Wednesday, November 29, 2017

My Thoughts on Wonder

We had a fantastic Thanksgiving weekend that consisted of a lot of food and a lot of sleeping in. A huge win in my book. Over the weekend we also saw the new movie Wonder, based on the book of the same name written by RJ Palacio.

I enjoyed the movie, just like I enjoyed the book when I read it several years ago. However, it wasn't without it's flaws, at least from the perspective of the mother of a child with a physical difference. Of course my daughter does not have a cranio facial difference, as the main character, Auggie, in Wonder does, but we know what it's like to live in a world where going out in public is often filled with stares, whispers and pointing. A lot of people asked me on my Instagram stories what I thought about Wonder, here is a longer version of my thoughts.

ps. SPOILERS AHEAD. Read at your own risk.

First, I think it's important to know a little background about how Wonder came to be. Author RJ Palacio does not have a craniofacial difference, and does not have a child with a cranio difference. Rather, she was in an ice cream shop years ago when a little girl with a craniofacial difference came into the shop and Palacio's young son, who was 3 at the time, saw this girl and started crying. Palacio didn't know what to do, so she did what most mother's in this situation do--she got out of there as quickly as she could. To her credit, she realized later that she missed a teaching opportunity and that she should have engaged in a conversation with that young girl and her mom. You can read her full account on her site here.

What I think Wonder gets right:
The staring. The constant attention and how wearing that reality can be. Truthfully, I think the staring and negative attention might be worse for a child with a facial difference, but obviously I don't know for sure. That being said, seeing Auggie walk down the hallways of his school with children craning their necks was one of many moments that brought tears to my eyes. I've seen that scenario in real life many, many times.

Parenting. Just this last year we had that experience of sending our daughter to a new school and the first couple of days we were holding our breath. 7 years into this game we KNOW how children can and usually do react. Auggie's parents knew too. Of course I went and talked to each and every class in Lamp's school, and education is a night and day difference in how she is treated, but watching those parents send Auggie to school and hearing his mom whisper, "Dear God, please make them be nice to him." was a very relatable moment. More watery eyes.


It's not all about Auggie/disability. Auggie's sister Via has her own worries and issues going on. Yes, she talks a great deal about Auggie being the center of the Universe in their family--which is also relatable--but she's lost a best friend, she's falling in love and trying new things like acting. I like that it shows that everyone goes through hard things and it's not all about the disability. Via's former best friend also has her own stuff going on and the point I like about all of this is everybody has hard things in their life. In that sense this movie does not put Auggie on a pity pedestal making him and his differneces the measuring stick for all hard things in their lives.

The kids at school. Other than Julian, most of the kids are rather complex characters who aren't black and white. His friend Jack succumbs to peer pressure and makes fun of Auggie behind his back. It seems a little out of character for Jack, but at the same time it's a realistic portrayal of a good kid in a not-so-great moment. And of course Auggie is hurt by this, but he also accepts his apology and they work it out eventually. Out of all the characters Julian is the least believable in the sense that he's pretty one dimensional. However, the presence of Julian stands to remind us that some people in the world really are that image driven and unfeeling.


What I think Wonder gets wrong:

Using an actor without a cranio facial disorder. There are a couple other things that bother me about Wonder, and I'll list them below, but without a doubt the biggest oversight--and frankly a huge missed opportunity--was using an actor without a craniofacial disorder, for the lead role of Auggie.

This may sound foreign to you if you're hearing this idea for the first time, but for many people in the disability community it is a big problem that non-disabled actors almost always play disabled characters. Not only does it take away already scarce work opportunities for disabled actors, but it is also offensive.

As Ariel Henly, a writer with a craniofacial difference, says, "As someone with a craniofacial condition, I wanted to like the fact that there was going to be a major motion picture about a child with experiences that were meant to be similar to mine. For the first time, I'd be able to see someone like me in a character on the big screen. Like Auggie, I endured numerous surgeries to correct facial disfigurements... Individuals who looked like me, who had conditions like mine, were never written about in books.There weren't children who looked like me anywhere: not on television or in movies. While I wanted to like that Wonder was supposed to tell a story similar to mine, I didn't. Because even though people with craniofacial conditions are often mocked for their appearance, called monsters, and told to remove their "masks," directors decided to cast a generic looking child and have him do just that—wear a mask. "

Along these same lines, we know the importance of women telling women's stories and we know the importance of people of color telling their own stories, yet almost without exception able-bodied people are the ones to tell disabled people's stories. This is kind of a big problem. Since Dustin Hoffman won an Oscar for Rain Man in the late 80's the majority of Best Actor Oscar winners have gone to men playing sick or disabled characters.

As Scott Jordan Harris said in this article for Slate about the movie The Theory of Everything in which Eddie Raymond portrays a physically disabled Stephen Hawking,

"Another Oscar contender, Ava DuVernay’s egregiously under-nominated Selma, burns with authenticity about black experiences because it was made by members of the black community, not by members of the community that has historically oppressed them. In contrast, The Theory of Everything flickers weakly with truisms that can be mistaken for insight only by people who are not disabled, because it was made by—and for—people who are not disabled.

The ultimate ambition of David Oyelowo’s performance as Martin Luther King, Jr. is to express the reality of black life and black history in a way that resonates with those within the black community and educates those outside it. The ultimate ambition of Eddie Redmayne’s performance as Stephen Hawking is to contort his body convincingly enough to make other able-bodied people think “Wow! By the end I really believed he was a cripple!” Our attitudes to disability should have evolved past the stage when this mimicry is considered worthy of our most famous award for acting."


Yeah. As I said, it's a big problem.

Inspiration porn. My last couple of issues with the movie involve things I've talked about before, namely using disabled people as inspiration porn. At the end of the movie Auggie receives an award, which is essentially given to him for being disabled. It was softened slightly by the idea that it was given to the student who has "changed the most hearts," and perhaps that is true, but consider this point of view again from Ariel Henly (this time in Teen Vogue):

"In Wonder, Auggie is used as a prop to teach those around him about acceptance and compassion. The official movie description deems him "the most unlikely of heroes.” But what is he a hero for, exactly? For living with a disfigured face? For not getting angry when he’s subjected to cruel and intense bullying on a daily basis? For going through traumatic medical procedures? You may find someone inspiring for how they handle a certain situation, or the humor they use to cope with adversity, for example. But the existence of someone should not be considered “inspirational,” just because they’re different.

But here's a lesson for everyone: the mere existence of individuals with facial disfigurements or differences is not inspirational. We are so much more than the props we’ve been turned into, designed to make non-disfigured individuals feel better about their lives. Our stories matter and our experiences matter, and to portray our lives and struggles as nothing more than a source of inspiration encouraging those without craniofacial disorders to feel better about themselves, is a great disservice to everyone in the cranio community."

I know. The idea of inspiration porn and the objectifying of the disabled is a bit of a mind-stretcher for us abled-bodied folks. I mean, they gave Auggie an award! Isn't that a good thing? Maybe this all feels a little too PC. Maybe hearing these thoughts from people in the disabled community makes them seem too sensitive. And certainly not all disabled people feel this way. (Although I've read it enough to know that it's definitely a common sentiment.) But I ask you to consider these points of view. Sit with them. 

As a final thought I want to say this: In my instagram stories I said I did like the movie Wonder, and I did. At the heart of it, the movie does what I believe it was intended to do--raise awareness about craniofacial differences and people who look different in general, and to choose kindness. As the mother of a child with physical differences I could relate to the sentiments and experiences that a special needs mother encounters. But I am a special needs mom, not a person with disabilities and that is a big distinction.

Which is why I talked about Palacio not having a craniofacial difference, or being the mother of a child with a craniofacial difference. Because it's important to note that once again, this is a story about disability from the point of view of someone who does not have a disability, nor do they have a close relationship to a person with this specific disability. Does she have the right to write this kind of story? Sure. I actually think she did a pretty good job all things considered.

But that's not really the question we should be asking. The question we should be asking is, if the disabled community were to write their own stories, are we ready to listen? A middle schooler with Cerebral Palsy tried to write a book about a disabled character, but she couldn't get it published because it wasn't "sad enough." Hmmm. Do we want to hear the more nuanced, complicated stories about disabled lives? Or do we want to hear the same old "inspirational" stories over and over again, invoking a false empathy (in other words pity) so that we, the able-bodied majority, can continue to feel better about ourselves?

Here's what I think we need to do better in the future: Rather than holding the lens up to disabled characters like Auggie to see how they react to a world that treats them poorly and then calling them "brave" for not being filled with rage for all the ugliness thrown their way, lets hold up the lens to the rest of the world that shows the lack of exposure to disabled bodies in the world around them (tv, books, media), the lack of education and therefore the lack compassion that leads to exclusion, ridicule and oppression and call it what it is: jacked up. And then we can be ready to hear their real stories.

However, to actually hear their real stories, we're going to need to start telling disabled stories from and with disabled people themselves. There's no other way. 
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5 comments:

  1. Meghan2:37 PM

    I feel like we could be friends in real life. What I try to tell people all the time when they tell me I am an inspiration or that we are a wonderful family, is that we are only doing exactly what most of our friends and family would do in our situation. Do I deserve an award for being an amazing special needs mom? No! Because you know what, some days I sit on my couch and drink coffee while a nurse does my son's morning stuff. I take short cuts just like any other mom. I know every single thing about my son's medical situation, but I have to, to keep him alive, and I'm glad to. Is he an amazing kid - yes! Is he stronger than any other kid? I really don't know, because we don't give him a choice. We are trying to be a normal family with a bit of a unique situation. And maybe I am naive because my son isn't old enough yet to get his feelings hurt by other kids or adults who stare too long or make fun of him. I am glad that this movie sheds some light on physical differences. Especially the understanding that people with disabilities have real feelings. But, I can relate an understand the critique of the movie.

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  2. Well said. I personally can't bring myself to watch the movie and didn't make it through much of the book either. The fact that the author is nondisabled and doesn't have a child with a visible difference, and that the genesis was basically an instance of discrimination against a child who does (regardless of how understandable this reaction was, or the author's subsequent reflection on it) is just a giant turnoff for me. So is the infamous use of the "R" word in the book, which the author has defended. My son is developmentally disabled and has a visible difference. The whole thing just stings for me.

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  3. All I can say is WELL SAID! As a person living with a disability and a mother of a child with the same disability I can tell you we love our life. We are not an inspiration. We are not to be treated with gloved hands. We are the same as any other person, just trying to make it through this roller coaster life. I hope this post gets read and contemplated by all. Again, well said. I love your blog and hope awareness of differences can be embraced as just that, differences.

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  4. I've read your blog for some time and love it. I wanted recommend a book I read a couple years ago. Ugly by Robert Hoge. It is a memoir about a man's childhood who was born with facial differences. Great read. Geared toward older elementary children.

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  5. I haven't read the book or watched the movie, but I'd read the author's FAQ before. What bothers me is that with her talk about Upstanders vs. Bystanders she's feeding into the meme that bullying is something kids need to "work out among themselves", with adults bearing no responsibility whatsoever.

    But as for not casting a kid with a craniofacial condition, I don't think they should be faulted there. Really good child actors are rare, and finding one who also happens to have a craniofacial condition would be difficult. Check out the behind-the-scenes documentary on the making of 'Rabbit Proof Fence', and you can see the problem.

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