It’s a rare occasion indeed when the opportunity arises to come to a discussion on a subject that few people seem interested in talking about anymore, yet a small handful of us are so passionate about still. The questions remain. Principally the issue of just why it went so wrong.
Hotly anticipated upon release in 1997, Danny Boyle’s film starring Ewan McGregor and Cameron Diaz never even remotely lived up to…
“No”, sighs my sister. “It’s not about that”.
“This is a panel discussion between three people who’ve faced serious challenges”.
I hastily re-check the programme. Where’s Diaz? Why do I want to sit in a darkened room and hear people talk about disability?
“No, not ‘disability’ – that’s not the word” snaps my sister. I suppose I ought to pay attention to her, given that this is an area she works in. Also, she’s angry. “I’d prefer to say this is about communication needs”.
And that’s exactly what this is. Actually, it says exactly that in the programme. Each one of the writers has extensive personal experience with communication needs and difficulties, and each one has written a book which illuminates the experience of these difficulties.
Jemma, the young protagonist in Penny Joelson’s novel, I Have No Secrets, has cerebral palsy. Unable to talk or move, her thoughts and feelings are given voice through the first-person narration of the novel. Jemma feels patronised and misunderstood but cannot respond. Penny quotes the 1Voice charity to highlight that “twenty three thousand people in the UK cannot tell their family they love them or call a doctor”.
In Patient H69, the account of her sudden journey into blindness (and long recovery back to sight), Vanessa Potter has written something of huge value – both to other people who may suffer from this extremely rare illness as well as to the scientists who have had precious little documentation or case studies to work from. What she documents is insightful and surprising. Her condition is “frightening, weird, but it made me very curious”. She is determined to express and record what is happening to her, something that only she can truly experience (if not understand).
Using fiction to give a greater understanding of the communication needs of autism is the third writer, Jem Lester. As he tells us, a quick dictionary search on the etymology of the word ‘shtum’ (the title of his novel) revealed the original meaning of ‘voiceless’ – which is a description that fits perfectly for what is under discussion between all three writers. How can challenges and experiences such as these be communicated? Who will speak for those with no voice?
Each book here is a means of communication, a means to connect, an attempt to throw light upon human situations that most of us are still in the dark about. Also – they were all very funny. That probably doesn’t come across in the above.
I picked up a copy of Shtum for my sister-in-law and her husband. Their little boy (my nephew) is autistic. Hearing Jem Lester speak about his son helped to illuminate how my nephew might think and the discussion had moments of small revelation for me. I can’t tell how much this book will reflect their own experience – but hopefully there is something in there that they themselves can connect with. I expect there could be.
A Life Less Ordinary was sponsored by the NASUWT.