A blog reader wrote to me and asked if I had ever read the book, Wonder, by R. J. Palacio. (Blessings on blog readers who write to me and ask questions that I can turn into a blog post!) In short, it is about a boy with a facial deformity. A friend had recommended I read it a while back, so I checked it out of the library. The only trouble with checking things out of the library is that later on, if you want to go and look at a book, the book is not right there on your shelf waiting for you. So forgive me if I do this from memory... I may not get every detail correct.
On the whole I liked the book. Since it is juvenile fiction, it is a quick read. I thought the author's take on living with a facial deformity and living with someone with a facial deformity were pretty good. The story is told in first person, but the narrator jumps from character to character in the book. As a parent, I actually found the point of view of the older sister to be the most interesting. The feelings of always coming second and of always being conspicuous as a family were ones that parents need to keep in mind. But, in a way the author nailed one aspect of facial deformities without even realizing it. You see, many of the older sister's feelings stemmed from the fact that her brother was medically fragile for most of his early life and not so much from the fact that his face looked different. This is our experience, at least. Sure the actual deformity plays a role, but so often and so quickly it becomes a supporting role and not the starring character.
That's not to downplay the role it plays in H.'s life or ours. The fact that she doesn't look like everyone else doesn't go away, but as I have said before, among those who know her, it stops being noticeable. We don't think about it. Not in an 'elephant in the room' sort of way, but more in a 'oh yeah, we kind of forgot about it' sort of way. I would venture to say that friends who spend time with her feel the same way. H. is so much more than how she looks that people quickly see the real person and not just the outside person. It is when people meet her for the first time that we all notice it once again. There are the stares and hesitant questions as a person's brain seeks to assimilate what they are seeing, yet I've watched it all change very quickly as the person becomes accustomed to what they are seeing and start to interact with the real child. On the flip side, there have been the very few I have also seen the change never happen. Sometimes a child is initially afraid and the parent (not on purpose) feeds their fear. Some people just can't make the change, most do.
Actually, my biggest beef with the book was the author's take on education. My reaction to her assumptions very nearly made me put the book down. The child in the book, the one with the facial deformity, for health reasons (as well as how he looks) was homeschooled until 6th grade when his parents decide he needs to learn to live in the real world and they need to stop being overly protective. The book chronicles his first year in public school. As you can imagine, there is some that is good and much that is unpleasant as he navigates this supposedly 'real world'. Do I need to go into why I find all of the assumptions that author holds infuriating? I don't think I will here, but if you want me to later, let me know. I'll be happy to enumerate them. There are many.
On the whole, I do recommend it. It is well written and a great way to open conversations about what makes a person a person and how looks play into how we treat people. It could also be a great opener for discussing what exactly the 'real world' is.