I was 20 when Return of the Jedi came out. Not a big Star Wars fan, I still went along with my friends, who were clamoring to go. Darth Vader scared me with his creepy labored breathing and his impassive black mask. As the film reached its climax, Luke Skywalker removed Darth Vader’s mask. The theater audience gasped in horror as Darth Vader was revealed as… a burn victim.
Then, there was The Phantom of the Opera. Phantom was the biggest musical of my time, and in some ways, of all time. It opened in 1988 and is still playing, the longest running musical in Broadway history. The Phantom is a sick twisted man, a musical visionary but also a murderer. The Phantom lurks in the basement of the Paris Opera house. He wears a mask over his face to hide his hideous disfigurement, which no one should have to witness. In some versions of this story, the Phantom is revealed as… a burn victim.
Let’s not forget Freddie Krueger. The antagonist of Nightmare on Elm Street, he terrorized children both on screen and movie audiences everywhere. Freddie is evil, maniacal, and hideous. But you know, he has a backstory which makes him understandable. You guessed it… he’s a burn victim.
This dynamic is so pervasive that my husband and I have coined a phrase for it. Time and time again on TV, the villain winds up being burned. I look at Doug, we grin at each other and hoot, “Just another maladjusted burn victim!”
What’s a burned girl have to do to see a positive role model?
I was burned in 1967 when I was four years old. The only burned people I ever saw were the other burned kids at Shriners Burns Institute. Burn recovery was an arduous process, necessitating surgery after surgery, as the doctors reconstructed our hands, arms, lips and chins. Burned kids spent weeks and months together, recovering from one surgery or another. My relationships with these other burned kids revolved around stealing popsicles, wheelchair races, and playing doctor. (Not in a naughty way; in a mutual-working-through-our-trauma way). I remember my fellow burned kids as lively, mischievous, bored, and sad. We all spent time screaming in pain. But nobody seemed… evil.
Thinking of other disabled groups, I don’t know any which are uniformly portrayed as evil. Disabled people in wheelchairs have positive representation (Ali Stoker in Glee, Captain Dan in Forest Gump). Deaf people have heroes too (the son in Mr. Holland’s Opus); blind people have Mary in The Little House on the Prairie. I could go on and on. But I don’t see any positive representation of burned characters in the movies or on TV. Just psychopaths. What gives?
Most people unconsciously equate beauty with goodness. On some gut level, when we see a beautiful woman or a handsome man, we assume that they are also beautiful in their soul. When we see someone who is ugly, we shrink away, as if their outward appearance means that inside they must also be bad. But how many beautiful women do you know who are jerks? How many jaw-droppingly handsome men turn out to be assholes?
Do people imagine that being burned is so hard that it inevitably turns burned folks evil? To be clear, being burned is incredibly hard. Being burned is one of the most physically painful experiences in life, more painful than childbirth, more painful than kidney stones. I remember discussing my upcoming labor for my first born with my gynecologist.
“How are you with pain?” she asked me.
“Not great, but I understand pain.” I gestured to my third-degree scars, which cover two-thirds of my body.
My doctor gazed at me, blue eyes appraising, her frizzy hair pulled back in a neat pony. “Lots of first-time moms say that to me, but you are the first one I believe.”
So yes, burned people have endured extraordinary physical pain. We have also endured social pain. Most people try not to stare, but they do anyway. It is hard to find love, bearing an imperfect flawed body. It is hard to go swimming, baring one’s bumpy discolored skin for all to see. It can take bravery just to don a short sleeve shirt. Some of us hide our scars. Some of us hide ourselves from the world entirely. But most of us keep on with the business of living. We engage. We work. We make friends. We form families.
It is daunting to be burned. But still, every burned person I have ever met has seemed nice enough. Some of us are socially anxious. Many (most?) of us have been traumatized. Some of us are depressed. Or angry. Or lonely. But no one, and I repeat no one, has seemed like a murderous psychopath.
In fact, many burned people I know give generously to others. Many of us are involved with the Phoenix Society, an international organization for burn survivors and their families (https://www.phoenix-society.org/). Many burn survivors volunteer their time helping others in recovery. We fund-raise. We lift each other up. We speak about our experiences to help inspire others to keep going. We go to the annual World Burn Congress and spend three days hugging each other (click here for more on that: https://www.lisedeguire.com/post/a-whole-new-burn-world).
Perhaps being burned seems so horrific that screenwriters cannot imagine surviving burns without psychological ruin. People understand the physical pain, the ongoing surgeries. People can imagine the social rejection. Then they assume that all the pain and loss would be the perfect backstory for characters who are ruined inside. But hey. Those authors and artists must not know any burned people.
The burned people I know are kind, caring, and sensitive to others. The suffering of burns can teach you a lot about patience, bravery, humility, and perseverance. The loss of physical beauty can teach you a lot about what really matters in this world: heart and character. Please remember this the next time you see a movie featuring a burned psychopath as the villain. We look different on the outside, but we may be the nicest, bravest people you know.
Maybe someone can write a movie about that.
The author's memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader.