Why do you flap your hands in front of your face? by Julia Jones

I am one of many people currently reading The Reason I Jump: one boy's voice from the silence of autism by Naoki Higashida, translated by novelist David Mitchell and his wife Keiko Yoshida. It's a unique and beautiful piece of writing from a severely autistic thirteen year old who still (he's now aged sixteen) cannot reliably control his body or hold a spoken conversation.
David Mitchell wrote an article in the Guardian explaining his personal involvement (his son is autistic) and the book was also read on Radio 4. When I mention it to friends they say, “oh yes, I think I heard that” or “I know the one you mean”. The hardback edition stands at #2 in the Amazon top 100 books and is reprinting: the kindle edition is unobtrusively available at #103. I am already thinking of friends to whom I want to give The Reason I Jump. Not because they are parents or teachers of autistic children but because it speaks about the imperfect relationship between body and mind and the importance of communication in our understanding of what it mean to be human.
This book is eloquent – yet Naoki Higashida's situation is that he cannot reliably communicate. He explains how his words “flutter away” from him; how the sounds which come out of his mouth often bear no relation to what he is trying to express. “When there's a gap between what I'm thinking and what I'm saying because the words that come out of my mouth are the only ones I can access at that time.” He knows that his voice often sounds “weird” – too loud, too soft, bizarrely toned. “When my weird voice gets triggered , it's almost impossible to hold it back and when I try it actually hurts, almost as if I'm strangling my own throat.” He conveys his despair “I used to wonder why Non-Speaking Me had ever been born.” Page after page bring the tears prickling to my eyes.
Illustrated by Kai and Sunny
For David Mitchell and Keiko Yoshida, the parents of an autistic child, the discovery of Naoki's book in its Japanese edition was life-changing. “Reading it felt as if for the first time our own son was talking to us about what was happening inside his head, through Naoki's words.”
I was drawn to The Reason I Jump because my stories include imagined versions of people who find “normal” life especially difficult – Skye in the Strong Winds trilogy, Angel and Peter in my next (untitled) book. I was surprised to notice how relevant some of Naoki's explanations are to my mother's current situation as Alzheimer's makes it harder for her to say exactly what she means. I remember what a difference it made when I found the particular volume (Contented Dementia by Oliver James) that helped me understand that although mum's access to words and memories was becoming more and more frustratingly difficult, her feelings were unaffected.
Naoki explains:
 One of the biggest misunderstandings you have about us is that our feelings aren't as subtle and complex as yours. Because how we behave can appear so childish in your eyes, you tend to assume that we're childish on the inside too. But of course we experience the same emotions as you do. And, because people with autism aren't skilful talkers, we may in fact be even more sensitive than you are.

Alzheimer's is just one of several different words we could substitute for autism here, I think.
The Reason I Jump is structured to offer answers to questions: “Why don't you make eye contact when you're talking?” “Why do you make a huge fuss over tiny mistakes? “Why do you memorise train timetables and calendars?” “Why do you flap your fingers and hands in front of your face?”
Here's Naoki's answer to that last one:
Flapping our fingers and hands in front of our faces allows the light to enter our eyes in a pleasant filtered fashion. Light that reaches us like this feels soft and gentle, like moonlight. But 'unfiltered' direct light sort of 'needles' its way into the eyeballs of people with autism in sharp straight lines so we see too many points of light. This actually makes our eyes hurt.
That said we couldn't get by without light. Light wipes away our tears and when we're bathed in light, we're happy. Perhaps we just love how its particles pour down on us. Light particles somehow console us. I admit this is something I can't quite explain using logic.

Naoki Higashida
No, Naoki, you can't explain it. You're a thirteen-year-old spelling out your thoughts letter by letter, pointing at an alphabet grid that your mother made for you. You can't give us a clearcut answer with a uniformly-replicable solution but you can express your sensations – memorably. You also create fairy stories and fables; you help us understand your feelings of friendship with nature. “However often we're ignored and pushed away by other people nature will always give us a good big hug here inside our hearts.”
As David Mitchell says in his introduction, you are a writer, Naoki Higashida, “an honest, thoughtful, modest writer.”


Lee said…
Thank you for this. I'm going to order it straightaway.
CallyPhillips said…
This is so interesting. I am currently working on the advocacy slots for the ebook festival and have been slogging away with Jock Tamson's Bairns (an attempt to engage readers with stories talking of similiar 'disabilities') Not, I have to say, with much great success even when giving the stories away for free. And then a 'well known' writer with a bit of clout and marketing welly behind him jumps in there (no pun intended) and suddenly the whole world is talking about autism. My little 'Angus isn't interested' which recently graced McStorytellers and will now be in Jock Tamson, seems so vulnerable and insignificant against such a tide. As indeed does A Week With No Labels.

And I found something out about myself. There's just that brief moment of- YES lets give it its name- JEALOUSY that someone else is getting the story out there. It lasts only a nanosecond of course because this is not about ME its about Autism awareness and after that moment I'm so happy that at least someone 'mainstream' is fighting the fight. There is a bit of a downside though, ( is it a bitter aftertaste?) as it really makes me wonder whether it's worth me bothering to fight my wee Guerrilla Midgie corner. I'm trying to stick with the Tolstoyian notion of 'adding my small light to the sum of light' but it does make me wonder if I wouldn't be better spending my time out in the sun reading Naoki, than writing. I know its all about the stories but unless those stories get readers... I'm off to work on ego reduction for a bit and remind myself what matters. Not me (or my writing) that's for sure. Today, in the sun, retirement looks like a much easier option.
Lee said…
Cally, I understand your envy, but it's something we all have to face. David Mitchell may be well known, but he also happens to be a very good writer. And here he's not using his own fiction as a vehicle to peddle an agenda - to put it bluntly - which for the most part only produces unsatisfactory work, but is translating an account of first-hand experience.
CallyPhillips said…
Of course Lee, but it's not envy. I appreciate that David Mitchell is a 'very good writer' I think I am too. (opinions doubtless vary) Nor am I using my own fiction to peddle an agenda (not that I'm implying that that's what you're saying in your comment of course!) but, like David Mitchell, in my advocacy work I am translating accounts of first hand experience. So I do feel that we are on a level playing field in that respect as well. It's not envy, just a bit of frustration that unless one has marketing clout the 'message' struggles to get across.

Please feel free to download a free copy of Jock Tamson's bairns http://www.hoampresst.co.uk/free-downloads.html and then you can give me the benefit of your OWN opinion as to whether I'm a 'good writer' or just an envious wannabee peddling my own agenda. I'd be really interested to know.
And that free offer is open all round. If I'm some deluded fool who is only doing all this for self aggrandisement and should really spend more time sitting in the sun reading 'really' good writers I'd be happy to know that. Seriously.

And thanks Julia because your blog gave me the kick up the arse to actually pull all the Jock Tamson stories together and get the ebook out there today. And resolved my FREE dilemma. It's about raising awareness, not about money. I hear Dan Holloway cheering in the background as Guerrilla Midgie takes an executive decision to start publishing FOR FREE.
Dennis Hamley said…
Cally, we all feel intense jealousy when e find someone has written a story something like our own but better, but it doesn't stop us. Our words and thoughts are as valid as theirs and need to be heard. So don't lose heart. Julia, this book sounds marvellous. I'm glad you mentioned Comfortable Dementia. Kay refers to it a lot when she cares for clients with dementia and is appalled at official attitudes to them, which are based on total ignorance. One of my mentorees is not only writing some super books but is also investigating the use of poetry with dementia sufferers and already some wonderful results have come out of it.
Kathleen Jones said…
Thanks for posting this Julia - I haven't time to read it at the moment, as I'm staring at deadlines, but will read it soon. I have two autistic grandchildren, so will also send it to my son.
Cally - I know exactly how you feel - it eats into your insides. Just keep writing and putting it out there!! I'm cheering alongside Dan, though I haven't got the pom poms and the ra-ra skirt!
Bill Kirton said…
I thought the David Mitchell article was very moving. (He's one of my favourite authors anyway.) My wife bought 'The Reason I Jump' and sent it straight to my sister (who has an autistic granddaughter) before I had a chance to look at it, but the extracts are stunning and really enlightening about the condition. We really need to redefine what we mean by 'normal'. I'll be getting my own copy. Thanks for extending the life of the article and telling people about the book and its remarkable author.
Lee said…
OK, Cally, I'll give you my opinion, but only privately. Be warned, however - I'm a lousy critic (and no, this isn't false modesty).
Lee said…
Something else, though admittedly OT to JulIa's post: I'd love to see a piece or two here about envy. It's a tricky one which most of us have difficulty admitting to.

A few days ago, I began reading a novel which made me want to throw my PC out the window, though it's new enough for me to have merely put my head down on my desk and howled. Never in a kwakabazillion years would I ever write as well as this bloke - and he's young enough to be my son.
julia jones said…
It's Thurs and I'm just home from sailing to Lowestoft to give the Kessigland kids a days scrabling over PD. Fascinating comments - with some pretty darned good honesty and dialogue. I don't mind about David Mitchell one way or another (when I gave one of my sons one of his books he found it 'unreadable') but I honour his honesty when he says that Naoki's book reminded him how much worse his son't autism if for his SON and not for the parents. I think I have to remind myself about that with Alzheimers, just occasionally. Cally, this is an exceptional book, Naoki is delicate, perceptive, heartrending. But it's not perfect, it's not comprehensive. It's a poetic little Japanese boy who would clearly respond to Sue Price's fairy tales. Then write some of his own. I'm going to treasure it but heck, I can treasure others too - and one of them AS YOU KNOW - is No Labels

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