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Annex I

ISSUES IN ACCESSIBILITY

Access and accessibility are concepts that are addressed several times throughout the World Programme of Action concerning Disabled Persons. The first time access is mentioned is in conjunction with the definition of Handicap, as follows: "Handicap is therefore a function of the relationship between disabled persons and their environment. It occurs when they encounter cultural, physical or social barriers that 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."[1] The concept of accessibility is first discussed in conjunction with the definition of equalization of opportunities as the process through which the general systems of society are made accessible to all.[2] Instead of access, the Standard Rules on the Equalization of Opportunities for Persons with Disabilities uses the term "available" instead of "accessible" in the context of defining equalization, perhaps because one of the Rules, Rule 5 is Accessibility.[3]

If these concepts are viewed in context, it would appear that Handicap is the opposite of equalization of opportunities analyzed along the plane of access. Thus, if access occurs, equalization of opportunities occurs. If access is denied, Handicap ensues. In this context, equalization of opportunities is a positive value, Handicap is a negative value and access is the unit of analysis. Thus, an understanding of the key issues in access is a prerequisite for the design of programmes to enhance equalization of opportunities or, in turn, to prevent Handicap.

Although addressed several times in the Programme, access is mainly discussed in terms of those societal elements that should be made accessible to all, such as community services.[4] The Standard Rules identifies the physical environment and the information and communication environments as the target areas for accessibility in Rule 5. In this sense, one could have called the target areas for equal participation in Rule 5 the physical, and information and communication environments. In this sense, Rule 5 seeks to ensure accessibility to these environments; Rule 6 seeks to ensure accessibility to education, Rule 7 seeks to ensure accessibility to employment and so on through all target areas for equal participation in the Rules (5 through 12).[5]

This point is raised to demonstrate that the concept of accessibility is a critical element throughout both the World Programme and the Standard Rules. Moreover, both documents clearly identify target areas for which people with disabilities, as well as all others, should be given access. There is no need for this annex to review those areas, which are discussed in the main body of this report and clearly addressed in the relevant General Assembly resolutions.

However, particular issues related to evaluating accessibility do need some further elaboration here. This relates to the question of the critical elements of access. While we can equate accessibility with availability and have some certainty that as gaps between persons with and without disabilities close that access is occurring, an understanding of the key elements of access in any given situation is critical for Programme success. This annex reviews these elements.

To derive such elements, the distinction between the environment, participation and access must be understood. If one examines employment, for example, it should be noted that equal participation in employment is a target of both the World Programme and the Standard Rules. That equal participation takes place if equalization of opportunities to participate is provided through measures to enhance accessibility to employment. Thus, the 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 elements of the employment situation, full participation in that environment has not occurred.

Environments can differ very much. Not only is an employment environment different from an educational environment but employment situations can differ from each other to a great extent. As this is the case, the question arises as to whether there are critical elements of any circumstances which must be made available to an individual for him or her to have true access to any situation. If an understanding of these elements is to be useful in an international context, the elements should have certain attributes. They must take into account social phenomena, because of their importance in implementing the World Programme and the Standard Rules. They must provide a comprehensive profile of circumstances individuals face so that a complete understanding of all the prerequisites of access is obtained. They must take into account differences in people by culture and age so that they have the widest applicability across countries in establishing a universal design to policy. Finally, they should have the capacity to be analyzed from the environmental point of view so that the focus is not always on changing the individual, but rather on changing the environment.

Although the World Health Organization's Handicap taxonomy from the International Classification of Impairments, Disabilities and Handicaps, as shown in figure 1, does not purport to be a classification of accessibility, the dimensions offered 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 conceptualized 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 at least 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.[6]

Second, the Handicap taxonomy 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.[7] Thus, 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.[8] By making clear that analysis of this level is inappropriate unless a variety of dimensions are systematically evaluated, the taxonomy potentially allows for the identification of all 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, by a middle-aged man in Bahrain, a baby girl in Ethiopia, a retired man in Singapore or a middle aged woman in the United States. This provides flexibility allowing for a realistic view of access for adults, as well as for children.

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 would allow for outcomes to be identified where barriers may need to be removed in order to assure accessibility. The circumstances identified in the taxonomy would be attributes that would correspond well to those places where discrimination against people with disabilities often occurs. The focus then would not be on the ability of individuals, including children to fulfill age-appropriate roles, but rather on increasing the capacity of families and society to enhance these roles.

There are, however, several problems with the organization and focus of the actual Handicap scales which hinder their use. For example, 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, as demonstrated by the ability definitions shown in figure 1. By focusing on individual abilities, identification of those accommodations that will advance equalization of opportunities if access is 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. In short, since people either have or do not have access, the dimensions of access cannot consist solely of things people do but rather of things people have.

There are particular characteristics of the actual scales that also hinder their use. First, the scales focus on the reduction of Handicap, rather than on achieving positive targets. While a successful programme should reduce barriers to access, a primary focus also is to achieve 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, however. 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 clearly no provision for advanced levels of access, except with 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 and develop. These relate to access to those elements of the environment to prepare people for changes in their life situations and to enhance their readiness for coping with age- or culturally-related expectations that can shift in the course of one's life.

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

A view of the circumstances in which a baby must cope with its environment points to the universality of these dimensions. First, on a basic level, babies must interpret and inform their environment. They receive information and, in their own way, interpret it. Even a smile or a hug provides information for a baby to interpret. Moreover, to the extent possible, they send information out to their environment. This exchange over time provides infants with a sense of who they are. While one can focus on the abilities of an infant to engage in this exchange of information, one can also 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. To be sure, a baby's capacity to make choices in an adult context is limited. However, from the very earliest age, babies have some independence in engaging their environment and make some very basic decisions about coping. For instance, if a baby cries and there is some response, the baby can learn some sense of control. Hence, 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, of course).

If the first and second dimensions deal with the "who" and "how" of access, 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 traveling increases. Likewise, they use their 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 can 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 is "who" a baby is important but those with "whom" they interact are also important. Also, "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. Again, the ability of the environment to enhance the baby's readiness for such change can be discerned and altered.

The six Handicap scales 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 and the consideration of elements related to access to transition or preparation for change can be employed to provide a holistic evaluation. An examination of each dimension highlights the potential use, with modifications, of the Handicap elements. These modifications have also been summarized in the access to life situation column in figure 1.

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.[9] In Rule 5, the Standard Rules also call for access to information, suggesting several strategies for accomodations. Individuals with limited access to sensory input or those may have difficulty obtaining information that is critical to learning particular concepts or acquiring necessary basic 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 rigid or arbitrary time frames. As a result, persons with disabilities may need specific accommodations in order 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, however, 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. It 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.

There are three key elements of circumstances that can be discerned related to orientation. First, the reception of information can be evaluated for access to the means of communication the individual chooses in order to receive information, such as Braille, readers, 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 an 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 effectively in 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, and home and community activities, which 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, and home/community productivity. An important point here is that an individual may be able to conduct a major activity at the appropriate 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 results 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 socioeconomic activity and independence. However, the original scale construct was placed in terms of wealth. Thus, it can refer to access to customary socioeconomic 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 passed has shown that how the environment interacts with individual changes over the course of a lifetime. Individuals may have good access at one age but not 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 (network, transportation, family support, etc.) or access to resources to pursue 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 rather 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 habilitation or rehabilitation or other life preparation programme, including its availability, appropriateness, cost and suitability for the person's preparation requirements. In early life, transitions related to movement from pre-school role to student include access to activities designed to make children ready for school. Later, transitions related 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 are also related 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 (for instance, Usher's Syndrome), disease (for instance, HIV/AIDS) or rehabilitation. Some health related transitions may be age-related as well, such as preparation 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 the 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 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. Such an evaluation can be conducted at the individual, family or community level along the lines, as in figure A.1.

*Transition is not an original Handicap category.

Sources: World Health Organization, International Classification of Impairments, Disabilities, and Handicaps: A Manual of Classification Relating to the Consequences of Disease (Geneva, World Health Organization, 1980), p. 181, and United Nations General Assembly resolutions 48/96, annex of 20 December 1993, The Standard Rules on the Equalization of Opportunities for Persons with Disabilities.

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 the main body of this report. It may be possible, however, that qualitative information at the community level may best inform the degree of access to the community. The challenge for monitoring is to systematically compile such information as an agent for change. If this challenge is at least addressed, with all appropriate caveats, some 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 people have choices?
3. can people travel in the situation?
4. do people spend the same amount of time in a situation?
5. are people integrated socially?
6. do people have the resources to participate?
7. are people prepared for change in the situation?

If most of these questions are addressed positively by disabled persons, their families and all people, then progress towards accessibility has probably occurred. Progress should result in a reduction of Handicap and fostering of equalization of opportunities.

Notes:

[1] United Nations General Assembly, World Programme of Action Concerning Disabled Persons (A/37/51/Add.1/ and Add.1/Cor.1, annex), para 6 [http://www.un.org/esa/socdev/diswpa00.htm].

[2] Ibid., para 12.

[3] United Nations General Assembly resolution 48/96, annex of 20 December 1993, chap II, Rule 5.

[4] World Programme of Action …, see discussion in chap 1, "Objectives, background and concepts" and chap 3, "Proposals for implementation …".

[5] A/RES/48/96, annex; Rule 5 - Accessibility; Rule 6 - Education; Rule 7 -Employment; Rule 8 - Income maintenance and social security; Rule 9 - Family life and personal integrity; Rule 10 - Culture; Rule 11- Recreation and sports; and Rule 12 - Religion.

[6] World Health Organization, International Classification of Impairments, Disabilities, and Handicaps: A Manual of Classification Relating to the Consequences of Disease (Geneva, World Health Organization , 1980), pp 26 and 29.

[7] Ibid., p 184.

[8] Ibid., p 183.

[9] World Programme of Action …, paras 134-135.

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