A mother's story

HOW do you respond to a person with a hearing difficulty? Do you refer to that person as hearing impaired? Handicapped? Deaf? Or a person with special needs?

A slim volume entitled Beyond Those Walls Of Silence, by Lalini Rajasuriya makes you much more aware of what it means to live in a world of silence. It is a wise and wonderful account of how one mother has coped with the discovery that her beautiful first born son, Mahinda (the names have been altered); was born with a hearing defect. More than anything else it is written with so much love, that much of the bitterness, or guilt, that often pervades such accounts of mothers who have had to battle with their own feelings of despair and loneliness when having to cope with the idea that their child is less than perfect, gives it an universal quality. Even though it has been dedicated to "Heaven's very special children", it provides lessons in parenting that could be useful to every parent who has had to face that their child could have different needs.

It is a simple story that Rajasuriya tells with a directness and honesty that describes all the wonder she feels at having given birth to a bright and happy baby after months of apprehension that the German Measles that she had suffered during her early pregnancy might lead to problems later on. She has been told of the risks that her unborn child might face, on account of the Rubella attack, but both her husband and she decide to go ahead with the pregnancy. Being the young wife of a Sri Lankan diplomat on his first posting to New York, she very lightly interweaves her account of the first precious months of watching over Mahinda's progress, with her own hidden fears over the likely effects that the Rubella might have had. Just when it seems that her baby is progressing normally, she records an instance when she is taking Mahinda down to the park, when a plane passes overhead.

"I was wheeling Mahinda to the park at the corner of the East Avenue and 81st Street when a tiny aeroplane droning noisily across the sky attracted the attention of every passer-by and with almost clinical precision, heads turned upwards. Mine did too. But little Mahinda, a soft breeze playing gently upon his face, lay sound asleep, lost to the world around him. 'Strange,' I thought to myself, 'Why didn't he react to that engine's roar? Maybe a baby's sleep can sometimes be a really sound one, I wondered as I tried to dispel from my mind any unpleasant and fearful suspicions I might have had'."

She remembers the isolation that she felt, cut away from her family in Sri Lanka, unable to voice her fears and filled with increasing doubts about her infant son; even though her paediatrician kept reassuring her, in the beginning that all was well. "I am a very private sort of person. I never told anyone at home about it. There is no one you can share your feelings with when you are abroad. There is a lot of guilt that you feel in those early days, because at that time you do not know that you can overcome it one day. He was such a beautiful little boy and yet I could not help but notice that there was a blank look on his face. He did not respond to any sounds and could not hear my husband's voice at all, because he has a low voice." Her second son was born a year and a couple of months after Mahinda and she describes how when she was pregnant this time, her husband had an attack of mumps and how she ran to her paediatrician in an absolute state of panic. Fortunately, it was just a scare that passed away.

Her book records with calm precision how she set about facing the situation. She laughs now when asked whether she did not feel depressed at that time. "I was reassured that it was not a hereditary condition, so it was not a fault of our genes," she replies, "besides," she laughs, "there was no time." Perhaps being an educated woman in her late twenties, with a strong background in athletics that gave her an added zest to fight for her child, made her instantly look for practical solutions.

She found a magazine devoted to the teaching of pre-school children. It was called "Guidelines" and it consisted of 12 instalments. The practical lessons in the book are those she has abridged and adapted from her own experience of working with these "Guidelines". These chapters are illustrated with easy to follow drawings that teach the parent how to use every opportunity to help a hearing impaired child to "listen with his eyes". It needs practice, and constant re-affirmation from the Mother, but not in such a way as to make it seem like a punishment or tediously repetitive. As she describes her own methods, she rewards each effort with a simple "Thank you Mahinda" with warm hugs, praise, simple devices using whatever materials are at hand to stimulate the attention of the child, who is otherwise, happy in his own world.

As she emphasises in the section on "Lip-reading and Lip- watching" - "It is important to talk, talk and continue to talk to a hard-of-hearing child. Talk to him yourself and try to make others talk to him too. It is also important that parents should not show outward pity for their hard-of-hearing child. It is equally vital that he should not be spoilt and pampered," she writes. "Once a parent shows her child she feels sorry for him, by gestures like, for instance, stroking his head and moaning, 'Poor child, what am I to do?' even though he would not understand her words, tell-tale signs such as a sad expression, would convey her anxiety for him."

The child needs discipline and it is the parents who are the first, and most important, role models for him. Again, these appear quite obvious truths, but the way that Rajasuriya has introduced them into her story, will make most parents think deeply about what she says. For instance, one of the observations that she has underlined, for further emphasis, states, "As a parent, you are important to your child and have a duty by him. But you need to remember you have other duties too. You have a duty to yourself and to the rest of the family".

As Mahinda starts growing up, the need to put him into a special school assumes greater importance. Since the family gets posted to different capitals of the world, first at Bonn, Germany, and then in London, Rajasuriya explains how the different methods of teaching at each place help Mahinda to learn about colours, shapes, birds and trees and from the world around him. They were also able to get the best kind of guidance they could find from a specialist audiologist in Heidelberg. Again, Rajasuriya has the ability to both create the atmosphere of the warm and friendly surroundings in which the doctor received them and from there onwards, enumerate the methods that she found most useful in training her son.

In her own measured way, Rajasuriya raises some of the most contentious issues that have split the teaching of the hearing impaired and makes the reader think about the practical approach. For instance, there is a major division between those who think that children should only be taught to lip-read and that they should not follow the method known as "Signing" that has now been recognised as a separate language used by the deaf. She describes the different methods and also cites the case of three young adults who have coped with their hearing impairment in different ways. As one of them says, "Sign language, which I learned in University, is a more powerful tool than lip-reading and speech. It is very artistic - similar to mine - it uses several facial expressions. It gives us joy and the freedom to express our feelings." There is also a wealth of technical information in the book, about the correct type of hearing aid, about training a child using the equipment and of some of the reluctance her son faced in adjusting to one.

Quite apart from this, there are suggestions on how she dealt with the more existential problems that arose as Mahinda started growing up. When he was 10 years old, she had to find an answer to the question "My brothers can hear, I cannot hear, why?" She had to coax him to become a member of the Boy Scouts even though he was inclined to be shy and then at other times give him the confidence to be as free as possible in the company of strangers, who might not make allowance for his handicap.

\From one of his teachers, she had learnt "never allow a situation to arise where he will feel an outsider, a reject. Minimise such occasions as much as you possibly can and he will grow up to be a balanced, confident and independent person in his adult life".

With the help of his two younger brothers, Rajasuriya was able to make sure that Mahinda never felt left out, even if sometimes, as happens in the social life of a young child, parents might not want to include a hearing impaired child to an ordinary party. But of course, even the most caring of parents cannot protect a child forever and one of the most poignant episodes that Rajasuriya describes is what happens when they are forced to leave Mahinda alone with a family in England, so that he could continue with his primary school education, while his father had to move on to his next assignment. With each new posting, there are new choices to be made. Part of Rajasuriya's story is set in Chennai, where her son is in the delicate period of adolescence. Here too she gives a vivid picture of all the people who helped Mahinda in finding his vocation as a professional in the field of graphics and animation for television. One of them is a young art student, Preminda, who was able to infuse Mahinda's timid, early sketches with life, by urging him to add "imagination" to the still life pictures that he had copied from his photographs. It is a story with a happy ending as Mahinda finds an ideal life partner, when his parents are posted to China, and gets married to her.

Rajasuriya ends with a quotation from Satish Gujral's own book, A Brush With Life that hints at the fine balance that is also a part of the inheritance of a person with hearing difficulties; a sensitivity that can be both a hindrance or a special gift. It is her own highly tuned sensitivity to the needs of all those parents who have had to face the care and teaching of a hearing impaired child, that made her write the book, she says, first very diffidently and then with determination. As to the question on how to describe a person with hearing disability, she listens carefully to the arguments that now maintain, that even talking of an "impairment" suggests a defect, while "deaf" is a clear statement of a fact. "We were told in the United Kingdom never to use the term 'deaf'. There is something so final about it, so definite, that I do not like to use the term." But she smiles, when Mahinda describes himself in any official document. He puts down just one word, "Deaf." "It does not bother him at all."

GEETA DOCTOR

Beyond Those Walls Of Silence, A Real-Life Experience Of Helping The Deaf Speak, Lalini Rajasuriya, Amra Publishers, Distributed by EastWest Books (Madras) Pvt. Ltd., p.182, Rs. 180, $10.

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