There are many reasons why I write: to tell my unfiltered story, to bond with others dealing with craniofacial differences, and to educate those who are not.
I have always wished that strangers knew more about Treacher Collins syndrome so they could see me the way I see myself. I think people forget that I don’t stare at my uniqueness all day long. The only time I see what I look like is in a mirror or photos. The rest of the time I just witness life around me through my own eyes, the way everyone else does. I see the bridge of my nose, the tips of my bangs, and on occasion, the rim of my glasses. I truly forget that I am even unique because I’m not constantly staring at myself.
And, quite frankly, when I do catch a glimpse of myself, it isn’t a foreign sight. It’s just me, the same as it’s always been. I don’t really think I look all that different either. There are plenty of people without craniofacial anomalies who have unique, hereditary features. To an extent, I just see myself as fitting in to that category.
Still, I do understand how to some I am a bit of an anomaly, and because of this, I never mind when people ask about my appearance. In fact, I encourage it. Part of me wishes that more people would have asked over the years because the more people ask, the more awareness of TCS begins to spread. The more awareness spreads, the more people like myself are allowed to truly feel equal to everyone else.
One of the questions that has been plaguing me lately is how can adults best ask someone questions about their syndrome without sounding insincere? I realize it can be very awkward to want to learn more when you don’t know exactly how to broach the subject. I think in a way kids have it easier because everyone is used to them being unfiltered. They’re innocent and curious. David Roche, an author and speaker with a facial syndrome, encourages kids to flat out ask him “what happened to your face?” And I think it’s brilliant to allow them to be so blunt. Young kids have done that with me as well, and I have welcomed the teaching opportunity.
But adults are supposed to be mature and refined, which is part of the reason I think their words can be the most hurtful. Flat out, adults should know how to be respectful, decent human beings. “What happened to your face?” doesn’t always garner the same reaction when inquired by an adult, especially when that adult is more-or-less a complete stranger. (On a side note, an adult has never asked me this personally; however, I do know others with craniofacial syndromes who have been approached by strangers with this very question.)
Many people over the years have asked me, “Were you burned in a fire?” I imagine these people struggle between giving in to curiosity and wondering if they’ll hurt my feelings. While I appreciate them actually having the courage to confront me about my appearance, this question strikes me as being very speculative. I know it shouldn’t bother me since they’re doing exactly what I encourage people to do when they’re curious, but it does.
I spent many nights trying to figure out exactly why that is. For one thing, I realized that people who asked if I had been burned were looking for validation on an assumption they made. They asked a closed-ended question warranting either a yes or no answer. When people ask this, I can never tell if they actually want to know more or if they would be satisfied with a concise “no.”
The other thing I realized is this question confirms to me that society simply isn’t aware of the many causes of facial differences. And that saddens me. I’ve been surrounded by syndromes my entire life so nothing fazes me, but not everyone has sat with a mélange of craniofacial patients in the waiting room of their reconstructive surgeon’s office. They’ve never heard the words Crouzon, Apert, or Treacher Collins, let alone know that each of those will cause a unique physical appearance. In many people’s minds, a fire is the most obvious reason for scarring.
So what exactly is the best way for an adult to ask me about my face? I’ve been stewing over this for a while trying to think of what I wish people would ask me. The most important things to remember are to a) ask questions that engage a conversation and b) ask in the sincerest tone possible. Here’s what I came up with:
- May I ask how you got your facial scars? Is that something you feel like talking about or am I overstepping my boundaries?
- I’ve been really curious about your face. Do you mind telling me what happened?
- I’ve known you for a while and I’ve been really curious as to why your ears are so small. Are you comfortable talking about that?
Of course, all of these questions can be preceded by the standard, “Hey, Kristin. So, uh, can I ask you a question? You don’t have to answer if you don’t want.” (Just so you know, I will always answer!) Each of these questions shows me that you are actually interested in learning about my situation, not just confirming an assumption.
I completely understand if you say the wrong thing. I won’t be offended. Guess what? I, too, have those moments where my mind and mouth don’t connect and I end up saying something far from eloquent. (It happens more than you think, which is why I often turn to writing to express myself.) But I truly do appreciate when people ask me about my face.
It is my mission to educate.
It is my hope that I can empower people to want to learn more about various differences and disabilities. No matter how many times I have to answer questions about my face, I will do it. I’d like to think I’m paving the way for future generations. Equality begins with education.
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Not everyone with a difference or disability is as willing to openly speak about his or her condition as I am. It is best to get to know someone first before simply assuming they want to tell you their life story. If you do ask them for details, please be kind and respectful, and understand that they may not want to talk about it at that very moment.
Diary of a Beautiful Disaster 