Explaining disability isn't a child's job

By Louise Kinross

What Happened to You? is a new children's book about a boy with one leg who is besieged with children who ask him what happened, or exclaim "You've only got one leg!" Sometimes he doesn't feel like explaining, so he asks them what they think happened, and they have some pretty outlandish ideas: Was it a shark? A burglar? 

I knew this was an important book when I posted it and my colleague Alison Hughes commented: "I have three copies!!!" Alison is a disabled parent who works in our Holland Bloorview Foundation as Senior Officer of Stewardship, and is always on the lookout for stories that reflect disability to read at home. I wanted to know why Alison rated the book so highly. So we did an interview over e-mail.

BLOOM: What are the key messages of the book?

Alison Hughes: I think this is a super important book for all kids.

For non-disabled kids, the message is 'It's not polite to ask someone about their disability before you even know their name. No one owes you their story. You aren't entitled to have all of your curiosities answered.' Truthfully, this is an important message for parents to understand too.

For disabled kids, the message is: 'You don't owe anyone your story.' 

It's important for parents to have these discussions with their children at home. I like what fellow disabled mom Alex Wegman told me about this: Disabled kids don’t owe anyone an explanation. Instead, we teach our kids at home that curiosity is natural, and that sometimes our curiosity just ends with curiosity. People deserve respect regardless of whether we understand why they are the way they are or not. We don’t demand that our curiosity be satisfied before we can give someone the respect they deserve just by virtue of being human.

BLOOM: Why would you recommend this book to other parents?

Alison Hughes: Because we need to get comfortable talking about disability at home. Don’t leave it to disabled people in the park or grocery store to educate your kids. Don’t wait for the uncomfortable encounter that will inevitably create labour for a disabled adult or child.

Author James Catchpole provides thoughtful questions and discussion points in the back of the book to help guide these conversations with your kids. Talk about this at home.

BLOOM: The advice is quite different from what we often hear from rehab professionals or other parents about how children should respond to questions.

Alison Hughes: James is a disabled adult and a literary agent and he and his partner Lucy have an Instagram account called The Catchpoles. They describe What Happened to You? as 'The first ever picture book addressing how a disabled child might want to be spoken to.' We need more disabled writers, as opposed to parents or other 'experts' writing books like this. I use experts cautiously, because no one is more of an expert than someone who lives it. We know there's a lack of disability representation in books and media, and that not all representation is good.

This book flips the script on a common narrative which is 'Just ask.' We often encourage kids to be curious and to ask questions of peers with disabilities. But in the same way that we provide boundaries for our kids while they're out and about in the world, we have to create boundaries and expectations around disability, too. We encourage our kids not to stare when a child has a disability. But for some reason, it's assumed that asking questions is the opposite of staring. It's not. Neither approaches are appropriate or kind to disabled folks. 

BLOOM: I notice on the back of the book he has a note to parents that while it's great to educate your child generally about disabilities, children need to know 'it's not polite to ask people you don't know personal questions.' I think that is missed in a lot of discussion about disability.

Alison Hughes: Disabled kids shouldn't be expected to be educators when they're just figuring out their place in the world. It's othering, jarring, repetitive and tiring.

BLOOM: As a person with a disability, did you experience similar questions when you were a child?

Alison Hughes: I think through self-preservation and in a never-ending bid to be positive, because being a positive disabled person can be part of surviving disability, my brain has blocked out a lot of events that anyone would view as hurtful or harmful. It’s not because they didn’t exist, but keeping them close would have dampened my joy. And I do have a lot of joy in my life. I absolutely had these questions, especially because crawling was easy for me, so at an inaccessible playground I was scooting around on my hands and knees and left my chair at the side. I can’t remember my answers or how I felt in those moments.

But everywhere and anywhere I go today, especially if I go alone, I'm met with these intrusive questions and uncomfortable encounters. Often people comment on how sad my life must be. People offer to give me help and even if I say no, they do. 

While I truly believe folks like to connect and want to understand and be kind, asking invasive questions to a stranger who isn't your friend is wildly inappropriate. I need to work on unlearning that myself. I'm so used to folks asking me questions that I too ask other people questions when I ought not to. We all deserve boundaries and respect. I need to relearn how I respond to questions that are directed at me and how I behave when I meet new people, so I don't do this to others. 

BLOOM: Would this have been a useful book for you when you were a child?

Alison Hughes: Yes, it would have been helpful for me to learn at a young age that I don’t owe anyone my story. I can share when and how I feel safe to do so. With strangers is not that place.

I also think kids are generally quick to adapt. If parents and adults can better prepare kids that they will see different bodies when they're out and about, and that all bodies are good and wonderful, we will make the world a safer space for disabled kids to navigate. 

BLOOM: Is there anything else you like about the book and how it's written or illustrated?

Alison Hughes: The images are wonderful and James' likeness as the boy Joe is beautifully portrayed. It’s a great read. It plays out like a real and true playground encounter and thoughtfully and meaningfully provides guidance on how to have conversations with kids about disability. I give it a 10/10.

What struck me was my child’s response, at age 4 1/2 and with a disabled mother: “But where did his leg go? Maybe he will write another book and tell us!” So I have work to do.

I just love the conversation disabled adults are having about this book. It's a very welcome change from a lot of the less helpful narratives that exist on bookshelves. It helps us talk to our own kids and is great to share with kids who don’t have constant exposure to disability. I bought three copies. One for our house, one for my child’s kindergarten classroom next year and one to gift. I encourage everyone to order What Happened to You?

Watch author James Catchpole read his new book in this video. Follow The Catchpoles and check out their six favourite kids' books featuring disability: El Deafo; Mama Zooms; This Beach is Loud!; Frida Kahlo: Little People, Big Dreams; A Kids Book about Disabilities; I Am Not A Label.