Navigating Disfigurement in Alternative Fashion
All my life I was bullied because of my face. “Freak” and “ugly” were the words that got thrown at me the most. My condition, also referred to as a birth defect, is called a cleft lip and palate. My cleft lip and palate is moderate to severe. Like most children born with a cleft, I had to undergo many surgeries in order to “fix it”. However, my cleft lip is still prominent and noticeable even with surgery. Prejudice against folks like me has been referred to as ‘disfiguremisia’ a term coined by advocate Mikaela Moody. She describes it as:
“The prejudice against and erasure of disfigured people. ”
Mikaela is a campaigner with Changing Faces, the UK's leading charity for anyone with a disfigurement or visible difference. You can check out Changing Faces here or Mikaela’s twitter @guysmiley22 if you’d like to learn more about her and her work.
Because of the disfiguremisia I experienced, I have always had mixed feelings about Halloween and horror movies. I would get comments from people near Halloween saying “nice costume” when I was wearing normal clothes, as if my face was a mask I put on to scare people. This came without the benefit of taking it off. Even with plastic surgery, the severity of my “disfigurement” would always be visible in some way or another. There was no “taking it off” or “fixing” it, and because of that, I became accustomed to the prolonged stares from strangers passing by on the street or sitting in public transit.
Young children stared the most, presumably because my face was novel to them. This happened so much that I would have children running into me because they were staring. Parents would often let their children wander, and so, in wonder and perhaps confusion, kids would run into me while walking by or even biking. Parents would then scold their child for not watching where they were going. It's difficult to teach kids not to stare at something they find interesting, which is why I often let it slide. It is different when you’re an adult, however. Adults were supposedly taught not to stare at others, and yet I would have impromptu staring contests with strangers on the bus who couldn’t help themselves. They did not expect me to stare back.
I became accustomed to unsolicited comments, “compliments”, and advice. “You’re pretty, considering.” As if any beauty I possessed was in spite of my condition. “I’m sure you’ll find someone who loves you on the inside.” As if my outside wasn’t worth loving. “If you give me your number I can hook you up with a good plastic surgeon.” As if my face was something to be fixed—and I must want to fix it, right? All of these comments began to take their toll. I had immense anxiety, particularly around attention. What hurt me the most was not being able to control the attention. That’s when it hit me.
I’ll give them a reason to stare.
When I hit 16 years old, I’d had enough. I had already been inching towards alternative fashion, but once the bullying began towards my clothes, I went full force into it. For once I was being judged for something I could control, and after facing judgement for 16 years I decided I no longer gave a damn. I wore mostly black, with pops of obnoxious, neon colors. I convinced my mom to dye my hair neon blue, which I still miss to this day. For the first time in my life I was getting comments and stares for something I was creating. Something that I loved.
My style evolution
I realized at the age of 21 that I was non-binary, which helped bring my hesitance towards kawaii and more “girly” elements of alternative fashion into clarity. I was uncomfortable being associated with femininity, and rejected it with a vengeance. Up until this point I had gone back and forth from “normal” clothes to punk and gothic elements. What I enjoyed most about punk was that it utilized makeup in a way I felt was taboo for me. I had always been told I shouldn’t wear dark lipsticks, as it would bring too much attention to my asymmetry. I still had difficulty loving myself at this point, but I began challenging myself to accentuate features that I had previously been scared of. Every now and then I would receive the “nice costume” comments from strangers, but at this point I felt assured that it was because of my lolita coord or gothic punk outfit, not my face. There was a part of me that was bitter and angry at the world, and I did my best to reflect that in my self-expression.
Gothic Charlie- 2017
Charlie looks unamused at the camera. They have long red hair with a side shave, pointy black nails and eyeliner, along with black matte lipstick
Over time, this facade of toughness began to feel like armor that I had little choice to wield. I treated my clothes as a barrier to the world. Don’t get me wrong. I love having that “don’t mess with me” feeling sometimes, but I realized I needed a change. It still felt like I was rejecting the soft sides of me in order to protect myself. After all, I felt I had to act cold and aggressive in order to get the bullies off my back. I felt like I had to constantly exude “leave me alone or you’ll regret it” vibes so I could be at peace. The truth is that I’m a very sensitive empath—always have been. My mom used to say that even as a baby in the hospital with other cleft patients I would either be crying with them, or trying to help soothe them. I wear my heart on my sleeve, and whether I like it or not it leaves me vulnerable. My facial differences have always made me an easy target, and I had to teach myself how to limit the aspects of my personality that increased this. I was gullible, easily trusting, loving and loyal to a fault. I always believed the best in people until proven otherwise, which meant that I’d often get burned. I once had an explosive end to a friendship, one that ended in my once “friend” insisting that they were only friends with me because they felt bad for me. But the “truth” this friend stated, was that my face was so horrifying, that surely people as far away as Japan would scream in terror at the sight of me. It wasn’t until much later that I realized how that harmful view had come about.
The disability community
When I was in the thick of it with women and gender studies classes, I had a classmate roll up to me and ask for help on a paper. She was doing an analysis on ableism, particularly in the horror genre. I was extremely confused. I did not think of myself as disabled, and in fact it wasn’t until I developed a still undiagnosed chronic illness that I began to identify as such. My classmate began explaining the portrayal of disabled folks in horror movies, particularly folks with facial differences or “deformities”. It was then that it finally clicked for me. Why my ex-friend had treated me like a monster. Why kids were sometimes afraid to come near me, or speak to me. It’s because for years, they had been seeing one kind of representation for people like me. We were always the villains, the monsters who were there to scare the “normal” folk. We were the characters who became “disfigured” and then turned into villains themselves, disfiguring and terrorizing people in return. Two characters that come to mind are from a Batman movie, as they perpetuate the same tropes. Two-faced and Joker could both be considered disfigured, and they both became villains. This is also shown in supernatural shows like Buffy the Vampire Slayer and other horror movies.
A man called “Two-faced” from DC Comics. Half of his face is “normal”, while the other half has raised lips, bare teeth and visible veins/blood vessels
Media had been telling people for years that people like me were monsters. That we were evil, defective, or cursed. That no one would truly love us unless we were “fixed” or “cured”. If only true love would cure my curse, then I would no longer be seen as a Beast. But this was rarely for the benefit of the actual characters. Making changes to themselves or “curing” whatever it was that made them look different was used purely for the benefit of making other people comfortable so they wouldn’t have to look at us and acknowledge our difference. So they wouldn’t have to explain to their five-year-old after the inevitable, “What’s wrong with their face?”
Nothing. Nothing is wrong with my face, and there never was.
It’s true that in my case I needed surgery as a child so that I could function more normally and efficiently, so I could breathe properly and eat on my own. If you are reading this and you have a facial difference or a form of visual disability, you do not need to change for the benefit of others. You are not a monster, and you will find people who love you for your inside AND your outside.
Despite what the media has done to folks like me, Halloween has still managed to be my favorite holiday. I will always love dressing up in cute alternative outfits that are extra spooky for the season, and seeing kids and their families get creative. I still enjoy giving people a reason to stare. Nowadays I like to imagine they’re thinking “Wow, how cool! I wish I dressed like that!” or “They look like they’re having fun.”
