Parents are valuable allies in the Disability Rights Movement thanks to their intimate engagement with persons with disability. To view them as representatives of a ‘disabling’ society does them a grave injustice. However, the heated debates over the new Rights for Persons with Disabilities Bill introduced in the Rajya Sabha have seen a confrontation of stances between two groups along these lines.
The first group consists of vocal self-advocates who point out a number of weaknesses and contradictions in the Bill from a Rights perspective, citing the provisions of the United Nations Convention on the Rights of Persons with Disability ratified by India in 2007.
The other group is a loose coalition of ‘cross-disability’ activists including lobbying for a speedy passage of the Bill, with crucial amendments, in what is the last session of this Parliament and of the government of the day, which just happens to be UPA.
It is important to note that this Bill has not just dropped down from the heavens; it is the end result of years of protracted consultations, contestations, confrontation by stake-holders across the sector. I do not propose here to go into the pros and cons of its provisions; rather, I wish to highlight a rather disturbing trend that I discern in the frenetic exchanges between some self-advocates in the sector and parent activists on the social media.
Disabled activists seem to have bought the notion that parents are ‘on the other side’, representing the voice of a disabling society that would isolate and exclude persons with disability and subject them to a regime of charity, pity and welfare. They would deny persons with disability their rights, agency and full legal capacity thereby entrapping them in relationships of power and dominance to which they must meekly submit. This formulation is a product of the power and appeal of the ‘social model’ of disability which has been the ideological epicenter of the Disability Rights Movement which emerged in the United Kingdom in the 1970s and 1980s with the seminal works of scholars like Mike Oliver, Vic Finkelstein, Colin Barnes and others. Disability is viewed as a social creation, the result of inaccessible environments and societal attitudes rather than individual ‘impairments’. Despite the model’s great resonance and appeal to those with physical disabilities, it lacks explanatory power when we talk about conditions like autism, and other ‘mental’ disabilities where there is an embodied reality, a real difference in being in the world that must be acknowledged and respected.
For persons with autism, severe intellectual disabilities, etc. whose mental capacities and modes of engagement with the world are qualitatively different from the rest, the need for support is an undeniable reality which it will be short sighted and cruel to deny. To assert, for example that a person with severe autism is able to exercise “full legal capacity” and that any attempt to provide guardianship and support is “plenary guardianship” by any other name betrays an appalling lack of awareness about the daily lived realities of persons with ‘high support needs’ and their family. To assert that special schools or home schooling violate the right to ‘inclusive’ education displays a cosmetic understanding of the dynamics of schooling in an overburdened and under resourced environment. Merely dumping a child in a classroom where her special needs are neither understood nor addressed is not inclusion. If my child thrives, learns skills and has a respectful and happy environment in a ‘special’ school, am I denying her ‘rights to inclusion’ by not sending her to an overcrowded classroom attended by an overworked, overwhelmed ‘regular’ teacher?
Parents have their hands full in dealing with the day to day realities of caring for a child with disability alongside their other familial, social and professional responsibilities. In addition, they must perforce take on the role of advocacy for the needs of their children and the struggle to obtain scarce services, a tall order indeed. Some have established NGOs and centres that open up spaces for families facing similar circumstances. The ‘care-giver/NGO lobby’ as I have heard them derisively dubbed by some vocal activists are believed to lack an understanding of the discourse underpinning the disability movement, and are seen as mere opportunists trying to win favour from the powers that be so that their NGOs may receive public attention and recognition and their own stature as the self-styled ‘messiahs’ of the disabled reinforced. This does grave injustice to the crucial role played by these parent activists in getting disability on the map and in creating awareness among professionals, policy makers and the general public, in addition to providing desperately needed services, no matter how limited. In the current debates about the Bill too, they have been accused of being stooges of the ruling party and undercutting the aspirations of the community allegedly to advance their own interests. The ‘charity model’ that disability activists aggressively debunk and the NGO sector supposedly thrives on has a cultural and social context which must be understood in a nuanced manner before rubbishing it entirely. The role of the family as a key stake-holder and actor in this discourse must also be acknowledged.
This unfortunate cleavage in ideologies and world views which has come to the fore not merely in reasonable debate but vicious name calling is causing incalculable harm to the disability movement (if there ever was one) and most significantly, to those sections of the disabled population whose voices are as of now articulated by parents and care givers. Utilizing the understandings and experiences gained from a life time of care and intimate engagement will surely bring nuance and a greater appreciation of heterogeneity in the movement. When ‘justice’ is not tempered with ‘mercy’, it becomes a travesty. Rights without caring practices are just words. The needs, aspirations and subjectivities of some people with disabilities may be completely different and not easily accessible to those who do not live and work with them. But this does not deny their humanity or their right to experience their ‘difference’ in multiple ways. A homogenizing discourse based on one, canonical way of thinking about issues does a disservice to the plurality and multiple realities of the world we live in.
Shubhangi Vaidya teaches at the School of Interdisciplinary and Transdisciplinary Studies at the Indira Gandhi National Open University. She is the parent of a teenager with disability and has conducted ethnographic research with families of children with Autism.