I'm Not 'Brave' for Having a Disability


Ever since I was a kid, well-meaning people have called me things like “brave” and “inspiring.” I wish they’d stop. All it does is patronize me and belittle me.

Now, I know they didn’t mean to make me feel three inches high. I know they were just doing their best. It is partly the fault of the overarching narrative of pity and shame that surrounds having any disability, and what I feel are shallow, patronizing representations of craniofacial disorders like mine in film and literature *cough* “Wonder” *cough.* Even some disabled people buy into the narrative, so I don’t fault people in the least for assuming I do too. Some people like being called brave, I guess. It makes their chests swell with pride or hope or something? I don’t get it.

See, growing up I could never articulate just why these seemingly innocuous, even complimentary, words made me feel so gross. Someone would kneel before me, raising their voice like they were talking to a puppy, and tell me how brave and special I was. I would nod and say thank you sir, thank you ma’am, while a sense that something was off about the whole fiasco lingered in my mind. Now as an adult, I can explain.

It didn’t make any sense to me as a child why all these adults bestowed the “brave” label on me, when everybody else called that were people like firefighters and Martin Luther King Jr. and African missionaries. It didn’t seem to fit me whatsoever. All I did was play Nintendo 64 and watch professional wrestling. I didn’t know what I had done to warrant that label. Maybe people thought I was someone else. People with Treacher Collins syndrome often do look remarkably alike, so maybe they mistook me for a fellow Treacher Collins stud who happened to save a kitten stuck in a tree.

In the beginning it was kinda fun to pretend I was this brave inspiring Hulk Hogan figure leaping over the top rope to save a damsel from the hands of the Undertaker, but after hearing it over and over again, it gets kind of tiresome. Don’t people want to know who I actually am? What my life is actually like? Or do far too many of them just want to continue looking at me through a haze of pity and ignorance? It feels like they don’t care about learning about me as a person, because they reduce me to a strange face that makes them bummed out and disgusted.

People often can’t see past the narrative of pity that dominates so much of how how disabled people are represented. People who call me inspiring are really no different than those who find it entertaining to call unusual-looking and disabled people names. Like those clueless bullies who, in their deep ignorance and lack of class, had the temerity to call me ugly when we can all see this is patently untrue. Look at my picture just oozing with sex appeal! They couldn’t see past the typical idea of what a handsome American man should look like to perceive my unique brand of handsomeness.

If these people knew me, actually took the time to get to know me, they’d remove the brave appellation from me quicker than you can say ”patronizing!” If you get to know me beyond the face, you’ll understand that being born with a different facial structure is not a burden to me. It may seem like an enormous weight to carry for someone with nice little cheekbones and a solid jawline, but understand that my deafness, my facial irregularity is part of who I am.

To be brave is to do something that terrifies you even though it terrifies you, right? A firefighter races into a flaming house as his heart pounds with fear. A man walks up to the most beautiful girl in the bar, the beer sloshing around in his trembling hands. Bravery requires terror. I am not scared of Treacher Collins. You may be. I am not. It is me.

The dangerous subtext that lurks under cries of “bravery!” and “heroism!” is that they can’t believe I am still alive. They act as if they don’t understand why I could still be alive, because in their minds, to be shackled with my facial structure is so horrible that any “normal” person would want to die. But wittle Gregory is so brave, he is still alive! Wow! And he manages to be happy too!

The entire narrative around disability in macro, and craniofacial disorders in micro is tainted with so much pity and shame that people often can’t help but repeat what they’ve heard. That’s OK. Disabled people are portrayed as weak and fragile little creatures who must be bolstered up with all the comforting words you can conjure up. But we aren’t weak. I don’t need anyone to give me strength, because: A. I have an easy life that requires only the barest shred of internal fortitude, and B. When I do require a bit of strength I can get it from within my own chest, thank you.

I’m kind of jerk really. A loner. Other people like me may need honeyed words and empathetic lies, but I do not. When you call me brave it demonstrates, explicitly, that you have no clue what my life is like, and when you walk away with a self-satisfied grin on your face, it feels like you have no interest in finding out, either. Believe it or not, and I know many may choose not to, and just chalk me up as a sunny optimist, but I actually love having a craniofacial disorder. No, that doesn’t make me inspiring!

Treacher Collins has blessed me more than it has cursed me. The only real curse is having to remember to buy batteries for, and maintain, my hearing aid. My hearing aid, at the very moment of typing this, is laying in a useless heap because, as a deeply irresponsible person (one of my many flaws), I didn’t maintain it properly. This is the only curse of Treacher Collins. Not even really a curse. More like a slight downside that could be tempered with just a dash of Adulthood on my part. People refuse to look past my face, the face they think is so horrible that just living with it makes me brave. The shame, the pity blinds them to the strange beauty of what having Treacher Collins is really like.

A sampling, then, of the bevy of Treacher Collins strange blessings:

If I wanted to, I could reach up to my hearing aid and with one finger swipe, mute all this nonsense I hear every day.

My strange facial structure acts as a D**kwipe Detector that can immediately pick out lousy people among us, when “normal” looking people have to waste time learning that someone is kind of a d**k.

As a loner, the aura of strangeness that surrounds me is a godsend when my cheekbones, or lack thereof, keep people at bay so I can be by myself.

I can read in complete silence.

When I’m in the grocery store and puzzled looks follow me wherever I go, it doesn’t trash my self-worth, it bolsters it because it makes me feel like I’m not just some clone.

Kids will stare at me in the checkout aisle and I’ll dance, then the kid will wiggle too, until their parents tell them to quit it. The parent will turn to me, get a glimpse of me, and smile awkwardly. This never, ever gets old. As a kid I spent almost every summer in Hershey, PA to get my surgical procedures done. Hershey. As a kid. A town built literally around candy and an amusement park, where the smell of chocolate lingers in every street and there are Hershey Kisses on the lampposts.

So the brave label fits me about as well as it does Donald Trump. Did I just compare myself to Trump? Oh god, I think I did. Well, it makes sense. I haven’t been through much in my life. I’ve lived a cushy life in America, and now I have a beautiful girlfriend and son. Wow, the hardship. My cousin Michael, on the other hand, literally saved a woman from a flaming car. He saw the car engulfed in flames and a woman passed out inside it. He slammed on his brakes in the middle of a busy highway, dove into the fire and pulled her out. When the news people asked him why he did it, he said “Uhhh I dunno… wouldn’t you?”

Save your heroic adjectives for people like him, who actually deserve to be called brave, instead of me, because I am, let’s be honest here, kind of d**kish.

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