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What it is like to be trapped in a disabled, non-verbal body with a sharp mind
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. Labels attached to my dysfunctional body. 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 all of my eight years these labels had defined me. Expectations founded on my outward appearance. But more than the rest, the silence. Shrouding my personality, silence suffocated my identity – my very being sealed shut; with my loves, passions, dislikes and sharp mind deadened in the soundless void.
My name is Jonathan Bryan, and I am 13 years old; above is an extract from my memoir, Eye Can Write, in which I attempt to describe what it is like to be trapped in a disabled, non-verbal body with a sharp mind. I am also a blogger, you can read Eye Can Talk here.
Like most children in my physical condition I was labelled with Profound and Multiple Learning Difficulties (PMLD) upon entering the educational system despite no one having found a reliable way for me to access the curriculum. Consigned to a sensory class I spent the majority of my time in special school physically stimulated and mentally switched off. Unfortunately, often the non-verbal child is treated as a pre-verbal toddler, with cartoons and large rhyming books to match.
When I was seven my mother removed me from special school to teach me to read and write. Imagine the outcry if able bodied children had to be removed from their mainstream school to learn basic literacy and numeracy. Yet there are many children with Special Educational Needs and Disabilities (SEND) being educated outside the school system.
The great tragedy is, for a non-verbal child like me, being illiterate shuts off the only way we can independently communicate exactly what we want to say. For us, being able to write and spell is not just a life skill, it holds the key to living life in all its fullness.
In my book I try to demonstrate the enormous difference being able to spell made to me; telling my family and friends what they mean to me, filling my free time with activities I had described, attending my local primary school and participating in class discussions, sharing my faith and expressing myself through my writing. When I learnt to spell, life became fuller, richer and deeper.
Through all the joy of becoming unlocked, this one question nagged me the most: how many other children labelled with PMLD are not taught to read and write?
Galvanised to try and make a difference, I have set up a charity, Teach Us Too, promoting an education system where all children are taught literacy regardless of their label. We aim to do this by challenging attitudes and assumptions based on labels; influencing educational practice and encouraging ambition; and sharing good practice for practitioners and parents alike.
As a voice for the voiceless I will continue to speak up for children yet to be unlocked.
Let us know your experience or thoughts on this, have you ever felt that decisions have been made about you without your input? Do you feel that your impairment is seen before your personality or skills? We'd love to hear from you in the comments below.