For the past three decades or so India has seen a marked rise in disability activism. We now have a number of seasoned disability rights activists doing a marvelous job in taking the disability rights movement forward. In a milieu of this ilk, it is only natural that enormous amount of soul searching, introspection, and critical reflection is happening within the disability sector on vital issues relating to disability movement, and disability work.
Of versus for
The huge ideological divide between organisations of persons with disabilities on one hand, and organisations for persons with disabilities on the other, is quite apparent. The advocates of the former category of organisations firmly uphold the view that the leadership, control, and management of disability related organisations must rest with persons with disabilities. They subscribe to the principle that 'only the wearer knows where the shoe pinches', or for that matter, 'nothing about us, without us'.
Clearly, this view favours complete ownership and full participation of the primary stakeholders around a range of issues, in the present case, persons with disabilities. Such persons, they contend, can think, speak, decide, and act for themselves, and that they do not need any mouthpiece albeit they most certainly welcome the support and solidarity of the larger civil society.
The opponents of this view, or, for that matter, the supporters of the latter category of organisations feel that the time is not yet ripe for persons with disabilities living in India to organise as they still continue to live in a state of utter disempowerment and disarticulation. Hence, they see a definite and distinct need of organizations, which will speak for and on behalf of persons with disabilities. This view, clearly appears to be driven more by feeling of philanthropy and charity, and perhaps having scant regard for the immense and enormous potential, and capabilities of persons with disabilities.
To my way of thinking, organisations for persons with disabilities, should, over a period of time, get converted into organisations of persons with disabilities. This is not to suggest that organisations of persons with disabilities do not require solidarity of the larger civil society. Such solidarity is indispensable.
Cross vs. Uni-disability
From another perspective, we see emergence of two categories of organisations on disability rights. The cross-disability organisations, the first of the two categories, fight for the rights of all persons with disabilities regardless of the nature, extent, or category of disability. The upholders of this category of organisation stress upon the commonality of issues that stare persons with disabilities in the face. These are generally issues around discrimination, exclusion, and access on an equal basis with others. They underscore the importance of guarding against the disability rights movement getting fragmented. They assert that persons with disabilities suffer discrimination and exclusion on the basis of long-term physical, mental, intellectual, and sensory impairments.
Contrary to this view, there are others who are of the opinion that each category of persons with disabilities have issues specific to the nature, extent, and category of disability which do not often get adequately and equally highlighted through cross-disability organisations-hence, the need for Uni-disability organisations. They also tend to argue that in cross-disability organisations, there is a distinct danger of a certain hierarchy of disabilities getting created depending, inter-alia, on the leadership of such organisations in a given time. This may result in some issues of some categories of disabilities getting highlighted more compared to some other equally important and critical issues of some other categories of disabilities.
It is indeed critical to ensure that that the disability rights movement does not get fragmented. It is also in the fitness of things to recognise that there exists huge commonality of interests and issues around long-term impairment based discrimination and exclusion. Hence, emphasis should be on evolving a common agenda through processes of consultations and consensus.
This does not mean that the Uni-disability organisations should close down. The fact of the matter is that these two categories of organisations can significantly complement and supplement each other, and can and must coexist as mutually cohesive entities. Uni-disability organisations can bring the expertise of experience of a particular category of disability into cross-disability organiszations thereby strengthening the perspective of such organisations on relevant issues.
Community vs. institution
The seventies and eighties of the last century saw the emergence of the concept of Community Based Rehabilitation (CBR) as opposed to Institution Based Rehabilitation (IBR). This approach envisages, among other things, community ownership of the responsibility and obligation of taking care of the all-round development of persons with disabilities living in a given community. It stresses the need for making available to persons with disabilities services at their doorstep. The idea is to ensure that persons with disabilities are able to live independently within their own communities.
With the efflux of time, Community Based Rehabilitation has come to acquire a very strong rights complexion, with the result that utmost emphasis is placed on organising, mobilising, and empowering persons with disabilities. This approach is also favoured because the cost of setting up disability specific institutions is very prohibitive; and, as such, institutions of this ilk cannot be set up everywhere.
Institution-based rehabilitation, however, envisages training, education, etc, of persons with disabilities in institutional settings where all the facilities expertise pertaining to a given disability are available. The detractors of the CBR approach argue that in developing countries in particular, communities have neither the requisite facilities nor the expertise to appropriately train, educate, and groom a person with disability to lead a life of honour and dignity. In any case, they maintain that expertise, assistive aids and appliances, etc. must come from institutions only. Why should persons with disabilities be made to remain confined only within their communities? Why shouldn't they be permitted to participate in the affairs of the larger civil society? The supporters of the IBR model however, are heard emphasizing the importance of bringing about institutional reforms.
We must clearly understand that both the approaches are complementary, rather than contradictory to each other; and can be used to empower and promote the well-being of persons with disabilities. The CBR approach does not intend to keep persons with disabilities confined within their communities when it envisages that conditions be created so that persons with disabilities are able to live independently within their own communities; on the contrary, it is an attempt to accommodate the concerns of poor persons with disabilities who do not have the necessary wherewithal to go to so-called special institutions. CBR also seeks to mainstream persons with disabilities in the life of the community and society.
Special vs. inclusive schools
Broadly speaking, there exist two schools of thought in respect of settings in which education may be imparted to children with disabilities. Those favouring a special school system argue that it is only in special settings that children with disabilities can get quality education, adequate attention and all the required facilities; and that too in an appropriate atmosphere with a level playing field and without feeling excluded in the crowd of non-disabled children. Such settings ensure that the children with disabilities are able to keep pace with the class unlike in the so-called integrated/inclusive settings.
Contrary to the above view, the exponents of integrated/inclusive settings attack the special school system vehemently on the ground that such a system tends to ghettoise children with disabilities. Strongly favouring the idea of working towards creating an inclusive, barrier-free, and rights-based society, they assert that a vast majority of children with disabilities can be accommodated within the regular school settings, and hence, in an inclusive environment, with some adaptations. In any event, a child with a disability is essentially and primarily a child first and a child with a disability only next. Besides, they argue that the cost of setting up special schools is highly prohibitive.
Although inclusion is primarily a goal, to my humble way of thinking, it is also a process. All the progressive international instruments including the UN Convention on The Rights of Persons with Disabilities place an all-out emphasis on participation of persons with disabilities in all spheres of life; and no such participation is possible without inclusion. Inclusion is a precondition to participation.
To my mind, inclusion must be an all-pervasive phenomenon. However, given the prevailing realities, the so-called special schools will continue to play an important role for a long time to come. In my view, these schools can and should promote inclusion. Besides, our emphasis must be on imparting quality education to children with disabilities in an appropriate environment. Let us utilise the special schools in promoting inclusion rather than making such schools a casualty in the name of inclusion. In my opinion inclusion should be understood and defined in proper perspective.
While a sizeable chunk of people favour the idea of reservations in jobs and other concessions for persons with disabilities, there is a section of people who feel otherwise. People belonging to this latter section contend that since persons with disabilities claim the rights and privileges of class I citizens, they should not shy away from assuming the responsibilities and obligations that come with such citizenship. However, those who favour such reservation and concessions put forth the view that persons with disabilities are amongst groups which have a long history of marginalisation and exclusion necessitating reservations and concessions etc within the larger framework of affirmative action. They further maintain that such reservation and facilities are being made available to many other disadvantaged and marginalised groups as well.
Especially in the context of the developing and the underdeveloped nation, I feel, it is imperative that such reservations and facilities are made available to persons with disabilities owing to a long history of marginalisation and exclusion. Such reservations and facilities will have to continue for a long time to come in order to ensure a level playing field for persons with disabilities.
The context prompts us to take note of the fact that some groups like the scheduled caste and the scheduled tribes are given the benefit of reservation in jobs not merely through statues but also through constitutional provisions. Persons with disabilities however, came to enjoy these facilities through the PWD Act, 1995, albeit reservation in C and D categories of jobs at the level of the central government and also at the level of some state governments did exist prior to that through executive orders. The enactment of the PWD act however ensures reservation in all categories of jobs. The principle of 'reasonable accommodation' should not deprive persons with disabilities of the benefit of reservations and concessions. The manner in which this principle of reasonable accommodation as envisaged in the Americans with Disabilities Act, has been interpreted by the American Judiciary in favour of the employers causes serious concern.
Some people in the disability rights movement favour the idea that persons with disabilities cannot perform all the jobs and that the bureaucrats often are found groping in the dark as to where to place a person with a disability. Section 32 of the PWD Act 1995 also envisages provision for identification of jobs. It also provides for periodic updation and revision of the list of identified jobs on a regular basis so as to take note of the advancements made in the field of science and technology enabling persons with disabilities to perform greater number of jobs than in the past. The relevant notification issued by the central government also clearly states that the list of jobs so identified by it, is only illustrative and not exhaustive.
To my mind, the provision of identification of jobs ideally may be done away with. However, it may be retained in a modified form in which case it must clarified beyond an iota of doubt that such a list is indebted only to provide a certain guiding framework to the bureaucrats and that it does not have any restrictive implications. However, this carries the risk/danger that for all practical purposes the bureaucrats may start treating such a guiding document as the gospel truth and thus refrain from deviating from it no matter how genuine a given case happens to be which justifies such deviation.
Decision making mechanism
The deliberations of the ad-hoc committee on the UN Convention for the Rights of Persons with Disabilities, which later got adopted, witnessed an absorbing battle of wits on the issue of legal capacity of persons with disabilities. While everyone agreed to recognise persons with disabilities as persons before the law on an equal basis with others, and also their legal capacity to act, opinion was divided in respect of persons with certain specific categories of disabilities, particularly persons with Mental/Psychosocial disabilities.
Some argued that for persons with certain specific categories of disabilities, there should be provision of substituted decision making mechanism since they cannot act on their own. Others, however, felt that for such categories of persons, there should be provision of supported decision making mechanism and not for substituted decision making mechanism. Supported decision making pre-supposes an inherent capacity in every individual. It also underscored the principle of interdependence amongst human beings. Substituted decision making, on the other hand negates capacity and forecloses all opportunities for a person's capacity to evolve. For example, today, I may need total support, but over a period of time the need for support may get reduced.
The supported decision making mechanism finally won the day at the UN headquarters, i.e. in the deliberations of the said ad hoc committee, and rightly so. The fact of the matter is that all of us, whether disabled or not, do need support, for example one needs the support of a doctor during sickness, or for that matter of a legal council to deal with a legal litigation. It also highlights the fact that life on earth is neither about dependence nor independence; rather it is about interdependence.