On Deformity and Humanity

TWiBHumanity

TWiBHumanityI was just washing my face over the bathroom sink, and when I looked up into the mirror, I could have sworn that I saw in my reflection half of a mangled face like Tom Cruise’s character when he sees his injured face for the first time in the movie Vanilla Sky. It’s a classic “jump cue” scare that has been featured in many movies and TV shows, and it is seared onto my brain despite my having been less than impressed with that movie overall.

I have an unreasonable fear response to film and television portrayals of disfigurement and misshapen bodies. I don’t scare easily across the board, and I enjoy a well-made horror or suspense film. The harder the R rating, the better. But film and television prosthetics and makeup, when used to show disfigurement, operate in a terrifying uncanny valley for me where deep down I know they’re not real and that gets in the way of basic human empathy, leaving only fear.

My first memory of being truly terrified of something onscreen was watching the Academy Awards as a child. During one of the many montages, they suddenly cut to a clip from The Elephant Man and I jumped up and ran out of the living room. I didn’t know the word “violated” then, but when I remember this night, that’s what it felt like. I was just watching the big awards show with everyone in their fancy tuxedos and gowns, and all of a sudden a terrible-looking thing was before my eyes, and then just as quickly, it was gone. The next clip was from Butch Cassidy and the Sundance Kid, and I can still remember the theme from that movie, “Raindrops Keep Falling on My Head,” playing as I literally ran away to hide from the TV.

Of course the “terrible-looking thing” in the movie was inspired by a real-life human being. A man with a name who had to endure cruel responses to his physical appearance in real life. Joseph Merrick had a condition called Proteus syndrome, which, possibly in conjunction with neurofibromatosis, caused severe deformity. He was cruelly exploited as a sideshow attraction called “The Elephant Man.” I looked into his life because when something upsets me I generally try to understand it, and as I got older and that image still haunted me I learned more about him, and also the play of the same title. I have nothing but compassion for the man, but I still can’t watch the movie.

Around the same time as that first Elephant Man sighting, I also got a glimpse of the trailer for the movie Mask. Back then, we had the primitive cable box that had a channel-changer the size of a Subway footlong attached to it by a long, thin wire. I had been watching something on HBO and when it ended, the Mask trailer came on. I’ll never forget it. It began with baby pictures and a voiceover saying something like “Rocky Dennis had hopes; Rocky Dennis had dreams…” and from the baby pictures it cut to the teenaged Rocky, as portrayed by Eric Stoltz, in large facial prosthetics and makeup to represent the real-life Rocky’s significant facial disfigurement. Roy Lee “Rocky” Dennis had craniodiaphyseal dysplasia and he died shortly before his seventeenth birthday.

A few years after that, there was a made for TV movie about a boy named David who had been set on fire in a horrible act of abuse. I remember covering my whole face whenever the commercials came on. But when the real-life David, who survived the attack and was left with significant burns over his entire body, especially his face and head, was a guest on Oprah, I watched and felt sadness that he had endured such a nightmare, and inspired at how hard he had to fight through what is an excruciatingly painful recovery process from severe burns.

I recently caught an episode of some medical show on the Discovery Channel, I believe, that was following around documentary style a young woman with severe facial deformities. I was flipping channels and I admit I was taken by surprise when her face came on the screen, but immediately upon hearing her speak, I felt nothing but empathy. It’s the prosthetics and fiction that give me nightmares, not real people with real medical conditions.

When there is no true human counterpart and something is purely fiction, I experience pure fear. The misshapen body of the shadowy figure in The Mothman Prophecies haunts me to this day, and I still can’t even look at the character Sloth in my generation’s classic The Goonies. On television, both Grey’s Anatomy and House, MD, have had episodes featuring characters with severely disfiguring conditions in recent years, and I’ve changed the channel on first sight. Even Family Guy and American Dad have lampooned The Elephant Man and Mask, albeit through animation, which still made me cover my eyes.

A fictional or false representation that’s divorced from the actual human behind the story is terrifying to me because it becomes just a visual that I can’t shake loose. But a human being with a certain condition or injury is a human being first in my mind. When I have encountered people in public who have disfigurements or who have visible scarring I see them as people first, because that is what we all are. My friend who lost an arm is neither scary nor defined by that. My friend’s dad who survived a gunshot wound to his face is brave and a loving father to my friend. That’s it. And just last week I wrote about how disgusting it was when celebrities mocked a young man with ectodermal dysplasias on social media.

I hope that I don’t sound self-congratulatory here, but my honoring of the humanity within us all is a core value that I will never stop crowing about. I wish I could make more sense of my irrational fear of the fictional portrayals, but it’s important to me to declare that distinction. And to be honest, having grown up with frequent nightmares about these specific images, I am sometimes ready to disappoint myself by feeling that fear in the face of another human. Thankfully, the spirit in me recognizes the spirit in you, however you may look.

I’m going to continue to manage my nightmares, and I urge everyone to be mindful of not making waking life a nightmare for our fellow humans. People who live with disfiguring conditions or who have lived through extraordinary accidents or injury are survivors. And that is beautiful.

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