Writer with Crouzon Syndrome Explains What “Wonder” Misses

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There’s a great need for more depictions of rare conditions in the media, and the film “Wonder” has put rare disease in the spotlight– especially craniofacial conditions like Crouzon syndrome. Crouzon syndrome is a rare genetic condition that causes craniofacial bones to fuse before they’re meant to. This premature fusion leads to a distinct facial appearance, and possible hearing loss. To read more about this rare condition, click here.

The film centers a fifth grade boy with a craniofacial condition, called August “Auggie” Pullman. After multiple surgeries, his face still looks different than his peers. The story shows how his family and friends learn to accept Auggie, and how Auggie learns to accept a life where he was “born to stand out.”

The film has made great strides raising awareness and compassion for people suffering from craniofacial conitions, but Ariel Henry, a writer for Teen Vogue who has Crouzon syndrome herself, explains why she wasn’t completely satisfied with the depiction of the rare condition she shares with the film’s protagonist.

The actor cast to play the protagonist is Jacob Tremblay. He’s a ten-year-old boy, who you may have seen in the film Room. He does not have Crouzon, or any other craniofacial condition. The film uses prosthetics and make up to give him the appearance of having Crouzon syndrome.

In a world where people with craniofacial are so often deprived of opportunities, especially in roles like acting, Ariel Henry finds it unsettling that even in a film about craniofacial conditions, the directors will still choose a “normal” child for the role over someone with a facial difference. This film would have been the exact place someone with Crouzon syndrome could have a stage to shine on, and still, Henry wonders why the directors didn’t hire someone who genuinely looked like her. It felt like a slap in the face to see people with Crouzon syndrome passed up for another job, even when the job was a role playing themselves.

Ariel Henry has, herself, undergone many surgeries– some helped expand her skull, others helped minimize facial differences. She explains, in her 26 years, she hasn’t ever had the chance to see a character on screen who looks like her. Whenever a character with a facial difference appeared, they were always portrayed as a villain, whose facial appearance was a from of evil: think Lord Voldemort, Freddy Kruger, Darth Vadar– even Wonder Woman, a film praised for empowering messages, followed this pattern with Dr. Evil. If people with craniofacial conditions weren’t cast as villains, they were in films that went over-the-top with sentimentality.

“Wonder” was an opportunity for a film to break that mold, but instead, Ariel Henry watched a healthy boy in a mask, a costume of a face that was made to look like her own, call himself ugly.

Henry acknowledges that it may be difficult for an actor who really faces the challenges of living with Crouzon syndrome replay their often traumatic struggles. On the other hand, she argues that people with craniofacial conditions are constantly facing extremely tolling physical and emotional challenges already– between social stigma and the burden of surgery after surgery. She says that she, personally, finds it more upsetting to see someone in a mask of her own face.

Henry also feels unsettled by the movie description which calls the character “the most unlikely of heroes.” She feels it turns him into a sort of inspiration prop, and deprives him of his own complicated humanity– is he a hero for simply existing with a craniofacial condition? For going through surgeries? It makes sense to call someone a hero for the way they manage a difficult situation or face adversity, but their existence itself shouldn’t be reduced down to one facet, to being inspirational due to a condition they were born with.

“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.”

To read Ariel Henry’s take in Teen Vogue, click here.


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