By Malay Desai
At a time when self-promotion is second nature to many and earning print space often requires desperate efforts, we are surprised to meet 42-year-old Nilesh Singit.
The kurta-clad disability rights activist, appearing more like a JJ School of Arts student, flatly refuses to be interviewed, citing ‘typical’ treatment meted out to the disabled in ‘such’ articles. We agree, many stories of differently-abled people are either too sympathetic or overtly glorifying, but assert that we won’t veer in either direction.
"Things are blown out of proportion, a small achievement is written as ‘overcoming all odds..’ he tells us later, having agreed after a mediator’s word. So here are some facts about Singit’s life, with the least usage of superlatives: Nilesh belongs to a large joint family hailing from Karnataka but has grown up in Mumbai. The cerebral palsy (a group of movement disorders caused by damage to the brain before, during or just after birth) he was born with was nearly invisible for his siblings and cousins whom he shared a close-knit childhood with. At his school (special one for persons with disability - PWD, an idea he’s against) and later, his inclusion factor wore off a bit. "Over the years as a PWD and as a rights advocate, I have realised that things come in packages of advantages and disadvantages. I have come to accept it, why rue it? Those who ‘acquire’ disability have difficulty accepting it," he feels, likening himself to a person ‘who failed the medical test by a whisker and could not pursue his/her dream of being an air force pilot.’ Surely a perspective we haven’t heard before.
It’s this attitude (and the eloquence in conveying it) that we quite relish, despite his career having enough to gush about. Once before getting on to a flight, Singit was asked for his medical certificate, which he didn’t have. A doctor was called, who then proceeded to ask him questions, to which Singit interrupted and stopped short of lambasting him and the crew, before making his way into the flight. Turned out that the doc was asking questions related to Down’s Syndrome. "Where’s your certificate?" Singit asked them back.
His flamboyance may have to be tucked in at various moments though, as he’s working in one of the most challenging sectors of the government – advocacy. As a research officer at the Centre for Disability Studies, Nalsar University (Hyderabad), he writes papers, conducts audits and litigates for the betterment of PWDs in India, and not all people he meets are smooth to deal with. "I’ve been caught up quite a number of times in what is termed as ‘friendly fire’. I always carry a white hanky," he claims, tongue firmly in cheek.
That said, those who know Singit well don’t really risk not taking him seriously as the man has arrived at this position after much experience in the field. An MA in Literature, he pursued disability studies and went on to play several key roles in the field - trainer, advocate of rights and researcher being some. "There is a dearth of writings on disability; as an access audit consultant I found that even though there are tonnes of data on universal design, there is not much on adaptation and customisation for an individual’s needs," he informs. Of course, being a PWD himself was a great influence in advocating for the UNCRPD (UN Convention on Rights of Persons with Disabilities), an international instrument that provides PWD with the same human rights as everyone else, which is sanctioned by India. "Disability studies are the way to get the PWD in command of his/her environment and life," he admits.
His strong opinions and voices for and against all things perfect and imperfect come out unfiltered through his writings on the web. His blog, ‘Disability News Worldwide’ is replete with informative, transformative, even evocative posts. Another blog carries his rant against the Lokpal and an old ‘open letter’ to Shah Rukh Khan, while his social network profiles bear pointers to the range of work he’s accomplished and waiting to do. But it is only after hearing his plans do we judge him as a passionate writer: "I regret not having written as much as I ought to have. I think I have in me a book or two I’d like to begin writing sooner than later."
"I would rather write than be written about," he says of his above mentioned reluctance, explaining that the very act of overcoming the stereotype sometimes reinforces the stereotype. We don’t know if this article would make the cut with him, but we sure have returned more insightful after having met him.
(This is part of a series of articles that celebrate the intriguing lives of persons with disabilities, an initiative of Trinayani, an advocacy trust. www.trinayani.org)