons with disabilities are represented on the majority of these committees.

(f)        Rule 6, Education.  UNESCO provided the Special Rapporteur with information related to special education, based upon a survey conducted in 1993 to 1994 period.  The UNESCO questionnaire was sent to 90 Governments, of which 63 responded:

(1)        Legal representation of the right to special education: 44 of 65 responding Governments reported that general legislation applied to children with special educational needs.  Thirty-four reported that children with severe disabilities were excluded from education, with 18 of the 34 reporting legal exclusion from public education.

(2)        Parents role: 22 of 53 Governments responding reported that the parent's role in decision-making concerning placement is fully recognized.  Seven Governments reported that parents have only the right to appeal, and 24 reported that parents' involvement is limited.

(3)        Education forms and issue of integration: 33 of 48 Governments responding report that less than one percent of pupils are enrolled in special education programmes; some progress towards integration has been achieved over time.

(4)        Special education legislation: 16 of 52 Governments responding to a 1991 UNESCO survey on the position of national law concerning special education reported that special education was financed totally by the States and/or local authorities; in 10 disabled children in regular schools were expected to follow the regular curriculum; and in the majority of the reporting countries, the Ministry of Education is responsible for organization of special education services.

(g)        Rule 7, Employment.  ILO provided the Special Rapporteur with information related to employment of persons with disabilities based upon information for its survey on ILO Convention Number 159 (vocational rehabilitation), which began in 1996. By early 1996, 54 countries had ratified the Convention; ILO considers the Convention to be applied in its entirety in 11 countries.  Survey data indicate that measures least implemented involve vocational rehabilitation in rural areas (10 countries), cooperation with organizations of persons with disabilities (7 countries) and availability of qualified staff (8 countries).   The measure implemented in almost every country relates to employment anti-discrimination provisions.

The Special Rapporteur concluded that no country has fully implemented the Standard Rules.  The data do indicate that the Rules have been used as guidelines for drafting new legislation and national plans of action and for evaluating programmes and policies.   Nearly 85 percent of Governments responding state that the Rules have contributed to a positive rethinking of policies. 

  The Special Rapporteur submitted the following recommendations for further work:

(a)        Measures to make the Standard Rules better known must continue and be strengthened at both national and international levels.

(b)        Although United Nations agencies generally are familiar with the Standard Rules, a form of inter-agency mechanism should be established to improve coordination and identify areas for cooperation and joint action with the role of the United Nations Secretariat as focal point in implementing the Rules strengthened.

(c)        Because disability measures generally are not integrated into development activities, such as the World Bank development activities, disability measures must be strengthened and integrated into mainstream technical cooperation.

(d)        Because most Governments still emphasize prevention and rehabilitation, advisory services and support to Governments on request to develop disability policies based on the Standard Rules must be strengthened.

(e)        Because the protection of human rights is weak, cooperation between United Nations bodies and organizations as well as the non-governmental community in the disability field should be continued and developed.

(f)        Although the “Salamanca Statement and the Framework for Action”[126] are promising developments for education, conditions should be created for UNESCO to give more vigorous support to Governments in the area of special education.

(g)        Governments which have not already done so are urged ratify ILO Convention Number 159, and those which have ratified it are urged to strengthen their efforts to reflect the provisions of the Convention.

(h)        ILO, in cooperation with other United Nations agencies, should take the lead in assisting Governments to formulate policies to promote equal job opportunities.

(i)         To achieve the goal of full participation, information exchange and cooperation drawing on the experience of industrialized countries should be encouraged to assist all Governments to develop accessibility measures.

(j)         Governments are urged to strengthen their support to the work of organizations of people with disabilities.

(k)        Because of a lack of common monitoring and evaluation procedures under Rule 20, Monitoring and Evaluation, the United Nations should take measures to assist Governments on request to build their own monitoring and evaluation systems.

(l)         Because the Standard Rules do not contain any rules on shelter and housing, a rule on housing and shelter would represent a needed supplement to the Standard Rules document.

  In summary, the Special Rapporteur concludes that although the Standard Rules should continue to play a significant role in policy development, the overall human rights perspective should be further developed in the context of the Rules.  Both the needs of the child and the gender perspective should receive more attention in future implementation studies.

  Data development, particularly in the analysis of the situation of disabled persons, represents one of the major areas of progress in United Nations initiatives on disability.    To support country-level monitoring activities, the United Nations should continue work on the development of techniques for monitoring variables related to the environment, access and empowerment.  The United Nations could also commit to monitor routinely and publish the number of countries that have implemented ILO Convention 159, the number of countries who have adopted each of the Standard Rules, and the number of countries in which rural areas have access to community-based rehabilitation services.

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Chapter VII - Annex II

Technical note on accessibility issues

  Access and accessibility are concepts that are addressed throughout the World Programme of Action concerning Disabled Persons.  The first time access is mentioned in the World Programme is in conjunction with the definition of Handicap:

  "Handicap is therefore a function of the relationship between disabled persons and their environment.  It occurs when they encounter cultural, physical or social barriers, which prevent their access to the various systems of society that are available to other citizens.  Thus, handicap is the loss or limitation of opportunities to take part in the community on an equal level with others."[127]

  The concept of accessibility is first discussed in the World Programme in conjunction with the definition of equalization of opportunities as “the process through which the general systems of society are made accessible to all”.[128]  

  Instead of the term access, the Standard Rules on the Equalization of Opportunities for Persons with Disabilities use the term "available" instead of "accessible" in the connection with its definition of equalization.  This may be due to the fact that one of the Standard Rules, Rule 5, deals with Accessibility.[129]

  Viewing these fundamental concepts in a holistic context would suggest that Handicap is the opposite of equalization of opportunities as analysed along the plane of access.   If access occurs, equalization of opportunities occurs.  If access is denied, Handicap ensues.  Equalization of opportunities is a positive value; Handicap is a negative.  Access is the unit of analysis.  An understanding of key issues related to access is a prerequisite for the design of programmes to enhance equalization of opportunities and prevent Handicap.

  Although addressed several times in the World Programme, access is mainly discussed with reference to societal elements that should be made accessible to all, such as community services.[130]  The Standard Rules identify the physical environment and information and communication environments as target areas for accessibility in Rule 5 - Accessibility.  In a broad sense, all target areas for equal participation - Rules 5 through 12 of the Standard Rules - are concerned with particular accessibility concerns.  As noted above, Rule 5 – Accessibility - focuses on accessibility in the physical and information and communication environments; Rule 6 - Education - aims to ensure accessibility to education, while Rule 7 – Employment - aims to ensure accessibility to employment, and so on for the other target areas.[131]

  The concept of accessibility is a critical concern throughout the World Programme and the Standard Rules. Both documents identify target areas for which persons with disabilities as well as non-disabled persons should be provided access.  General Assembly resolutions on disability policies and programmes have addressed accessibility and reaffirmed its priority role in furthering equalization of opportunities.[132]

This annex will examine issues related to evaluating accessibility as these pertain to disability-sensitive policies, plans and programmes.  The issues relate in particular to critical aspects of access.  While one can equate accessibility with availability and have reasonable expectation that as gaps between persons with disabilities and the non-disabled close, access is occurring.  An understanding of the key elements of access in any given situation is critical to successful implementation of the World Programme and related international instruments.

  To derive such elements, the distinction between the environment, participation and access must be clarified.  If one examines employment, it is important to note that equal participation in employment is a targeted area for action in both the World Programme[133] and the Standard Rules (Rule 7).  Equal participation takes place if equalization of opportunities to participate is provided through measures to enhance accessibility to employment opportunities.  However, elements of accessibility are characteristics of environmental availability but not characteristics of the environment.  A person may obtain employment, but if he or she has not been provided with access to all aspects of an employment situation, full participation has not occurred in that environment.

  Environments can differ greatly.  As an employment environment can different from an educational environment, employment situations can differ from each other significantly.  The question thus arises about whether there are critical elements of any circumstances that must be made available to an individual for him or for her to have true access to any particular situation.  If an understanding of these elements is to be useful in an international context, the elements should have certain unambiguous attributes.  These attributes must take into account social phenomena because of their important influence on implementing the World Programme and the Standard Rules.  The attributes must provide a comprehensive profile of circumstances individuals face so that a complete understanding of all the prerequisites of access is obtained.  The attributes must take into account differences in people by culture, place and age so that they have the widest applicability across countries in establishing a universal design for purposes of policy formulation, planning and evaluation.   Finally, the attributes should have the capacity to be analysed from the environmental point of view so that the focus is not always on changing the individual but on changes in the environment.

  Although the World Health Organization's Handicap taxonomy from the International Classification of Impairments, Disabilities and Handicaps (ICIDH),[134] does not purport to be a classification of accessibility, the dimensions described provide a framework to discern the essential elements of accessibility.  Four key characteristics of the framework corresponding to the four requirements for discerning the dimensions of access given above lend it to being a useful tool for identifying key issues in accessibility.

  First, Handicap is conceptualised as a social phenomenon.  By elaborating a plane of experience that reflects "...the response of society to the individual's experience, be this expressed in attitudes, or in behaviour, which may include specific instruments such as legislation..." and by recognizing that "...the essence of an adverse valuation by society is discrimination by other people...” the concept of denial of access is embedded in the design.[135]

  Second, the Handicap taxonomy of the ICIDH is designed to provide a holistic profile of the circumstances that individuals face.  When employing the taxonomy, "...it is desirable that individuals always be identified on each dimension..." of the Handicap classification.[136]  Instead of a classification of individuals, a comprehensive "...classification of circumstances in which disabled people are likely to find themselves, circumstances that place individuals at a disadvantage to their peers when viewed from the norms of society..." is provided.[137]  By stating that analysis of this level is inappropriate unless a variety of dimensions are systematically evaluated, the taxonomy potentially allows for identification of the important dimensions in a situation to enhance access.

  Third, the taxonomy envisions that both age and cultural factors need to be taken into account in the evaluation of circumstances.  This offers the possibility of evaluating access to the environment, for instance for a middle-aged woman in Bahrain who may not wish to participate in the labour force, a baby girl in Ethiopia, a retired man in Singapore or a middle-aged man in the United States.  This provides for flexibility and allows for a realistic view of access for both adults and children in countries.

  Fourth, by emphasizing social and cultural factors, the dimension offers the potential to move beyond the individual to the family as the unit of analysis or even community.   This allows for outcomes to be identified for which barriers may need to be removed to assure accessibility.  Circumstances identified in the taxonomy could be attributes that correspond well to those places where discrimination against persons with disabilities often occurs.  The focus would not be on the ability of individuals, including children, to fulfil age-appropriate roles but on increasing capacities of families and society to enhance these roles.

  There are, however, several problems with the organization and focus of the actual Handicap scales in the ICIDH that hinder their use.  Instead of directly addressing the issue of access, each Handicap survival role is delineated in terms of the individual's ability to conduct an activity.  By focusing on individual abilities, identification of accommodations that will advance equalization of opportunities if access required is limited.  Since social and physical environments may be more limiting than any Impairment or Disability, the emphasis on individual ability and de-emphasis of the concept that environmental modifications enhance quality of life, the scales are limited in their applicability in the areas of educational, health and economic security policy.  Since people either have or do not have access, dimensions of access cannot consist solely of things people do but of things that people have.

  There are particular characteristics of the actual scales that can hinder their use.   First, the scales in the ICIDH focus on the reduction of Handicap rather than on achieving positive targets.  While a successful programme should reduce barriers to access, a primary focus should be achieving greater access to culturally and age-appropriate elements of the environment.  Through a positive measure of at least one of the dimensions, that of economic self-sufficiency, the possibility of a system that would classify circumstances in a positive way to enhance individual, family and community capacity is raised.  Second, the scales do not distinguish higher levels of access.   Thus, the Handicap scales differentiate well among the lowest levels of access but not as well among individuals with enhanced access.  There is no provision for advanced levels of access, except for the economic self-sufficiency scale.  Finally, the scales do not take into account issues related to the changing nature of life roles as people grow, develop and age.  Life role issues relate to access to those aspects of the environment that can prepare people for changes in their life situations and enhance their readiness for coping with age or culturally-related expectations that can occur in the course of one's life.

  Since their introduction, the Handicap scales of the ICIDH have not been used extensively.  As an organizing framework to review access, the scales have potential, because of their comprehensive view of circumstances.  In examining circumstances regardless of age, individuals and their families cope with a variety of dimensions related to coping with the environment. 

  Universality of accessibility dimensions can be seen in a brief review of the circumstances in which a baby must cope.   First, on a basic level, babies must interpret and inform their environment.  They receive information and, in their own way, interpret it:  a smile or a hug provides information for a baby to interpret.   To the extent possible, babies send information out to their environment.   Such exchanges over time provide infants with a sense of who they are.  While one can focus on the abilities of an infant to engage in such exchanges of information, the analysis also can focus on the ability of the environment to engage in a meaningful exchange with the baby.

  Second, babies must exercise some control over themselves and their environment.   A baby's capacity to make choices in an adult context is limited.  However, from an early age babies have some independence in engaging their environment and in making basic decisions about coping.   For instance, if a baby cries and there is some response, the baby learns some sense of control.  One can focus on the ability of the environment to enhance a baby's sense of basic control over how things happen in the environment (in an age appropriate manner).

  These first and second dimensions deal with the “who” and “how” of access, and the third and fourth dimensions relate to the “where” and “when”. To some extent, babies travel in their environment.  At first, it is not very far but as they become toddlers their travels increases.  Likewise, babies can use the time to engage in age-appropriate actions or activities, even if it is just crying.  One can explore the ability of the environment to enhance where and when babies do things.

  Environments also expect babies to interact with other people in some way and to make use of the small amount of resources available to them.  Thus, not only who the baby is, is an important consideration but with whom babies interact is important as well.   What tools a baby has to cope with the environment can be critical, even if the tools are as basic as a blanket or a rattle.

  Finally, even during the first few months, babies are expected to grow and develop.   The expectations on them after two or three months may be quite different from when they are born.  The ability of the environment to enhance a baby's readiness for such change can be discerned and altered.

  The six Handicap scales of the ICIDH identify elements related to the first six of these seven dimensions by allowing for consideration of circumstances of access:

(1) orientation for who one is,

(2) physical independence for how one does things,

(3) mobility for where one is,

(4) occupation for when one is doing things,

(5) social integration for with whom one interacts and

(6) economic self-sufficiency for what people have. 

  Only the dimension of change is missing: consideration of the elements related to access to transition or preparation for change can be used to provide a holistic evaluation. Examination of each dimension highlights the potential use, with appropriate modifications, of the Handicap elements.

  The World Programme of Action calls for access to recreation and cultural activities through the provision of information in alternative formats, such as Braille and tapes for persons with visual impairments or as aids for deaf persons.[138]  In Rule 5, the Standard Rules also calls for access to information, suggesting several strategies for accommodation.[139]  Individuals with limited access to sensory input may have difficulty obtaining information that is critical to learning particular concepts or acquiring necessary skills in the transition process.  Those with such cognitive deficits are at risk of experiencing disadvantages in terms of assimilating vast amounts of information within specific and often highly structured time frames.  Consequently, persons with disabilities may need specific accommodations to provide them with access to opportunities that will preserve and expand their range of options.

  The concept of a Handicap in orientation relates to these issues.  Where the original scale referred to an individual's ability to orient in relation to surroundings, the concept can be employed in relation to access to information exchange within the context of typical day-to-day functioning, including people, places, and things.   This can be measured by the satisfaction with the level or type of conversations or interpretation to surroundings and adaptation by either the individual or the environment to unanticipated events or situations.

  Three key elements relate to orientation.  First, the reception of information can be evaluated for access to the means of communication the individual chooses to receive information, such as Braille, readers, telephone relay services, sign language interpreters and universal symbols.  Second, the process of information interpretation can be assessed for access to mechanisms for facilitating the individual's response to information received, such as pneumonic devices, appropriate time allowance for response and personal assistance services.  Finally, the expression of information can be explored for access to modalities for translating the individual's expressive communication to others, such as relay services, sign language interpreters and personal assistance services.

  The original concept of physical independence focused on a degree of dependence on devices or others.  The principles of the World Programme and the Standard Rules appear to focus on access to choice in the performance of personal activities.   Hence, if one uses personal assistance services, one can be independent if one makes choices in relation to the receipt of those services and exerts control over how those services are delivered.  Full independence occurs when one can make choices over personal self-care and other aspects of daily living.

  Mobility was originally defined in terms of the individual's ability to move about easily and effectively in the surroundings.  Certain aspects of the original scale are useful in evaluating the extent of an individual's travel.  Thus, mobility can refer to the access of the individual to his or her surroundings.  Ideally, age-appropriate access to travel within surroundings at a desired given time should be unrestricted.

  Occupation was originally equated with use of time.  Use of time refers to access to activities customary to age or culture for a typical period.  Thus, persons would have age-appropriate access to work, leisure, home and community activities that are customary for age, such as play or recreation, education or school, employment, domestic activities and the elderly pursuing activities customary to their age group.  A general routine includes a customary balance between work, leisure, home and community productivity.  An important point here is that an individual may be able to conduct a major activity but has to spend so much time to travel to the activity or prepare (i.e., dressing or bathing) that the use of time in leisure activities is severely affected.   A holistic profile of time use for the individual is required, as anticipated in the original Handicap concept.

  A Handicap in social integration originally was defined as the individual's ability to participate in and maintain customary social relationships.  From an access perspective, it can refer to access to emotional, physical, or situational support.   Age-appropriate access to desired contacts with a widening circle of persons would result in full participation in all customary social relationships (i.e., social network extends beyond immediate family and includes an assembly of friends and acquaintances with whom reciprocal support for meeting personal needs can be accomplished). 

  Economic self-sufficiency originally was defined as the individual's ability to sustain customary socio-economic activity and independence.  However, the original scale construct was placed in terms of wealth.  Thus, it can refer to access to customary socio-economic activity and independence.  Its scale construct consists of age-appropriate access to economic self-sufficiency from the reference point of zero economic resources, but, unlike the other Handicap scales, the construct was extended to include possession or command of an unusual abundance of resources; the justification for this extension is the potential that abundant resources provide for relieving or ameliorating disadvantage in other dimensions.  If one is fully self-sufficient, one has economic self-sufficiency without support from or dependence on financial or material aid from other individuals (including the state, but compensation or standard disability, invalidity, or retirement pensions shall be regarded as income entitlement rather than aid in this context) and such that the burden of attempts to ameliorate handicap and disability can be accommodated without appreciable deprivation.  Through a positive measure of economic self-sufficiency, this Handicap scale points the way towards a system to evaluate access that would classify circumstances in a positive way to enhance individual, family and community capacity. 

  While these dimensions constitute important aspects of access, experience since the World Programme was adopted has shown that how the environment interacts with individuals changes over the course of their lives.  Thus, individuals may have good access at one age but not at others or they may have good access in a rural environment but not an urban environment.  The concept of transition refers to access to quality preparation prior to major situational changes in life phases.  Thus, one would have access to environmental resources to enhance readiness.  Full access to transition occurs when one fully engages in activities to provide the necessary skills, experience, and training required to perform age-appropriate activities that may result in independence and currently has to resources (networks, transportation, family support, etc.) or access to resources to pursue these goals.

  Restrictions in access to transition are not just simply determined by changes occurring in two points in time.  Rather they are a product of the impact of social, political, economic and attitudinal context in which a person engages in efforts to improve one's readiness for major life changes.  While one's educational attainment is sometimes used as a proxy of preparation or readiness, such attainment is usually measured in terms of formal educational level achieved.  Transition is not a measure of individual educational attainment nor of school attendance but of active engagement in any processes designed to prepare one's life situation.  There are many dimensions to transition access.

  One can have access to preparation for age-related changes in major life states - the nature of a person's access to programmes, organized activities, whether public or privately provided, designed to prepare the person for anticipated changes in major life states.  The usefulness of the programme or activity is a function of the character of the habitation or rehabilitation or other life preparation programme, including its availability, appropriateness, cost and suitability for the person's preparation requirements.  In early life, transitions relate to movement from pre-school role to student include access to activities designed to make children ready for school.   Later, transitions relate to movement from student to worker are concerned with vocational readiness and could assess career counseling and other programmes for vocational training or career reorientation.  Transitions also relate to movement from worker to retiree.

  Aside from age-related transitions, there are other demographic transitions for which preparation may be of concern.  Marital and migration status are also related to age-related transitions but raise their own issues that are different from the view of play, school, work and retirement as major activities.  Moreover, there are also health transitions of concern for access, including transitions related to anticipated changes due to or associated with genetic conditions (such as Usher's Syndrome[140]), disease (such as HIV/AIDS) or rehabilitation.  Health-related transitions may be age related, such as preparations for general ageing, or death.

  One can also have access to transitions associated with services - the nature of a person's access to preparation for anticipated changes in services received.  The situations can encompass changes within and across community services; for example, involvement with several different services for medical and rehabilitative care; involvement with social and welfare and educational and vocational services received.   A person's access to preparation for anticipated changes in their physical settings can also be assessed.  The situations can encompass a change in the setting for treatment, living, studying or working; for example, home to hospital; rural to urban residence, family to group residence, home to school dormitory; orphanage to adoptive home; institution to community residence.  There may also be issues related to citizenship readiness, such as access to preparation related to financial obligations, to the civic responsibilities of citizenship and to various other societal expectations.

  With these seven concepts in place, the extent of access to a situation can be explored.  The target areas from the Standard Rules can be evaluated, with each Rule being assessed for access along each of the dimensions.  With such an assessment of all of the Rules, the access profile of an individual's life circumstances could be assessed as intended in the original Handicap classification.  However, a community could also be assessed for its accessibility.  A community may find its educational programme is accessible in all dimensions, except mobility while recreation may only be accessible in the mobility area.  From this kind of analysis, appropriate environmental modifications can be planned, based on the accommodations required by those actually living in the community.

  There are measurement issues as noted in annex 1 (above).  It may be possible that qualitative information at the community level may best inform the degree of access in the community.  The challenge for monitoring is to compile systematically such information as an agent for change.  If this challenge is addressed, with all appropriate caveats, useful information may be derived.

  If nothing else, the dimensions serve as a checklist for access.  Communities can ask themselves in any situation the following questions: 

(1) is information accessible?

(2) do all people have choices?

(3) can all people travel in the situation?

(4) do all people spend the same amount of time in a situation?

(5) are people integrated?

(6) do all people have the resources to participate?

(7) are people prepared for change in the situation? 

  If persons with a disability, their families and non-disabled persons address most questions positively, progress towards accessibility probably has occurred.  Progress should lead to the reduction of Handicap and fostering of equalization of opportunities.

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[97] See Official Records of the Economic and Social Council, 1998, Supplement no. 3  (E/1998/23).

[98]   This exploration of definitions is limited to laws related to general statutes.

[99] Adapted from Marcia Rioux, "Disability: the place of judgment in a world of fact", Journal of Intellectual Disability Research, vol. 41, no. 2 (April 1997) pp 102-111.

[100] <http://natlex.ilo.org/txt/E96IND01.htm>

[101] <http://natlex.ilo.org/txt/E98IRL01.htm>

[102] <http://natlex.ilo.org/txt/E90CHH01.htm>

[103] <http://natlex.ilo.org/SUBDOCS/e-1gbr01.htm>

[104]  <http://www.dinf.org/doc/intl/z15/z15007le/z1500703.htm>

[105] < http://ilolex.ilo.ch:1567/scripts/convde.pl?C159>

[106] “Preamble” to the Constitution of Disabled Peoples International <http://www.dpi.org/cotution.html>.

[107] Décret du 3 juillet 1991 relatif à l'intégration sociale et professionnelle des personnes handicapées (Moniteur belge. 1991-07-30. no 145, pp. 16773-16781).

[108] “Comprehensive law of prevention, rehabilitation and integration of handicapped persons”, Article 3; see also Ley núm. 9/89 de bases de la prevención y de la rehabilitación e integración de las personas que sufran una deficiencia (Díario da República. 1989-05-02. Serie I, n. 100, ps. 1796-1799), whose Article 2 defines a person with disability: “a person who, because of a loss or abnormality, congenital or acquired, of psychological, intellectual, physiological or anatomical structure or function susceptible of causing limitations to capacity, may be considered in disadvantageous situations for the fulfillment of activities considered normal, taking into account age, sex and the prevailing socio-cultural factors.” <http://www.gladnet.org/infobase/employment/Policies/portugal.htm>  

[109] < http://www.oas.org/juridico/english/treaties/a-65.htm>

[110] Leandro Despouy, Human rights and disabled persons, Human Rights Study Series No. 6 (United Nations publication, Sales No.: E.92.XIV.4), paragraph 104.

[111] <http://laws.justice.gc.ca/en/charter/index.html>

[112] <http://www.concourt.gov.za/constitution/index.html>

[113] <http://www.gov.za/whitepaper/1997/disability.htm>

[114] <http://www.parliament.go.ug/Constitute.htm>

[115] Public Law 101-336 of July 26, 1990; 104 Stat. 327; 101^st Congress  <http://natlex.ilo.org/txt/E90USA01.htm>.

[116] Statistics on Special Population Groups, Series Y, No. 4 (United Nations publication, Sales No. E.90.XVII.17).

[117]  Some would observe that this reflects the futility of using a single, uniform definition even for counting persons.

[118] Statistics … op. cit., p. 15.

[119] United Nations Secretariat. Department of International Economic and Social Affairs. Statistical Office. (1987). “Review and appraisal of progress achieved and obstacles encountered in the implementation of the World Programme of Action concerning Disabled Persons during the first five years of the United Nations Decade of Disabled Persons, with particular reference to (a) prevention, (b) rehabilitation, (c) equalization of opportunities and (d) role of disabled people and their organizations at (i) national, (ii) the regional, and (iii) the international levels: development of statistics for monitoring the implementation of the World Programme of Action concerning Disabled Persons (CSDHA/DDP/GME.CEP.4)”  Paper presented at Global meeting of experts to review the implementation of the World Programme of Action concerning Disabled Persons at the mid-point of the United Nations Decade of Disabled Persons (Stockholm, 17-22 August 1987).  The importance of strengthening and improving statistics on disability is discussed and recommendations for further action presented in “Evaluation of the implementation of the World Programme of Action concerning Disabled Persons during the first half of the United Nations Decade of Disabled Persons; report of the Secretary-General (A/42/561)”; General Assembly resolution 42/58, of 30 November 1987, “encouraged” bodies and organs of the United Nations “to take into consideration the specific needs of disabled persons when elaborating their programmes and operational activities” (operative paragraph 7).

[120] General Assembly resolution 52/82 of 12 December 1997 <http://www.un.org/esa/socdev/enable/disimpe0.htm >; see also the monograph “Programme monitoring and evaluation in the context of development” <http://www.un.org/esa/socdev/enable/monitor>.

[121] Principles and Recommendations for Population and Housing Censuses; revision 1.  Statistical Papers, Series M, No. 67/Rev.1 (United Nations publication, Sales No. E.98.XVII.8)

[122] Ibid. para 2.262.

[123] <http://www.un.org/esa/socdev/enable/dissre04.htm>

[124] Chamie, Mary. 1992, “A perspective for considering the classification of Handicap” (unpublished paper); see also Scott Campbell Brown. (1993). “Revitalizing ‘Handicap’ for disability research”. Journal of Disability Studies  (vol.4, no. 2).

[125] “Final report of the Special Rapporteur of the Commission for Social Development on monitoring the implementation of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (A/52/56, annex) < http://www.un.org/esa/socdev/enable/dismsre0.htm>.

[126] Report of the World Conference on Special Needs Education (Salamanca, 7-10 June 1994) (UNESCO, Paris) < http://www.unesco.org/education/educprog/sne/salamanc/covere.html>.

[127] A/37/351/Add.1/ and Add.1/Corr.1, annex, para. 7 < http://www.un.org/esa/socdev/enable/diswpa00.htm>.

[128] Ibid. para. 12.

[129] General Assembly resolution A/48/96, annex, para 24 and Chapter II, Rule 5.

[130] World Programme of Action, op.cit. para 25.

[131] Standard Rules, A/48/96, annex, op.cit. < http://www.un.org/esa/socdev/enable/dissre04.htm>.

[132] General Assembly resolution 52/82, of 12 December 1997, operative paragraph 4 < http://www.un.org/esa/socdev/enable/disimpe0.htm>.

[133] World Programme of Action, op.cit. para 128-133.

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

[135] Ibid. p. 26 and 29.

[136] Ibid. p. 184.

[137] Ibid. p. 183.

[138] World Programme of Action, op. cit.,  para 135.

[139] Standard Rules, op. cit., Rule 5.

[140] Usher's syndrome is a form of Retinitis Pigmentosa (RP), which results in deafness. Usher's syndrome is the cause of approximately 10% of all hereditary deafness, with deafness existing at birth or developing soon afterward http://www.kellogg.umich.edu/conditions/retina/ushers.html.

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