Wonder is out in Australian cinemas this week, and is showing in US and UK cinemas now. I am seeing it on the weekend. (Edit: I’ve now seen it, and here is my review.)
Wonder is the story of Auggie Pullman, a young boy with a facial difference.
I’m equally excited and apprehensive about the movie. You see, I loved the book (my review is here), and it is good to see representation of people with facial differences. And it’s great that facial difference is not depicted as evil, like in the Wonder Woman movie earlier this year. It’s great to see a positive storyline but it could still do better.
(I know some of you will be thinking, just be grateful for what’s presented. One thing i find hard is how to discuss this stuff as we are expected to be grateful there’s representation at all.But I’m a writer and thinker, and authentic representation of people with facial differences matters to me. Hence this wordy blog post! Don’t worry, it’s not all critical!)
I’m acutely aware (and disappointed) Wonder has received far more attention than books written by actual people with facial differences. I’m also disappointed that the actor who plays Auggie does not have a facial difference.
RJ Palacio, author of Wonder does not have a facial difference, nor does she have a child with one. She wrote Wonder after her child reacted negatively to seeing a child with a facial difference in an icecream shop. As reported by Refinery 29:
“Palacio had been at an ice cream store with her two sons, and sat near a child with an appearance similar to her main character, Auggie’s. At the sight of the girl, Palacio’s three-year-old son started crying. The author, trying to protect the girl’s feelings, panicked and fled the store.
“I got up from the bench as though a bee had stung me, flipped the stroller around, and called my older son, who was coming out of the store with chocolate shakes. The [milkshakes] went flying, and my son is going, ‘Mum, why are we leaving so quickly?’ and I heard the girl’s mum say, in the calmest voice possible, ‘Okay guys, I think it’s time to go.’ It was horrible, just horrible. My heart broke for this woman and for this girl, for whom this must happen a million times each day,” Palacio said in an interview with The Telegraph.
Driving back home to Brooklyn, Palacio examined her family’s reaction to the girl over and over again. “What I should have done is simply turned to the little girl and started up a conversation and shown my kids that there was nothing to be afraid of. But instead what I ended up doing was leaving the scene so quickly that I missed that opportunity to turn the situation into a great teaching moment for my kids. And that got me thinking a lot about what it must be like to … have to face a world every day that doesn’t know how to face you back,” she told NPR.”
Essentially, Palacio’s first interaction with someone with a facial difference was one of pity and panic. And perhaps she wrote it for repentance, to feel better about the situation.
I’ve experienced this situation so many times, but from the other side. I see this when I encounter scared and rude children. I see parents panic and don’t know what to say. They turn their kids’ faces away from me, or make something up – usually that I’ve been “silly in the sun”. Their kids cry and shout, and say they don’t want to look at me, and of course this leads the rubber-neck effect where other people look at the woman the kid doesn’t want to look at. I know how hard it can be for parents to diffuse the situation.
But, despite Palacio writing with no direct experiences of facial difference, people are talking about Wonder – the book and film. Friends with children tell me their kids are studying it at school. Parents of young kids with Ichthyosis tell me it gives them insight about what to expect when their kids go to school. And I gave the book to all teens and adults with Ichthyosis at the Ichthyosis meet. This discussion makes me happy, because maybe, just maybe, it’s one less awkward discussion I need to have with a child, because they’ve seen or read Wonder and no longer feel scared about people with facial differences.
In a recent Facebook group discussion, a parent asked this (paraphrased) question:
“Should I show my kids this movie if they’ve got a relative with a facial difference? I don’t want them to see the relative as different?”
I jumped in to answer, saying that I think it would be really good to show them, even just talk to them about how to respond in case one of their friends makes a remark. I stayed with people overseas and they didn’t brief their kids about my face and it was awful the whole time. The kids stared and hid from me and would not speak to me, and when I offered to talk to them, they excused the behaviour as shyness. I’ve seen enough reactions to know what shyness is. Sounds like your kids are already doing a great job just treating your cousin with respect and love.”
Jess Walton tweeted a great thread about how little kids are already discriminating against kids with disability, and how real disability representation in media and books can change this. I really hope Wonder the film does.
The film is problematic because they haven’t cast Auggie by a boy with a facial difference. Jacob Tremblay is cripping up – he is a boy without a facial difference, and has prosthetic makeup on.
This isn’t inclusive practice. What’s more, “Real Life Auggies” are being used to promote the film.
Over on Twitter, Disfigured Princess Mike questions the “Real Life Auggies” being used in the promotion for the film, but not in the film itself.
“‘Real-Life Auggie’? How about casting one for your film? Not just toting us around classrooms on inspiration tours. #DisfiguredChat #WorldKindnessDay #WonderTheMovie”
Disfigured Princess Mike also touches on the perceived representation of facial difference in the film – and how those involved have no idea what it’s like to live with a facial difference.
Non disabled people control the narrative of the film and book. What happened to “nothing about us without us”?
Ariel Henley has written extensively on her concerns about Wonder – how the film gets it wrong about facial difference:
“It was devastating to realize that the directors involved with Wonder would rather cast a healthy, ‘normal’ looking child and put him in makeup and prosthetics, rather than cast someone who looked like me.”
She also writes about how the film is commercialising facial difference. Commercialisation of a film is nothing new, but when it’s used to generation discussions about marginalised people, it cheapens the message.
Kindness is rewarded through gifts, Henley reports.
“As part of the film’s promotion, Lionsgate is running a marketing campaign to promote the movie and its message of “choosing kind.” Part of their #CHOOSEKIND campaignallows classrooms across the country to become “Certified Kind,” meaning children complete tasks and are rewarded for their acts of kindness. Students can design a t-shirt portraying what inclusion and kindness look like, with the winner earning $150 and the opportunity to have their design printed on shirts at GAP Kids. Another challenge asks classrooms to watch a video by the makers of Wonder (none of whom have craniofacial conditions) and identify what principles they live by. For this challenge, winning students are rewarded with an advance screening of the movie at their local theater. The final challenge is a kindness jar, where teachers put a marble in a jar whenever students perform acts of kindness. For this challenge, five classrooms win a $50 pizza gift card and $500 donation to a charity of the winner’s choice.
While I can appreciate the concept behind encouraging kindness, rewarding individuals for being nice — especially being nice to people with facial differences and physical differences — shouldn’t need to be encouraged. It should be expected.”
I too am concerned with the kindness message of the film – both kindness from the person with a facial difference and the person without.
Kindness toward people with facial differences can also overcompensating and condescending. As I’ve written before, kindness can also be unhelpful – assumptions that we need help, or to be fixed or pitied/prayed for is often disguised as kindness. And these interactions are often rude and tiring.
There’s a direction for viewers to be kinder to us because we lead difficult lives (because of our perceptions and value of self, and others’ cruelty towards us) – and perhaps treat us as though we are special and deserving of praise because of the way we look (and our resolve to get out of bed). This borders into inspiration porn territory. As Stella Young suggested in her Ted Talk, I do hope the film encourage praise for genuine achievements rather than saccharine kindness for just getting out of bed.
More than kindness, people with facial differences need empathy. We need spaces for us to tell our stories, and to be heard (and not doubted). We also need to be treated better – not just through kindness but with respect and being made to feel safe.
There are also expectations of people with facial differences to be nice and kind when responding to rudeness and discrimination. It’s always on us to make people comfortable – and dare we speak out about ableism and incidents we encounter, we’re met with accusations that we are victims, whingers and aggressive. But we should be allowed to react emotionally – even angrily – to the micro-aggressions and discrimination faced.
When I am assertive about people’s curiosity, rudeness and discrimination, I’m often seen as the rude one. I do my best to educate and smile, but it’s unavoidable to be assertive, and sometimes rude. We are expected to be kind, be meek and mild, to be a lesson, and to educate everyone who expects it (read can’t get out of their own bubble). As I wrote, I’ve stopped being nice.
Belinda Downes, who has a cleft palate, wrote a brilliant Facebook status reflecting on kindness and patronising behaviour this week, and she said I could share it with permission.
“Okay, that conversation was interesting. Just talking to my friend’s new carer. She really wants to see “Wonder”, (we got there via, ‘Hi I’m (name), did you have an accident? No, actually it’s a facial cleft repair… Oh, like ‘Wonder”? Yeah, but that’s only the beginning of knowing about us’ ) So I showed her a part of ‘You can’t ask that’ while we were waiting for my friend.
The whole convo gave me evidence that perhaps I’m right in one of my criticisms of the marketing of the movie. (Not the movie itself.)
Craniofacial friends are talking in terms of awareness, but the movie is being marketed as ‘be kind’. So my ‘fear’ is that people will conflate the two and misunderstand what ‘kindness’ really is and all that unhelpful patronising stuff will happen because didn’t you know we aren’t average people, we are here to make you feel good. There’s a lot of subtleties here. Confirmation bias etc.
(I also watched the big press briefing on YouTube, while the actor playing Auggie did a lot of research with kids with Craniofacial differences, I admit to crying a bit when I saw no adults with Craniofacial differences at all in the press briefing. Reminding me that we’re just a device to tell someone else’s story: ‘I want everyone to be kind’ And you know what, that’s a great story, but it isn’t a Craniofacial story, it’s a human story, when do we get to tell our stories on the big screen? How do we get past the non-Craniofacial editors and producers?)
I did my bit in this convo, and I did appreciate her being upfront and not politically correct. And to her credit, she did say and mean, ‘I’ll keep what you said in mind when I go to see it’
I was thinking of seeing it at a cinema, but I think I’ll see it at home now.”
Crystal Hodges, who has a birthmark on her face, is excited about Wonder. Similar to me, Crystal is optimistic that conversations around facial difference have occurred because of Wonder. People are definitely more aware and sensitive.
“When I talk to people who have read the book, I’ve learned how their perceptions of people have changed. I’ve heard the stories of discussions that parents have had with their children after their nightly reading, as “Wonder” took a turn on their nightstand. I’ve seen the concept of kindness being refreshed in people’s minds and actions.
Books and words have the power to change the world – and “Wonder” has. And now it’s about to hit the big screen, this Friday. I have yet to see the movie, but I can only imagine how this movie may impact the world for years to come. I can only imagine the impressionable minds that may see the movie during a family night, walking out of that theater remembering that people are people – regardless of what they look like, or don’t look like – reminding to treat others with kindness for the rest of their days on this planet.”
While it should be our own voices that are amplified, Wonder the film and book is a good conversation starter. We need diverse books and movies, but we need authentic writers and casting. Viewers need to remember this story isn’t from the voice of a person with a facial difference.
Here’s what you can do to continue the conversations after seeing and ensure our own voices are heard.
Read books written by people with facial differences. Ariel Henley made a great list here. (I also made a list of books that overlaps a little, and some are by family members who don’t have facial differences. Also, my book will be out next year.)
Know that Wonder is fiction, written and made by people without facial differences. It’s important they hear stories from real people. It’s important we are in control of our narrative.
I’m a bit bias but get your kids to watch the facial differences episode of You Can’t Ask That on iview too. It’s us talking about living with facial differences. Parental guidance recommended. I’m always chuffed when parents say they watched the show with their kids.
And follow some of the stars of the show on Facebook:
Show your kids some real life stories of other kids with facial differences and disability. There’s a great series on ABC ME about what it’s like to experience disability. The Project also did a segment on some kids with facial differences to promote Wonder.
Conversations about facial difference (and disability more widely) with kids can sometimes be awkward. Encourage your kids to ask polite questions, but also teach them that it’s ok for us to set boundaries about whether we want to discuss our appearance at all.
Be kind but don’t overcompensate. Tell your children that we are not an inspiration because we have a facial difference, but for the accomplishment of genuine success.
Lead by example. Welcome all types of people into your life, read widely and listen to our experiences.
And for the writers and filmmakers who might be reading this, invite us to play roles, to write films and to consult.
Here are some tips for preparing children to meet people with facial difference and disability.
Here’s a resource on inspiration porn for teachers and parents
Penny Loker wrote a blog on Wonder too.
Did this post help you or make you think differently? Will You use it in your workplace or classroom? Please consider buying me a drink.