Hi friends, Excellent and thoughtprovoking blog indeed. I have been thinkind for several years whether western models of disability could be superimposed in a society that is ridden with so many inadequacies and unsurmountable inequalities.
I firmly believe that parents need to be involved in the disability movement at least for those disabilities that cannot speak for themselves. Also, treating disability as a homogeneous subject is absolutely absurd. A blind and orthopedically disabled is comparatively better exposed than those with hearing disabilities and the intellectually disabled and mentally retarded have a long way to go. Probably that is the reason why many corporates and civil society organizations shy away from getting involved in our affairs. I would welcome a discussion on the topic. I have some more to say subsequently. With best wishes, Ketan On 3/7/14, avinash shahi <[email protected]> wrote: > Guest Post by SHUBHANGI VAIDYA > http://kafila.org/2014/03/06/disability-rights-and-parental-activism-can-they-co-exist-shubhangi-vaidya/ > 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. > > > > > > > -- > Avinash Shahi > M.Phil Research Scholar > Centre for The Study of Law and Governance > Jawaharlal Nehru University > New Delhi India > > > > Register at the dedicated AccessIndia list for discussing accessibility of > mobile phones / Tabs on: > http://mail.accessindia.org.in/mailman/listinfo/mobile.accessindia_accessindia.org.in > > > Search for old postings at: > http://www.mail-archive.com/[email protected]/ > > To unsubscribe send a message to > [email protected] > with the subject unsubscribe. > > To change your subscription to digest mode or make any other changes, please > visit the list home page at > http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in > > > Disclaimer: > 1. Contents of the mails, factual, or otherwise, reflect the thinking of the > person sending the mail and AI in no way relates itself to its veracity; > > 2. AI cannot be held liable for any commission/omission based on the mails > sent through this mailing list.. > -- Ketan Kothari Phone: [r] 24223281, Cell: 9987550614 MSN ID: [email protected] Skype ID: Ketan3333 Register at the dedicated AccessIndia list for discussing accessibility of mobile phones / Tabs on: http://mail.accessindia.org.in/mailman/listinfo/mobile.accessindia_accessindia.org.in Search for old postings at: http://www.mail-archive.com/[email protected]/ To unsubscribe send a message to [email protected] with the subject unsubscribe. To change your subscription to digest mode or make any other changes, please visit the list home page at http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in Disclaimer: 1. Contents of the mails, factual, or otherwise, reflect the thinking of the person sending the mail and AI in no way relates itself to its veracity; 2. AI cannot be held liable for any commission/omission based on the mails sent through this mailing list..
