Wonder

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…

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A space rocket for Ben

In December Max and I went to Ben’s Christmas play at school. It wasn’t what you would call a traditional nativity play – each class did a segment around a theme and Ben’s bit was mainly based on the story of the three pigs and the big bad wolf! This is the second school Christmas play I have been to and they are always a triumph of logistics and imagination.

One of the older classes did a performance based on space, and were dressed as astronauts while singing ‘All About that Space’ to the tune of the Meghan Trainor song. This happens to be one of Max’s favourite songs and he was outraged, ‘It’s All About That BASS, not SPACE!’

Then, as we watched the kids Max said loudly, ‘Astronauts are not disabled.’

‘Um, right, don’t they look great?’ I said.

‘Astronauts cannot be in wheelchairs’, he said.

Luckily for me the next stage of the play involved chocolate coins being tossed in to the audience, so Max was distracted and I didn’t have to deal with the inclusion-disability-space conundrum immediately. But it stayed with me.

Max is as accepting of difference as you could hope a three year old to be. He’s a kid and they deal mainly in black and white and are hugely influenced by what they see around them. So in the same way that they might think women can’t be sea adventurers because there’s only one poxy female Octonaut on the TV programme, they think astronauts can’t be disabled because they haven’t seen one.

And of course they’re sort of right. It’s unlikely there will be a wheelchair-user visiting the International Space Station any time soon. But it’s also pretty unlikely that any of the children we know will grow up to be astronauts despite their aspirations but we don’t therefore tell them it’s impossible. Right now, they can pretend to be whoever they want to be.

The whole point of childhood is to have dreams and imagination, and the role of parents is to make the landscape of their aspirations as wide and ambitious as possible. That’s why we read fictional books. So in the same way that I don’t tell Max that he might not meet the stringent selection criteria for space travel, we also don’t tell Ben that he can’t be an astronaut because he’s disabled. In light of Max’s comments at the play, we spend quite a lot of time talking about how Max AND Ben can be astronauts. And Molly, come to that (depressingly lack of female astronaut portrayal also).

Part of this issue is about representation – kids needs to see disabled people (and girls, and women, and non-white people, etc etc) in their books and on TV, doing the same things that the able-bodied, white boy characters get to do. That’s what the Toy Like Me campaign is all about – calling on the toy industry to better represent disabled kids. There’s a lovely story about their campaign here

While we wait for the rest of the world to catch up with inclusion, I seized the opportunity for action provided by a massive pile of cardboard following delivery of a new sofa from Ikea and…

I now present to you: THE WHEELCHAIR-ACCESSIBLE ROCKET!

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My eight years of architectural education have not been wasted. It’s big enough for Ben to get in in his chair and still have room for his brother. Max has decorated it with stars and planets, it has a door to shut out the adults, and interior lighting courtesy of the pound shop. It’s a bit crude, not photogenic and an apostrophe has dropped off but the kids love it.

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James, Max and Ben have between them created an elaborate bedtime routine which involves turning all the lights off, Max climbing in to Ben’s bed, and then them playing with various light toys. For slightly obscure reasons, this is called a disco (though it involves no music). Therapists would call it Sensory Play.

We recently bought Ben a Buzz Lightyear toy to reward him for all his incredibly hard work using the eyegaze computer and along with the glow-in-the-dark stars and planets and watching clips of Tim Peake in space, the whole thing has become a bit space-themed. Now, the disco often starts with a little trip in to the rocket and a pretend voyage to the moon before the boys get in to bed.

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If the world won’t provide the imaginative horizons my kids need, we’ll have to create them ourselves.

‘To infinity, and beyond!’