The Four Walls of My Freedom

by Donna Thomson

  Copyright © 2010 Donna Thomson

  “Where Are We Now?” © 2014 Donna Thomson

  All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or any information storage and retrieval system, without permission in writing from the publisher.

  Distribution of this electronic edition via the Internet or any other means without the permission of the publisher is illegal. Please do not participate in electronic piracy of copyrighted material; purchase only authorized electronic editions. We appreciate your support of the author’s rights.

  First published in Canada in 2010 by McArthur & Company

  This edition published in 2014 by

  House of Anansi Press Inc.

  110 Spadina Avenue, Suite 801

  Toronto, ON, M5V 2K4

  Tel. 416-363-4343

  Fax 416-363-1017

  www.houseofanansi.com

  Permission is gratefully acknowledged to reprint the following:

  “You’ll Never Walk Alone” by Richard Rodgers & Oscar Hammerstein II © 1945 Williamson Music. Copyright renewed. International copyright secured. All rights reserved. Used by permission of Williamson Music, a division of The Rodgers & Hammerstein Organization, an Imagem Company.

  “Welcome to Holland” © Emily Perl Kingsley is reprinted by kind permission of the author.

  The Idea of Justice by Amartya Sen, Cambridge, Mass.: The Belknap Press of Harvard University Press. Copyright © 2009 Amartya Sen.

  LIBRARY AND ARCHIVES CANADA CATALOGUING IN PUBLICATION

  Thomson, Donna, 1955–, author

  The four walls of my freedom / Donna Thomson.

  Issued in print and electronic formats.

  ISBN 978-1-77089-479-2 (pbk.). ISBN 978-1-77089-480-8 (epub).

  1. Thomson, Donna, 1955–. 2. Thomson, Donna, 1955– —Family. 3. Mothers of children

  with disabilities—Canada—Biography. 4. Cerebral palsy—Family relationships—Canada.

  5. Cerebral palsy—Canada—Biography. I. Title.

  HQ759.913.T482 2014 649’.151 C2013-906986-0 C2013-906987-9

  Library of Congress Control Number: 2013918883

  Cover design: Alysia Shewchuk (adapted from the hardcover by Tania Craan)

  We acknowledge for their financial support of our publishing program the Canada Council for the Arts, the Ontario Arts Council, and the Government of Canada through the Canada Book Fund.

  To my family

  FOREWORD

  This is a book that had to be written. It had to be written for two reasons. The first is to explain the world of people with disabilities. They have rights and needs that must be looked at by all of us from a philosophical view and a policy point of view. Secondly, this book had to be written because it tells the story of Nicholas and his family, Donna, Jim, and Natalie. This story needed to be told for Nicholas’ sake. He has something to say to us, as does his family.

  It is essential to put these two things together — the ideas surrounding the world of disabilities and the reality lived by those with disabilities and their families. It all makes sense if these two elements are put together. It makes sense because it forces us to realize that Nicholas is a citizen with citizen’s rights, and none of the services he receives are the result of the kindness of the rest of us. The services he should and must receive have nothing to do with charity. They should come to him as any service comes to a citizen. And that is as it should be in a fully functioning civilization where we make the effort to imagine the Other. Donna Thomson has done a wonderful job at blending these two themes together. And so The Four Walls of My Freedom is an eloquent expression of both personal lives and public philosophy.

  I first met Donna at Government House in Ottawa a decade ago. We talked about her involvement with PLAN, a wonderful organization that has developed whole new approaches towards the linking of citizenship and people with disabilities. She asked me if I would become the Patron of PLAN and I immediately agreed. The simplest explanation for my enthusiasm is that my brother Anthony had disabilities. And he had them at a time when Canada had virtually no decent public services for him. Canada treated the whole question of disabilities as one of charity. He was a wonderful brother. And my mother, like mothers almost everywhere, had to fight the system to ensure that he was treated properly — as a citizen. We have come a long way in Canada and in other democracies when it comes to disabilities. Our civilization has evolved in the right direction. But Donna’s story is a reminder that we have not gone far enough and we certainly haven’t gone fast enough.

  I think what she brings to the table is a very clear evocation of the contributions that people with disabilities make to our society. They want to make every contribution they can. And they have to make a greater effort than most people in order to carry out those contributions. That energy and courage and consciousness of people with disabilities carries a strong lesson for their fellow citizens who, quite frankly, have an easy time of it in comparison.

  One of the themes that keeps coming through in Donna’s writing is that every time a circle is created to ensure that there are contacts and friendship around a person with disabilities, the people who join the circle quickly realize that they are the primary beneficiaries.

  This is a moving book, in part because it is about Nicholas, but also because it is about all of us and our capacity to live together. If we can embrace the citizenship of people with disabilities, then we will all learn how to live together.

  John Ralston Saul

  Toronto, July 2010

  CHAPTER ONE

  The Beginning

  The baby book said to rock a crying infant at the same rate as a mother’s heart rate. Anywhere between 60 and 100 beats per minute it said. I split the difference and tried 80 beats per minute which is VERY fast, if you have never tried it. Not rocking really, just an oscillating pressure on the ball of one foot if one’s legs are crossed.

  But my baby son kept crying and crying, once for thirty-seven hours in a row. His back arched, his high-pitched catlike screams would pierce the night. I rocked and sang Christmas carols to the time of 80 beats per minute. Keeping my arms relaxed was tricky. I thought if I could just relax the arms that held him, my baby would sink limply and quietly into sleep.

  “Who knows what makes the little turkeys cry?” mused the doctor a little too quickly when I reported that perhaps my baby was crying much more than he should. “Change the formula.” At a new mother’s group, I noticed that other babies weren’t screaming. There was coffee on offer and I took a muffin as well. Nick screeched, arched his back and the coffee spilt, the muffin broke on the floor. The group leader stared in horror and all the mothers and babies blinked in alarm. “We don’t belong here,” I thought, and ran out, leaving the mess on the floor. After that, I kept indoors. The blinds were closed because light seemed to infuriate Nicholas. We kept our voices to whispers because an exclamation or laugh caused his arms and legs to flail outwards suddenly, setting off some horror only he knew. I kept him swaddled so he wouldn’t feel like his legs and arms would fly off his body in these moments of panic.

  I couldn’t persuade Nicholas’ mouth into an effective suck. Why couldn’t he swallow without choking? His nappy remained dry for a day and the baby book said “take him to the hospital.” The check-in clerk in Emergency at the Ottawa Children’s Hospital asked Nick’s age. “One month,” I replied. My turn to choke.

  The white-haired doctor stooped to look closely at Nicholas and asked, “Has anyone spoken to you about your son’s develo
pment?”

  “No,” I answered, “he is small because he was a bit premature at thirty-three weeks. Someone crashed into the back of my car at twenty-six weeks and they think that’s why he was born early.” Only later I learned that “development” meant cerebral palsy or mental retardation.

  Three months later, Nicholas was admitted to hospital so that tests could be performed. The doctor asked me if I would like to hear the results. I nodded. She closed the ward playroom door for privacy. We were alone. She, in her lab coat, was sitting in a sturdy mother’s wooden rocker. I was squeezed into a plastic child’s chair. Around us lay discarded toys and empty chunky bright tables and chairs, all toddler-sized. Tears glistened on the doctor’s cheeks as she told me my baby was severely disabled. “Never be normal” are the words I remember. I also remember “generalized cerebral atrophy.” Pea brain, I wondered?

  “Esophageal reflux,” she said. “Nothing to keep food down where it belongs. Common in cerebral palsy. Pain similar to heart attack.” There were blue stripes on her blouse. I looked down and something red caught my eye. Blood was oozing from the edge of my thumbnail where I had bitten it. “Well, I’m in the right place,” I thought.

  I stood up and felt a lightness, a sense of relief and purpose. “Now I will be able to feed my child,” I thought. “I will become an expert. I will apply myself to becoming a great mother, and my baby will grow into someone perfectly perfect.” Passing the desk, I noticed the nurses half turned, whispering, their pitying eyes fixed on us. I scooped up Nicholas, deposited him into a pram and paraded up and down the hospital halls, back straight, eyes fixed directly ahead. But I was not all right. I wrote in our baby book: “February 22–25, 1989: Nick admitted to hospital. Cat scan, PH probe and digestive barium x-rays all abnormal — we trying [sic] to absorb this terrible news.”

  I remember hearing a radio news report a long time ago about a terrible road accident in rural England. A young family — parents and three children — had all perished. The grandfather’s public response was, “I don’t understand — we brought them up so carefully so nothing like this would ever happen.” I felt like this grandfather — the experience of falling victim to random tragedy and a serious derailment of one’s life plans caused such profound shock and questioning of all I believed was solid and true.

  At that time, my husband, Jim, was on loan from Foreign Affairs to the Prime Minister’s Office and would come home near bedtime, still suited, to feed Nicholas while watching the news. Word spread in our family about the “condition.” A cousin came over with a friend to give advice. The friend’s business card read “Volunteer Consultant to Families with a Child with a Disability.” Her name was Kathleen Jordan and she had a son of sixteen with incomprehensible difficulties. He was blind, had cerebral palsy, Tourette syndrome and epilepsy. I started to examine this blonde woman in my living room. Her nails were beautiful, glossy red and perfectly rounded. I asked, “How is it you have time to do your nails?” I really wanted to know.

  Kathleen had a huge pile of papers with her. She patted me and said, “I have some information here, but I completely understand if you want to look at it some other time.” “No!” I cried, “Give them to me now! All of it.” Years later, I heard the expression “cognitive lifeboat.” In that moment, I found mine, and, gasping, climbed aboard.

  Sometimes, words on a page leap out and punch you in the face. Wake up! This is what you need to know! In that pile of paper was a story about something called “Conductive Education.” First of all, I like the word education. It suggests a capacity for learning. It suggests power and control through knowledge.

  Andras Peto was a Hungarian and a practical innovator. He looked at the state education system of his country, saw that walking was a prerequisite of accessing the national curriculum, looked at the thousands of bright children who did not walk because of disability and decided to think of a way around the problem. Peto devised a system of teaching children with cerebral palsy and adults who had had a stroke how to control their own bodies. He believed that each functional, bodily movement could be broken down into smaller movements that could be taught and practised, using rhythm as the primary teaching tool. People with no functional movement could be taught to brush their own teeth, sit independently, and even walk through the school doors. This was an approach that required hope and determination. “Right,” I thought, “this is for us.”

  A speech therapist advised that Nicholas could suck and swallow if he was fed sitting upright. I had discovered Conductive Education. Nicholas smiled. The screaming continued, but in between, oh the power of those smiles! I nicknamed him “Bunnybear” as a nod to his Jekyll and Hyde personality. For his first birthday, I made two cakes: one a bunny, the other a bear. Jim and I drank champagne and congratulated ourselves on surviving.

  The local treatment centre for children with disabilities made us sign a paper promising not to pursue alternative therapies. I signed. Then I hired a private Conductive Education specialist, Rosalind, who had trained in England, and came for our first home appointment. “Look at the window, look at the door. Look at the ceiling, look at the floor,” she sang as she held Nicholas on her knee. My mother was visiting. As Rosalind sang, Nicholas looked around, up and down. My mother clapped her hands. Nicholas startled, screamed, and I hugged Rosalind.

  Another woman called Barbara came to our house once a week to help me teach Nicholas something called infant stimulation. She suggested that I use a photo album with large magazine pictures or photographs of things he knew something about — things like “Mum,” “dog,” “flower.” Barbara walked with me to the park down the street on a sunny, warm day. She instructed me to let Nicholas lie in the grass on his back and then gently turn him on his side. His mouth opened and he began to chew on several blades of grass. “Terrific!” Barbara proclaimed. “Now let’s do some tree bark.” She reassured me that none of these natural items could kill Nick and encouraged me to make the most of our dog Amanda in the stimulation regime. Amanda was a golden retriever with a strong mothering instinct — sometimes, I thought, stronger than mine. Nicholas would lie on a blanket on the floor with Amanda lying alongside, her head resting on his belly. Nicholas would open and close his tiny fists in her fur and suddenly, fist clenched, he would pull hard, unable to let go. Amanda would simply turn to look at this spot on her back where a clump of fur was being yanked with appalling strength. Then her mouth would reach his fist. She licked his fist until it relaxed and opened. She would jump up and run to me, tail wagging, eyes watery. She would bury her head between my legs and I’d say, “I’m sorry, darling. But you are such a good mum to Nick, so gentle. Good girl.”

  “You should write a book,” people said. No, I thought, why should anyone care about a family such as ours? We are so different, such an aberration. Like anyone who has tried to protect the integrity of a loved one with a nasty chronic condition, my life with Nicholas has been infused with a desperate love. There have been days with lots of laughter, but there have also been days when Nick was in terrible pain or was unable to eat or drink, his stomach angrily rejecting its role as a digestive organ.

  What happened to him? Why is he like that? Did you smoke? Did you drink? How about the hair dye you used? Maybe you were too old to have babies. It must have been something you did. He’s underweight. What are you feeding him? Can’t you feed him more? Can’t you stop him arching backwards like that? Don’t let him roll over in that position. I know that mothers with their first babies can feel incompetent and sometimes depressed. I felt assaulted by fear. I knew for a fact that every professional was judging me, every relative, every neighbour. Maybe even God was judging me.

  When Nicholas was about one year old, I decided to have him baptized. Brought up as a Catholic, I had not been to church in years. Jim is an Anglican who spent his Sunday mornings immersed in newspapers, coffee in hand. I have often thought of my Catholic roots as like those of my grey
hair. No matter how much dye you apply, those roots keep growing back. I worried about Nicholas dying before being baptized. I had read that the Church had officially discarded Limbo as a concept, but what if they were wrong? I found a nearby Catholic church in the Yellow Pages and made an appointment for a home visit with the priest. I nervously set out the tea with favourite cups belonging to my grandmother. A distinguished, outdoorsy-looking gentleman with a thick shock of steely grey hair and wearing all-weather gear arrived at my door. I ushered Father Laurie in and explained the lapse in my lapsed Catholic status. Feeling childish, guilty and frightened, I asked him if he would baptize Nicholas. He took the porcelain blue and white cup in his large, sunburnt hand and lifted it to take a sip of tea. The saucer, stuck with sugary tea to the cup, suddenly clattered on to the glass tabletop and shattered. Father Laurie swept up the broken pieces with his hands as he promised to christen Nick. I might be condemned, but Nicholas would be redeemed.

  On June 11, 1989, Nicholas was baptized. The mass that day had a children’s choir marching down the centre aisle singing and waving a banner that read “We all belong.”

  “Hmmm,” I realized, “I love this! They CAN’T kick us out!” I circulated a celebratory photograph to the family showing Nicholas munching on the baptismal order of service. I called it “Nicholas trying to digest organized religion.”

  By that time, Nick and I were already regulars at the local rehabilitation centre where we attended physio, occupational and speech therapies every week. The speech therapist was a kind, enthusiastic woman from New Jersey. I joked with her that when Nicholas learned to talk, he’d be taken for a Yank. In her small white room, she placed a doll on Nick’s wheelchair tray and asked him to choose a piece of clothing for her to wear. Nick stared at the ceiling. She asked me if I was using bubbles with him at home. “Bubbles?” I asked. “Um, no. Sorry.”