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I Talk With My Eyes

January 27, 2017

A beautiful piece from today’s Guardian.

At last I am able to tell my story in my own words. When I was born in 2006 my parents were told I had cerebral palsy and renal failure; the MRI scan of my brain was one of the worst the technician had seen. My early years were a blur of hospital stays, sickness and prayer combined with my family’s love, which carried me through those long days of pain and uncertainty.

Growing up in Lechlade, a small town in Gloucestershire, enabled me to be part of the community, and I joined my peers at the local preschool, despite being in a wheelchair and having no speech. There were never any questions raised about my ability to participate in activities, and I have fond, fun memories of those days. Like most children, I started school aged four, although I attended a special school.

At first I enjoyed my time, making new friends and having fun with my lovely teacher – who made lessons engaging, varied and entertaining. Once a week I attended my local primary school, where I joined in with my able-bodied peers for the afternoon. That first academic year laid the foundations of friendship for me with children in both schools, boosting my self-esteem.

Can you imagine being constantly stuck in a reception class? I turned five, then six, then seven; my learning was squeezed into one afternoon at my primary school, while the rest of the time my brain was slowly shutting down at special school, where the syllabus never progressed. On top of this, the sensory curriculum I was subjected to became increasingly degrading: nursery rhymes, baby toys, and teachers talking to us like we were deaf toddlers. On and on this “education” continued, shutting off my ability to reason and forcing me to retreat in on myself. Outwardly, I looked vacantly stupid (giving credence to the idea that academically there was very little going on); inwardly, I was amusing myself, lost in my own thoughts. But I had no way to communicate.

When my peers were seven and starting year three, my mother took me out of special school for an hour a day to be taught to read, write and do basic maths. The previous summer I had done some work on phonics at home using an eye gaze computer. It was frustrating because the computer couldn’t read my eyes very well, but my mother and carers could – and so I found a way to learn. Looking at letters, words or numbers Blu-Tacked on to a Perspex board, I sat opposite my communication partner, who watched my eyes and pointed to the square I was looking at. Initially, progress was slow and during the third week of term I was getting bored and beginning to switch off. Thankfully, my mother was given advice to make the lessons more challenging; for example, increasing the written vocabulary I worked with and quickening the pace.

I haven’t looked back since. We moved through the early curriculum, and ended in the summer doing year-one work. September brought a renewed pace – with home education filling every morning and visits to mainstream school increasing to two afternoons a week. By February I was using a spelling board for all my communication. By year five, two years after I started literacy and numeracy lessons, I had caught up with my peers and joined my local primary school full-time.

Being able to communicate has transformed my life. I can now hold conversations with family and friends. Reading and being read to bring me great pleasure, and it was my immense privilege to meet my literary hero, Michael Morpurgo, who has kindly written the foreword to the book I’m writing. I have a blog, Eye Can Talk, and have entered literary competitions. And I can now share my faith, which is the most important part of my life.

I am keen to make a difference for children like me. I have started a campaign for non-verbal children to be taught literacy, and have met the minister in charge of special education, Edward Timpson. Never judge a book by its cover; never look at a child like me and assume we are not worth teaching.

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