Ariel Henley is a freelance writer in Northern California.
It is a privilege to see yourself and your identity depicted in mainstream media. I know this, because I never have. I have a facial difference as a result of Crouzon syndrome — a condition that caused my skull to fuse prematurely and that makes me look noticeably different from many others. And if people like me are represented at all, it’s not in a way that is a cause for celebration.
This negative portrayal of people with visible physical differences stems back to Aristotle and ancient Greece, and has roots in physiognomy — a pseudoscience claiming a person’s physical appearance represents their moral character.
Physiognomy may have fallen out of vogue with policymakers and moralists, but filmmakers use bodily disfigurements as lazy shorthand to tell audiences that characters are immoral. In 2017, the Journal of the American Medical Association found six of the 10 most iconic American movie villains, compared with zero of the top 10 movie heroes, had some kind of dermatologic condition, including scars, burns, skin conditions or disfigurement. None of the heroes of these stories had similar conditions.
Moviegoers are supposed to know that characters such as Scar in “The Lion King,” Freddy Krueger and Doctor Poison are evil simply by looking at them. And it’s an impression that lasts long after moviegoers leave the theater, conditioning the general public to fear individuals who, like me, have asymmetrical faces, burns or scars, and to believe that we are not worthy of equality, empathy and inclusion.
When we aren’t forced to be villains, we don’t exactly get to be heroes, either. Both Auggie in 2017’s “Wonder,” which depicts a young boy coming to terms with his facial difference, and Quasimodo, in a forthcoming live-action remake of “The Hunchback of Notre Dame,” are characters who do their best to keep themselves hidden away from the rest of society. Both of these characters are defined by their deep-seated anger over their belief in their own ugliness.
As Sharon Valente, associate chief nurse for research and education at the Los Angeles Department of Veterans Affairs, has written, facial differences are not uncommon, and an estimated 10 percent of people have a facial difference severe enough to negatively impact their lives. In the United States, 1 to 2 in every 1,000 babies has a craniofacial condition. In Britain, more than 1 million people live with visible bodily disfigurements and experience roughly 67,000 disability- and disfigurement-related hate crimes each year. In the United States, people with disabilities (which legally includes facial disfigurements) are one of the most at-risk populations. We are more likely to be physically assaulted, sexually assaulted and abused or neglected.
An April 2018 survey conducted by the British organization Changing Faces found one-third of people with a facial difference were victims of hate crimes. Though startling, only 30 percent of victims reported it. For many with facial differences, the abuse is so ingrained they don’t even know they can.
But in one small step toward progress, in November, the British Film Institute announced it will no longer fund movies that use facial difference as a sign of evil. The British Film Institute’s decision is a real, tangible action that can be implemented by other film funds and production companies as well. Another important step would be to start casting actors with facial differences in movies such as “Wonder,” rather than using facial prosthetics to transform actors such as Jacob Tremblay.
This isn’t to say that characters with facial differences should never be villains: Turning us all into saintly avatars of tolerance and understanding would, in its own way, be just as limiting. We are real people who have the full range of human experiences. Hollywood should depict us that way, not just because it’s good for us but also because it’s good storytelling.