I have spent a lot of time trying to find books which have disabled characters and these are ten of the best. They cover a range of characters and impairments. My daughter Molly (age 4) loves all of these but they’re probably a bit too young for my sons Max (age 8) and Ben (age 10). Some of them are quite old and only available secondhand. Some are published in the UK and some are from America. Let me know if you have any other books with disabled characters that you love.
I have put Waterstones or Amazon links where I can, but of course some of them will be available from your local bookshop (you could try my favourite one here)
I have been reading even more books than usual to Ben during lockdown (or whatever we’re meant to call this period now). We have been choosing longer books and taking a week or two to get through them. Max often listens too.
We have just finished Wonder by R.J. Palacio which is about a boy, August, who is ten years old, has facial differences and starts a new school. It’s about how people react to the way he looks and how he makes new friends. Some parts are told from the viewpoint of his sister and his school friends. A lot of it is about his relationship with his parents, how he feels about his appearance and how he manages other people’s behaviour. It’s all the stuff that parents typically worry about when they have children who are different, or actually probably just all parents.
I make a concerted effort to read diverse books to my kids. I seek out stories about people who look different to them, or celebrate different holidays, or live in different kinds of families. I don’t think it’s enough to hope your children will see a range of people in the culture they consume – you have to proactively curate it. I’m not doing in perfectly, but I’m trying.
In the books I buy and read, I don’t protect them from potentially tricky topics. Books are a great way of introducing the beginning of something before it comes time to have a Big Chat, or perhaps there will never need to be a serious chat because books are a great way of introducing nuanced topics and having a whole series of little chats. All chats and topics are different but books have helped me have chats with my kids about flowers, racism and reproduction, just in the last few weeks. Of all the stories, I particularly seek out ones that depict disability because I want to try and provide some balance to the overwhelming majority of the stories Ben hears being about non-disabled people.
So we started reading Wonder, and I found bits of it difficult. There are sections where kids are really mean to August and I worried that I was telling Ben that kids are bullies, but reminded myself that Ben might not relate to August. Not least because his physical differences are entirely different to Ben’s. So I continued, relieved when we got to a bit where August made good friends. Ben was engaged, enjoying the story, showing no signs of distress.
There were a number of points where I welled up while reading – partly because I’m an absolute sucker for this kind of storytelling, and partly because people’s kindness often moves me to tears and August makes a really good friend in the book. There are passages where there is a danger of August being depicted as the kind of ‘inspiration porn’ that so enrages disabled people – the plucky, courageous person who is congratulated for completing an everyday task, living an everyday life. But there is also something beautiful in Wonder about the way August rises above horrible people and makes meaningful connections. His teacher makes a speech at the end: ‘It’s not enough to be kind. One should be kinder than needed… we carry with us, as human beings, not just the capacity to be kind, but the very choice of kindness’, I read to the boys as my voice wobbled around the threat of tears. August is clever, hard working and funny. He makes friends in the book, just through being himself.
When we got to a chapter written by August’s sister, Olivia, I worried because she eloquently describes her parents not having time for her when they are so distracted by her brother. I didn’t (don’t) want Ben to feel like his siblings might be resentful of him, or to plant in Max’s mind that he’s been dealt a bad hand in siblings or families. I found it hard to read the passages where Olivia doesn’t want August to come to a show at her new school, because she is embarrassed that her brother is so different, but she feels awful for feeling that way.
I realised that reading books like this is as important for Max as it is for Ben. It’s easy to forget that having a disabled sibling is, in itself, an identity. It affects so much of who Max is, what he does, and how he lives. I would love for him to see that being Ben’s brother is hard in some ways, and wonderful in others. But there are things he finds difficult, and perhaps it’s helpful for him to know that other siblings find this too. It’s very unlikely he’ll suddenly become resentful of his brother because he heard a character in a book was. And if Max is at all resentful, me pretending he isn’t won’t make it go away.
What Max mainly wanted to talk about as we read the book was why other kids, friendly and not, were behaving the way they were. Max wondered why one particular boy, Julian, was so mean and why his parents didn’t want him to be friends with August. Max has some experience of kids not liking his brother and far from it making him self-conscious about Ben it has, so far, just made him really sad, which made me even sadder.
But for every unkind character, there is a friendly one. And August’s parents are there beside him. There is a bit at the end where August and his dad are discussing the astronaut helmet that August wore all the time, for years, so people couldn’t see his face. August’s dad is telling him how much he hated the helmet: ‘The real, real, real, real truth is: I missed seeing your face, Auggie. I know you don’t always love it, but you have to understand… I love it. I love this face of yours, Auggie, completely and passionately. And it kind of broke my heart that you were always covering it up.’
‘Oh, that is SUCH a parent thing to say,’ Max groaned. ‘That’s exactly the kind of thing you guys say.’ Too right, kid, and not going to stop anytime soon…
I’ve got three kids! I don’t have much time to write blogs! And we have moved house, again, so things are as relaxed as usual round here.
In amongst the chaos and many, many boxes, Ben has been continuing to use his eyegaze computer. It travels to school with him every day and then he uses it at home for a mixture of entertainment and communication. Ben is building skills in using his eyes and navigating around software on a computer, and much of this is by playing games or other activities that he finds motivating. Like everything to do with kids learning something, anything, it’s best done through play as far as I can see.
We have various activities that he enjoys on his computer; his favourites are, unsurprisingly, stories. Some of which are ‘multiple choice’ where he has to pick the right word to continue the pre-programmed story. Others are computer equivalents of audiobooks where the entire text of a novel is on the computer and Ben can choose the story he wants, select the chapter, and then it is read out to him (in stilted computer voice, but he doesn’t seem to mind). Crucially, he has to keep selecting ‘Speak Paragraph’ in order for the story to continue, meaning that he has to engage consistently.
Ben’s current favourite book to read like this is Mr Stink by David Walliams. We have the actual book and read it to him frequently (actually I don’t, generally because I’m often preoccupied with a smaller child, but others do including my dad who assures me it is great and totes emosh). Other times Ben sits at the table reading it to himself via computer. It’s brilliant.
We hadn’t foreseen quite how fantastic the computer is for Ben and Max to use together. The laptop is touchscreen and so they can play games like, for example, Splat the Clown where Ben can splat using his eyes and Max using his finger. There aren’t many activities that they can do together like that, with total parity.
The current hit, however, is the most simple of all. By navigating through various screens within the PODD communication software Ben can get to a page which just has Yes, No and Don’t Know buttons.
Through trying to gauge Ben’s reliability of answering yes or no to questions (Ben doesn’t have a totally reliable yes or no, which is a work in progress for him and something about which I could – and may at some point – write an essay…), James invented a game of asking him sets of related yes/no questions, some of which are totally ridiculous. It is a good way of him practising giving us a clear yes or no when we know he knows the answer. He is definitely making progress on this. The thing we didn’t expect, and which is in danger of slightly undermining our carefully constructed strategy, is that Ben is now giving us the ‘wrong’ answer because it’s funny.
Oh the laughs! The advent of this game has also coincided with Max hitting the zenith of his life so far where he can successfully make every member of our family laugh. Let me assure you that watching one of your kids make the other laugh is one of life’s pure joys. Watching Eli make BOTH of the other kids laugh is very, very lovely and makes my heart sing. All the feelings.
So it isn’t just James and me asking the yes/no questions, but Max too, and Ben bloody loves it.
Sometimes when Max is asking the questions Ben doesn’t answer. Then while we are waiting, he navigates out of that page which is autonomy in action, and is the physically disabled equivalent of a child wandering off because they have lost interest. He actually then went to a different yes/no page, through a different pathway in the software (which I didn’t know you could do), and then we continued. His ability to do this, without us mediating, is as pleasing to me as all the chuckling.
To say Ben has a mixed relationship with theatre would be generous. There are numerous examples of him hating theatrical outings and our success ratio is pitifully low.
We have had reasonable success with productions by Oily Cart, who produce theatre specifically for disabled children which is inventive, imaginative and brilliant. They often adapt their shows for mainstream audiences, and even when we have taken Ben to these more hectic performances he has enjoyed them (or at least bits!).
In March this year I took Ben to a production of Not Now, Bernard at the Unicorn Theatre. We had been to productions there before – it is a lovely theatre with accommodating staff. We had a wheelchair seat at the front of the theatre space – right next to the stage with its bright lights and in front of about 60 excitable (noisy) children.
Ben struggles with this kind of thing – he is nervous in unfamiliar environments with bright lights. He still has a startle reflex so loud noises make him physically jump. The sensory overload of unexpected music and people leaping about onstage can be a bit much. And so it proved: the show started, a man came on to the stage just in front of us and there were some loud noises and that was it – Ben in tears and me unable to bring him back from the brink. I decided we had to leave.
Unfortunately our proximity to the ‘stage’ (white painted floor) meant this involved me carrying a long, sobbing 4 year old while carrying two coats and a bag – and pushing a wheelchair ON to the stage thereby causing maximum fuss and creating some inadvertent audience participation. We had lasted five minutes in the theatre and then went home. During a tearful phone call with my husband in the car, we agreed I wouldn’t take Ben to the theatre on my own again.
Of course one solution would be to not take Ben to the theatre, but this seems too depressing a conclusion. It would be to give up on something that I though I would do with my children. Broadening horizons and facilitating new experiences is stressful and often a disaster, but we have to keep trying. Ben loves stories and melodramatic performance in familiar places so there must be shows he would enjoy. Surely!
One of Ben’s most favourite things to do is to watch videos on YouTube of Michael Rosen reading poems and stories from his books. He’s enjoyed these videos for over a year and we must be responsible for hundreds, if not thousands, of views. He particularly likes this one about bending a toothbrush which is from the book Michael Rosen’s Big Book of Bad Things. There are many reasons why one might be a fan of Rosen, he has written loads of books. We have a family tradition of singing Ben a song based on his book, Little Rabbit Foo Foo, which last Christmas was staged as a play by his granny and uncle.
I found out that Michael Rosen would be reading/performing from this book in London. I booked for us to go.
We were nervous and excited, really hoping Ben would enjoy it but ready for the moment when he lost it halfway through and we all had to leave. In order to maximise the likelihood of success, we arranged to drop Max off with his uncle down the road and spent a lot of time telling Ben where we were going. So much in fact, that on anyone saying ‘Big Book of …’ Max would shout, ‘BAD THINGS!’ at us all. Ben thought that was amusing.
Our seats were right at the back of theatre (good) and at some distance from the stage (good) and we were let in to the auditorium first so we watched everyone else come in (mainly kids older than Ben) and Ben had time to get used to his surroundings. James read him poems from the book while we were waiting.
Then Michael Rosen came on stage. As he spoke loudly into microphone for the first time, we held our breath. But Ben was fine. More than fine, in fact. He smiled, he listened. Michael (is that too familiar?) told lots of stories – many with loud noises and audience participation – and Ben was happy. James and I sat on tenterhooks, laughing at the jokes but poised for the moment that Ben wasn’t enjoying himself any more. But it never came. Ben just watched over an hour of performance – smiling a lot, giggling occasionally, totally focused for 60 minutes. It was totally bloody brilliant. The boy loves a story, and Michael Rosen is really good at stories. And apparently if Michael Rosen makes sudden, startling noises in a theatre, that’s okay.
When it finished we queued up with loads of other kids to get our book signed. In the crush of us all pursuing the author, Michael walked past us and stopped to say hello to Ben. As we queued, Ben was squashed between loads of older kids and he was unperturbed and patient (occasionally accidentally kicking some kids but that’s inevitable when you can’t really control your legs; they were very tolerant). Our book was signed: ‘Michael Rosen was here’, and off we went. Everyone on Facebook was jealous.
So that’s what it’s like to take your child to the theatre and them enjoy it. It’s fun! Ben loves hearing language and words and rhymes. I am fascinated by how that really works – when a typical child learns to speak they learn the sound of letters by saying them. How does a child who can’t speak learn sounds? Who knows. But for now, we’ll do our best to stalk Michael Rosen.
The time has come to elaborate on the ‘stories’ part of ‘Son Stories’.
Ben loves stories. He’s always liked books. When Ben was almost one year old, we were on our way back from a holiday and due to huge snowstorms and a perilous motorway we made an unplanned stop at my sister Maddy’s house in Nottingham. At midnight Ben woke and was really struggling to breathe. My sister and her boyfriend got up to show us the way to the nearest hospital, where we carefully walked over the ice to reach A&E. As soon we mentioned breathing problems in a child with cerebral palsy who was not yet 1, we got whisked through to a bed where they gave Ben some drugs and a nebuliser. We were surrounded by doctors and nurses, Ben was very distressed and his breathing was really laboured.
While James briefed an Intensive Care doctor on Ben’s history, in case he needed to be sedated and ventilated, a nurse suggested I sit with Ben for a bit and do something he enjoyed to see if his breathing calmed down. So we read The Very Hungry Caterpillar. Ben smiled at the list of food like he always did, and by the time the caterpillar had become a butterfly Ben’s breathing was much improved.
The nurses said they had never seen a more dramatic response to a book.
Ben chooses by looking at the book he wants. He chose The Twits by Roald Dahl.
The Twits is a more recent addition to our library. As I mentioned previously, Ben’s a big fan of an old video on YouTube of Rik Mayall reading George’s Marvellous Medicine. His uncle Harry then bought him a box-set of every Roald Dahl childrens book and we’ve been working our way through them.
I think some people wonder how much Ben understands, how much he can learn. The kid chose the book with barely any pictures, no colours and a lot of words. He bloody loves stories. Even when his brother is trying to run over his hand with a truck.
An hour later I found Max sitting in the chair, drinking milk and watching TV. How many other kids get to relax unsupervised in furniture that valuable?
(Apologies for blurry phone photos – hard to take high quality pictures when you’re busy reading)