This is a book my mother sent me after seeing twelve-year-old Jonathan interviewed on TV and looking up his story.
Can you imagine not being able to speak or communicate? The silence, the loneliness, the pain. But, inside you disappear to magical places, and even meet your best friend there. However, most of the time you 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.
Jonathan Bryan has severe cerebral palsy, a condition that makes him incapable of speech or voluntary movement. He was locked inside his own mind, aware of the outside world but unable to fully communicate with it until he found a way by using his eyes to laboriously choose individual letters, and through this make his thoughts known.
I knew this was a special book, but was unprepared for the emotional impact. It is a book of two halves – the first part is written by Jonathan’s mother and charts the events leading up to the accident that caused Jonathan’s problems. The list of life-threatening difficulties he has endured is shockingly long, as is the number of medical interventions and trips to hospital he had needed. His gritted courage and determination were evident in the fact that he simply hung on in there and refused to die when the odds were stacked against him, time and time again.
But what for me was a source of heartbreak and intense frustration was his treatment at the special school where he was simply being warehoused. It brought back far too many unhappy memories of another bright boy whose education was severely compromised because expectations about his ability were set far too low. This book is a testament to Jonathan’s own intelligence and passion, as well as a tribute to a mother who refused to listen to the experts and was guided instead by her own instincts about her son. She taught him to read and over time, they found a way to allow him to express himself, even though it is laborious.
Jonathan’s own feelings about being trapped within his body without any way to express himself, while forced to watch the same TV programme designed for developing infants should be a wake-up call for everyone in Special Needs education. I very much hope the politicians he has met will take note of what he is saying and realise that while he is remarkable, there are probably many other children and adults with active, creative minds also trapped by their bodies. I’d like to think as a country we will take on board Jonathan’s plea that everyone should be taught to read and write, using all the technology available, unless it becomes apparent that it isn’t appropriate, which is not the case now.
In the meantime, go and track this book down. It is an emotional read, but also very uplifting. Jonathan’s poetry will stay with me for a long time…