What it’s like to be me


When my high school teacher told us that each page of the book he read last night shackled him, at least I did not believe him till I picked up ‘What it’s like to me’ during my stay at London. Each page would bind me with its sheer beauty of expression and power of words. This gem of a book is written and illustrated by disabled children across the world.

The book reveals many facets of the life led by disabled children and one experiences what it is like to be a disabled child. You share their sadness, not for being disabled but for your negative attitude, their positive approach towards life and also their uncommon wit and assertion for their rights.

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In the first few chapters itself, they make it very clear that they know what they are and don’t like pity and unnecessary stares.

                        Why do people take us for unhappy children?

                        for we are as happy as any other.

                                                                                    -Bertrand Stephane, 12

Children very vividly show their understanding through suffering.

I have been born with cerebral palsy, so really I do not know what it’s like to run and play like normal kids. But I am glad that I am alive, so I can show other people how lucky they are to be able to walk. And I truly believe that God made me this way because He knows I could live with disability.

                                                                                                                        -James Hanoski, 17

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Then you are stuck by their wit, ability to laugh at themselves.

Wearing a hearing aid, playing at football does not bother you. When it rains, it stops water getting into your ears.                                                                                                                                                                   -Stuart Laing, 10

 It is not nice being handicapped, but I’m not unhappy with my situation as I could have been born a chicken or a duck.                                                                                                                                                                     -Martin Styles, 10

 

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Children are also aware of their rights and assert themselves.

What I need from you is only my rights and not a lot of sympathy.

                                                                                     -Mutinda Kimilu,9

                        I don’t want your pity

                        And I don’t want your help

                       I just want a fair chance

                       And acceptance as myself

                      I know I’m not same as you

                                                         -Chrissie Chadwik

 Though they are children, they cannot be taken for a ride.

It’s not the handicapped people who need rehabilitation, but the rest of the world. Don’t pat on the head, offer help, talk to handicapped people out of pity. Talk to them because you like them. Otherwise, don’t bother.

                                                                                                                                -David Ruebain, 17

 

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Helen writes in the introduction that when she asked children to write about ‘What it’s like to me’ many of the children told her how they had spent the day or how they enjoyed music or sport. The last thing they were concerned about was the fact that they might have taken an hour or more to get dressed. The sort of thing – a straight forward physical disability – is just part of life. They accept it and want you to do the same.

Helen Exley, editor of this colourful and poignant book, found it “the most genuinely happy book I have ever edited”. She had several disabled friends in childhood, (later trained as a “speech and deaf therapist”) and edited the book while she had a serious illness and faced her own fears. The children and staff of over 100 schools and organizations from 27 countries contributed to this book.

The book is a gem. A must for one and all for the sheer sweet sour pleasure it provides.

-RKG

Review by others:

The children that have contributed to and essentially created this book speak from the heart. Not only have they learned to deal with their disability enough to be themselves and be honest with people. The overall attitude of the children’s’ writing is not always positive and at times speaks to the reader from a somewhat angry viewpoint. Even when angry, these children are never accusing or pleading for the help and pity of others. Instead, these children speak to us in a voice that attempts to communicate their hopes, dreams, aspirations and above a level of understanding on the part of ‘ordinary people’. Topics in this book deal with everything from deafness and blindness to dealing with feelings of scorn and isolation. These children also share some of their personal triumphs in an attempt to make others realize that they would rather be respected and accepted as human beings than pitied as disabled individuals.

 -Rebecca Morris

Smith College

“What It’s Like To Be Me” contains the comments of disabled children on what it’s like to be in a wheelchair or otherwise disabled. It was prepared during the International Year of the Disabled as a contribution by handicapped children. The book was designed so that these children could communicate with other children and with their parents and teachers.

Because I also am in a wheelchair, I can identify with the kids’ comments. Mostly they have the same attitudes that I have. They say that when they go to shopping centres people look at them as though they are from another planet. I think that’s true.

I can also identify with the remark of one contributor, who said “I can answer for myself”, because people tend to assume you can’t speak for yourself if you are in a wheelchair. I think if people read this book it will make them realize that we aren’t as different as they think we are.

The drawings in the book aren’t that great, but the written comments are very accurate.

Doctors will benefit from reading this book because it will give them an idea of how disabled children feel about themselves. I also think that the book should be introduced to grade 2 and 3 students so that they will understand disabled children better.

-PATRICK WOODS

Ottawa, Ont.

(Patrick Woods is a 15-year-old with Friedreich’s ataxia)

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