Finding my voice: the experiences of a child with quadriplegic cerebral palsy

12-year-old Jonathan Bryan was labelled with profound and multiple learning difficulties (PMLD). The only part of his body he has full control over is his eyes, which he uses to communicate. He shares his experience of education, faith and the need for us to create spaces for all children and young people to actively contribute

Can you imagine not being able to speak or communicate? The silence, the loneliness, the pain. Inside you disappear to magical places, but most of the time remain imprisoned within the isolation. Waiting, longing, hoping. Until someone realises your potential and discovers your key so your unlocking can begin. Now you are free, flying like a wild bird in the open sky. A voice for the voiceless. This is me, and this is my story.

Listening, looking and waiting to be heard, I spent the first part of my childhood unable to tell my story. In silence I lived behind the labels. Severe cerebral palsy. Profound and multiple learning difficulties. Non-verbal. Chronic lung disease. Curved spine. Transplanted kidney. Hearing loss. Squint. Short stature. Deranged liver. Even my teeth have a disability. For my first eight years these labels defined me; expectations based on my outward appearance.

But more than the rest, the silence defined me. Shrouding my personality, silence suffocated my identity, my very being sealed shut. I couldn’t even tell you my name. Voiceless, I had no way to communicate, relying instead on those around me to tell people: “His name is Jonathan.” All that changed when I was taught to read and write, and learnt to communicate using a spelling board.

Writing and spelling

This is how the spelling board works. The 26 letters of the alphabet are organised into five grids of letters, and each letter is surrounded by one of five colours: blue, red, green, yellow or purple. To select a letter I need to move my eyes twice across the board to a group of letters and to the corresponding coloured square. For example, if I want to say “Hi”, I would look at the grid the ‘h’ is in, and because the ‘h’ is green I would then look at the green square. Next I would look at the grid the ‘i’ is in, and because the ‘i’ is red, I would then look at the red square. My communication partner points where I am looking and sounds out the letters. Bottom middle is my space bar, and the tick and cross are my ‘yes’ and ‘no’, with the cross doubling up as a delete function.

They took my desire to learn as seriously as they had taken my need for social interaction

For as long as I could remember, Mummy had read to me. For days, weeks and months we curled up in a hospital bed together and plunged ourselves into a novel. Immersing myself in a story is the most enjoyable, wonderful form of escapism. Books nourished my mind and prevented mental decay during my years of silence. Trapped inside my own body I run within the pages: skipping, laughing, exploring. During the years of effectively being locked in by my severe cerebral palsy, words and phrases had been banked while my mother read to me. Words have been my portal to another world, and now the mantle was passing on to me.

I have three very different experiences of education: learning with Mummy and my carers, my school for those with additional needs and my mainstream primary school. These contrasting experiences demonstrate how children and young people like me are treated.

Special school

‘Special school’ was only a short drive away, but it was so distant from the rest of my world that it might as well have been a foreign country. It even had a foreign language. Imagine the voice used to talk to a baby: high-pitched, excitable, slightly louder than usual. Mix that with how you might talk to a foreigner with little understanding of the language: slow, loud and clear, with short sentences and no complicated words. You are now close to speaking ‘Special’.

In the classroom we sat on nine wheelchair islands, an unconnected archipelago isolated from each other by a sea of activity. We were arranged in a circle with just the right distance between us so that we couldn’t touch one another (any successful attempts at this precipitated a complete readjustment to ensure that it didn’t happen again. I have no idea why). The teaching assistants and teacher then busied themselves around us, their chat filling the air.

At 8 years old I was the youngest in the class, which was predominantly made up of teenagers. The TV programmes we were parked in front of were nursery rhymes with basic animation and presenters my 2-year-old sister Jemima would have been happy to watch. Presenters my parents would rather walk out of the room than spend time watching with her. But the children in my class at special school couldn’t walk out.

True inclusion goes deeper than accessibility. True inclusion enables us to contribute as well as to receive

Primary school

While the special school never seemed to believe in me, the local village primary school embraced my new way of communicating, never doubting my abilities. As a fully-fledged member of the class they took my desire to learn as seriously as they had taken my need for social interaction.

During my mornings at home I would follow the English and maths curriculum they were doing at school, but at the optimal speed I could manage in my own environment with one or sometimes two people as board holders and scribes. And Mummy was the ultimate in comfortable, adaptable seating for me to sit on while I used my spelling board.

After I became unlocked, the words, images and feelings that filled my head became a bubbling mass, looking for ways to be expressed.

Being a pupil at mainstream primary school gave me the literary tools and instruction I needed, introducing me to different genres and techniques so that my emergent creative writing could flourish. I started to embark on writing a 500-word story for a BBC Radio 2 competition and to learn how to shape language for different purposes. In all the subjects I was soaking up the new learning, but it wasn’t just the learning I was included in.

Like a rite of passage, all Year 5s and 6s go on residential each year, including me! Fun was not something my primary school were prepared for me to miss out on. Orienteering, archery, shooting, fencing, canoeing, climbing, biking – every activity my friends did, I joined them in. And not as an onlooker, but as a participant having just as much fun as my friends, maybe more!

This determination to include me on the part of the school and the centre meant for the first (and possibly only) time I could feel the breeze in my hair as I sat on Mummy’s lap whizzing downhill on an adapted electric bike, the achievement of hitting a bullseye and the exhilarating terror of being hoisted to the top of the climbing wall.

The campaign

With my new-found form of communication, I wanted to change how others like me are treated and educated. Change is easy to talk about but almost impossible to achieve. Like a pincer movement, I focused my energies on those at the top (policymakers) and those at the delivery end (teachers and trainers) in the hope that I could make a difference for the children caught in the middle.

This led to a meeting with the then Minister of State for Children and Families, Edward Timpson. As the sun rose, reflecting on London’s iconic landmarks, anticipation of what lay ahead hung over my silent contemplation. “I have come as a voice for the voiceless.” I spelled out my rehearsed line, feeling the weight of all those I represented on my shoulders.

Next to me on the table sat a box containing the signatures of more than 180,000 supporters of my petition, outlining my dream that every non-verbal child should be taught to read and write, 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 I was given life to do.

Not only were we talking about the challenges of effecting change on the ground, 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 the minister’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 the children’s minister, Mr Timpson, “and the more that we can educate teachers as well as everybody else, the more 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.”

We left with promises of research into the literacy teaching of children like me to be commissioned, 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. Change is slow.

Change is easy to talk about but almost impossible to achieve

Life with Jesus

For me, the climax of being able to spell has not been found in 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.

When I got the opportunity to be confirmed by the Bishop of Swindon at 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 when I will see Jesus and live together with him in the garden for ever. In the meantime, I cleave to Jesus: my faith and my life.

Jesus chooses the weak over the strong, the poor over the rich, the humble over the proud. God’s heart is for those on the margins of society and his Church needs to reflect this. Of course, part of this is addressed in making our buildings accessible: wheelchair ramps so we can get in, hearing loops so we can hear and accessible content so we can follow the service. But true inclusion goes deeper than accessibility. True inclusion enables us to contribute as well as to receive. True inclusion values us as part of the body of Christ. And we each have a part to play in making God’s kingdom a reality here on earth.

Questions for reflection

  • Take time to consider whether you have made any assumptions about the capabilities of children and young people with additional needs. How could you shed those?
  • Do you have the basic amenities necessary for those with additional needs to be able to access your youth and children’s ministry?
  • How can you enable children and young people with additional needs to contribute their gifts to the ministry of the church? What might those be? Have you taken the time to ask them?

PMLD

Jonathan’s book is filled with his profound poetry. This is one example, which stands for Profound and Multiple Learning Difficulties.

We are not capable of learning
So do not tell me
There’s something going on behind the disability.
Treated as useless handicaps
Minds with nothing in there, tragically
Stuck in a wheelchair,
Disabilities visibly crippling –
Just incontinent and dribbling,
We are not
Academically able.
You should make our minds
Stagnate in special education!
We cannot
Learn to read,
Learn to spell,
Learn to write,
Instead let us
Be constrained by a sensory curriculum.
It is not acceptable to say
We have the capacity to learn.
School should occupy us, entertain us; but never teach us
You are deluded to believe that
Our education can be looked at another way!

(Now read it again backwards)

Jonathan Bryan is 12 years old and lives in Wiltshire, where he attends a mainstream secondary school. He is author of Eye Can Write: A Memoir of a Child’s Silent Soul Emerging. This article is based on extracts from the book. In 2018 Jonathan set up a charity, Teach Us Too, promoting an education system in which all children are taught literacy, regardless of their label.


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