The technology of turning disability into capability

In the late 80s, technocrat G Vijayaraghavan, who was then working in Bengaluru, had an occasion to travel with the then Kerala chief minister E K Nayanar and his cabinet colleagues Gowriamma and Baby John.
The idea of Technopark emerged out of their interaction and Vijayaraghavan went on to set up and run the premier institution.
Not long after he and his wife Rema had settled down in Thiruvananthapuram, the couple, who had a son, were blessed with twins, both girls.But it was only two and a half years later that they realised that Lakshmi and Parvathy were hearing impaired.
“In those days, we didn’t have any facility in Thiruvananthapuram, not even in the Medical College, to test this. We had to take them to Mysore to confirm that they could not hear. Today in Kerala, after a child is born, within a day, we can find out if it is deaf. Every government hospital has the equipment to do a test,” says Vijayaraghavan.
He as well as his wife, who went on to do a bachelors in education and work as a teacher, soon found out that there were no good institutions in the State to meet the special needs of their children. Never one to give up, Vijayaraghavan began a school for them at his home, recruited teachers and enrolled more students who were hard of hearing. “I couldn’t sustain it for long,” he says. While his friends helped out, his position as the CEO came in the way of accepting sponsorships or donations, he says. Lakshmi and Parvathy had to be sent to a school for the deaf in Jagathy.
It was no surprise then that when E K Nayanar and Susheela Gopalan asked him to suggest a technical project, he gave them a note on a social enterprise, which then became a budget proposal to set up an institute for the speech and hearing impaired. “I had quit Technopark by then and when they did a review of the budget they realised they hadn’t started this institute. They asked if I could lead it. I was not keen to do another government job, so accepted it but without drawing even a single rupee,” says Vijayaraghavan.
Over the years, the National Institute of Speech and Hearing (NISH) based in Thiruvananthapuram grew to be an institution of national repute and in Arun Jaitley’s budget of 2015, it was announced that it would be made a Central University, with an amount of Rs 1,700 crore earmarked for it over the next decade. It turned out to be a path-breaking institution which for the first time introduced diploma courses, and later degree courses for the deaf.
Lakshmi and Parvathy, however, did not benefit from NISH in the early years; when the pre-school course was started, they had already gone to higher classes. Only after they completed their Plus Two could they join the diploma course there, which they had to discontinue when the degree course was introduced.
After earning their degrees, the girls went to do a sign language course in Galladut University in the US. “They were the first girls from the country to do that course. The degree certificate there is signed by the US President. That is the kind of importance they give to that centre. I wanted NISH to be at the same level.”
After returning from the US, the girls had a stint at the Toonz animation centre but soon wedding bells tolled for both. Lakshmi found a life partner in Ebin, her NISH classmate, while for Parvathy, the parents found Ganesh, who too was hearing impaired. Now, both couples have a son each and Rema has given up her job to take care of her grandchildren.
It may sound like a fairy tale and sympathy is a word that the whole family loathes but for Vijayaraghavan and Rema, moulding them towards a life of self-reliance was no cake walk. In fact, after realising that their children couldn’t hear, Rema stopped listening to music, which used to be a big part of her life. “Because, the kids would ask what she was doing and it would be impossible to explain to them what music was,” recounts Vijayaraghavan.
The girls who live opposite each other in an apartment block are now fully involved with Vijayaraghavan’s new initiative, a centre in the private sector for autism called The Cadre. They not only teach art but are also involved in running the centre. “When parents see that there is somebody who is deaf but able to work in this manner, their motivation level goes up,” says Vijayaraghavan, adding that the idea of a centre for autism has been there in his mind for half a decade.
He observes that it is one area where very little is being done in the State as well as elsewhere, while the incidence of autism is unexplainably going up. In Kerala, about 1.5 % of the population is autistic. “Eminent people like Albert Einstein and Bill Gates were in the autistic spectrum but they were high functioning. The kind of education system we have in Kerala puts autistic kids, who may be potential achievers, in an area where they are not very capable, instead of moving them into an area where they are capable.”
Starting with five children at a rented place in the capital, he wants to go on increasing the number as they go along and give scholarships. He has already recruited staff and sent them for training to the US. He elaborates on the many short-term plans but the long-term goal is to make it a centre of excellence in the same way as NISH.
Vijayaraghavan comes down heavily on the tendency of people to hide their children with disabilities. He talks about an eminent businessman who brought up his disabled child in another city by employing a caretaker. “Recently, someone asked if we have hostel facility. This is wrong. Parents shouldn’t disown such children or isolate them from society. Sometimes the whole family gets into a cocoon and don’t want to move out. If Gowriamma would call me up on a Sunday, I would go with my children. They would mess up the house but she would accept it. If she didn’t want my children there, she wouldn’t get me on that day.”
What are needed, he reiterates, is not sympathy but an adaptive environment and opportunities for people with disabilities to live and work.