Many people assume that the best thing about my spelling board is being able to chat, but for me, creative writing will always be my first love.
CHAPTER SEVEN
Holidays
Happiness emerging, excitement growing,
Oceans of dancing waves lovingly flowing,
Laughter like singing birds heard in the morning,
Irresistible ice-cream, noon-time yawning,
Daddy filling our heads with figures and facts,
Away we’re escaping down unexplored tracks,
Yearly adventures treasured deep in our hearts,
Sadness it’s over ‘til the next one starts.
WHILE THE SPECIAL SCHOOL NEVER SEEMED TO BELIEVE ME, THE LOCAL VILLAGE PRIMARY SCHOOL EMBRACED MY NEW WAY TO COMMUNICATE, NEVER DOUBTING MY ABILITIES, AND THEY TRANSLATED THIS INTO A PLACE ON THEIR REGISTER. 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 the mornings at home I would follow the English and maths curriculum that they were doing at school, but at the optimal speed I could manage in my own environment; with one, sometimes two people as board holders and scribes. And Mummy as the ultimate in comfortable, adaptable seating.
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. So 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.
The residential. Like a rite of passage, all Year 5s and 6s go on residential each year, and when I say all I mean all. Including me! When I was on the register of my special school, my class went away for a night followed by a day of activities in nearby Bristol – well, that’s what we discovered from the school newsletter. ‘Everyone had a wonderful time,’ we learnt. Apart from me and Will. Uninvited, there was not even an attempt to include us in the day’s activities. Silent in our wheelchairs, we were simply pushed into a different classroom, unaware of the fun we were missing out on.
Fun was not something my primary school were prepared for me to miss. Orienteering, archery, shooting, fencing, canoeing, climbing, biking; every activity my friends did, I joined them for. Not as an onlooker, but as a participant! Having just as much fun as my friends, maybe more… 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.
Friends have always been important to me, but my relationship with Will is unique. How can I describe our relationship? Bonded by our similar disabilities, we have never needed words; instead we look deeply into each other’s eyes and together we disappear into our fantasies. It was only because of Will that I requested to stay at special school for one afternoon a week, only his company I craved. Despite knowing this, the special school always seemed to find different and separate activities for us to do; if I went to the sensory room, Will was in the classroom, and if Will was chosen to do cooking, I was left in the classroom. Even in the same room, I felt we were deliberately placed apart. Why? No idea, but it made me feel very sad. No amount of protestation from me, Mummy or my carers could change the situation. And it was depressing, watching Will and the other voiceless young people sit in front of animated nursery rhymes, have The Very Hungry Caterpillar read to them again and watch lights on the ceiling.
In the end I requested a meeting with the headteacher to explain that I wasn’t coming back to special school at the start of the next term. I sat with Mummy and a carer in her airy office with a low coffee table and spelling board between us. I suspect that for the head, this was the first time she had received spelt-out pupil feedback from a child in the PMLD class. Using my spelling board I said, ‘Please talk to children like me as you would to an able-bodied child our age.’ Her face appeared to contort into barely disguised disbelief. ‘And please teach Will to read and write,’ I added.
Well, Jonathan.’ The headteacher spoke the most enunciated ‘Special’ I have ever heard. Will has an eye-gaze machine. He is learning in his own way.’
Abandoning Will was heartbreaking, but thankfully we could still meet up at the local coffee shop, or at the park where we could sit together, revelling in each other’s companionship.
During the next term, I turned ten. Celebrating birthdays is such fun, especially when they are your own; and this one was extra-special because not only was I becoming double figures, I was also able to spell out what I wanted for the first time. From my parents this brought a bread maker, but school’s gift to me was unexpected on both sides. In English I was introduced to poetry for the first time. At last, here was a genre that didn’t disadvantage my slow speed, where I could play with the sound and meaning of words, to create pictures and emotions, where the perfect fit was the only fit.
On my tenth birthday, having studied William Blake’s ‘The Tyger’ earlier in the week, I spent the morning writing my own birthday poem during my home schooling. Standing at the front of the class in the afternoon, one of my friends read:
Me, Jon-Jon
Jon-Jon!Jon-Jon! Turning ten
In the presence of young men,
What enormous love and joy
Could gift the mighty faithful boy?
Why the sorrow? Why the pain?
Will we celebrate again?
And when earthly time has passed,
What beauty lies? What peace at last?
Jon-Jon! Jon-Jon! Turning ten
In the presence of young men,
What enormous love and joy
Should gift the mighty faithful boy?
It wasn’t often that my primary class was completely silent for a couple of seconds, before erupting into applause. One TA had to leave the room, hanky in hand. Reactions like this made me realise the power of poetry, the mesmerising effect of the written word and the respect that poetry commands from the listener.
Enriched by the introduction of poetry, life continued with a rhythm of home school, primary school and home. Punctuating this pattern came the eagerly awaited, much-anticipated holidays. Like opening the window on a stuffy day, holidays breathe happiness into our souls.
Excitement for the summer half-term holiday to the coast was mounting to fever pitch, because not only would we visit the beach, we would also be hiring a cottage near our great family friends. With what felt like half the house crammed into my usually spacious van, we set off. But all was not as it should be. For as we drove the considerable distance in the van, I could feel my chest tightening, and this wasn’t nervous excitement…
Two days into the week-long holiday, I was wedded to my ventilator, which was turned up to the highest setting possible. While I had no temperature, it seemed that rather than having an infection, my body was giving up. Breathing was increasingly hard work, and as my oxygen supply was increased to silence the saturation monitor, I realised to my delight that this could finally be it. And what perfect timing! With good friends around them, and the beach to escape to, my family was surrounded by love and happiness; I could slip away. So every evening I corralled all my energy to use the spelling board to tell the grown-ups my final words before I went. For Mummy’s best friend, I could ask her to look after Mummy when I had gone; for Susannah’s best friend I could ask her to stick with my sister through the storms of girls’ friendships; for the rest of the family I could share my excitement about going to the garden I had once experienced so clearly, my spiritual home.
One day led intractably to the next. Each morning I would
wake to another day in the heart of my family, rather than in the garden. So, the holiday encapsulated my dilemma; to stay or to go. I was so ready to go, but my family will never be as ready as I am.
Returning home on machines and monitors that were usually stowed under the seats, I was beginning to feel a sense of disappointment, in antithesis to my parents’ palpable relief. Disappointment that this wasn’t the time.
Why hadn’t I been called back to the garden?
Why was this not my time?
As well as disappointment, I even felt quite annoyed. From my perspective, everything had been perfect for my departure on holiday. For much as I love my family, my soul yearns to be in the garden forever. So I embody a paradox – happy to be here: sad not to be there. Now I was left with the irksome and slow business of getting better at home, with the knowledge that I would have to go through being that ill again, while the life I couldn’t fully join in with continued around me.
Questions turned into prayers, and prayers turned into answers. Time is given as a gift, and gifts should be received with gratitude.
I had been given the extra time so that I could use my voice to make a difference for the voiceless.
CHAPTER EIGHT
PMLD
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
A COUPLE OF DAYS LATER, I WAS SAT ON MUMMY’S LAP WITH SARAH ON THE OTHER SIDE OF THE SPELLING BOARD. Next to me, washed up and ready to use again, was my BiPAP ventilator. When recovering from illness my body even finds breathing exhausting, so for every hour out of my ventilator mask, I pay by spending a couple of hours in it. The longer I spend off it, the more tired I get. But the mask distorts my view out and, crucially, for my communication partner, makes it harder to see where my eyes are looking. Writing is reduced to a snail’s pace, but this conversation is so important, I must continue.
‘There are two ways to do this, Jonathan,’ said Mummy, clearly relieved that I wasn’t incessantly talking about going to the garden anymore. ‘You can write to the minister for education, and you can approach the media with your story.’
‘Let’s do both,’ I spelt out on my board.
‘This is not a good time to go to the media,’ she said. ‘In a couple of weeks the nation will vote on whether we leave the EU, and there will be less interest or space for stories like yours.’
‘Oh.’ Those brief exclamations can be so expressive.
‘But, on the other hand, you are still very ill, and we don’t know how much time you have left.’
So it was that I wrote to the minister and the editors of local and national newspapers, during my home school and afternoon school. On the ventilator, off the ventilator and between sleeps. Nothing could slow me down on my new mission. With a renewed sense of purpose, I sacrificed my limited energy to the cause, using my voice to call for children like me to be taught to read and write.
By mid-June 2016 I had written letters to officials, and the local media had featured my story on their front pages and on the radio. Exposure in the Wiltshire Gazette & Herald and the Wilts & Glos Standard had Daddy’s parishioners handing him the articles neatly cut out and pressed, and a stranger coming up to congratulate me at a village scarecrow event, recognising me from the picture in the paper and saying well done.
After that it went quiet, the pause of a roller-coaster carriage before it plunges down the big dipper. Briefly we glimpsed parts of the scenery before we plummeted irreversibly on the adrenalin-fuelled course set before us.
‘The cameraman will be here in half an hour,’ Mummy said. Since her phone call with the news agency the day before, the pace had been picking up, and now my story was going on the website of the Mirror newspaper at lunchtime.
‘We need something for people to sign to show their support,’ Sarah urged, as the enormity of what was beginning started to sink in.
After a quick phone call for some advice we were racing the clock. This is not how I imagine great campaigns are conceived. With the main body of text lifted from my letter to the minister for education (calling for all disabled children to be taught to read and write regardless of their label), we set to work on a catchy title. Time was ticking on. Succinct and memorable do not come easily to me. Words and phrases were banded around the table, each one tested and checked against the internet. Some good suggestions had already been used.
As the doorbell rang, the campaign ‘Teach Us Too’ had been born and as midwives, we were ready to introduce it to the cameras. After that short video there were a number of national newspapers which picked up the story; my proudest moment was seeing my poem, ‘Song of Voice’, printed in The Times. Newspapers were being bought on an almost daily basis, and as each one came into the house we all searched for the article and read it. However, when it came to the Sun, Mummy inexplicably found the article away from us children and would only present us with the folded page.
‘But Mummy, why can’t we see the full page he’s on?’ Susannah couldn’t understand it.
‘It’s a bit rude, darling,’ Mummy replied, keeping the paper firmly folded.
‘Please, Mummy, it can’t be that rude if it’s in the paper.’
Earlier that day, when the girls were at school, I had glimpsed the photo next to the article, and now saw my chance to get a better look. While I used my spelling board with a carer to back Susannah up, Mummy started to give a small boring speech about the different newspapers on sale.
‘Are you ready?’ Mummy prepared the paper for the big reveal.
Naïve, innocent Susannah could never be ready for this picture… Her arms expanded to make room for her enormous gasp, as her jaw hit the floor.
Tension bristled in the air when the Mail on Sunday came to spend the day with us – watching and commentating on my every movement, following me as I went to support Jemima on her sports day, and asking me questions at home. Unlike filming, where the camera is occasionally switched off and everyone can chat off-record, the journalist’s notebook was never closed. But it was their coverage that exposed my message to the widest audience.
Now my friends were calling me famous. When The One Show covered my story and came to film at school, they became famous too! People started writing me emails from all over the world. Some wrote to say that I was an inspiration, some wrote poems and shared recipes; one lady from Australia even offered to send us some more Lego. Much to our annoyance Mummy wrote back and said we had enough Lego, thank you. Enough Lego? My sisters and I don’t believe that is possible, and we were in a grump for the rest of the day. But it was the stories of children like me that kept me focused on making a difference: disabled people whose experience of special school was similar to mine, and parents of disabled children frustrated by a system that wasn’t teaching their child to read and write.
Interest in my story was generating enquires not just from journalists from the printed press, but now also from documentary makers. Enjoying the limelight, my instinct was to say ‘yes’ to everything, but my parents were wisely more cautious and insisted on meeting
all the prospective directors and making a final decision as a family. So mealtimes now included discussions on what any documentaries would involve, and the parameters we were happy with. Protecting my sisters from a fly-on-the-wall documentary became the defining factor, for this was their life as well as mine.
When we first met our cameraman/producer, we knew this was a man we would get on well with, who would portray our story with gentleness and humour. Nevertheless, there were real issues with filming me using the spelling board. When my communication partner watches my eyes, they do so from the middle of the board, but the camera angle from the side distorts the correlation between where I am looking and where the communication partner’s finger is pointing. To attempt to overcome this issue we tried everything – Sarah with a camera strapped to her forehead, but her forehead not square on; the camera square on but no one pointing where I looked at. Sometimes slowing the film down at least accentuated my eye movements, but then distorted any sounds over the top. In the end a variety of people were filmed using my board in a diverse range of situations – on my comfy seat, otherwise known as Mummy’s lap, in my wheelchair at home and at school, with my five carers, my friends at school, Sarah and my mother. In addition, for the final cut, there was not always a direct link between the voiceover and what I was spelling.
Other issues were easier to find solutions for. Who would do the voiceover for the film? While the documentary makers agonised over this, I had the solution and had already asked Lewis, my friend from when I had first started primary school aged four, to be my voice. His abilities in the recording booth surpassed my expectations; his patience with being able to say my words over and over again, and his perseverance in tackling some of the tongue-twisters I had inadvertently put into the script, were second to none. At the end of a long day’s recording, when we were all tired having just listened to him working so hard, Lewis was still able to crack a joke.
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