Eye Can Write

by Jonathan Bryan

  So it was that the cameraman followed me during November and December 2016. During that time, I also found myself at the Department for Education in London seated opposite the then Minister of State for Vulnerable Children and Families, Edward Timpson, who had responsibility for special education.

  Change is easy to talk about but almost impossible to achieve. Like a pincer movement, I have tried to focus my energies on those at the top (policymakers) and those at the delivery end (teachers and trainers) in the hope that I can make a difference for the children caught in the middle. Setting off before dawn to meet Mr Timpson, Daddy gave a running commentary into a video camera for most of the journey amid Mummy’s protestations. And, as the sun rose, reflected on London’s iconic landmarks, anticipation for what lay ahead hung in my silent contemplation.

  ‘I have come as a voice for the voiceless.’ I spelled out my rehearsed line for the minister, feeling the weight of all those I represented on my shoulders.

  Next to me on the table sat a box containing the signatures of over 180,000 supporters of my petition, outlining my dream that every nonverbal child should be taught to read and write in school, regardless of their label. Nervous excitement for this moment had robbed me of most of the night’s sleep, and now I felt so small and insignificant. How could a child in a wheelchair hope to make a difference? And yet, this is what I believe that I was given extra time to do. Often when people talk with me they can’t help but look at the person sounding out the letters and words I spell. Not so with Mr Timpson. As I spoke with him, he looked at me intently and I felt my words were falling on receptive ears.

  ‘Today’s a chance for us to learn more about what we can do,’ he said. ‘I think it’s really important that no one has barriers put in their way.’

  Not only were we talking about the challenges of effecting change on the ground, but we had both brought experts to the meeting. I was accompanied by experts in the field of literacy teaching for students like me using augmentative and alternative communication (AAC), and Mr Timpson’s top special educational needs advisor joined the discussion. Once the cameras left the room, the real business of discussing change took place.

  ‘What you’ve shown me through coming here today is that you have some very strong and passionate views that you want to share,’ said Mr Timpson, ‘and the more that we can educate teachers as well as everybody else, the advantages that has, not just for them but also for their pupils. Then we will have done a good thing and you will have made something important happen.’

  Thus, we left with promises of some research to be commissioned into the literacy teaching of children like me, and the feeling that my message had been understood. But in its delivery I had spent myself, so in antithesis to the elation of the rest of my group of supporters and experts, I felt an exhausted flatness.

  Gaining momentum, my campaign was beginning to attract the attention of a wide audience. Not long after my article in the Guardian was published in January 2017, Mummy got a phone call that Susannah overheard. After sharing the news with Daddy and me, we were instructed not to tell anyone else…

  Six weeks later in May, my seven-year-old Susannah had turned eight, and had still not told a soul. Travelling to London with anticipation buzzing in the van, Mummy and Daddy sent the emails I had prepared the day before, and the congratulations started to fizz into our excited bubble. St James’ Palace. An invitation from St James’ Palace to receive an award from none other than Princes William and Harry to commemorate their mother, Princess Diana. An inaugural Diana Legacy Award. How I wish we had cleaned the van before its dirty country high-tide marks featured in the foreground of any tourist photos of the palace that day. Wheeled from grime to grandeur!

  It was one of those days when, looking back, it seems like a surreal dream; but unlike a dream, I can relive the moment I chatted with Prince Harry and received the award from the princes by looking back at the footage and photos. But those photos belie my happiness. When I am tense with excitement or nerves or both, my cerebral palsy tenses my body too. Strong spasms pull my muscles tight and smiling becomes impossible. Inside I am happy and excited, from the outside I look at best indifferent and at worst miserable. Like a sponge my body soaks up the atmosphere of the room, so it was only at the end of the ceremony when the room erupted into prolonged applause that my body relaxed and realigned itself to give my muscles the tone to slip off Mummy’s knee. With her supporting me I stood on my feet and whooped with joy. Out of the corner of my eye, I saw Prince Harry smile across at my mother – obviously relieved that I had enjoyed it after all. Saying it was an honour doesn’t do it justice, especially when I met the other young people from around the world getting the same award as me, all working towards making the world a better place.

  Big days come with a health price for me, and at home that evening I paid it. As a reminder from my body that my chance to make a difference is limited, I had a seizure.

  With Teach Us Too morphing from one child’s campaign to a movement making links with other people and organisations, it was becoming clear that it was coming of age. I am more than Teach Us Too and Teach Us Too is more than me. So now, when I am asked to speak in public, I do so as Jonathan Bryan, blogger at Eye Can Talk, championing the message of Teach Us Too. It also means that when I breathe my last, Teach Us Too will live on.

  Now, rather than spending my free time writing emails and making connections, I can concentrate on my writing: poetry, and even a speech for the House of Lords, which I gave at a Diana Award reception there in September 2017:

  I received the Legacy Award in recognition of my Teach Us Too campaign for all children to be taught to read and write, regardless of their label.

  It was an immense honour to receive this award remembering Princess Diana, who so often went out of her way to show solidarity with those society would rather forget about.

  Her legacy award has given me a stronger platform on which I am a voice for the voiceless. My dream is a special education system where academic competence is assumed, rather than assumptions about academic ability based on physical disability. Unfortunately, current education policy is tipping the other way, with proposals from the Rochford Review that schools will no longer need to report to government on children labelled with profound and multiple learning difficulties (as I was). This is against a backdrop where special schools are increasingly opting for non-subject-specific learning; i.e., literacy teaching is no longer required. This lack of accountability signals that the education of children like me is of very little importance. Imagine Ofsted was abolished in mainstream education, because no one really cared what children were taught in schools. Yet this is what is happening to children like me in education.

  If my mother hadn’t removed me from special school for a few hours a day to teach me to read and write I would not be able to write this for you today. For a non-verbal child, learning to read and write is not just a life skill. It unlocks our voice. It gives us life in all its fullness. I am not unique. There are more children like me in special school who need an education system that believes they are worth teaching too. Then my story of learning to write and communicate will not be so unique either.

  I don’t have much time left, so I am asking you to get behind my campaign and use your influence to ensure there is accountability and aspiration for children who are often marginalised and judged.

  My body is very weak, but my desire to make a difference for children like me is very strong.

  With Diana’s legacy I am building my own.

  Sometimes my spelling board is too slow for the moment. Written over three mornings, my speech was read out by my nervous mother to a packed room of lords, ladies and MPs. My turn to be proud of her! Afterwards many people congratulated us both, and new connections were made for my campaign.

  When I write and spell, people listen. Like the moment the expectant crowd hush to watch the tennis player serve, the atmosphere when I ‘speak’ concentrates into the m
oment, and I hold the attention of my audience.

  I often need to rely on those around me to read out my words. One other such occasion was the premiere of my CBBC programme, My Life: Locked-in Boy. Transforming the school into a prestigious venue for the screening, my friends, family and esteemed guests wore their party best to walk the red carpet and join me for the event. Valiant Susannah read my speech for the evening. Standing in front of an audience of over 100 people, my slight Susannah opened her mouth and astounded everyone. Not only could we all hear every word projected to the back, but she delivered the speech with such presence, aplomb and panache, while I watched her with pride in my heart and a smile on my face.

  With the completion of one project, I could refocus on another… the writing of this book.

  Spelling and writing is slow and intentional; giving voice to my thoughts is a measured activity. For writing, this means sitting in the moment I am describing – seeing it, hearing it, feeling it. Words swirl onto the page, portraying the experience to be relived by my reader. Words that need shepherding, culling, matching before being committed to a piece.

  As a budding writer, I now appreciated the great oaks of English literature even more – Shakespeare’s sonnets, Wordsworth’s poetry, Tolkien’s The Hobbit. Not just as the reader, but as a writer I could admire the techniques and language in new ways. And there is one modern author I aspire to be like the most… Michael Morpurgo. He paints his imagery using words as his brush; scenes are described in vivid detail while not holding up the unfurling plot, so the reader is immersed and travels the story with the characters.

  Hearing Kensuke’s Kingdom in our van as we drove to and from Norfolk, our first family introduction to Morpurgo was impressive. What other author can hold the attention of a pre-schooler and a grandmother? For the first time on holiday no one minded long journeys if we could listen to his words, and trips in the van were almost sought after. Following that trip, to my delight, we studied Why the Whales Came at primary school, and my love of Morpurgo’s writing was established. The more I read, the more I tried to emulate his writing, and the more I longed to meet the man behind the books. So Sarah applied to the UK charity Make-A-Wish for my dream to become a reality. Dreams coming true is what Make-A-Wish specialise in, and thus in December 2016 I was sat in a room at Exeter Cathedral waiting to meet my literary hero before he performed his story, The Best Christmas Present in the World. Christmas magic filled the air at the event, held to raise money for Mr Morpurgo’s charity, Farms for City Children.

  Anticipation electrified the room, magnifying every small noise as we waited for the great man himself. After a number of false starts and the ticking by of too many minutes, the door handle depressed and in he came; sporting his signature red coat, a jaunty black beret and a warm, genuine smile.

  ‘Hallo Jonathan, you came all this way. All this way just to shake an old man’s hand. Do you know how lucky you are to be ten? Ten’s young! Seventy-three’s old!’

  Drawing his chair close to mine, we had an initial discussion about his writing before I handed him my story, Curtains to Freedom.

  ‘Can I read this aloud?’ Mr Morpurgo asked. My story read aloud by the master himself? I can’t believe he needed to ask!

  ‘“Listening, looking, and wanting to be heard, I spend my time unable to tell my story. In silence, I live behind the curtains…”’

  As Michael took my hand, we lost ourselves in the richness of his narration. Transporting us past the confines of the room where we had met, we travelled behind the curtains of my silence together.

  When he had finished the story, he clapped. ‘It’s remarkable writing. You use words like a paintbrush, and also like a composer. This is extraordinary. I think this needs to be sent to the minister for education. People should see this! My goodness me, what thoughts go on in that head?’

  As the master of modern atmospheric storytelling, Mr Morpurgo is my literary hero. To hear him utter these words after reading my story was the biggest compliment I could ever hope for.

  ‘I am your student,’ I spelt out.

  ‘That’s lovely,’ he said. ‘I’ve always wanted a student! This is very strong in emotion, this is deeply felt, and I think maybe that is what links your writing to mine. I try to make my stories full of the feeling that I have inside me; sometimes it’s anger, sometimes it’s love, it can be all sorts of things. So we’re linked that way I think – you, me…’ ever the dramatist, he completed the triptych with ‘…and Shakespeare.’ Laughter rippled through the room with his final flourish. ‘I don’t really like meeting writers who are every bit as good as me… particularly when they’re younger than me!’

  ‘I’ve very much enjoyed meeting a writer older than me,’ I spelt back with a grin.

  Sitting back in his chair, Mr Morpurgo looked at me and said, ‘I’m not often speechless Jonathan, but I sort of am.’

  Listening to Michael’s Christmas story at Exeter Cathedral was beautiful; his turn to transport me to another time and place. Afterwards he asked if I had enjoyed the performance.

  ‘You are compelling,’ I spelt.

  ‘You always come out with surprising words,’ he said, and laughed. ‘Lovely, Jonathan. I’ve so loved meeting you. You’ve made my evening.’

  To my delight I continued to ‘meet’ Mr Morpurgo in his many books, which I read at home and studied at school. Through all the activity, excitement and busy-ness of campaigning, it was school that kept me grounded. Not treated differently, I loved being as normal a student as I could; when we did experiments I joined in, when we played cricket I held the bat with my carer and was propelled full speed in my wheelchair, and when I misbehaved I got told off! Like my peers at primary school, I took my SATs exams at the end of Year 6, with some extra time to compensate for my slow eye pointing. Usually I love a test, but I found the stress of public exams very hard work, and the accumulation of tests day after day exhausting. Sometimes being a ‘normal’ student is less enjoyable, but as Mummy often reminds me: I can’t have my cake and eat it!

  Leaving primary school was sad. As a school, they had travelled my communication and education journey with me: believing in me, nurturing me and teaching me. Friends I had known since I was four, and played with every day, were not all going on to my next school. But the end of one era of my life heralded the beginning of the next. In September I began at our local mainstream secondary school, studying English, maths, science and DT.

  For me, the climax of being able to spell has not been education or campaigning, or awards. The pinnacle of my journey with speech has been the ability to share my faith. When I started to spell, words didn’t alter my faith, but sharing it using words changed the perceptions of those around me. So when I got the opportunity to be confirmed by the Bishop of Swindon in Malmesbury Abbey, I jumped at the chance. For now, I didn’t just walk with Jesus, I publicly joined the throng on the shared adventure.

  During the service my godfather read my words – my testimony to everything that has gone before and all that lies ahead – which I had called ‘Living Life in all its Fullness’:

  With Jesus as my saviour, companion and friend, I have lived my hours here with happiness in my spirit and contented calm in my soul. Knowing Jesus is with me, cradling me in pain, sheltering me from darkness and beckoning me forward, has given me the strength and serenity to look life in the eye and smile. Like the constancy of the second hand of a clock, Jesus inhabits the quaver beats of my life; and as that beat slows, I look forward with excited anticipation to the day I will see Jesus and live together with him in the garden forever. In the meantime, I cleave to Jesus: my faith and my life.

  Like my life expectancy, this book is short. But why did I write it in the first place? To answer that, I need to transport you back. Before my wish was granted, before Michael Morpurgo had met me in person, I, like thousands of others, wrote him a fan letter. Having read his book Cool! about a boy in a coma, I explained that the story was very different from
my own particular experience of being unable to speak. I sent him my poem ‘Song of Silence’, and wrote: ‘I have a story I must share with you, a sad story, where children like me are trapped inside because no one has unlocked their voice.’ Asking him to write a story about nonverbal disabled children like me, I sent my letter – hoping for, but never expecting, a reply.

  Many months later I received a wonderful handwritten postcard from Michael Morpurgo, suggesting I read Listen to the Moon and telling me: ‘As for writing a story with non-verbal disabled children, this is for you to do, when you feel the moment is right. It is your story. Tell it.’

  EPILOGUE

  AS A VOICE FOR THE VOICELESS, I HAVE WRITTEN THIS BOOK FOR THOSE WHO CAN’T YET READ AND WRITE. As I said in my speech at the House of Lords reception, for non-verbal children, learning to read and write is not just a life skill. It unlocks our voice. It gives us life in all its fullness. Stagnating in an educational stalemate, their story is waiting to be told. My proceeds from the sale of this book will go towards my Teach Us Too charity (www.teachustoo.org.uk), which is working towards the literacy teaching of all children regardless of their label.

  Last week my best friend Will came to visit me, and Mummy asked him if he would like to try using my spelling board. Using his high-tech eye-gaze machine, Will had become proficient at communicating by choosing pictures with words underneath, from a selection offered to him. To my knowledge, though, he hadn’t used a spelling board or been taught how to read. Everything he wrote that day was from self-taught, whole-word reading from the options presented on his eye-gaze machine. Just like me, Will is labelled with having profound and multiple learning difficulties, but despite his label, and never having been taught to read, he was able to use my spelling board. With my board in front of him, Will looked at the top right-hand square, followed by the red square.