"The disability definition serves a gatekeeping function in disability law . . . In regimes driven by the goals of civil rights and integration, the definition identifies the class of people entitled to reasonable accommodations and protections against discrimination."1
The need for a new act on persons with disabilities was felt in the light of the shortcomings of the existing act, 2 subsequent development of progressive jurisprudence, and a paradigm shift in the understanding of the concept of disability. Among the changes that the new act will bring in, there will be substantial changes in the disability of disability. This paper will seek to study competing constructions of disability in terms of the medical and social models of disability. It will also study the advantages of the social model over the medical and will advocate for a shift from changing the main definition from an exhaustive enumerative definition of disability to an inclusive non enumerative definition of person with disability. The paper will extensively analyze the concept of barrier in the construction of disability and why a social model definition is the need of the hour. At the same time it also advocates for a specific definition of a person with disability wherever an entitlement is being provided.
In this legislation, the key definition will be of ‘Person with Disability’ and not of “Disability”. This is in consonance with the approach of the UNCRPD which does not define disability, as it explicitly states that disability is an evolving concept3 resulting from the interaction of impairments with social barriers. Any attempt to define ‘disability’ will necessarily require an enumeration of either functional criteria or of kinds of disabilities and in doing so, the definition of disability will inevitably become a limited one.4 This limited approach is exemplified in the Persons with Disabilities Act of 1995.5
The paradigm shift proposed in the new legislation will be in making the principle definition in the act that of ‘Person with Disability’ and not that of ‘Disability.’ In its essence, this is a shift from approaching disability in predominantly medical terms as a “chronic functional incapacity whose consequence is functional limitations assumed to result from physical or mental impairment”6 to a social approach wherein disability is viewed as a “social construction shaped by environmental factors, including physical characteristics built into the environment, including cultural attitudes and social behaviour, institutionalized rules, practices, procedures of public organizations and private entities.”
Since there will be a shift from the medical model approach of the Persons with Disabilities Act, 1995 to the social model in the new act, in this part we will first examine the competing models of disability construction, and then examine how the terms ‘disability’ and ‘persons with disabilities’ exemplify each model. This will be followed by an examination of the proposed act in terms of its goals and objectives, and why the definition under the social model is more suited for it.
The medical model conceptualizes disability as a physical or mental condition in the body of the disabled person. As suggested by its name this model is based on the premise that disability stems from "observable physical, mental, sensory or psychological deviation from normality caused by disease, trauma or another health condition.”7 Since the medical model focuses on the impairment located within the person, to the exclusion of their physical or social environment, it is sometimes called the individual model of disability. It is also called the social welfare model because in this model persons with disabilities are given differential treatment outside of the mainstream institutions that serve the non- disabled persons, in that the services it provides do not require any modification of the mainstream institutions, but are provided with a welfare approach.
This model seeks to discover disability through medical research and then rectify such disabilities through the application of medical knowledge and thus reduce and eliminate “the gap between the norm and the deviation."8 In the medical model, the process of defining disability, that is, determining who goes in or stays out of the protected sphere is paramount.
Economically, there are two reasons for the success of this model globally. First, it does not pose a threat to mainstream institutions, and second, the parallel approach is easily accepted as a justification for the failure to include people with disabilities in mainstream institutions.9
One of the consequences of this view of disability is that many people view discrimination against the disabled as a result of their own bodies deficiencies and hence different from other forms of discrimination, such as discrimination on ethnic grounds, in the sense that they believe the former to have a rational basis and therefore justified and the latter to have no such rational basis and therefore unjustified. Consequently, even those persons who would not discriminate against other minorities would, against a person with disability.10
In this model a person with disability is deemed to have pathological physical and mental attributes which are linked to incapacity and dependance11, the consequence of this being the social and economic isolation of a person with disability. This model does recognize discrimination on the basis of disability but the way it seeks to address this discrimination is by asking persons with disabilities to overcome their disability or adapt their limitations to fit into non- disabled society, at the same time, this model demands next to nothing from employers, public institutions and other ‘social gatekeepers’, with respect to accommodation of the needs of this group since the social, political, and architectural environment is taken as unchangeable.12
The first shift from the medical model to the social model took place in the early 1960’s. In this model persons with disabilities are viewed as a socio-political or minority group subject to unfair discrimination. So this model views the Government’s role as being one a protector of their civil and political rights and a guarantor of their economic and social participation by eliminating not just personal but also institutional discrimination. This model advocates that a disabled person’s chance to live a fulfilling life is limited not so much by personal impairment as by a discriminatory environment.
In this model, disability is “the outcome of an interaction between intrinsic features of the individual’s body or mind (impairments) and the complete social and physical context or environment” in which that person lives his everyday life.13 In other words, disability results from “interaction between a person's physical or mental characteristic (impairment) and an inaccessible or inhospitable physical or social environment.(barrier)" 14
This definition considers disability to be the result of interaction of two factors-a physical or mental impairment and a barrier15, i.e., a social setting such as architecture, economics, politics, culture, social norms, aesthetic values, and assumptions about ability.16 This is in clear contrast to the medical model which attributes disability only to the impairment inherent in a person. The social model attacks overly narrow normative understandings about the range of normal human functioning. Its premise is that the consequences of impairments with respect to full participation are shaped by the attitudes of society.17
A polar understanding of how people live ‘normally’, what their needs are, what kinds of people require assistance, shapes human environment and therefore creates barriers for those who do not fit within this limited understanding.18 This is what this model tries to address- this constricted understanding of “normal physical functioning.”19
Noted disability writer Michael Oliver says:
“All disabled people experience disability as social restriction, whether those restrictions occur as a consequence of inaccessibly built environments, questionable notions of intelligence and social competence, the inability of the general population to use sign language, the lack of reading material in braille or hostile public attitudes to people with non-visible disabilities.”20
Thus it becomes clear that people with disabilities are marginalized by a constructed social environment in which assumptions of the incapacity to participate become self-fulfilling prophecies.
While the medical model tries to fit a person into a slot defined as disabled, the Social model in its core aims for the exact opposite of what the medical model does. In this model, “it is society that has to change, not individuals."21 In this model, what is seen as the primary problem to be addressed is discrimination, and not the inherent medical limitations imposed by disability.
This model asserts that since persons with disabilities occupy a stigmatized position in society, similar to that experienced by other minorities, they also have many of the characteristics and experience the same or similar stigmatization as other minority groups. They are also subject to discriminatory attitudes and behaviour and institutional and legal constraints that are similar to those experienced by these minorities and excluded groups.
The social model, by asking for the removal of barriers, is advocating the rights approach to deal with the difficulties experienced by people with disabilities. When there is recognition of the rights of people with disabilities, not only does it empower them so that they may legitimately challenge unfair treatment of them, but also forces society at large to reconsider practices that will limit people with disabilities. With rights, they will no longer be forced to put up with systems that are inherently disadvantageous to them to the advantage of non disabled people. 22
India has signed and ratified the CRPD. This places on India an obligation to bring its disability law and policy in consonance with the spirit and specific provisions of the CRPD. As the Act of 1995 stands, there are several provisions of the CRPD which are not contained in the Act.23 The Persons with Disabilities Act of 1995 is based on the medical model of disability; it adopts a welfare attitude, looking at physical impairments of people and labeling them as, 'disabilities.'
It has a set of policies and concessions in place for people with disabilities, but does not include non-negotiable rights. People with disabilities are not able to claim accessibility features as a matter of right in India. Availability of accessibility features is something that is subject to either formulation of schemes by India's government, or as per the, 'economic capacity and development,' of the State under this legislation.24 For such a legislation, the umbrella definition of ‘disability’ in its exhaustive formulation may suffice25, because at the end of the day, the only material outcome from this legislation is specific entitlements in accordance with the welfare approach, which may be benefited by the groups included in the definition of ‘disability’ under the act. The legal definition of disability under the 1995 Act views disability strictly from the medical perspective, and therefore ends up reinforcing a medical model of intervention. However, the present act does not address the social exclusion and discrimination faced by persons with disabilities adequately.
From this medical approach to disability, the shift being sought in this act is to a rights-based approach to people with disabilities, such as has been adopted by the UN Convention on the Rights of People with Disabilities, which seeks a society that is both designed and structured to assist a person with disability in every category and section to access facilities and opportunities; as well as grants certain entitlements. Accordingly, the new act can roughly be divided into two segments: first, it retains and expands the entitlements approach of the old act, wherein specific entitlements in spheres such as education, health, employment etc are provided, but more importantly it brings in a non discrimination component into the Act.
The approach adopted in the new act, in keeping with UNCRPD obligations is not only to remedy impairments but also to address social discrimination, whereby it formulates policies and mandates the state to implement this policy accordingly. Therefore this factor has to be kept in mind when deciding what the ‘gatekeeping’ definition to the new Act is going to be.
The CRPD does not define disability, but defines ‘Person with Disability’ in its article on Purpose.
“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”26
This definition in consonance with the CRPD approach to disability being an evolving concept27 and therefore inclusive and non enumerative. It is a product of social model in that it defines disability as the result of an interaction between an impairment and barrier. And, it highlights the primacy given to non discrimination policy and interventions in the Convention. Since the new legislation is primarily being drafted to accommodate this aspect of the CRPD, it would be more efficient to import this definition of ‘person with disability’ into the Act.
To explain this further, a reference to the framework proposed for the new legislation would be in order. The first relevant reference would be the proposed statement of objects and reasons28 which states that this new law is being primarily enacted to bring in a disability law in harmony with the CRPD, post India’s ratification of it, which would require a legislation which was in consonance with the social model of disability; recognized the full legal capacity; civil and political rights; and social economic and cultural rights of all persons with disabilities.
Thus, the nature of the proposed legislation is clear from the very outset itself. Further, the chapter on legal capacity reasserts this position, when it says “The question of legal capacity has relevance for all rights included in the new law but especially critical to civil-political rights. This is because whilst provision for social-economic rights has often been made without the participation of stakeholders, civil political rights have been the domain of the particular individual and hence denial of legal capacity means a certain denial of civil-political rights.”29
The act has an entire segment just dedicated to civil and political rights. The consensus paper highlights the novelty of this exercise adequately. “This part of the law is the absolutely new segment of the proposed legislation… Insofar as the new disability law is recognizing the civil-political rights of persons with disabilities in the new law, it is undertaking an unprecedented exercise.”30 This part of the legislation will not only prohibit the deprivation of rights of persons with disabilities, it will obligate the state to create affirmative action programs to ensure the effective realization of these rights. persons with disabilities; but will also obligate them to launch appropriate programs to promote the realization of these rights.
In recognition of the fact that a disability is more often the consequence of a barrier, than just the physical impairment, and that these barriers are more disabling than the impairments themselves, this new act is substantially dedicated to attacking these barriers, and eliminating them. This it seeks to do through its non discrimination component as manifested in the chapter on civil and political rights.
Now since the primary change that will be brought about through this approach, is change at the structural and institutional level, i.e., at the level where the barriers manifest themselves; there is per se no requirement to have the main definition enumerate impairments. This is so because these barriers are barriers not only to a limited group of people with disabilities, but to all people with disabilities. The moment we have an enumerative global definition, the reach of the entire act becomes limited.
This is not to say that the definition proposed has no objective criteria for what constitutes a disability. If a person has an impairment which falls within the functional criteria of long term physical, mental, intellectual or sensory impairments, which when combined with a barrier which may be of any kind, limits or prevents such person’s full and effective participation in society, then he will be included within the definition of person with disability. At the same time, the word ‘includes’ is in keeping with the understanding of disability as an evolving concept and is in acknowledgement of the fact that there may be persons with disabilities whose disability falls outside of the social model understanding of disability as an interaction between an impairment and a barrier.
Thus the definition ensures that there will be no category of disabled people who will not be able to seek protection under the non discrimination component of this Act.
At this juncture, it becomes crucial to address the issue of what constitutes a barrier. A barrier is construed differently in different situations and by different people. A barrier is an inaccessible or inhospitable physical or social environment which prevents full and effective participation of a person with disability in society.31 It could also be stated as those factors in the complete social and physical context or environment32 in which that person lives his everyday life, which restrict such person from full participation. These barriers may be in the spheres of architecture, economics, politics, culture, social norms, aesthetic values, and assumptions about ability.33 These could be cultural attitudes and social behaviour, institutionalized rules, practices, procedures of public organizations and private entities.34 It could be considered the political, economic and material forces structured to serve an able-ist society that exclude persons with disabilities in every sphere.35 The barriers could be related to accessibility36, attitude37, transportation38, support39, or infrastructure.40
Thus it becomes clear that it is impossible to articulate exhaustively what would constitute a barrier. Just as any attempt to exhaustively define ‘impairment’ or ‘disability’ would restrict the scope of the entire act itself, doing so for barriers would have the same impact.
In the researcher’s opinion, barrier should not be defined, as it too is an evolving concept. It is suggested that barrier be moved to either the preamble or the purpose section and herein it is stated that the understanding with regard to what constitutes a barrier is an evolving, and therefore cannot be quantified into a definition. Perhaps this can be accompanied by illustrations by way of examples to provide some degree of clarity.
However far reaching the act might intend to be in terms of its shift from the medical model to the social model, it may as well be for nought if there is no judicial acceptance for this approach. For a judiciary schooled in the medicalized approach to disability, shifting to this model is going to require much more than just a change in the definition of disability. This is not advocating for uneccessary caution. It has been seen in countries that have shifted to the social model of disability that the judiciary refuses to adopt the social model approach with respect to interpretation of the main definition.
It is the judiciary which on a daily basis grapples with the issue of whether a certain person would fall under the definition of person with disability, and consequently whether such person is entitled to the protection offered by the statute. Nowhere is it being said that legislation will not guide a judge's evaluative process and provide enumerated factors for consideration, however, keeping in mind that the final assessment of a person’s status happens within the judge’s mind, the judge’s conscious or subconscious reliance on the medical model even when interpreting the social model definition of person with disability will be a valid cause for concern. To quote a writer on disability “It is simplistic to conclude that there is no gray area in which dynamics other than statutory language do not play some role, including ones with tenuous connections to defining disability.”41 The argument being made here is that only when there is widespread judicial acceptance of the social model that the objectives of the new act will be fully realized.
So how should this situation be dealt with? One definite aid to interpretation will be including an interpretation clause in the statute. This clause can lay down the principles that should guide the interpretation of the statute at every stage. A reiteration of the fact that disability is an evolving concept and that all interpretation of the act should be informed by this understanding would find place in such a clause.
A specific mention should also be made informing of the shift from the medical model approach of the old act, to social model approach in this act, which means that the shift from viewing disability as just the consequence of a bodily impairment, to viewing it as the consequence of the interaction between an impairment and a barrier will have to be specifically mentioned. Essentially, the change in perspective which facilitated the drafting of the act will have to be highlighted here in order to aid in changing judicial perspective on disability.
The statement of objects and reasons and the preamble to the legislation will undoubtedly also have a role to play in aiding interpretation. The statement of objects and reasons will contain an enumeration of the international obligations, legislative history, and developments in the field in disability rights jurisprudence that compelled the drafting of this statute, again reiterating the shift from the medical model to the social model.
The preamble sets the tone and tenor of a statute. It provides on overview of the statute, and is often resorted to as an aid to interpretation. This legislation being the primary assertion and declaration of rights of persons with disability, the preamble will have to contain the spirit of the statute and a summation of the civil and political rights contained in the statute. Rules of interpretation suggest that the spirit of the statute should prevail over the specific provisions. Thus if we have a preamble similar to the preamble of the CRPD, it will be an important tool for guiding interpretation.
Thus, with the statement of objects and reasons, the preamble and the interpretation clause, reiterating the tenor of the new act, it should hopefully guide judicial interpretation in the right direction.
The primacy given to eliminating barriers in the social model does not mean that this model the idea that impairments contribute to disability. Accordingly, the act also recognizes the need to have interventions with regard to these impairments, and in doing so continues some of the good that came of the old act.
The second important component of the Act is the part that provides for entitlements and benefits for persons with disabilities. The act seeks to provide different entitlements across the spheres of health, employment, education, social security etc. These entitlements will be both general and specific in nature, i.e., some will be available to all persons with disabilities and some will only be available to some groups of disabled people.
The obvious issue here will then be one of who will be the target group for such entitlements- who will be the beneficiaries. The beneficiaries will have to be determined by reference to the definition of person with disability. The main definition of the Act, i.e. the CRPD definition that has been adopted, i.e. of ‘person with disability’ will be over inclusive and certainly a little vague.
To illustrate, the Americans with Disability Act provides for entitlements and benefits to different groups of disabilities, however, it has only one universal social model definition of disability on which reliance has to be placed on for determining whether or not a person is eligible for benefits under the Act. It has been seen that judicial interpretation sometimes grants benefits to undeserving persons, but more often than not, the judiciary interprets the definition in a very narrow sense as a result of which even deserving parties do not get entitled to these benefits.42 This will definitely be a problem in India as well, as both our judiciary and administration have an understanding of disability that is ingrained in the medical model.
The best solution to this problem would be to specifically define the beneficiary group for each entitlement. For example, schemes providing for aiding mobility would not be relevant to all persons with disabilities. Herein, the provisions should then define which category of persons with disabilities this scheme seeks to benefit, which in this case would be persons with physical impairments that hinder their mobility, and not persons with disabilities that may be considered as mental or intellectual impairments. These specific definitions will be linked to the nature of the scheme being provided, and on the basis of functional criteria such as nature of impairment (mental, physical, intellectual or any other) , gender, age, economic status etc.
Therefore, in the researcher’s opinion, the approach in the new act with respect to the definition of ‘person with disability’ should be two pronged- providing one social model definition emphasizing the spirit of the act, and serving as the definition with respect to the non- discrimination component of the Act; and at the same time also contain specific enumerative definitions of persons with disabilities specific to the entitlements being provided.
The purpose of definitions in an Act is to make the act as workable as possible, by providing clarity and defining the nature and scope of the various constituents of the Act.
Further, when it is a gatekeeping definition, such as the term ‘person with disability’ is to the new act, more than ever it determines the scope and reach of the entire Act
With respect to the social model definition being adopted under this Act, it is intentionally being kept as broad as possible because it intends to attack institutionalized discrimination of persons with disabilities. Whereas with respect to the entitlements segments, the need for specific definitions is self explanatory.
The two components of the act are complementary in nature. The non discrimination component seeks to make mainstream society more inclusive of persons with disabilities by dismantling barriers, while the entitlements chapter seeks to make it easier for persons with disabilities to live in such society. But because of the difference in the nature of intervention in each part, it becomes clear that a double- pronged approach to the definition be adopted.
"sorting and labelling [sic]" individuals claiming a disability-to prevent free riders within the social welfare system setup by the model [FN20]-the process of defining disability, essentially who is in and out of the protected sphere, thus becomes paramount. Consequently, the judicial mind has been force-molded into a narrow channel, one that is skeptical of all claiming a disability not easily understood as a "discrete medically determined status."