Jonathan is a member of the FLARE group, the young disabled people's advisory group to the Department for Education supported by the Council for Disabled Children. Here he writes about the power in sharing stories.
This National Storytelling Week gives us a chance to celebrate the art of telling and sharing stories; but what if you can’t read to access them or write to share them? That was the situation I was in when I attended special school with the label PMLD (Profound and Multiple Learning Difficulties). Like many other pupils given that educational label, I was not taught to read and write at school because of assumptions made about my intellectual capability based on my outward disabilities.
When I was seven, my mother removed me from special school for an hour a day to teach me to read and write and do basic numeracy. Being non-verbal, before that she needed to work out how I was going to access the curriculum. Although I have very little control over most of my body I am able to control my eyes, so with letters and words stuck to a Perspex board I learnt to read and form basic words, with one of my carers holding the Perspex board in front of me and pointing where I am looking. With my access to learning found I didn’t look back, and two years after I started learning to read and write I had caught up with my peers and joined my local primary school for year five.
Listening to stories had always been one of the activities I enjoyed the most, so the joy of being able to read myself was immense. Just think for a minute about what being literate means for you. We use literacy for enjoyment, learning, escapism, communication, socialisation, education, empowerment, employment, relaxation, sharing and inclusion. Now imagine also being unable to speak. For us who are non-verbal, being able to read and write is not just a life skill, it is our voice. Now I spell out exactly what I want to write and say on an alphabet board stuck to Perspex and held in front of me.
Yet all the time I was enjoying the freedom of my voice, I was acutely aware of my friends and the thousands of others labelled with PMLD and not taught to read and write in school. During the summer of year five I became quite ill and very excited that my time to go back to Jesus’ garden had come. When I was young I had been very ill in hospital and had visited Jesus’ garden, a wondrously real place I can’t wait to live in forever. In the long and laborious process of getting better, I felt God had given me extra time to make a difference for children like me. As a voice for the voiceless I began to campaign for all children to be taught to read and write regardless of their educational label. Now formed as a charity, Teach Us Too, I spend time talking to trainee teachers and professionals about the importance of literacy education for all, and the danger of assumptions based on educational labels.
As I have discovered during my talks and in the feedback from my book, Eye Can Write, there is power in sharing our stories. And until all children are taught to read and write I will continue to share mine in the hope that it will enable more non-verbal pupils to share theirs.