Of disability — perceived and real

The various prisms through which disability — perceived and real — is viewed, and how differently people handle it was driven home to me through two very striking encounters last week.

The first was in the clinic of the Chennai ENT specialist Dr Mohan Kameswaran, who I found sternly telling a young mother, “While you spend so much time googling what your baby should and should not do, do you realise you are losing the best moments of her childhood? Instead of cooing and singing to her, you are wasting your time on the computer googling.”

Obviously a hyper-anxious mother, she was worried that while her baby responded to her talk and other sounds she made, she refused to respond to the rattle! The doctor’s curt response: “I think your child is more intelligent than you. She is responding to sounds that make sense to her, such as your talk, or time for a feed. She is not interested in responding to the rattle.”

While he did take the precaution to prescribe some hearing tests, Kameswaran was amazed that every day people came to him with imaginary illnesses, thanks to Google. One patient suffering from sore throat “googled his condition, decided he had cancer of the larynx and walked in as though he’d die the next day. I had to disappoint him and tell him that he was perfectly healthy”.

I was amazed at the mother, who kept butting in with more doubts that the internet had planted in her head, and seemed hell bent on seeing a disability that the doctor was sure didn’t exist!

This encounter brought to mind a bunch of wheelchair-bound disability warriors I’d met the previous week, not whining or complaining about their multiple disabilities sustained in road accidents or falls. Each story was powerful; 90 minutes in the company of these feisty people can teach you a lot about emerging triumphant from life’s severest blows.

The most powerful story was that of Justin Jesudas, an IT professional in Chennai who is paralysed beneath his neck, and can’t use his fingers or hands after the car accident he suffered six years ago when his car went into a pothole and hit the road divider. His purse and phone were stolen. But he clearly remembers sitting up and borrowing a mobile phone to call his wife, “which means both my balance and fingers were fine”. What the accident didn’t do, shoddy handling by the paramedics who transferred him to the hospital did. “I heard a doctor in the hospital shouting: ‘He is complaining of neck pain and you are flexing his neck’.”

But Jesudas isn’t looking back. After the physiotherapists had spent six months trying to make him stand up and sit down, he took control of his own life and “focussed on what I can do”. In order to be self-sufficient, he asked his parents to move to another house because they’d keep jumping in to help with simple chores. He learnt how to pick up and grip objects, bought an automatic transmission car and painstakingly made adaptations watching YouTube (“No manufacturer does any adaptations for the disabled; it’s not profitable.”) and with the help of a specially fitted large tripin, uses his shoulder to manoeuvre the little knob on the steering he uses to turn the car. “I can now drive at one stretch from Chennai to Kerala, do my own shopping at malls.” That’s not all; he taught himself swimming and has won golds at international championships.

S Vaidyanathan, an IIM-Bangalore graduate, became a paraplegic after a freak fall in college, returned next year to the campus which then had no access to the classrooms (“I was lucky, and didn’t have to attend classes!”) But while job-hunting, his wheelchair spooked the banks and other financial entities who interviewed him. Till he came to BusinessLine for a research analyst’s job. “The Editor didn’t ask me a single question about the wheelchair, and only said: ‘Please check out the toilet’.” He stayed here for several years, then moved to a financial company — by now we had perhaps become a more inclusive society! Two years ago, he quit his corporate job and now works full-time to help those with spinal cord injury through The Spinal Foundation (TSF), which he and others have founded.

There are so many: feisty, smiling, joking, laughing. Their banter and laughter are infectious, energising, but above all empowering. There is no whining, no looking back.

They were all there, bright eyed and bushy tailed, on their manual wheelchairs — automated ones are a strict no-no as regular exercise is a must — at Chennai’s Marina Beach for the recent Kotak Wheelchair Marathon organised by TSF and partnered by The Hindu .

But then, such stories do not reflect the larger picture of those with spinal cord injuries. Careful handling during transportation to hospital after accidents — treat them like logs is the mantra — is not followed. Rehab facilities are too few. It is a collective shame on society that about 20 per cent of such injuries happen at construction sites because workers are not harnessed, and they have access to the worst possible medical treatment and rehab facilities. A simple clause in the contract/job order of buildings, offices, homes can make the difference.

The irony is that while the well-heeled go to specialists with imaginary disabilities/diseases, Manoj, an 11-year-old child, living in an 80 sq ft home in a Chennai slum, struggled for weeks to get any medical treatment after falling into a huge ditch dug up for power cables while building the new secretariat. He finally landed up at CMC, Vellore, and now goes to school on a wheelchair. Numerous petitions to the Tamil Nadu government, but no compensation yet! Meanwhile Manoj reads Harry Potter books in the school library, plays cricket from his wheelchair and has fallen off it “44 times”, he says with a grin!

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