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In our preceding cover, we told you how black it can get for the deafblind community if it is brushed aside as an embarrassment by family and society. This one brings you rivetting stories of achievements of this very community which came about with just a little prop, sensitivity and effort on the part of parents and community workers. If today, 58-year-old deafblind Sethi can talk of his PhD, Zamir & Pradip can live independently, earn, commute and aim for the skies and if Rajesh can watch TV through his mother's eyes, it's all because they fought against all odds. Neha Mehta reports
As Uma and Mahinder sit hand in hand in Rewari's Dahina village, little do they know that they are scripting a love story like no other. The couple has been married for nearly a year and is expecting their first child soon. But they still blush like teenagers when together. Their eyes are locked but only Mahinder can see his wife's face, radiant with the joy of an expectant mother.
Uma has never seen or heard her husband and can never talk to him, for she is deafblind. But her hands are her eyes, ears and voice. She flits them across his face and his palm, telling him that she will distribute ladoos to the entire village if she delivers a boy, and will make sure the child joins the Army. Mahinder looks at her indulgently, like he does most times when she weaves magic on his face with her 'talkative' fingers. Just as well that their son joins the Army, for Mahinder couldn't, because he lost his leg in a freak accident a few years ago.
Uma and Mahinder were the last hope for a 'normal' life for each other. While 19-year-old Uma's traumatised father had a heart attack worrying about settling her, 26-year-old Mahinder stopped getting proposals after he lost his leg. When the couple tied the knot last April, her hands asked him, "Why have you married me? You are handicapped. I am deaf, blind and dumb. Why add to your burden?" Mahinder replied, "I married you because I saw God in you."
But for most of her life, nobody saw God in Uma. Born deaf to poverty-stricken parents, she soon turned blind as well. Her distraught mother, who too is deaf and dumb, flailed her arms about helplessly, gesticulating that somebody had disabled her daughter with black magic. After several visits to doctors failed to restore her vision, Uma was locked up by her bemoaning parents, with no means of communicating her asphyxiation in her black, soundless shroud.
Uma's life changed when her friendly neighbour, Srinivas Yadav, Venu Eye Institute and Research Centre's fieldworker working to rehabilitate Rewari's blind came calling. Though Yadav wasn't trained to teach a deafblind person, so moved was he by her helplessness that he decided to develop a unique language for her. He started by teaching her a symbol for water. She began making it each time she was thirsty. Soon, they evolved their own set of codes for everything. Uma moved onto learning to write on people's palms. Simultaneously, she learnt to make symmetrical chappatis, lip-smacking fare, wash clothes and even babysitting.
Today, Uma is the ideal daughter-in-law, the apple of her in-law's eyes, who have learnt her special language. Besides entertaining them with her incessant 'hand chatter', she makes sure that she presses and massages her mother-in-law's feet each night. She is deferential enough to deftly cover her head each time her in-laws walk in. Says her husband: "She does all the housework - washing, cleaning, cooking. But if I fetch the same vegetable to cook for two consecutive days, she refuses to cook it!"
Mahinder's bride, is, indeed, quite finicky. "If she has cleaned the floor, I am not allowed to step on it with shoes on. She insists on bathing everyday, even if it is freezing cold. She can't stand dirty clothes around her and can tell them by their smell. I have to be careful when I gift her a saree, for she won't take it if its texture doesn't feel good to her fingers," he says.
But then, Uma is one for value for money. "If she purchases vegetables or accessories from any vendor who stops by, she won't give him a penny more than necessary. She can tell the difference between notes and change of different denominations and anybody dare swindle her," says Mahinder.
The ever-indulgent Mahinder pampers Uma silly. When he takes her to her parents' village 35 km away, the daily-wager hires a cab to for his lady love. He often surprises her with gifts when he returns from work at a stone cutting factory. Her prized possessions? "Nail polish," she signs, as she proudly displays her immaculately coloured blue nails which she has painted herself. The next on her favourites list is a wristwatch Mahinder recently gave her. Though she can't tell the time herself, she values the gift "because it cost Rs 100."
If Yadav gave Uma a unique language, 25-year-old Rajesh Seth's mother did the same for him. The youngster from Surendranath was struck by the Usher's Syndrome that left him deafblind. But his mother - remarkably without any specialist's help - developed an effective means of communication for him. Today, the well-built lad 'talks' fluently with his mother. The two often burn the midnight oil on Rajesh's favourite pursuit: 'Watching' masala flicks on the telly. Says his proud mother, who 'tells' Rajesh what is happening on TV scene by scene, "Sometimes, I have to remain awake till the movie is over. If I doze off, he wakes me up."
Like Uma, Rajesh likes to dress well. He finds his own clothes and even selects his favourite perfume from the closet. The ebullient youngster earns his living by running his own sweetmeat shop.
Fifteen-year-old Saaqib too, owes his expression to the unflagging efforts of his mother. When the child was diagnosed deafblind, his mother, Dr Nishath Akhtar gave up her medical practice to devote herself full-time to her special child. She attends Chennai's Clarke School for the Deaf and Mentally Retarded with him, spending her day assisting his teachers. Saaqib has now learnt to communicate using a method called Tadoma. So, when he extends his hand to his mother's cheeks, he is not merely being affectionate. It is his primary mode of comprehending the external world. He understands what is being said to him by the movement of his mother's facial muscles and even answers her queries in a word or two. Says Dr Akhtar, "I don't know how he acquired this skill, but he understands me by touching my face." Then, there are the scholars. The achievements of T Prabhakar from Pattapalayam, a remote hamlet in Tamil Nadu, are perhaps unparalleled.
For someone who was born nearly blind and turned deaf by age 5, this rural lad harboured quite an unprecedented urge for normalcy. Initially, he insisted on attending normal school but gave up after his dual-challenged state made him an isolate and retarded his learning. His life changed when rehab workers of the Holy Cross Service Society chanced upon him. Sustained oral communication gradually gave him back his confidence which he had lost to his "normal" but cruel classmates. He learnt cycling, swimming, navigating himself to the school library, reading newspapers and storybooks and, of course, as he puts it, "watching television." Despite the heavy odds, he passed his Public Examination (SSLC) in first class with 60 per cent marks. Last year, he joined college.
Nineteen-year-old B Indira Priyadarshini, a 12th standard student with a severe hearing impairment was diagnosed with Usher's Syndrome only after completing her high school. She faces the prospect of impending blindness even as she prepares for her board exams. However, that doesn't stop her from being a computer whiz and scoring almost 90 per cent in her school examinations. "Java, Visual Basic," she says confidently, when asked what she is learning in computers, belying her struggle to articulate the words she cannot hear herself speak.
The kids would find a mentor in Mumbai's 58-year-old Dr Rajinder Singh Sethi. Born blind, he became progressively deaf. But this didn't stop him from leading an awe-inspiring life. With the help of a London-based trainer for blind students, Ms Rehmat Fazelbhoy, he was enrolled in a school for normal children at 11. He obtained his Bachelor's degree in Sociology and subsequently did post-graduation in History. The son of a fairly rich businessman, Dr Sethi decided not to join his father or to take up any job. Instead, he chose to do a post-doctorate in the "socio-economic problems of the educated, employed Blind in Mumbai". He was subsequently honoured by the UGC with a junior research fellowship. Currently, he is the editor of Helen Keller Institute for Deaf and Deafblind's newsletter Deafblindness in Asia - A Communication Link, which he brings out in Braille and English. He doesn't charge the institute a penny for his services. He is also the Vice-President of National Association for the Blind, Mumbai.
"I have not taken up any gainful employment. My hearing ability has diminished by 85 per cent. I manage to hear with the help of a hearing aid. I would like to do as much as I can to the deafblind community," he says. Still think Black can't be beautiful?
(With inputs from TN Raghunatha
in Mumbai and K Venkataramanan in Chennai)
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