TOWARDS A HUMAN RIGHTS DISABILITY TAXONOMY
The first decade of the new millennium may mark a milestone in the advancement of human rights. On 19 December 2001, the United Nations (UN) General Assembly adopted Assembly Resolution 56/158, Comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities (UN General Assembly 2002). The Resolution did not actually establish such a convention. Rather, the General Assembly established an Ad Hoc Committee "...to consider proposals for a comprehensive and integral convention to promote and protect the rights and dignity of persons with disabilities, based on the holistic approach in the work done in the fields of social development, human rights and non-discrimination..." (UN General Assembly 2002, paragraph 1). Such a convention would provide to those countries ratifying it the first enforceable mechanism under international law to protect human rights related to disability.
While no one knows the eventual outcome, the process of designing such a convention will provide a major forum for disability issues. Since 1983, the World Programme of Action concerning Disabled Persons, by incorporating both environmental and human rights perspectives with other disability approaches, has served as a focal point for international disability policy issues (UN General Assembly 1983). In 1993, the General Assembly passed the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (UN General Assembly 1993) as an implantation mechanism for the World Programme of Action. Likewise, the Rules provided a mechanism for addressing disability policy issues. In the future, convention-related activities may develop a similar energy level and, perhaps, an even greater importance.
This effort to establish such a convention may be attributed, in part, to several broad trends. First, at a micro or personal level, disability is becoming "...a common-place experience in people lives" (Albrecht and Verbrugge 2000, p. 293). Second, at a macro level, "with or without anyone's attention, global disability will be on the rise for many decades to come, fuelled by population aging, environmental degradation and societal violence" (Albrecht and Verbrugge 2000, p. 305). Third, disability advocates, such as Disabled People's International (DPI) have emerged as key players influencing disability policy and programmes (Oliver 1996). Fourth, what is broadly called "the social model of disability," supported by both disability advocates and scholarship, has emerged as the major paradigm influencing a variety of disability and human rights initiatives (Oliver 1996). These trends are not mutually exclusive or exhaustive.
Clearly, current binding international instruments will instruct the process of designing a new convention. The question becomes, however, how can a convention systematically incorporate the social model of disability into a legally binding international human rights instrument in order to support equality for persons with disabilities. One approach could be to simply include as many social agendas as possible into an instrument, trusting that all essential elements will be covered. In contrast, this paper argues that a systematic approach to the convention's design is required and that a taxonomy relating human rights to disability is a necessary component of that approach. Such a taxonomy would provide an organising framework to systematically incorporate essential elements into the convention. While not proposing a fixed classification scheme, the paper does suggest three broad domains for a human-rights-based disability taxonomy and recommends strategies for inclusion of these elements.
The paper considers three broad areas. First, the question of essential principles deriving from social pathology models of disability (Rioux, 1997) that should be considered for a convention is addressed. Some of these principles often seem to be at odds with each other. This article argues that, while such dichotomies are false, consideration of each of the opposing views elaborates the range of perspectives that a convention should address. Next, the paper considers the purposes for a taxonomy to synthesise disability and human rights issues. Finally, three potential domains to be considered in a human rights/disability taxonomy are offered: 1) the environment, 2) accessibility domains between individuals and their environment and 3) legal expressions of human rights. Consideration of these domains could form the basis for a systematic design for human rights instrumentation, such as a UN convention.
"False" Dichotomies within the Social Model of Disability
Prior to passage of the resolution by the General Assembly, advocates
for the disability rights movement demanded "...not more programming or
even specific entitlements but a reorientation of the very foundation of
disability law and policy. What was needed, they argued, was an explicit
recognition of the human rights of persons with disabilities..." (Bickenbach
2001, pp. 565-566). Human rights issues are often discussed, not in terms
of individual versus social pathology, but rather within a social
pathology or structural framework (Rioux, 1997). While these issues are
not completely mutually exclusive or exhaustive, they may be roughly
characterised by dichotomies between several alternatives, as follows:
For purposes of a human rights instrument, these dichotomies are false and may mask the fact that aspects of all sides need to be considered. Indeed, as noted earlier, in passing its resolution, the UN General Assembly required that the work be based on a holistic approach. Thus, incorporation of all relevant aspects of all fields and points of view is required. A review of the dichotomies therefore reveals that each "side" of the dichotomy has particular aspects or characteristics that must be considered for a human rights instrument.
Within the social pathology approaches, Rioux (1996) delineates environmental and human rights approaches to disability. Environmental approaches tend to focus on the consequences of environmental factors and service arrangements, seeking to eliminate systemic barriers. By contrast, human rights approaches consider the results of social organisation and relationships to address the provision of political and social entitlements. While the human rights viewpoint would be definitely applicable to a human rights instrument, a disability rights instrument may need to address the extent: to which individuals have rights to control their services and may need to provide mechanisms for the elimination of the social, economic and physical barriers in their lives. Thus, a human rights instrument needs to consider environmental pathologies.
Much of the literature on social pathologies has its roots in a reaction to medical approaches to disability. While Rioux (1966) distinguishes between bio-medical and functional models noting that they differ regarding the points of origin, she points out that both describe a pathology that focuses on the individual. The individual pathology model is challenged by social pathology models. Albrecht and Verbrugge (2000, p. 300) argue, "The social causation model is a reaction to the medical one. In its purest form, activists and scholars claim that disability has nothing to do with a person's disease or impairment, but instead is entirely created by societal barriers and attitudes." Williams (2001, p. 124) notes that while the disability studies literature is quite diverse, "...all of this work has as its common root a rejection of the medical model as the foundation for any effective understanding of impairment or disability." Bickenbach (2001, p. 567) states directly, "The human rights approach, advocates realised immediately, required a very different conception of the notion of disability than was standardly used in the medical community." Representative of this rejection of the medical model is the formulation for the disability definition offered by Disabled Persons International (DPI), defining disability as the "...loss or limitation of opportunities to take part in the community on an equal level due to physical or social barriers" (Oliver, 1996, p. 56). One does not have to reject the medical model to agree that a human rights/disability convention should focus on social causation, for, by definition, human rights instruments seek not to change the individual, but, rather, the "opportunity" and "barrier" side of the equation. They address the attributes of society that either foster or deny human rights and, hence, must address the social pathology of disability. In some sense. however, the social causation replaces one negative view with another in terms of defining disability. If the medical model sees disease causing the "tragedy of disability" in an individual, the DPI definition views disability in terms of "loss or limitation" and "barriers" rooted in society. Two dichotomies related to the social characterisation of disability arise from this - 1) "universalist" and minority group and 2) positive and negative viewpoints toward disability.
The side-by-side publication of papers by Zola (1993) and Hahn (1993) in the Journal of Disability Policy Studies perhaps marked the beginnings of the universal design/minority group debate. In referencing disability, Zola (1993, p. 18) Zola states that disability is not "fixed and dichotomous" but "fluid and continuous." As a result, he proposes that disability should be viewed holistically and perspectives towards it we must "...avoid the negative valence so classic in medical and public health research" (Zola, 1993, p. 27). In this viewpoint, virtually everyone could be disabled at some particular situation in their lives regardless of whether they would traditionally be viewed as disabled. This appears to contradict Hahn's (1993, p. 48) viewpoint that... "The essential elements of the sociopolitical viewpoint on disability are represented by the concepts of visibility and labelling..." Almost by definition, labelling results in a fixed and dichotomous viewpoint, where some persons are either social labelled as disabled or they are not. In a very influential article, Bickenbach et. al. (1999, pp. 1179-1883) focus on a dichotomy between minority group discrimination mad universal human condition. They argue that the minority group model breaks down because of a forced analogy between racial minorities and disabled people and that the condition of inequality that people with disabilities face is not necessarily explained by discrimination (Bickenbach et al, 1999, p. 1181). Williams (2001, p. 135) also notes that disability should not be theorised wholly in terms of social oppression, because many disabilities emerge from chronic illness slowly over time, able-bodied is only a temporary condition making disability open to anyone and disability or impairment does have some impact on the body condition. As such, Williams (2001, p. 141) endorses much of Zola's viewpoint arguing, "However imperative it may be politically to define people with disabilities as a minority group, it is a curious minority that will include us all - if not today, then tomorrow, or the day after that."
A related distinction relates to the use of positive or negative terms to describe the disability experience. Chapireau and Colvez (1998, p. 42) state that positive descriptions for disability are promoted by those who want to describe remaining abilities so that functional substitution can take place (i.e., sign language, Braille, etc.) or those who want to avoid stigma. In relation to positive descriptors, Zola (1993, pp. 28-29) goes beyond the substitution argument to describe many positive aspects of disability itself. He cites several personal examples of the use of assistive devices providing back support not available to his colleges without disabilities and how driving was made easier for him than others. Thus, Zola's criticism of the medical model extends to noting that disability can be a positive experience. In relation to avoiding stigma, Bickenbach (2001, p. 577) argues that the negative valuation of disability can be demeaning in the human rights process. As in the case of the Americans with Disabilities Act, "...the adjudication process that one embrace an adverse label to apply for protection. What could be more demeaning than having to earn one's human rights by showing that one is eligible to 'special treatment' by virtue of being a socially discredited group?" In contrast, the need for negative descriptions is highlighted by Chapireau and Colvez (1998, p,. 64), who propose that "...avoiding any negative items prevents and identification and description of the problems to be solved. An exclusively positive approach can lead to dramatic disengagement in government responsibilities or insurance policy. Stigma exists and must be fought, but to forbid use of negative items is not a good strategy."
Ironically, in the original articles, Zola and Hahn several times agree more than then disagree. Both describe the disability experience in both positive and negative terms. For instance, in relation to negative aspects, Zola (1993, p. 30) notes that Hahn's minority group perspective "...has served us well in providing a framework for how people with disabilities are responded to and perceived." From a positive standpoint, Hahn (1993, p. 49) argues that "...the sociopolitical viewpoint has permitted disabled citizens to engage in the process of translating formerly discredited bodily attributes into a dynamic sense of political identity." Hahn does not appear to contradict Zola's hypothesis that function or disability may be fluid and continuous, but rather believes that society's response to persons is to construct a fixed and dichotomous paradigm (i.e., one is either disabled or not). This is important, because of the need to focus not only on the result of society's impact on persons with disability but on how society and/or environments actually facilitate barriers to human rights for all people.. Though referencing health care, Chapireau and Colvez (1998, p. 65) make this very distinction, noting the need to distinguish between factors: "description of social disadvantages independently of their origins, study of the handicap process (and) choice of strategies..." Thus, a human rights instrument must systematically consider elements related to discrimination and social oppression and also recognise that a new universe of disability is emerging. As viewpoints for disability shift, to paraphrase Zola's words, the instrument must be fluid and continuous enough to retain its relevance over time and must also incorporate both positive and negative aspects of the disability experience.
As with social pathology and characterisations for disability, the design of policy mechanisms sometimes is viewed as an "either/or" choice. Examples of such choices are 1) mechanisms for economic development and those for human rights and 2) mechanisms designed solely to implement disability policy and those that incorporate the disability perspective into broader policy instruments. The dichotomy between economic development and human rights instruments perhaps derives from a recognition of the distinction between economic and socio-political perspectives, as noted by Hahn (1993, pp. 45-50). He views this as arising from a tendency for industrialised societies to view physical capabilities as occupational requirements (Hahn, 1993, p. 45). In a similar vein, Albrecht and Verbrugge (2000, p. 300) state that consideration of financial constraints often work against inclusion of the disability perspective in policy in both the developed and developing world (i.e., "we cannot afford to recognise disability"). Thus, human rights instruments may be viewed as a mechanism to "force the issue." However, the World Programme of Action (UN General Assembly, 1983) recognises that equalisation of opportunity is not a static phenomenon, but one that must occur within the context of economic and social development. To this end, human rights instruments need to consider the right to participate in social and economic development and development programmes must consider the human rights of persons with disabilities as a necessary prerequisite for their success. Just as the integration of rights approaches with environmental and development approaches should be considered, so, too, must the integration of the disability perspective into general policy. Past United Nations instruments, such as the 1971 Declaration of the Rights of Mentally Retarded Persons or the 1975 Declaration of the Rights of Disabled Persons may be considered as disability policy - policies designed to specifically address the rights of persons with disabilities. More recently, the rights of persons with disabilities are being considered in the formation of general policy, such as the 1993 Declaration of the World Conference on Human Rights in Vienna. To that end, while a potential convention may be considered as simply an instrument of disability policy, the extent to which it serves as a mechanism for the incorporation of the disability perspective into mainstream human rights and development policies should be considered. The UN General Assembly (2002, paragraph 4, p. 3) foresees such an integration by requesting the consideration of international legal instruments, documents and programmes which even indirectly address the situation of persons with disabilities. Thus, while one could view a convention as merely a disability human rights instrument, its designers may wish to incorporate mechanisms for social and economic development, as well as provisions to incorporate disability policy into other policy instruments.
The final dichotomy considered here refers to the policy solution - accommodation or universal design. Whereas accommodation solutions may involve "fixing" existing environments to be accessible to persons with disabilities, universal design solutions involve the creation of products and environments to be unable to the greatest extent possible by people of all ages and abilities. While these may seem opposite, in reality a certain practicality guides the implementation of solutions. Where institutions are established and are difficult to replace, accommodation or what some economists may refer to as "add-ons" may be in order. However, when institutions are being designed or redesigned, principles of universal design might be called into play. Therefore, both kinds of reforms may need to be factored into a human rights mechanism.
Purposes of a Taxonomy Related to Human Rights and Disability
Constructing a human rights instrument that considers all of the social pathology elements is problematic. However, the UN resolution specifically instructs that the convention must be based on a holistic approach (UN General Assembly 2002, paragraph 1, p. 2). A holistic approach requires 1) identifying the universe of essential elements necessary for the convention, 2) deciding which elements to include and 3) monitoring for successful implementation of the convention. A human rights/disability taxonomy is necessary to meet these requirements, because the classification provides a common language to facilitate design, implantation and monitoring of a convention.
Without a human rights/disability taxonomy, an instrument may be constructed that is primarily a reactive document (i.e., the "negative valence" that Zola warns us to avoid). This could lead to a convention that is primarily a prohibitive instrument and not one that strives to accomplish positive goals for societies to assure human rights for persons with disabilities. Another danger derives from pressures to include everything good for persons with disabilities that people want, which might force the creation of a draft that represents an expansive "wish list." This danger would turn the convention into little more than an overwhelming long term agenda that merely duplicates other instruments, such as the Standard Rules.
The "comprehensive and integral approach" for a convention urged by the UN General Assembly (2001, p. 2) will require a review of many perspectives. By systematically classifying relevant human rights-related phenomena, a human rights/disability taxonomy would provide a comprehensive organisation of all facets that should be considered by the Ad Hoc Committee. In order to maximise the possibility that the universe of human rights and disability is captured within the taxonomy, essential elements of the dichotomies discussed in the previous section would be examined for inclusion. For example, such a taxonomy could be referenced from an environmental pathology or a positive view for disability to observe whether all relevant items are included in the pathology.
Beyond providing elements to consider, a taxonomy aids in discerning what to include in a human rights instrument. The taxonomy would help to delineate the most critical guarantees for human rights and the most important obligations for member States who ratify it. In debates which often cut across language, a taxonomy would assist in assuring participants that they are indeed referencing the same phenomena. For instance, the International Classification of Functioning, Disability and Health (ICF) has a goal "...to establish a common language...in order to improve communication between different users, such as health care workers, policy-makers and the public, including people with disabilities" (World Health Organization, 2001, p. 5). A similar goal could be accomplished by a taxonomy that, instead of having a health focus as the ICF does, would classify human rights phenomena. As the convention is considered, member States would have a clearer understanding of the specific actions to which they are committing their governments.
If a convention is ratified, implementation and monitoring would be enhanced. One basic human rights principle is that the rights are universal; hence, one would want to reduce the extent to which violations are subject to cultural interpretation. A taxonomy would aid in establishing some world harmony as to what are the basic human rights and what conditions must obtain for violation. Note, too, that monitoring efforts would be enhanced. One goal of the ICF is "...to permit comparison of data..."(World Health Organization, 2002, p. 5). Likewise, a taxonomy would aid in monitoring the implementation of the convention in order to improve efforts to establish human rights.
Essential Elements for a Human Rights/Disability Taxonomy
Given the earlier argument that a convention must systematically incorporate environmental elements, the first key component of a taxonomy is environmental factors. The ICF includes such a classification of Environmental Factors (World Health Organization, 2001, pp. 171-207). Included in Chapter 5 of that classification are services, systems and policies that clearly relate to human rights. Relevant to the view of disability, the construction of the ICF draws upon the universalist viewpoint (World Health Organization, 2001, p. 7) and allows for the use of both positive and negative terms (World Health Organization, 2001, p. 10). Policy mechanisms are systematically incorporated and the environmental codes allow for broad selection of targets for reform. Human rights use is clearly anticipated; for example, the specific code d940, human rights (World Health Organization, 2001, p. 170) clearly anticipates being able to classify the enjoyment of human rights by individuals. Codes which may be quite relevant from a more global perspective are activity codes which potentially may be considered as rights, such as the right to learn to read (d140) (World Health Organization, 2001, p. 125) and environmental codes that could refer to specific violations (i.e., e235, human-caused events, World Health Organization, 2001, p. 184).
However, the environmental elements need to be reorganised in a way that clearly identify the specific targets of provisions in the convention. Such targets relate to components of the environment - its structure, its function (what it does) and its characteristics (what it has). For example, if provisions are to influence the interaction of professionals with deaf people, the particular type of professional needs to be identified, as well as the functions and characteristics of that professional. For example, health professionals, code e355 (World Health Organization, 2001, p. 188) would be identified along with relevant functions, such as communicating in sign language, codes d320 and d340 (World Health Organization, 2001, pp. 134-135) and characteristics of the health professional, such as a poor attitude towards deaf people, code e450.8 (World Health Organization, 2001, p. 191). Note that in terms of function, a code normally used for an individual is used to characterise an environmental factor, a health professional serving an individual with a disability. In this way, decisions can be made as to whether human rights provisions should target a specific environmental agent or its function or its attributes.
In terms of organisation, the environmental codes in Chapters 1, 3 and 5 provide descriptions of products/technologies, people/animals and services/systems/policies and may be considered environmental structures. For the most part, these are environments, but not environmental characteristics descriptors of what these environmental structures actually do to people, environmental functions. A clear example of environmental characteristics is Chapter 4, attitudes (World Health Organization, pp. 190-191). Many of these attitude classifications directly correspond with persons who have relationships in Chapter 3, as demonstrated by Exhibit 1. Environmental functions are not in the classification and may have to be derived from the personal activity classifications (World Health Organization, 2001, pp. 123-170) and other sources. Hence, more specific categories than are currently contained in the ICF may be required.
Up to now, the discussion has addressed issues related to the environment as the unit of analysis, as opposed to having the person as such a unit, as in the ICF. However, the second essential element for a human rights/disability taxonomy is the concept of access. Because access can be examined from both an individual and environmental standpoint, more than one unit of analysis must be considered (Brown, 2001, pp. 164-165). 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 (UN General Assembly, 1983, paragraph 7): "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." The concept of accessibility is discussed in conjunction with the definition of equalisation of opportunities as the process through which the general systems of society are made accessible to all by removing barriers and promoting human rights. Addressing the issue of accessibility represents an approach to reversing exclusion, promoting inclusion and also to enhancing equalisation of opportunity in a positive and systematic way. By its nature, access is not an act or a state but a liberty to enter, to approach, to communicate with, to pass to and from or to make use of a situation (Brown, 2001, p. 164).
In their work on health care, Pechansky and Thomas (1981, p. 128) define access as a "a concept representing the degree of 'fit' between the clients and the system." They have proposed a classification of the dimensions of access to evaluate fit with the health care system, as shown in Exhibit 2. Simeonsson et al. (1999, p. 240) argue that "...the notion of 'fit' can be seen as compatible with the person-environment interaction..." In adapting the Pechansky and Thomas taxonomy, Simeonsson et al. clearly view interaction as the unit of analysis.
In a similar vein, Whiteneck et al. (1997, p. 99) have posited that there are "...five general characteristics of environments that influence how poorly or how well an individual becomes an active, productive member of society..." In the view of these authors, these characteristics, also shown in Exhibit 2, influence handicap. Their similarity to the Pechansky classification is quite apparent, however. Three terms (accessibility, accommodation and availability) are used in both models and appear to correspond with each other.
The author of this paper has also proposed a classification of domains of access through identification of universal dimensions of interaction between the environment and human beings (Brown, 2001, p. 167). Four criteria for such universal dimensions are 1) they must incorporate the importance of social context, 2) they must consider the situation of the whole person, 3) they must take age and cultural factors into account and 4) they must be able to be analysed from the perspective of both the person and the environment. This proposal is based on the original Handicap dimensions as proposed by the World Health Organization (1980, pp. 181-207) in the original International Classification of Impairments, Disabilities and Handicaps (ICIDH). The Pechansky and Thomas and Whiteneck et al. dimensions are similar to these dimensions, as shown in Exhibit 2. The main differences are: a) the Access/Handicap model takes into account two dimensions, when/occupation of time and change/transition not included in the other models, b) the Whiteneck et al. dimensions are viewed as environmental characteristics influencing handicap and the other models' dimensions are viewed as the interactions, with these interactions actually being the handicaps and c) the Whiteneck et. al model incorporates the equity dimension; this author has argued that equity is a dimension that cuts across all dimensions (Brown, 2001, p. 166)).
Whatever model would be employed, the key point is that systematic elaboration of the dimensions of access provides dimensions of interactions between humans and their environments that must be assessed to enhance equalisation of opportunity. In this sense, the situation of persons with disabilities can be monitored along these dimensions to evaluate whether they have been assured their human rights either by promoting accessibility and equalisation of opportunity or preventing exclusion and handicap. This appraisal can then reveal what points need to be included in a human rights/disability convention.
This raises the question of how is the equity dimension of Whiteneck et. al. (1999) is captured. One mechanism is a proposed typology of different forms of social exclusion of persons with disabilities by Ravaud and Stiker (2002). This typology, shown in Exhibit 3, could be employed either as a whole or applied to each dimension of access. Again, different units of analysis would be required for assessment by first examining the environments which may be engaged in the function of exclusion and then examining people who are excluded by the environment. While the first two forms of exclusion, elimination and abandonment, are fairly unidimensional, the others can occur across several planes. A person may be included in some planes, conditionally included in others and marginalised in still others. Hence, the process of reversing these exclusions may occur along several dimensions, such as those in the three potential models of access discussed earlier.
While these elements are inclusive of both the environment and the person/environment interaction, one specific environmental element deserves special mention. Because the concern is a human rights/disability convention, mechanisms for the legal expression of human rights need to be carefully considered. Such a typology, proposed by Bickenbach (2001, p. 568) considers four essential elements - 1) enforceable antidiscrimination legislation, 2) constitutional guarantees of equity, 3) specific entitlement programs and 4) voluntary human rights manifestos. Technically, one could argue that these elements are descriptors that could be applied to the services, systems and policies environmental factors in ICF (World Health Organization, 2001, Chapter 5, pp. 192-207). While this may be true and perhaps this typology is best considered as a qualifier, legal mechanisms need to be carefully considered for a human rights/disability convention. In this way, the most appropriate mechanisms can be chosen to address particular environmental or access dimensions.
Summary and Conclusions
A proposal for a taxonomy related to human rights and disability may strike some human rights advocates as counterproductive. Indeed, Williams (2001, p. 134) notes, "...the rejection of the ICIDH is an important historical moment, marking the divide between those who see disability as an emergent property of the interaction between person and society and those who see it as an expression of social oppression." As such, the rejection of classifying individual characteristics could extend to rejection of any attempt to classify phenomena.
However, by its very nature, a human rights instrument assumes: 1) a set of human rights can be delineated, 2) these rights should be guaranteed across borders, 3) when violations of these rights occur, such violations can and should be identified regardless of where they occur and 4) upon identification, the situation should be corrected. From these assumptions, two basic questions are: a) how do we know what the rights are and 2) how do we know if they have been violated? As a legally binding international instrument, a convention, almost by definition will classify human rights by their inclusion in the instrument. The question, therefore, is will such classification be systematic or ad hoc? As Bickenbach (2001, p. 565) states, "...it is important to be clear what the human rights approach is, what it entails and how it manifests itself in legal and policy concerns."
Such lack of clarity has occurred in efforts to provide bills of rights in the health care field. Referencing the health care for persons with mental retardation or developmental disabilities, Schultz (1996, p. 279) argues, "In reviewing a plethora of bill of rights documents for special support individuals, one can begin to see that these rights are unilaterally presented in a haphazard listing lacking any discernibly systematic pattern, plan or purpose other than exhibiting a general expose. Although many of these documents are framed in a way to make attractive wall ornaments, a more beneficial framing strategy in actively applying these rights to health care delivery would be to CLASSIFY rights coherently and systematically into a TAXONOMY based on hierarchical criteria which say something about being human." Such an argument should be extended to include issues beyond health care, in this case, disability and human rights.
Some who support such a taxonomy might argue that inclusion of accessibility in the taxonomy returns the focus to classification of individuals. Hence, only the environmental factors should be included. However, the denial of human rights has very real impacts on people and a convention is supposed to promote access to human rights. Human rights conventions related to women and children, while not classifying individuals, certainly consider their impact; why would the situation of persons with disabilities require less? Clearly, these conditions need to be evaluated both at the level of the persons experiencing the conditions and at the level of the environments causing them.
Those who accept such a triangulation might believe that only classifications used for all people are appropriate. Examples included in the ICF would be variables such as school attendance and employment. While these are useful for determining disparity, the documentation ends there. Williams (2001, p. 141) argues that persons with disabilities comprise "...large numbers of people who share common conditions of exclusion, marginalisation and disadvantage." However, as Chapireau and Colvez (1998, p. 63), state, "Surprisingly enough, the question of disadvantage has hardly been addressed by those who criticise handicap." A taxonomy describing access dimensions and marginalisation would, however, promote consideration of the elements noted earlier by Chapireau and Colvez - social disadvantage, the causes thereof and points of leverage. In contrast, little is revealed about the processes causing exclusion, marginalisation and disadvantage, unless accessibility is systematically appraised at the environmental and person levels.
The process of establishing a United Nations convention coincides with another development in the disability arena that could potentially impact on human rights. Passage of the ICF by the World Health Assembly (World Health Organization 2001, p. 3) reflects a desire for "...a unified and standard language and framework for the description of health and health-related states." The World Health Organization (2001, p. 6) asserts that the "...ICF provides an appropriate instrument for the implementation of stated international human rights mandate..." While the inclusion of environmental factors could provide a major tool for design of human rights instruments, perhaps a more important contribution is that, unlike the ICIDH, the ICF does not define disability per se (World Health Organization 2001 p. 8). By so doing, the ICF encourages the consideration of the variety of the disability experiences and the environments that shape them.
However, the ICF cannot form the basis to organise information for an international convention, because many attributes related to human rights are not elaborated in the ICF. These relate to the factors mentioned by Williams - exclusion, marginalisation and disadvantage. These important variables can be captured by the taxonomies related to access previously discussed and the typology of social exclusion of persons with disabilities offered by Ravaud and Stiker (2002). The typologies presented here probably do not represent all factors that could be included in a human rights/disability taxonomy. This is an emerging area and discussions over these terms would benefit from scientific study. That said, the interactive nature of promotion and denial of human rights related to disability can be properly assessed through a synthesis of a variety of paradigms (or dichotomies) and by shifting the unit of analysis to evaluate the systematic provision of access as a human right.
Indeed, such a taxonomy may prove useful in the design, implementation and monitoring of policies in other areas beyond disability and human rights.
ALBRECHT, GARY L & VERBRUGGE, LOIS M. (2000). The global emergence of disability, Chapter 2.7 in ALBRECHT, GARY L., FITZPATRICK, RAY & SCRIMSHAW, SUSAN C. (eds), Handbook of social studies in health and medicine, London, Sage Publications, Inc., pp. 293-307.
BICKENBACH, JEROME E. (2001). Disability Human Rights, Law, and Policy, Chapter 24 in ALBRECHT, GARY L., SEELMAN, KATHERINE D. & BURY MICHAEL (eds.), Handbook of disability studies, Thousand Oaks, Sage Publications, Inc., pp. 565-584.
BICKENBACH, JEROME E., CHATTERJI, SOMNATH, BADLEY, E. M. & USTUN, T. B. (1999). Models of disablement, universalism and the international classification of impairments, disabilities and handicaps, Social Science and Medicine, Volume 48, pp. 1173-1187.
BROWN, SCOTT CAMPBELL (2001). Methodological paradigms that shape disability research, Chapter 5 in ALBRECHT, GARY L., SEELMAN, KATHERINE D. & BURY MICHAEL (eds.), Handbook of disability studies, Thousand Oaks, Sage Publications, Inc., pp. 145-170.
CHAPIREAU, F. & COLVEZ, A. (1998). Social disadvantage in the International Classification of Impairments, Disabilities and Handicaps, Social Science and Medicine, Volume 47, pp. 59-66.
HAHN, HARLAN (1993). The political implications of disability definitions and data, Disability Policy Studies, Volume 4, Number 3, pp. 41-52.
OLIVER, MICHAEL (1996). Defining impairment and disability: Issues at stake, in BARNES, C. & MERCER, G. (eds.), Exploring the divide: Illness and disability, Leeds, The Disability Press, pp. 39-53.
PECHANSKY, R. & THOMAS, C. (1981). The concept of access: Definition and relation to customer satisfaction, Medical Care, Volume 19, Number 2, p p. 127-140.
RAVAUD, JEAN-FRANCOIS & STIKER, HENRI-JAQUES (2002). Les modeles de l'inclusion et de l'exclusion a l'epreuve du handicap, Handicap-Revue de Sciences Humaines et Sociales, Volume 87, pp. 1-8.
RIOUX, MARCIA H. (1997). Disability: the place of judgement in a world of fact, Journal of Intellectual Disability Research, Volume 41, Number 2, pp. 102-111.
SCHULTZ, GARY STEVEN (1996). Taxonomy of rights: A proposed classification system of rights for individuals with mental retardation or developmental disabilities, Journal of Developmental and Physical Disabilities, Volume 8, Number 3, pp. 275-285.
SIMEONSSON, RUNE J., BAILEY JR., DONALD B., SCANDLIN, DONNA, HUNTINGTON, GAILS S. & ROTH, MARCIA (1999). Disability, health, secondary conditions and quality of life: Emerging issues in public health, Chapter 11 in SIMEONSSON, RUNE J. & McDEVITT, LAUREN N. (Eds.), Issues in disability and health: the role of secondary conditions and quality of life, Chapel Hill, North Carolina Office on Disability and Health, pp. 239-255.
UNITED NATIONS GENERAL ASSEMBLY (1983). World Programme of Action Concerning Disabled Persons, New York, United Nations A/37/51.
UNITED NATIONS GENERAL ASSEMBLY (1993). The Standard Rules on the Equalization of Opportunities for Persons with Disabilities, New York, United Nations A/48/96.
UNITED NATIONS GENERAL ASSEMBLY (2002). Comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities, New York, United Nations A/56/168.
WHITENECK, GALE G., FOUGEYROLLAS, PATRICK & GERHART, KENNETH A. (1997). Elaborating the model of disablement, Chapter 4, in FUHRER, MARCUS J. (Ed.), Assessing medical rehabilitation practices: the promise of outcomes research, Baltimore, Paul H. Brookes Publishing Co., 1997, pp. 91-102.
WILLIAMS, GARETH (2001). Theorizing disability, Chapter 4 in ALBRECHT, GARY L., SEELMAN, KATHERINE D. & BURY MICHAEL (eds.), Handbook of disability studies, Thousand Oaks, Sage Publications, Inc., pp. 123-144.
WORLD HEALTH ORGANIZATION (1980). International Classification of Impairments, Disabilities, and Handicaps: A Manual of Classification Relating to the Consequences of Disease, Geneva, World Health Organization ISBN 92 4 154126 1.
WORLD HEALTH ORGANIZATION (2001). ICF: International Classification of Functioning, Disability and Health, Geneva, World Health Organization ISBN 92 4 154544 5.
ZOLA, IRVING KENNETH (1993). Disability statistics, what we count and what it tells us: A personal and political analysis, Disability Policy Studies, Volume 4, Number 3, pp. 9-39.
Exhibit 1. Corresponding Environmental Factors for Personal Relationships and Attitudes in the ICF
Exhibit 2. Brief Summary of Three Potential Models to Classify Dimensions of Access/Handicap
Model and Classification Dimension Construct Classification in Model A
A. Dimension of Access (WHO 1980 Handicap, adapted by Brown 2001)
B. Dimension of Access (Pechansky and Thomas 1981, adapted by
Simeonsson et al. 1999)
C. Environmental Characteristics Influencing Handicap (Whiteneck et al.
Exhibit 3. Brief Summary of the Typology of Exclusion and Inclusion Proposed by Ravaud and Stiker
1. Elimination - directly through death or indirectly by radical
abandonment or deprivation of care.
Sources: RAVAUD, JEAN-FRANCOIS & STIKER, HENRI-JAQUES (2002).
Les modeles de l'inclusion et de l'exclusion a l'epreuve du handicap,
Handicap-Revue de Sciences Humaines et Sociales, Volume 87, pp. 1-8.