Thursday, October 1, 2015

Seeing Disability in Children's Books

I saw the duck-faced girl a few weeks before I read Wonder. It was at the Wisconsin parish church during the Sunday Mass in which my nephew Fred was being baptized; the girl and her family sat toward the front on the other side of the aisle.

I didn't know what name to give her facial deformity--I recognized it as a syndrome of some sort, one I thought I'd seen before--"duck-faced," while crude, was as close as I could mentally get.

I didn't stare at the girl or talk to her or have anything to do with her. I was mostly concerned with the heavy weight of baby Fred in my arms, how he smelled like sweet cloves. I probably would not have remembered the girl, but then I read Wonder, and I thought, oh, this is the same thing. So I googled it--the medical condition is never given a name in Wonder--and it's Treacher Collins Syndrome, a specific genetic mutation that results in craniofacial abnormalities of varying degrees.

I liked Wonder but I wasn't blown away by it. I would have preferred the whole book to be in Auggie's point of view, and I didn't care all that much about his sister's friend. I also wondered more than a little bit about whether Auggie would really have been so distanced from his community that his arrival at middle school was such a shock. The girl in the Wisconsin church was perhaps twelve years old. She probably attended Mass at that church every Sunday; she might have gone to CCD classes or been a student at the parish school.  I think of all the places I routinely took my children when they were small--strapping them in car seats, heading to the grocery, the library, the feed store--if my child had craniofacial abnormalities I don't think it would have changed my carting that child all around.

I'm pondering all this today because I've been reading a lot on the disabilityinkidlit site and other sites that discuss the accuracy of disabled characters appearing in childrens' books. It's an important topic for me for two main reasons. First, Ada, the protagonist of TWTSML, is born with a club foot--a very common birth defect--that goes untreated into her adolescence. The folks at DisabilityInKidsLit haven't reviewed it yet, though they've put out a call for a reviewer--my guess is that they're having trouble finding a reviewer with a similar disability, since as far back as the 1920s club foots were routinely treated and pretty much "cured" during infancy. The only places you can find unresolved club foots in adolescents now are in third-world countries among populations with very limited access to medical care, and even those are unusual. Club foot is a rare birth defect that really can be completely and permanently cured so early that the child does not remember it--to the point that not doing so in a developed country is flat-out child abuse--which is, in my book, exactly what it is.

The other big reason the way disabled children are portrayed in books is important to me is that I have a close family member with a chronic health condition, one that's not immediately obvious but that does impact that person's life. And there seem to two main narratives when it comes to the representation of people like my family member: either they die, or they're cured. They're martyrs or miracles. They aren't allowed to just go on coping with whatever condition it is that they're coping with. This is a more than a shame--it's a lie. Most of the kids I know that have some sort of chronic health problem have that problem forever, or at least for a good long time. They deserve stories in which they don't have to be cured. They deserve stories in which they are fine as they are.

I was uncomfortable with the book Crenshaw because while I thought it was a comfortable story to gently ease privileged kids into a sanitized awareness of childhood hunger, it didn't represent how poverty and homelessness feel to children living though those things. In the same way, Wonder, written after the author had a traumatic (on her side) encounter with a craniofacially disabled child, evokes sympathy and perhaps even empathy in able-bodied children, but, I'm guessing--and reviews from people with facial deformities bear this out--doesn't really reach what it feels like to be Auggie, who is, after all, much more than just his face, and who outside the pages of the book would live in a neighborhood with people who saw him every day, saw him as he was, a face and a boy and many other things, like the girl in Wisconsin, who sat with her family in the front of the church, not the back, not out of view.