The Eighteen Point Five: 18.5% of Australians live with a disability. We are 25 of them and share our stories.

By John Duthie

Why are biographies only written about famous people? We all have a story in us. In The Eighteen Point Five, twenty-five people share their personal and honest experiences of living with disabilities and disorders.

Our stories may shift your thinking and clear up misconceptions. Our contributors hope to encourage readers living

• Language: English
• Publisher: Eighteen Point Five Pty Ltd
• Release date: Sep 18, 2020
• ISBN: 9780648903710

Book preview

ONE

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Portrait of An Author

(or My Life in Words)

by John Rynn and Judith Buckingham

I WAKE FROM NO DREAMS TO A DAY OF DREAMS.

It’s not Christmas, not my birthday. Those come every year. This is special.

A soft knock from outside. A mop of grey hair around the door: my carer.

‘Today’s the day, John. Excited?’

What do you think? If I could, I would be dancing around the room.

Beside me on my bedside table lies a book, an advance copy of You Only Want Me For My Mind, and Other Bedtime Stories, by John Rynn¹. So far it has only been read by me, my family and close friends. Today … my story, my book, is going to be launched into the world. I am now a published author.

Most writers who complete a book never get published.

Most writers who publish do not get worldwide distribution. Most writers do not have athetoid quadriplegia - a form of cerebral palsy characterised by abnormal, involuntary movement which, in my case, allows me only limited use of one hand.

I have never really been able to speak - just a few syllables before I was two (‘mum’, ‘car’), but nothing after that. I have never been able to pick up a pen or a pencil. Yet words are my life, my passion. Words, especially written words, have become my bridge to the rest of the world.

As a child, I boarded at Harold Crawford House, the centre for Queensland’s Spastic Welfare League in Brisbane, and attended New Farm State School for Spastic Children. I was homesick, of course, but twice a week Mum and Dad wrote letters to me … letters rich with details of the life and home I had left behind in Bowen, Queensland, where I had spent my first five years. Those letters told me what mischief my brothers were up to, what Gran was doing, what the neighbours said, and even how the ocean looked. Wonderful words that made me feel as if I had actually been with them as they took part in these day-to-day activities. These were the first important written words I encountered and still treasure.

When I was six, my brother David was born, and my parents made one of their visits to introduce him to me. Mum, the baby and my other brother were outside, but one of the nurses, with a conspiratorial grin, beckoned to Dad to follow her. She pushed me up to my desk in the classroom and positioned the electric typewriter, which had been fitted with a large keying plate to guide my fingers, right in front of me. Dad looked at me, then at the nurse, and smiled benignly. He so obviously was not expecting me to do much more than punch a few random keys and was already starting to make ‘I’m proud of you’ noises before I had done anything.

I was tense: so tense, my athetoid spasms cut in. But then, drawing on all of my determination and with an enormous effort, I pushed against the imprisoning spasm and my hand smashed onto the keyboard. Dad leant down, his head close to my hand, and looked up at me.

Slowly and cautiously, I punched down on the first key, then a second and then a third. Then I sat upright, pleased and proud. Dad’s mouth dropped open and then shut – and then dropped open once more, without releasing a single sound. Before his eyes, the letters ‘d’ ‘a’ ‘d’ had been spelt out on the blank sheet of paper. It was the first time that his spastic son had communicated directly with him. We sat there in silence, our eyes gazing at the paper, then turning to stare into each other’s eyes, and then looking back at that simple but profound word for a long time.

A powerful and unstoppable feeling rose up inside me. I could write words that were entirely my work. No one could stop me or take the sense of independence and triumph from me.

Cerebral palsy is no joke. As I say in my book, it is a ringside ticket to a lifetime of watching yourself deteriorate. But sometimes there are compensations.

For instance, when I was about nine, I had to undergo a gruelling operation on my brain which, although the athetoid spasms remained, gave me some more voluntary use of my left hand.

After ten days I had recovered and come back to school. I had no idea what was waiting for me. As usual, one of the nurses, Sister Nightingale, wheeled me to my desk where a large, familiar shape sat – the typewriter my teachers had provided for me, covered with its grey plastic cover. Nothing new here. But when I finally dragged off the cover, I couldn’t believe my eyes. There was a brand-new electric typewriter, all elegant cream tones and jet-black keys with pearly white lettering. Who had done this? Was it my dad trying to find another way for me to express my feelings? Was it Mum thinking a beanie wouldn’t be enough to console me for the pain and fear I had undergone during the operation?

Then Sister spoke from behind me. ‘John, you were very brave to have a brain operation.’ She put a hand on my shoulder and rubbed my back with the other one. ‘You are a special, special boy. That is why I have given you a typewriter.’

I still couldn’t believe it. I had been learning to use a typewriter for years, but that was strictly for school work. Here was a brand new one and it was mine. Mine!

I was made! Now I could write anything I wanted.

At the beginning of 1962, a new teacher arrived from England to take our class: Miss Pamela Hatch. She had jet-black hair, brown eyes full of the joy of life, and a warm, friendly manner. Most of all, she had a gift for teaching because she had the knack of getting on her students’ wavelength. For the very first time, I understood how to work hard at school and at my typing. She loved that I typed notes to her, and, being the clever teacher she was, used this as a way of getting the most out of me. She asked me questions, such as what I did outside school, so she could get to know me better. One day, when I showed her my letters from Mum and Dad, I saw a glint in her eyes. The next thing I knew, I was using my typewriter to write letters back to my parents, all in my own words.

Now I was using words for real back and forth communication, I had a pathway out to the world. From their return letters, I could tell how pleased Mum and Dad were at getting letters from their non-verbal son … letters creating his own accounts of his activities, thoughts, feelings, and ideas.

I couldn’t stop. I wrote to Grandma, to my brothers, and many others. Everyone who received my letters was surprised and delighted. And wonder of wonders: I got letters back.

In addition to Miss Hatch, God has sent me many inspirational teachers. In 1966, He sent me Ms Curnow who would become one of the best of them all. She read to us from newspapers and books, and she did it in such a way that everything burst off the page and into the classroom. There I was, right where the story was set, hearing and seeing the characters, and taking part in all the adventures.

She also encouraged free writing, letting me type whatever I felt without the pressure of spelling correctly.

‘John, let’s get the words down,’ she said. ‘I don’t care about your spelling because I can see your hand can’t match the pace of your mind.’

Of course, my spelling had to be corrected afterwards, but she gave me the permission I needed to get my thoughts running across the paper as they came into my head.

Typing is hard, slow work for someone who can only use one finger of his left hand, and who pecks at the keys with the precision of an alcoholic woodpecker. If I needed to communicate and didn’t have my typewriter, I just couldn’t. To compensate, I evolved a series of facial expressions and noises that I still use to this day. These have always worked well enough if I am dealing with people who know me well but, in most cases, they’re lost on people who are new to me. Ms Curnow took this dilemma on board and set about looking for a solution.

I could tell I was on her mind by the worried looks she gave me in class and the way she raised her finger as if about to say something only to walk away rapidly and talk to someone else. Then, one day, she asked for a meeting with me and my speech pathologist.

‘Since you can type on your typewriter, John, why don’t we get a board made up with the letters of the keyboard on it and a few simple words that you use a lot? That way, you won’t have to spell them out all the time, and you can communicate back when people talk to you!’

It was brilliant.

During the next few weeks, I typed out what I wanted on my talking board, so a technician could get started on creating the layout. I loved writing and now saw a new dimension to the power and beauty of the written word. For the first time in my life, I could use words to talk with anyone, anytime.

And then there was poetry.

I was no longer a child. I was growing into a young man, and had all the feelings and emotions of any young man. I needed to express those feelings and emotions and I started to write poems.

Writing poetry was incredibly liberating and uplifting. I wrote and re-wrote, playing with ideas, words, images, emotions. As I got better at creating this form of art, I became more confident and more astonished at what I could do with words.

My speech therapist, Emily, was not much older than I was, and as a child had contracted polio. I marvelled at her strength and how she had used her ability to overcome adversity, complete a degree in one of the most difficult fields, and practise in such a demanding profession. But it seemed that having a disability helped her understand what others were going through, making her a much better practitioner. Emily let me talk about anything and everything, and in so doing, she opened my mind to many new ideas. She also read my poems.

One day she leant over my board, placed her elbows on my tray and her head in her hands. Leaning in really close, she murmured, ‘You know, John, you could put out a book of your poems and let others enjoy your poetry.’

Why hadn’t I thought of that? I just loved the idea, and when I suggested it to my teacher at school, he agreed, saying, ‘John, that is absolutely brilliant!’

At fifteen, it was thrilling to ‘have’ writing, and to use it to start taking over the business of my life. I was not only going to be a grown-up, I was going to be an author. I had things to say. Writing is a gift from the great God Himself and I was not going to waste it.

So, for much of my fifteenth year, I worked furiously on my first book of poems. To my surprise and delight, I sold a hundred copies of that book. Publishing my own work and signing each copy gave me a special sense of ownership and excitement. But the most exciting thing of all was hearing back from enthusiastic readers who told me that they had enjoyed my poetry. It made me realise I had something I could give to the world.

In one of my poems, I say: Hell had made a poet out of me. That is true, but more than that, poetry allowed me to release the very deep feelings I could never express verbally. And poetry has done this better than anything else could have.

Whenever I have needed help, poetry has been there to help me.

I write a lot about freedom and how much it means to me, a person who fights every day to overcome restraints.

I write about love, and how girls only ever seemed to want me for my mind.

I write about the distance from family and the place of my birth, and how little things, like the smell of my mother’s cooking or the sound of my brother’s voice, were far more precious to me than they would be for most people my age.

Poetry empowers and enlivens me. By carefully arranging words on a page, I can affect another person’s heart. What could be more powerful than that?

MIND OVER BODY

My mind is at war with my disabled body.

My mind has an idea.

My body takes a long time to do anything.

Then my mind gets mad with my body.

My mind tries to make my body do things quickly. My mind should know my body cannot do anything quickly.

This war goes on and on.

It will stop when I die.

Since publishing my first book in the sixties, I have continued to write and self-publish, and have two books of poems and a collaboration to my name. My impairment, and the treatments I have undergone, have been hard, but they have made me an expert on my condition, which has led to other opportunities. For example, I have been asked to co-write and present papers in subjects ranging from assisted communication technology to PEG feeding and the loss of eating. I have become a motivational speaker and a disability advocate, enabling me to further other people’s understanding and knowledge of what it is like to live and succeed with a disability.

Before speech devices were common, I would have to pester someone at conferences to read my work out loud to the audience. I was persistent, and never gave up until I got my work read … no matter how badly.

It’s always been like this: if I need to get something done, other people have to help me. For many years, I did my own typing, but now someone sits close to me while I point to words and they guess what I’m saying and key it in for me. Sometimes we do this for hours.

At one particular conference in Vancouver in 1996, my co-presenter, a speech therapist named Melanie McVie, suggested that I write a memoir.

It was a great idea, but I realised that, for a project of that size, I needed help. And that help arrived. But not immediately. It wasn’t until 2005, nine years later, that my care facilitator announced that he had found me a new carer: John Corrigan. He didn’t have much experience in caring, but he was a writer and was willing to help me with my memoir.

As it turned out, he was more than a writer: he was a good writer and became a good friend. He also learned how to be a good carer.

It took us seven years. I would point to a word, an idea, and he would try out different interpretations. Little by little, we’d reach agreement on what I wanted to say and how I wanted it told. Twenty-nine words a day and a lot of patience and perseverance. Little by little, I remembered past events and interactions – good and bad – and this reflection led me to a greater understanding and acceptance of my life.

We were always realistic about the future of the book. We reckoned we would self-publish and sell as many copies as we could ourselves, as that’s what first-time authors can expect. So it was with the understanding that we would be paying the costs that we sent it to a publisher.

Then came their reply. Yes, they would publish, but it wouldn’t be self-published. They would pay for the publishing because they thought there was a market for this type of book. Suddenly, we were real authors.

So, here I was, about to launch my book. Actually, there were two launches: one at radio station 4MBS with family and friends present, and another at a Cerebral Palsy League Picnic in the Park where support workers and those seeking support were able to experience first-hand what someone with cerebral palsy can do. Other people were able to see that those with cerebral palsy, and the organisations that support them, can achieve tangible, enduring outcomes. This is something I have always believed: that it is not in the thinking but the doing that we accomplish our goals.

Later, the entire book was read on radio 4RPH so that people with reading difficulties could share in it and be inspired. Then, by being available online, the book reached, beyond all expectations, a global audience, thus expanding the reach and impact of its message.

So what is its message?

That we all have abilities and disabilities. That we can all make a contribution to the world: some in big ways, some in smaller ways. That nothing we offer up is unimportant. That some of us have greater challenges than others, but we all need others to help us to achieve our ends.

My challenges have been considerable, but I have had a devoted family, and dedicated teachers. I have had sailing and fishing and art and poetry. I have experienced pain, but I have also known beauty. I have loved and been loved. And, I have been granted the power to express all of these things with words. Who could ask for more?

TWO

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High-Viz Happiness

by Michael Kuhn and May-Kuan Lim

SMALL GARDENS WITH ROSES AND TIDY SHRUBS LINE THE DRIVEWAY THAT leads to Kathleen’s retirement unit. I ring the doorbell and Kathleen welcomes me. When I compliment her on the heart-shaped wreath hanging on the door, she says that she’s only just put up the decorations, a little late this year, because she’s been so busy. I sit beside the Christmas tree while she settles into a lounge chair opposite. Then I say: tell me about Michael.

Kathleen: My husband, Reiner, and I brought Michael home from the hospital, a healthy baby. When Michael was just seven months old, Reiner died of cancer. Our daughters, Susan and Yvonne, were twenty-two and twenty-three at the time and they had already moved out. So for a very long time, it was just Michael and me.

When Reiner died, he didn’t know that Michael was any different because by then Michael was sitting up like any normal child. I think I knew when Michael didn’t crawl and didn’t talk, but I pushed it out of my mind because I didn’t want any more bad news.

As time went by, Michael got around by shuffling on his bottom, and made up his own sign language. For example, if he wanted a drink, he’d curl his fingers around an imaginary cup and lift it to his mouth. I knew if he was happy or sad, but he was hardly ever sad, so that made things easier for me.

One day, when Michael was about eighteen months old, I went to see the doctor and Michael was, of course, with me. The doctor said I should take him to the children’s hospital.

At the children’s hospital they told me that Michael had global developmental delay, and they booked him in for physiotherapy, occupational therapy, and speech therapy. It wasn’t easy to keep all these appointments because Michael has a fear of doctors, dentists and needles. I can’t understand his fear of needles, because he has a very high pain threshold and doesn’t feel it. I know he doesn’t, but it’s something we’ve been working through all his life.

Michael started going to school at Gepps Cross Primary School, in a special class. He was just learning to speak then. They had a dentist who came to the school to check the children’s teeth. Maybe it because the dentist’s room smelt of antiseptic – I’m not sure – but Michael just would not go in. So the dentist had to go out into the schoolyard to see Michael. The dentist managed to get Michael to open his mouth, but Michael could not stand having rubber-gloved fingers inside his mouth. It’s always been difficult, Michael with doctors and dentists.

By the time he was ten or eleven, he had moved to St Patrick’s Special School. His teacher’s husband was a dentist. Michael’s teacher took Michael to her husband’s dental surgery in North Adelaide, hoping to help Michael overcome his fear. The dentist managed to persuade Michael to step into his room. It was such a milestone that I took a photo of him sitting in the dentist chair. When we look at that photo of young Michael wearing sunglasses, I still say to him, ‘You did well, Michael, look your mouth is open.’ Because of the cost, Michael only went there once, but it was worth it because I use that photo to remind Michael of how good he’d been, and how he’d sat in the chair.

Since he left school, he’s been going to see Dr Gryst in a special unit at the Royal Adelaide Hospital. Dr Gryst lets him take his time to sit in the chair. If he needs any work done to his teeth, he still has to be put to sleep. Michael’s thirty-one now and his dentist is getting very tired.

It’s not been easy. It’s been slow. Everything’s been slow.

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When Michael was six, we visited his older sister and brother-inlaw who were living in London. We were out shopping one day, and it was hot and very crowded on Oxford Street. Something must have caught Michael’s attention because he dashed out – and disappeared.

Just like that, he was gone. I felt sick. Michael wasn’t talking yet. He couldn’t tell anyone his name, my name, his address or anything. I thought that I’d never see him again.

I went in to the jeweller’s shop and they were very kind and allowed me to use their telephone to call the police. The police told me to stay put in the shop while they looked for him. I did as I was told, even though I didn’t