If you read this blog regularly, you have probably gathered that books are a big part of my life. When I was a kid, my head was only out of one long enough to tell other people about what I was reading. Books kept me happy through wet school holidays or distracted me from making sandcastles on the beach. They made me smile and laugh when I was miserable. They took me to places, other countries, times or people’s minds and taught me some of the most important things I know.
My greatest frustration since being parent is not having much time to read for fun any more. One of my greatest parental pleasures is reading to my kids. I love seeing them discover for the first time books I have read and re-read for decades. And I love finding new authors I wouldn’t know but for having them.
But books, like all things in life, have taken on a new meanings since having Boo. Books aren’t just books now: they are learning tools and therapy aids. I love to read to Boo for the sake of reading to him (and he has always loved books) but I use them much more self-consciously than I ever did with his sister to teach him things by getting him to point (a developing skill) to named images and sound out noises or the speech sounds his therapist has given us (anything to get away from those bloody flashcards I see in my sleep). It hasn’t dampened my love of reading to him, though. Books are so much more than building blocks of sounds and images, after all.
But one thing has started to bother me increasingly since I started reading to Boo. What do books tell him about the world he lives in, I wonder?
I worry that they tell him that he isn’t supposed to be here.
When was the last time you picked up a children’s book in which a main character or even any character was disabled? I asked Sissyboo this a few weeks ago. She mentioned the cousin in The Secret Garden, a horrible little boy, neglected by his father, who becomes nice and around the same time (a horrible non-coincidence) learns to walk and not be so disabled any more after making friends with Mary and Dicken and learning to plant things. Of course, The Secret Garden was written 100 years ago and things have changed. People surely (please) don’t assume physically challenged people are morally challenged any more. But what recent examples of books are there to prove we’re more enlightened now? Sissyboo’s suggestion was Frank Matthews in The Dumping Ground, who has CP like Boo and for whom she has quite a soft spot. But of course, that’s TV. I don’t know if Frank is a character in the books as we haven’t worked our way through them all yet. Sissyboo is a bit too young for Tracy Beaker, despite her loving the books. Boo certainly is.
Sissyboo scratched her head. I told her I hadn’t asked her a trick question and I was struggling to think of examples, too. And apparently we’re not the only ones. I was delighted recently to learn about Quentin Blake’s new book, The Five of Us, which isn’t going to be about disability as such, but which will have several characters who just happened to be disabled at its heart. But my delight suddenly turned to dismay when I realised what should have been painfully obvious. This was such an extraordinary occurrence that this was considered news by all major papers and news channels.
Of course, books don’t have to reflect our lives. I didn’t read Robinson Crusoe when I was 9 because I fancied living on a desert island (let me tell you: I would be rubbish at surviving on a desert island) or because I identified as a child with what seemed at the time to be a very old man. I read for escapism to read, about lives other than mine.
But it’s one thing to find in books a world you can escape to. It’s another to read as a disabled child and find you live in a world that is unacknowledged.
So when I read recently about a picture book called Tommy at the Farm: The Little Pig about a boy who just happens not to be able to walk, and who travels about on a tractor-cum-wheelchair to find his nan’s glasses, I just had to buy it for Boo.
The book is inspired by Thomas, a little boy who lives in Garstang, Lancashire. His story could be Boo’s. In fact it’s uncannily similar. Born a few months before Boo and prematurely like Boo, Thomas also has PVL, a form of brain damage that has led to a diagnosis of spastic quadriplegic cerebral palsy with low trunk tone. How often have I read those exact words on reports about my little boy? But Thomas, like Boo, is not a condition, he is a little boy who loves swimming, singing and reading and sounds like one very determined character. (You can read more about Thomas here.)
And now, thanks to Thomas’s Uncle Adam, he can read about a little boy like himself. Tommy’s disability is not mentioned in the book at all. This isn’t a book about disability; it’s just a very simple story in which the main character just happens to move about on wheels like all the most stylish kids do.
The book is intended for children aged 2 and up. It’s a 15-page hardback with thick pages that are durable and easier to turn the pages of when your grasp isn’t reliable as Boo’s isn’t. There are also no staples and so no ouch moments. The words are simple and follow a reassuring pattern as Tommy goes about the farm asking each of the animals about the mysterious disappearance of nan’s specs. The pictures in the book are bright and clear, easy to see and great for getting Boo to point to. Where’s the cow? What noise does a sheep make? Boo likes it a lot and I like reading a book with him which is about a world he recognises (pigs wearing glasses aside).
Knowing that buying this book also provides funds to help Thomas continue with his treatment at the Bobath Centre in London for therapy that will help him achieve the independence he deserves makes me like it even more.
And then there’s the most unexpected delight. After reading it to Boo for the first time and telling Sissyboo the story behind the story (the story of Thomas) she did one of her disappearing acts. Thirty minutes later, she came back with two illustrated stories of her own about her ‘special brother Boo and all his CP friends’ and asked me to publish it there are then. That was several weeks ago and she is still making for and about him in her spare time and asking me to Google self-publishing at least twice a day.
Who knows if Sissyboo will ever write and publish her book. For now, please think about buying Tommy at the Farm. The book costs £8 (P&P is £2.50 and ours came in a lovely gift bag, which Boo has taken a shine to). You can find details on the book and how to purchase it here or email firstname.lastname@example.org. At the very least follow @Tommyatthefarm to find out what Tommy and Thomas are up to next. I suspect great things.