Nothing Is Impossible
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Nothing Is Impossible Adventures in cerebral palsy By Neil McLeod www.thespasticcentre.com.au © The Spastic Centre, 2007 From an unpublished manuscript, 1986 Our gratitude to Jan Bradbury for her work in the preparation of this book. Cover photograph: Image from early brochure of The Spastic Centre ISBN 1876564091 The Spastic Centre 189 Allambie Road Allambie Heights NSW 2100 T 02 9451 9022 F 02 9451 4877 E [email protected] W www.thespasticcentre.com.au 2 Foreword This is the story of two unique people, Audrie and Neil McLeod, who struggled against the prevailing beliefs of a particular time in Australian history to find causes and solutions for cerebral palsy. It documents the growth of an organisation that would provide the template for so many families also facing the issues resulting from the disabilities of their children. It shows what can happen when the community understands and responds to a call for justice for some of its most vulnerable members. The Spastic Centre of New South Wales could never have come into existence without the collective power of parents who challenged the status quo which treated them as victims and who were determined that the needs of their child would not be dismissed nor neglected. It is also an Australian expression of the story of mateship, of a ‘fair go’, of people supporting and nurturing each other, of community development, of conflict, turbulence and change. This is the story of my family – particularly my sister, Jennifer, who started my parents on their life pathways. Robin Way 2006 Acknowledgement The first version of this book was published by the Simul Press in Japan in 1994 as a consequence of the deep and enduring ties formed between The Spastic Centre of NSW and the McLeod Society of Japan, in particular the late Mr Takeo Noda, Dr Takahashi, and Professor Ohtsuka. We are indebted to Professors Toshihisa Nagasaka and Hideo Suzuki, their families and Mrs Rie Amijima for their assistance in ensuring that this work is available to a wider audience. 3 A Message from the Board of The Spastic Centre of New South Wales It is said that the most just, noble and honourable visions are often unattainable because of the littleness of those who strive to achieve them. Even emperors and kings cannot do it alone. But it is with shared purpose, common spirit, collaborative doing and the power of collective thinking that such visions have been realised. And so it is with The Spastic Centre of New South Wales. Neil McLeod’s personal account of the growth of a remarkable organisation not only traces an important and salient history but as well, instructs those of us today to continue going forward, challenging the new horizons’ boundless goals. It was my privilege to hear Neil McLeod speak of the most critical ingredient in all human endeavour – the giving of something of ourselves. That giving, begun by Neil McLeod and his wife Audrie on behalf of Australia’s children and adults with cerebral palsy and their families was, and remains, the precious gift of opportunity. The Spastic Centre is proud to publish Neil McLeod’s valuable work, ‘Nothing is Impossible’. Marelle Thornton AM President PLEASE NOTE: The language used in this book is a reflection of the era in which it was written, i.e. the period between 1945 and 1986. To preserve the provenance of this rich history, the manuscript has been reproduced with minimal editing. 4 Dedication This Presentation was made to The Board of Directors, The Spastic Centre of New South Wales on behalf of all the antecedent members of the Board who, over the years, supported us loyally in pursuit of our objectives ~ to raise the level of our cerebral palsied children as far as possible in education ~ medicine ~ engineering ~ social awareness. To mark the occasion of my retirement from The Spastic Centre of New South Wales after forty-two years of service and my 77th birthday on the eighth day of July, 1986. Neil McLeod 5 6 Contents Foreword 3 Dedication 5 Preface 8 Introduction 10 PART ONE : THE PROBLEM 11 1 In the beginning 13 2 Childhood is something precious 35 PART TWO : THE HYPOTHESIS 39 3 Facilities at Mosman 41 4 Medical 73 5 Splints and braces 79 6 Education 91 7 Country Children’s Hostel 99 8 Jenny takes up the story 117 PART THREE : THE SOLUTION – CHILDREN 129 9 Medical development 131 10 Speech 143 11 Education – Allambie School 153 PART FOUR : THE SOLUTION – ADULTS 165 12 Centre Industries establishment 167 13 Centre Industries operations 179 14 Advanced education 231 15 Neurophysiology 237 16 Japan takes up the challenge 251 17 Venee Burges Hostel 267 18 Jenny continues her story 277 PART FIVE : CONCLUSION 291 19 If you can’t beat them, join them! 293 20 Summary 301 21 Epilogue 305 Audrie McLeod’s Diary to Jennifer 310 LIST OF ILLUSTRATIONS 314 INDEX 317 7 Preface In 1970, the Committee of International Geographical Year launched a transcontinental survey of Antarctica. It involved a coast to coast journey of over four thousand kilometres of relatively unexplored country. Two teams were involved and they battled their way through high winds and temperatures ranging to seventy degrees minus. The actual journey took them four months, but preparations involved two years and millions of dollars. The men in the field were beset with unimaginable difficulties – snow bridges which collapsed over unplumbed crevasses involving the constant threat of loss of life, to say nothing of the physical risks inherent in a journey through the trackless wastes, when blizzards and whiteouts meant instant obliteration, in the primordial environment of Antarctica. Who are the men responsible for such a project? Are they scientific workers interested in measurement, or explorers filling in a forgotten corner of the world’s environment? Or is it perhaps, a lifestyle or sport like mountaineering which depends on checking the forces against you in climate, physical and psychological endurance, where the hazards you encounter are matched against the courage and determination which you can muster? We can but wonder! This book describes a journey of a different kind. It is a journey that started in the mid-thirties, and the end is not yet in sight. But it serves as an enduring model for the hazardous journey we have described above. The people who accompanied me on this expedition had to put up with hardships that were far worse, because they persisted throughout the whole of their lifetime. They had no scientific knowledge to point the way. Their mountain peaks were not named, there was no map. Instead of snow-filled icy crevasses they had to contend with neurophysiological barriers of an entirely different sort, but just as difficult to surmount. For those who made this journey I commend this book. The rare courage, the determination of them all, guided us through the forty years of strife-torn wandering. I dedicate this book with admiration, to the children of The Spastic Centre of New South Wales and the adults of Centre Industries. This is their life’s journey. 8 Part One The Problem Life is no brief candle to me, it is a splendid torch which I hold for the moment, and I want to make it burn brightly as possible before handing it on to future generations. G.B.S. The purpose of this book is to show that the Cerebral Palsied child can be educated. That the Cerebral Palsied adult is capable of more constructive production far beyond the present levels demanded of him. 11 12 In the Beginning 1938 Jennifer, my daughter, was born on the ninth of August 1938, in Perth, West Australia, and as is common with any first child, we fussed about her. We, her parents, were very young, very inexperienced and very much in love, and the world was ours alone. We were just climbing out of the Great Economic Depression and we had little money, but my job prospects were good. When the storm clouds gathered with the birth of Jennifer Gay, we did not know for some months what they portended. We did not know from that day onwards, for the next forty years, our lives would violently change their direction. Apart from feeding difficulties, Jennifer’s head was still floppy at the age of six months, but her attending doctor did not seem concerned. My wife Audrie, with a mother’s primeval instinct, was alerted, but she suppressed her feelings, thinking that as a first mother she had no knowledge of the behaviour of babies and their ways, and was prepared to accept the advice of the nurses of the Mothercraft Clinic. For my part, I was enthralled with the unexpected delights of fatherhood, and followed each stage of Jennifer’s development with loving wonder. We had difficulty in explaining her condition to our relatives and friends, and the doctors I referred to were no help at all. It was wartime; our local doctor was called up for military service and he sailed for the Middle East without keeping a final appointment. We wrote to him and after some months he wrote back, apologising for the delay and explaining in lay terms the medical history of Jenny, but giving us hope that Jennifer would grow out of her condition. At eleven months Jenny was examined by a specialist pediatrician who had not seen her before, and for the first time we heard the words ‘spastic paralysis’. This was a shock to us. To a lay person the word ‘paralysed’ had a special connotation. Jennifer was alert and intelligent, but it was true that her head bobbed around like a newborn baby’s.