In this op-ed, Ariel Henley talks about the response to the forthcoming movie "Wonder" as someone with Crouzon syndrome.
Yesterday, Lionsgate released the latest trailer for the upcoming movie Wonder, in theaters this November. Based on The New York Times bestselling book of the same name, Wonder is the story of August “Auggie” Pullman, a young boy with a craniofacial condition that required numerous surgeries and resulted in noticeable facial differences, as he enters the fifth grade. The movie’s official synopsis summarizes the film as this: “As his family, his new classmates, and the larger community all struggle to find their compassion and acceptance, Auggie's extraordinary journey will unite them all and prove you can't blend in when you were born to stand out.”
After the first trailer was released, numerous media outlets called the story “inspiring.” Variety and MTV called the movie trailer “heartwarming.” Vulture called it “tear-bait.” (Editor's Note: Teen Vogue also previously covered Wonder in a similar way). As for me, I called it disappointing.
The movie’s main character will be played by Jacob Tremblay, an adorable ten-year-old without a facial disfigurement. In order to portray a character with a craniofacial condition, Tremblay wears heavy makeup and prosthetics. As someone who grew up with Crouzon syndrome - a rare craniofacial condition where the bones in the head fuse prematurely, 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.
Craniofacial conditions, a broad term used to describe any disease, defect, or trauma resulting in the malformation of the head and face, affects approximately 600,000 people in the United States, alone.
"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."
According to the National Craniofacial Association, one in every 650 babies born in the U.S. has a disorder affecting their face, skull, and/or neck. The Children’s Craniofacial Association lists 19 conditions that classify as craniofacial disorders: Apert syndrome, Carpenter syndrome, Cleft Lip and/or Palate, Craniosynostosis, Crouzon syndrome, Facial Cleft, Facial Palsy, Fibrous Dysplasia, Frontonasal Dysplasia, Hemangioma, Hemifacial Microsomia/ Goldenhar syndrome, Microtia/ Atresia, Miller syndrome, Moebius syndrome, Nager syndrome, Pfeiffer syndrome, Pierre Robin Sequence, Saethre-Chtotzen, Treacher Collins syndrome, and Hallermann-Streiff syndrome. While the craniofacial condition isn’t directly named in the book, the author has gone on to saythat the main character in Wonder has a form of Treacher Collins syndrome – a condition affecting one in every 50,000 babies born in the U.S. So why then, with the obvious mass and widespread relevance of stories relating to individuals living with disfiguring craniofacial conditions, is the craniofacial community being excluded? Why are the issues that affect us being represented by people outside of our community? As the popular activism slogan goes, "Nothing About Us Without Us!"
Like Wonder's main character, my condition forced me to endure numerous surgeries to expand my skull and correct my facial differences. I’ve gone my entire life without ever seeing someone with life experiences similar to my own represented on the big screen. On the rare occasion that people with facial disfigurements have been portrayed in the media, we’re too often reduced to tired villain tropes or overly-sentimental tales that scream inspiration porn.
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.
"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."
A friend of mine, whose son has Apert syndrome, recently pointed out how traumatic the casting of a child with a craniofacial condition for this role could have been, because they would’ve been required to act out and relive negative, harmful experiences. But these are experiences those of us with craniofacial conditions already battle on a daily basis. As someone who underwent dozens of physically and emotionally traumatic surgeries and has spent 26 years living with a disfigured face, I find watching a healthy, “normal” child wearing a mask of a face that looks similar to mine, while calling themselves ugly, far more traumatic.
It isn’t so much the casting of Tremblay, himself, that I have a problem with. It’s what casting a non-disfigured child for this role represents. It represents every time someone with a disfigurement has been passed up for a promotion, or not hired for a job, because of their appearance. It represents every time someone with fewer qualifications was chosen over someone like us, simply because of what we look like.
This is not to say that Wonder hasn’t or won’t continue to accomplish what it set out to do, and that’s raise awareness for craniofacial disorders. But to suggest that people with craniofacial disorders, who so desperately want to see themselves reflected in mainstream media, should be grateful for this movie, while ignoring all the ways in which this story and the casting is problematic, only perpetuates our marginalization.
We’re at a turning point in our society, where people are beginning to recognize the importance of accurate representation for marginalized populations. Yet, the portrayal of individuals with disfigurements still has a long way to go. The time has come for our experiences to be represented accurately. Though, the part of a disfigured child with a craniofacial condition should have gone to a child with an actual craniofacial condition, it didn’t. Given our country’s current social and political climate, I can only hope that going forward, Hollywood recognizes the fact that there has never been a better time to celebrate beauty and diversity in all of its forms.
ORIGINALLY APPEARED ON TEENVOGUE.COM