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Living with Disability; Neither Disabled, Nor Divyang

A priest from Rajasthan, who lost both his legs to a medical condition, is forcing people to rethink ability and disability, a debate that the disability rights movement advocates for.

Stephen Hawking’s death earlier this year threw open a massive debate on disability and the lenses through which it is viewed. Hawking, a physicist par excellence, lived with a progressive neurodegenerative disease and was a wheelchair user and used a speech-generating device as well. In the wake of his death, both mainstream media and social media were replete with odes and obituaries talking about Hawking “overcoming his disability” and achieving things “despite his disability”, reinforcing the idea that disability is abnormal and, inevitably, a deterrent.

Far from these largely-online debates, in rural Rajasthan, Pratap Singh, a priest and general-store owner, lives with disability, owing to callous medical negligence. Singh was wrongly diagnosed and given the wrong treatment for jaundice in 2006, and subsequently, he developed gangrene and had to have both his legs amputated.

Singh admits that the incident discouraged him and made him feel that he would always be dependent on someone. But on the recommendation of a few friends, he decided to get prosthetic limbs and trained himself to use them, regaining his strength.

As Community Correspondent Shambhulal Khatik follows him with his camera, recording his everyday chores, there is no drama and no lofty rhetoric about divinely-ordained bodily attributes or “divyang”, as the current government’s lens of charity on disability would have it. Singh talks about living with disability, not about overcoming his disability.

Writing about Stephen Hawking and her own experiences of living with disability, Ace Ratcliff, a feminist disability rights activist, says “Living within a disabled body afflicted with perpetual pain isn’t easy. More often, however, what limits me is a world designed to explicitly and implicitly accommodate only the non-disabled subset of the population.”

Singh inhabits this world and goes about his business just like anyone else but without the support systems that persons without disability have access to. When Shambhulal asks him if any organisations supported him, he says that he does not depend on anyone. Fortunately, he had the necessary financial resources to fall back on.

He tells Shambhu how he now rides a motorbike and goes about his business, seeing it as an everyday part of his life, and not something extraordinary.

Shambhulal believes that Singh is an example for those who feel less capable because they live with disability. But to go back to what the rights-based model of disability suggests, persons with disability are made to feel less capable because of the lack of appropriate infrastructure and sensitisation.

As opposed to the self-explanatory charity model and the medical model that seeks to ‘fix’ disability, the rights-based model or the ‘social’ model advocates addressing barriers to participation through legislation, services and technology. Singh is not disabled, not chained by his prosthetics, not differently-abled or divyang; he simply lives with disability. And it is the job of the government, the medical establishment and each one of us to create legal, technological and social environments conducive to his everyday living.

Video by Community Correspondent Shambhulal Khatik

Article by Alankrita Anand, a member of the VV Editorial Team

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