Birds with broken wings

Renuka Khandekar

I cannot presume to speak on my son's behalf, for Vak Devi did not write Om on his tongue. His school, however, says he is one of the happiest and best-adjusted children they've ever had. Surely, we cannot demand more? The truth is, a disabled child is a calamity you wouldn't wish on your worst enemy. Let's not pretend otherwise, nor lisp politically correct garbage like "specially abled" and "differently abled". Films like "Anjali" confectionise the issue and tidily kill the child off, whereas every parent with one knows that the grind is everyday and forever.

If fate has touched you with a lighter hand, your child can be trained to get around the problem and get on with life in some measure. But what do you do if a hopelessly disabled child is born to you? A quadriplegic with severe cerebral palsy, whose prognosis says "permanent mental and physical retardation"? Who drools all the time? Who can't get a fly off his nose, cannot speak, cannot sit without support, whose hip dislocates despite an operation? Who takes one hour to be fed each meal and can't write his needs? Who cannot be potty-trained?

He grows heavier each year inversely to your strength. He won't, like Shravana, be the prop of your old age. You must work really hard to provide for him, in case you die in a car smash tomorrow.

Everyone talks about what such a child needs - the finances, the rehab centres, transport, civic and paramedical amenities, the educational tools. But at the Spastics Society of Northern India in Delhi, such children are sent back home as "maintenance cases." To be fair, it once catered alone to all of north India. However, its best resources are reserved for those who are formally educable and citable as "success stories" to elicit further funding.

When your child is hopelessly handicapped, even such lone-hope institutions can fling you beyond the corners of the Real Life held up in masala commercials, the golden land where non-disabled people dance, sing, picnic, party, go to school and college, win jobs, travel and marry.

Your child can participate in very few of these rites of life. So with him, you too are plucked forcibly out of the mainstream and hurled into a magical world of age, backache, worry and bills. Hypothetically, it's like being trapped inside the event horizon of a black hole; you can see out but since the black hole doesn't let light go out, nobody outside can see you. You're locked in forever.

Or so it seems at first.

Then you start taking stock of how best you can play the rotten hand you've been dealt. It's easier if you're blessed with even one of three useful assets; a good education, an incurably optimistic heart and a loving family. Just one of these can help propel you to the crucial preliminary of abstracting the situation.

It seems to resolve itself into five concentric circles: You and Yourself. You and Your Child. You and your Family. You and Your Social Circle. You and the World at Large. In the dynamics between these is your sanity and your child's well-being, which ripples further as an augur for greater social good.

Manoj K. Jain

The first rule is, junk the martyrdom prescribed for Good Parents. Get a life! A happy parent makes a better parent. That's what your child needs most. It's as trite and right as that. For mothers, this might mean working at something you enjoy inside or outside the house. It means holidays, nice times, mind-sustaining work. Remember Bhrigu in the Taittiriyo Upanishad, discovering Truth/ Kalvi Maani Bhootaani: Life comes from the Mind and is sustained by the mind.

So make this grand notion work for you. The stimulus of the outside world is terribly important to keep you feeling alive and connected. This gives you the guts to be proactive and interested parents, who can laugh, play, sing, watch movies with their child, spoonfeed him ice cream and cola at birthdays (with plenty of bibs and cloth handy for the drooling) or happily wheel him about in the park, because his disability hasn't swallowed them up whole.

One tremendous thing to share with a disabled child is Indian classical music or Mozart's piano concertos. Such music lifts you into a magical realm of grace and glory - but The Hindu readers know that already! When a deep, resonant Bhairavi, Todi, Darbari Kanhra or Kedar is sung, a disabled child's lips droop as if about to weep, for his pure mind has no defences against the power of the raga. Such children also seem to love sweet, tender songs with a happy lilt, like "Chinna, chinna asai" or "Radha na boley, na boley, na boley re."

Bharatiyar's "Chinnan chiru kiliye," alas, is tough on the new parent's nerves, because it's all about an active child. Indeed, it is important in the beginning to insulate yourself from hurting at everything. Later, when your protective carapace hardens, very little can sneak past to pulverise you, except beggar children at red lights who are more disadvantaged than anybody.

The fact is, every pregnancy has a three per cent chance of going wrong, according to Dr. Brouwer, the senior pediatric neurologist at the famous Children's Hospital at Leiden in The Netherlands. It's just the law of averages. You must believe that and not imagine you were one of Pol Pot's sinning soldiers last time round.

Actually this is the elder's shining hour. They can be such pillars of practical and emotional strength that the parents feel enabled, not disabled. Blessed indeed is the baby with a loving grandmother, like my son's, who sees him as a bird with broken wings, tossed down on earth for her to take charge of. The Shirdi Sai Baba is batting on her side: he said, "Be kind to little children, they are (soft) like the ground beneath the tulsi plant."

Socialise your child by going out as much as possible with him and by celebrating his birthday. Everyone loves being the centre of attention and you'll see how shyly pleased your child is to have people gather around to sing and the drama of opening presents afterwards.

We're glad for all the birthdays, picnics, plays, and musicals my son has been to. He's gone holidaying by road to Ranikhet, Jaipur, Shimla, to a Punjabi wedding in Chandigarh, to a river resort on the Ramganga beyond Corbett and by rail to Chennai. Five days a week he goes to Radhika Alkazi's special school ASTHA - Alternative Strategies For The Handicapped. He makes the 46 km round-trip strapped into a customised seat. When his driver takes off, his father drives 125 km a day between work and school.

My son is the only disabled child in our circle and I'm proud of how easily my friends have accepted him, urging their children to communicate with him. However I also know that if he hadn't been thrust into the world's face, he would have lived in the shadows, secluded and convicted for being born disabled.

S.Anandalakshmy

But how does one deal with the open pity and curiosity of the outside world? By turning into an irresistible force! Far from being immovable objects, ordinary people are really very kind underneath.

It's just that most people feel awkward addressing disability. Our culture has given us no clues. Nobody ticked off Draupadi for sniggering when Duryodhana mistook plain ground for a pool of water in the Maya Vilas. It was appallingly rude of her to say, what else could one expect of a blind man's son. Our films love to ridicule disability and the handicap takes over a person's name, like Salim Langde.

So should people be brisk and cheerful, like nothing was different? Should they cluck and jump to help? The "public" runs the gamut with varying degrees of intensity, but for us it is most comfortable when people are matter-of-fact and quietly helpful.

Funny how the educated middle class is far more uneasy and inhibited in its reaction to disability than the urban poor or rural people who constitute most of our citizenry. Be it on Elliot's Beach in Chennai or in Dilli Haat or just an ordinary Delhi market, chowkidars, dhobis, rickshawalas, vendors, leap wordlessly to help negotiate my son's wheelchair over a kerb or up a step. Glowing moments happen, like at Delhi's annual Mango Festival in the Talkatora grounds, when Malihabad's famous "mango maharaja" Kaleemullah impulsively presented my son with two exquisite husnaras, murmuring Urdu blessings.

Or take the old fakir I met on our lane, the sort of timeless figure you see on the road to Ajmer or Haridwar. He passed by, turned back and gazed deep into my son's eyes. Such children, he said without preamble, urgent that jeansclad I should understand, were "bhrasht yogis", highly evolved souls who missed moksha by a whisker and had to endure one final birth. They chose to be born disabled, so that they were incapable of wrong words or deeds: it was "mahapunya" to tend such children.

Is it? But if that's the way the murukku crumbles, so be it! Why must we, or our children, think there shall be no more cakes and ale?

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