I Can't Walk But I Can Crawl: Living with Cerebral Palsy

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Joan Ross

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    Dedication

    This book is dedicated to my mother and my father.

    Lucky Duck

    Lucky Duck is more than a publishing house and training agency. George Robinson and Barbara Maines founded the company in the 1980s when they worked together as a head and as a psychologist, developing innovative strategies to support challenging students.

    They have an international reputation for their work on bullying, self-esteem, emotional literacy and many other subjects of interest to the world of education.

    George and Barbara have set up a regular news-spot on the website at

    http://www.luckyduck.co.uk/newsAndEvents/viewNewsItems and information about their training programmes can be found at www.insetdays.com

    More details about Lucky Duck can be found at http://www.luckyduck.co.uk/

    Visit the website for all our latest publications in our specialist topics

    • Emotional Literacy
    • Bullying
    • Circle Time
    • Asperger's Syndrome
    • Self-esteem
    • Positive Behaviour Management
    • Anger Management
    • Eating Disorders

    Acknowledgements

    I would like to thank the following:

    The City Lit. Humanities Department Holborn.

    Carol Burns, for her guidance in autobiographical writing.

    John Sawyer, for keeping my computer in good running order.

    Alex White at Scope, who prepared part one of my book for submission.

    Vicky Keeping and Fiona McGeever at Scope.

    Karol Joseph Pitra, for the lovely photographs.

    Rebecca Dee, who typed for me after I stopped using Dragon Dictate.

    Foreword

    This book describes the life, so far, of a woman who has cerebral palsy. Her humour, strength, determination and patience shine through her testimony throughout. She is not ‘brave’, she simply refuses to let a condition (that many people use as an excuse for prejudice) determine her life choices. Some of the choices that she may have liked to have pursued are denied her. Yet she creates so many more choices and lives her life as fully as possible.

    I had the pleasure of meeting Joan recently to discuss her book and make sure that she was happy with the edited version. When I first read the manuscript, it reminded me of being in the company of someone who was reminiscing in a very relaxed manner, maybe over a cup of tea and a slice of cake. Any attempts at changing or re-arranging this style would be so apparent, it would ruin the effect. With its relaxed style, it's an easy and absorbing read.

    So why should you read this book? It's important for others to know the truth about what it has been like to be disabled in the twentieth century. By highlighting her life story, Joan's autobiography also explores attitudes, and reveals where there may still be barriers to equality. Read it if you are a non-disabled person to be motivated by an incredible woman's fight to be counted. Read it if you are disabled and have felt the unfairness of many aspects of society, to see just how the system can be beaten. Read it for the fascinating social history. Read it if you want to experience a kind of lifestyle that you may never have considered before. Read it to be inspired.

    SarahLynch 2005

    Cerebral Palsy, Scope and Joan

    Cerebral palsy is not a disease or an illness. It is a physical condition that affects movement and communication. However, as Joan Ross's book proves, having cerebral palsy doesn't mean that you can't lead a full and rewarding life and achieve much more than doctors in the thirties and forties expected – and many people expect even today.

    As a member of Scope and Chair of the North London Cerebral Palsy Association, Joan came to us in the hope of finding a publisher. We had just published Can You Manage Stares?, the autobiography of Bill Hargreaves, an amazing man with cerebral palsy who helped found the charity and whose pioneering work transformed the lives of thousands of disabled people. I had to tell Joan that Bill's book had only been published thanks to a grant from the National Lottery and that it didn't seem that publishers were interested in disabled people's lives, however remarkable.

    As I write this preface to Joan's publishing debut, I'm glad that Lucky Duck has proved me wrong. Like Scope, Lucky Duck realises that stories like Joan and Bill's are important because they tell a wider public about what it is like to be disabled by society, what it is like to be written off when one is young and to struggle against other people's prejudices.

    As Bill relates, in the 1950s, people with cerebral palsy like Joan were almost invisible:

    The only cerebral palsied person I'd ever met in my life before was myself in the mirror, because there weren't any people with cerebral palsy in the streets. There weren't any at all. I saw one-legged men, I saw blind people, I saw people with hydrocephalus, this sort of thing, but no people with cerebral palsy. Why? Because their parents were ashamed of having their children – which was appalling.

    Although things have improved and disabled people today are more visible in society, disablism – prejudice against disabled people – is rife. We at Scope define disablism as:

    … discriminatory, oppressive or abusive behaviour arising from the belief that disabled people are inferior to others.

    Disablism is not a word that is recognised by the Oxford English Dictionary, but if you a disabled person you know that it exists; you encounter it every day. That's why Scope has launched the Time to Get Equal campaign to banish disablism from our society.

    Once you have read Joan's book, I am sure that you will feel moved to join the campaign and help us to change people's attitudes! If you do, please go to http://www.timetogetequal.org.uk and lend us your support.

    My conversation with Joan prompted me to approach the Heritage Lottery Fund to help Scope to uncover even more life stories of disabled people. Once we received our funding, I was very glad that Joan agreed to take part in this project, called Speaking for Ourselves, which will result in an Archive Hour radio documentary on Radio Four as well as a teaching pack for secondary schools in 2006. You can find out more via the website at http://www.speakingforourselves.org.uk as well as via The British Library Sound Archive (collection reference: C1134).

    Joan is an ordinary person like you and I but she has faced extraordinary barriers to living a normal life. She was born in 1939 at a time of very little public awareness of the problems facing children with cerebral palsy. Parents were routinely told by doctors to have another baby and put their children with cerebral palsy in institutions.

    Until the formation of Scope (then called The National Spastics Society) in 1952 and for some time after, children with cerebral palsy were regarded by the medical profession as ‘ineducable’. Unusually for the time, Joan was offered a place at a local infant school. For many of her disabled peers, education in a local school, alongside friends and siblings, was a distant dream. The only school for children with cerebral palsy, St Margaret's in Croydon, could accommodate only a very limited number of children, but parents throughout the country applied for places, and a waiting list of 200 was quickly established, so great was the need.

    Among the first pupils at St Margaret's were Rosemary, daughter of Ian Dawson-Shepherd, Susan, daughter of Eric Hodgson, and Alice, daughter of Alex Moira. Their parents were becoming increasingly concerned and frustrated at the lack of forward thinking, as there was no secondary education for children with cerebral palsy.

    Together with the social worker, Jean Garwood, the parents met on 9 October 1951 at Eric Hodgson's isolated home at Long Lane, Croydon to discuss the creation of a grammar school for their children. This is how Scope historian Bill Elliott relates how the first meeting went:

    Their first argument centred on the proposed name for the new organisation. The chairman opted for a name with ‘Spastics’ in it, but the secretary and the treasurer who both disliked the word, wanted ‘cerebral palsy’.

    The Advisor agreed because, she said, “It was the proper medical term.” The argument went back and forth until Ian Dawson-Shepherd ventured that they should call themselves the National Spastics Society, which, ultimately, was agreed by all. How could they call the society National when in fact they were but a group of four people, lacking funds, sitting round a fire in a suburban house in Croydon? How could they begin their campaign without money? When no ideas were forthcoming, Ian Dawson-Shepherd, in a pseudo-dramatic gesture, pulled out a £5 note from his pocket and slapped it onto the table, saying, “There's the start.” It would be nice to record that at that solemn moment they all stood up and shook hands, their eyes shining with hope – but they didn't. Eric laughed cynically, “A fiver won't get us very far.” “All right then,” Ian retorted, “I'll make you a million pounds in five years.” “Don't talk bloody daft, Ian,” said Eric with pity.

    Shortly afterwards, Ian Dawson-Shepherd wrote to the Daily Mirror, who agreed to publish his letter:

    A new and powerful society has been formed to press, argue and fight to get better treatment for spastic sufferers. Would you ask all sufferers or their relatives to write to the National Spastics Society at the above address and start helping the Society.

    Within a few days the Daily Mirror had received more than 300 replies from parents, a good response for a hitherto unknown subject. The group was impressed, which was to lead later to greater co-operation with the paper. In the meantime, it gave Eric the names of 300 parents to whom he could write and suggest that they each form a local parents' group.

    The inaugural meeting of the National Spastics Society was held at The Ambassadors Hotel, Southampton Row, London WC1 on 5 January 1952. From this modest start, the charity grew rapidly.

    AlexWhite, Scope

    Scope's Mission

    Scope's mission is to drive the change to make our society the first where disabled people achieve full equality.

    Our goals are that:

    disablism is banished

    all disabled people of all ages and their families enjoy their full and equal human and civil rights

    all disabled people are able to exercise full personal choice and control over their own lives.

    We will achieve this by:

    being led by the views and lived experience of disabled people

    valuing and listening to disabled families

    working in alliance with disabled people and their organisations

    using all our passion, professionalism, energy and resources.

    In so doing we will support people with cerebral palsy, and their families, at all stages of their lives, including:

    through a commitment to universal independent advocacy

    by achieving excellence in our understanding and knowledge of the condition and related impairments

    whilst fundamentally changing society so that people with cerebral palsy, and other conditions, can achieve their full potential and enjoy equality.

    To find out more about Scope, go to http://www.scope.org.uk

  • Epilogue

    The baby whose parents were told she might grow up not recognising her parents didn't do so badly after all. Although I wasn't allowed to fulfil my ambition to become a teacher, I was privileged with countless opportunities to work with children.

    My life-story is like a tapestry where everything fits together for a purpose. Each experience taught me something and prepared me for something bigger. Having to overcome difficult situations made me a stronger person. I never felt alone in my struggles as I always sensed God's presence guiding me. He kept His promise by not giving me anything too difficult to bear, without the strength and support to overcome it.

    I have met some wonderful, caring people during my life. They were always the right people who met my special needs in difficult times. I believe that God doesn't just use Christians to do His work. All kinds of people are used to fulfil His purpose.

    I regard my parents as being remarkable in recognising my potential even as a baby. My mother disregarded the doctor's prognosis of severe brain damage. She searched out the best treatment for me and insisted that I should be educated. Her determination to allow me the freedom to live life to the full was infectious, encouraging others to assist me in the same way.

    I value those friends with physical disabilities who taught me so much. Sylvia, my childhood friend married Tom who had a disability. They have a daughter and are extremely proud of their grandson, Bradley. Life hasn't been easy for them. Sylvia is fighting hard to remain independent, despite health problems related to age. The couple lived close to Sylvia's parents, and cared for them as they aged. Tom runs a social club in Enfield, and they both do charity work.

    Janet moved to Cambridge with her parents about fifteen years ago. We stopped going on holidays together because of Janet's failing health. She comes to stay with me for weekends several times a year. She borrows my scooter so she can browse around the shops in Crouch End. I miss our holidays together but was fortunate to find the Winged Fellowship Trust's group holiday schemes that helped me to travel mostly abroad.

    In 1991, the year Mum died, my sister Margaret gained a BSc Honours degree in New Technology as a mature student, and moved house. Sadly our parents were too ill to appreciate Margaret's achievements. Earlier on they would have been so proud of her. She went on to teach Business Studies at Hackney Community College.

    Auntie Madge and Uncle Karol retired and moved to Holyhead. Uncle Karol lived to be ninety. Auntie became ill with dementia a few years after my father died. Once again Margaret and I were involved in a serious family illness. For a year Margaret had to travel to Wales every month, taking full responsibility for our aunt's affairs until she died. It was a horrible time for her.

    It's ironic that, as a young girl, I was considered too disabled to do the things I longed to do. Attitudes changed when my parents needed my care, and my severe disability was disregarded. Yet, being a carer enabled me to empathise with other carers in my work as an Advice Officer, and they and others appreciated this. In 1999 I was made redundant nine months before I would have retired. The Management Committee, persuaded that financial cuts were necessary, disbanded the advice service. It wasn't a coincidence that the manager, Steve, who'd succeeded Margaret Riley, had asked me three weeks prior to this to exchange offices with him. Although I sympathised with his poor working conditions, I'd refused because his office was too small to hold interviews with people in wheelchairs, their carers and often an interpreter. The office had no natural daylight and overlooked a busy railway track with noisy trains. The thin partitioned walls offered little privacy for dealing with distressed people and confidential matters.

    I felt Steve had little regard for my advice work. He wasn't interested in my statistics. Given my redundancy notice, I was told of plans to place specialist advisers on disability at advice bureaux in the borough, but it never happened. At the time, I had thirty complex cases on my list and had to call people in to return their files.

    ‘We don't want to queue up for hours at an advice bureau,’ they said. ‘Please can we visit you at home?’ Sadly, this wasn't possible.

    In the year I left work, Peter, my brother-in-law, found out that he had lung cancer. It was devastating news. He'd never smoked. The chemicals he'd used when he first worked as a graphic artist were a likely cause. He bravely fought his illness for three cruel years. Although hardly mentioned in my story, he was like a brother to me. He was so kind and gentle, and always supported all my adventures. He often had me in fits of laughter and I miss him very much.

    To be born with impairment or to be struck down by illness is a tragedy. People deal with it in different ways. There are many examples of how people turn things around and make good of their plight. I've been asked many times how having a disability affects me. Would I like to be normal? It would feel a little strange. I mostly accept my disability as a challenge. It's the hostile environment and attitudes of others that disables me.

    Two things happened that jolted me into realising, unconsciously, that I didn't want to be disabled. A few years ago, I attended a friend's funeral. Peter had been very disabled. He'd died suddenly, and it was very sad. During the funeral service, a thought came to me: ‘Peter isn't disabled anymore, he has a new body and a new life!’ I felt excited and happy for him. It surprised me that I was harbouring such a deep-rooted resentment of disability.

    Recently, I've been profoundly moved by a very clear image of a baby in a womb. The baby moves around, using her limbs normally. I was looking at myself as a normal baby before I was born. It was a very emotional experience.

    Now I have a second disability: osteoarthritis. It's given me a whole new experience of inactivity because of severe pain in my arms, shoulders and neck. I have always been grateful cerebral palsy wasn't painful, apart from the occasional muscle sprain. I can handle cerebral palsy much better than arthritis. In the past, there was always a way of overcoming physical difficulties. I taught myself easier and different ways of doing things. But it doesn't work like that with arthritis. Pain is now the master of my life. Either I give into it, and cut down on my activities, or I defy it and insist on doing my normal activities or at least some of them. This results in increased pain and tiredness. Hopefully, shoulder replacement surgery will be able to reduce the severe pain.

    I shall never be able to do some of the activities I learnt to do with so much pleasure in the past. However, it doesn't matter as I don't have to prove myself anymore. I enjoy thinking back on my achievements, and say from the bottom of my heart:

    ‘Praise to God for the abundant life He has given me.’

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