They are the chosen ones
By Nonika Singh

‘One can never consent to creep when one feels an urge to soar’.

— Helen Keller

SHEFALI’S life was the stuff dreams are made of. Rich and beautiful,in love with and married to Mr Right. The entire world and even heaven lay at her feet till that eventful night when premature labour contractions brought a physically disabled child into her arms. The cataclysmic change turned her near-perfect world upside down. The numbing stupor, however, soon gave way to courage. Like a woman possessed she decided to give the new complication in her life, the best possible shot. As the special baby became her raison d’etre, everything else, including her personal happiness and even marital harmony, became secondary.

On the other extreme of the spectrum there are a few hair-raising but true accounts. During the Partition, a migrating family deliberately left behind their mentally deranged child. Never mind that destiny caught up with them and their second child too was afflicted. In another case, a father unable to cope with mental deficiency of his slow learner son metes out physical punishment when the boy fails to solve a simple mathematical equation — two plus two.

In a nation obsessed with sex (the blatant almost disgusting preference for male child) of the yet-to-be-born, offspring parents remain ‘deliriously’ oblivious to some chilling facts. The cold statistical figures reveal that nearly 10 per cent of the Indian children suffer from one or the other disability. Moreover, analysts argue that the actual figure could be much higher than the recorded 35 million disabled children. Out of that 10 per cent 5.7 per cent are blind i.e. 60,000 children turn blind every year. Besides, in the age group of 0-14, 2.4 per cent suffer from locomotion disability and nearly 1.4 per cent are born with a hearing handicap. The most dismal bit of news is that a staggering 6.6 million children are mentally retarded.

Right from the moment a new life yawns inside a mother’s womb, dreams and expectations are woven around the new addition (to be) to the family. Indeed, the sheer joy and bliss which children bring into our dreary lives is unparalleled. Yet what happens when children of a lesser God arrive on planet earth peopled by ordinary mortals? More so, how do parents react? Parents take normality so much for granted that even in their wildest nightmares, they are unprepared for this cruel quirk of fate. Initially there is this stubborn refusal to accept the harrowing reality which is followed by an aching realisation that something is amiss. Rajni Verma, a librarian, says: "For years I fought all suggestions that my child was inadequate or different though at the back of my mind I was unconsciously aware that something was terribly wrong". Incidentally physical disabilities are accepted by parents relatively calmly and with a firm resolve to make their children overcome the handicap, but mental deficiencies are difficult to accept and bear.

Fissured apart by the ‘why me’ syndrome, as they battle with their ghosts, some like Gurdeep Singh, a bank official who is the father of an only child with a border line IQ, fall into an abyss of depression. At times (more often than not) marital equation becomes skewed and there is the usual blaming-each-other phase — "It’s your genes". Rajni Verma, recalls for a decade life was near hell. While I was losing my health rapidly, my husband and daughters developed a massive complex and refused to accompany our son.

Dr Tehal Kohli, president of the Indian National Portage Association, an organisation wedded to the cause of children with special needs, says: "Undeniably, parents undergo tremendous stress which is both horizontal and vertical. Horizontal in the sense that it pervades all stages of their lives, and vertical as it percolates down to each member of the immediate family and sometimes affects relatives of the extended unit as well". Societal disapproval which invariably comes in the garb of overbearing sympathy laced with hurting innuendoes — ‘poor you’ — forces them to retreat behind a mask. Cocooned inside their respective shells, the strain gets further aggravated. Ragini Sharma, a lecturer, admits: "Coming out of the closet has been strangely reassuring. Today I am comfortable in the knowledge that others know". The realisation that they are not alone, unburdens their hearts and gives vent to their pent-up emotions.

Acceptance, however, is only half the battle won. Conquering the mind is only one side of the coin. On the flip side there are ground realities to be tackled, human frailties to be accounted for. Rajni Verma remarks: "I knew that to help my son, I would have to pull myself together. So I read a lot of books, followed tips on autosuggestion". Life for them is a constant struggle, throwing up challenges every moment, for special children require extra attention, skill, care and additional expenses. Gurdeep rues, "Every single appointment with the doctor meant an expenditure of at least Rs 400." Hardeep Kaur, whose daughter’s disabilities have been further compounded by failing eyesight, says harried trips to Delhi have become an intrinsic part of her weekly itinerary.

Rajni Verma travelled all the way to England to grasp the complexities and severity of her son’s problem. At home, she delegates responsibilities to each member of the family. Psychologists inform that in such critical situations, roles are being constantly reinvented and improvised upon.

Besides, there could be geographical reorientation too. Gurdeep moved from Ludhiana to Chandigarh in anticipation of better institutional care. Shefali reconciled to a long-distance marriage, and made Delhi her home for similar motives. But a consultant scoffs at these concerns and laments that parents would rather dump their children in institutions, whereas the family remains the best rehabilitation centre. It isn’t as if parents are shirking their duties. They too have their own compulsions. For instance both Gurdeep and his spouse Ramneek are working. Since such children are more susceptible to exploitation (both physical and emotional), parents dare not leave them alone. As a result even when children outgrow school-going phase, parents continue to pack them off to special schools where they follow some routine. Dr Kohli says that existing institutions are not sufficient to cater to even 1 per cent of the disabled child population.

Sure, institutions do exist. There are four premier national institutes for visual, orthopaedic, mental and hearing disabilities, offering services of training, recreation and rehabilitation. Then there are 200 organisations for the blind, 150 for the deaf, 150 for the orthopaedically disabled and 150 for the mentally retarded. India endorses the UN declaration on rights of children adopted in 1959. The empathy for children of a lesser God is reflected in changing nomenclature — from disabled children to children with special needs. This year we have enacted a disabilities Act which lists out a host of concessions and facilities. As many as 50,000 children with disabilities have been accommodated in 1200 special schools and 42000 children with disabilities have been integrated in normal schools. Should these children have special schools or should they be assimilated in the main stream education? The debate ensues. A parent argues that special institutions tantamount to stigmatisation and insulating them from society. Moreover, under the influence of normal peers, they are likely to imbibe healthier qualities; while amongst themselves, they will only pick up each other’s oddities. Dr Kohli too builds up a case for integrated education on the grounds that professionals can follow the child-to-child technique i.e. use children as resources to train the less fortunate ones. Dr Kohli, whose organisation runs a certificate course, training parents at their homes, says that parental involvement and participation is the most vital ingredient. Mercifully, parents are only too conscious of this. A group of parents in Chandigarh had even started a school funded and organised by parents themselves. Unfortunately their sincere endeavour couldn’t sustain itself for too long.

The prophecies of doom-sayers signalling the death of family notwithstanding, family remains the single most important support system. Mrs Sharma agrees, "Child is well taken care of within the ambit of four walls and social interaction is well provided for in the family set-up. Even the extended family provides the right environment". Love can work miracles. Thanks to conscious and consistent efforts of parents, many mentally handicapped children have learnt to maximise their physical potential. Parents have equipped their physically disabled children to score over others in the academic field.

So Shefali’s son who can’t run, tops in his class and Virender Singla’s son wins many a medal in athletic meets. He recently returned from a sports competition held at Bangalore. A counsellor rightly states that we have to ensure that these children do not become beggars or dependent beings. Self-reliance could be the key. In 1991, 23 special employment exchanges were set up and 55 special cells created in the regular employment exchanges for job placements. Alas, the actual results were not so encouraging. Only 307 blind, 387 deaf and 3997 in other categories found jobs. The onus once again rests upon parents. So Naresh Gupta has already bought a booth to be converted into a stationery shop for his son whose mental deficiency has been further debilitated by a hearing problem. Tapan’s mother is seeking voluntary retirement to assist her son in dairy business which she proposes to set up for him. Others too have similar plans on the anvil.

However, the greatest fear that gnaws parents is — what after us?. Some have definite ideas like marrying off these children in the hope that their new families will provide the much needed anchor. Others are determined to live up to 85. In an ironical twist, while the birth of these children might have spelled dismay even doom, at that particular point, today their presence has given them reason to live as long as possible. So much so that an 85-year-old woman is not willing to call it a day for she has to take care of her 60-year-old physically and mentally handicapped daughter. Mrs Sharma says, "Today life expectancy has gone up by several notches and there is no reason why I shouldn’t be around for a very long time". Moreover, she strongly believes that there is purpose to their lives and they are the chosen ones, especially selected by the Almighty to take care of these innocent children who are special in so many ways. Singla agrees: "Like my other children, he too brings happiness and laughter into our lives". Indeed, as someone said, "Life does not have to be perfect to be wonderful".