The Disabilities Dichotomy

The fact I have a disability is pretty darn hard to miss. My skin looks like something escaped from a B sci-fi movie, and I get a lot of comments on my appearance. A lot of comments. Lately, though, something strange has been happening to me. I seem to be constantly forgetting that I have a skin disorder; I always seem to be surprised when I catch a glimpse of my skin. I know it makes no sense: how can I forget I have a skin disorder that I've had for nearly twenty-three years? Honestly, I can't explain the psychology behind it.

I have begun to think a lot about disabilities this week because of it, though. I know that there are many people who define me by my ichthyosis, and I honestly can't blame them. If one of my friends seemed to be the missing link between humans and dragons that'd stick out pretty firmly in my mind too. What surprises me the most, I suppose, are people who define me by something else. A long, long time ago (during my senior year of high school) I remember being brought to tears by a single comment. We had just finished one of the performances of the Holiday Dinner, a huge Christmas choir concert (with food) wherein I was one of the narrators. I was thinking about getting to go home and sleep off all of the wassail I'd consumed when a woman I didn't know approached me. She said, "You know, I really loved your performance. I was really touched."

My role, the Queen, had a particularly great monologue about the Savior and the meaning of Christmas. It frequently put me near tears, so I was not too surprised that it had an impact on someone else. "What really impressed me," the woman continued, "was you. I didn't notice your skin until someone else pointed it out to me. You were so confident and strong that I could only look at your eyes; you really know how beautiful you are." I was caught completely by surprise. I have never been a renown beauty; in fact, in high school I was officially one of those "awkwardly pretty" sorts that never got asked to dances. More than that, though, I was...astounded that she had not noticed my skin. I was under the impression that everyone noticed my skin first and me second. To have someone see beyond the scales was amazing. I started to cry even as I thanked her for her kind comment, which in turn made her cry My experience with that concert has always held a special place in my heart because of moments like that.

After a time I began to accept my skin as a banner of honor. I told myself that it meant I had survived the torture of elementary school, the agony of middle school, the dejection of junior high, and the loneliness of high school without giving up. I had been teased, oppressed, hurt, and neglected, but I was still alive. In some ways, pride in my disability began to get in my way. Frequently I would do idiotic things like push myself too hard or get involved in things that were unhealthy for me. (Like fencing... People who can't sweat really should not fence.) One day, though, someone asked me if I had an identity beyond my skin. The question made me uncomfortable, and with good cause. My skin was me; I was my ichthyosis. That lead to a time of major reevaluation of my priorities and paradigms. Not long after I was given a blessing to have my skin disorder healed; I was certain it would work. Weeks passed without my skin disorder clearing up, and I could tell the people around me were frustrated. They had thought that my skin needed to be healed, but what they did not realize was that I was what needed healing. My skin disorder is, in many ways, a psychological condition. Many of the ichthyosis youth hate themselves and hate their appearance. I understand why they do because I have been there and have felt that way. After the blessing, though, ichthyosis wasn't my identity, it wasn't the cross I had to bear, and it wasn't my badge of honor; ichthyosis was just something I happened to have.

Over the years I have learned to laugh at my skin. I tell little kids that I am one of the X-men (since I'm an actual mutant) and at fantasy conventions I joke that I could write the best dragon narrative ever (life with scales is never accurately represented). I've learned to smile at the people who ask me if I'm burned or dirty, and the stares don't burn into me the way they used to. My identity has changed, and I love the new way I view myself.

This week, though, I want to address something that concerns me a little. I have a very dear friend who I love very much. She always tells me how brave and smart and wonderful I am--even when I'm not. This past month this friend's brother has been the focus of a lot of media attention. He is an autistic teenager who did something I admire very much: he earned all of the merit badges in scouting. Now, I do not want anyone to misunderstand me. I think his accomplishment is fantastic, and I think he deserves all the praise this world has to give. What confuses me is that I have known several young men who have made the same accomplishment without getting any recognition beyond a little four line blurb in the town newspaper. Were their accomplishments less because they don't have autism? I had been under the impression that any young man who earned all his badges was something of a superhero, and I wish they would get as many accolades as my friend's brother.

Forgive me if I am not making very much sense. I suppose what this is all about is a matter of two words: "special" and "unique." Now, I know that these words have a whole lot of meaning behind them, and that most people can't agree on how they're different. I believe that "special" is something that comes from a person's heart while "unique" is something innate about them (like autism or ichthyosis). This week I have asked myself time and time again, "Am I special because I am unique, or am I unique because I am special?" In other words, I wonder if God gave me my skin disorder because I am special or if something special came out in my personality because of my ichthyosis. Confused yet? I know I am.

At the heart of this entire matter is the issue of how other people perceive me. I am grateful that so many people look up to me and admire all that I have accomplished; their belief in me gives me strength. I sometimes worry, though, that if I did not have ichthyosis that my accomplishments would not seem as great. I worry that I would be just like the hundreds of boys who are "normal" and are never recognized for the amazing things they do. This world would be a much better place if everyone felt like their accomplishments mattered and that no one was more "special" than anyone else. But it won't happen. What I ask instead is that people see me as a talented young woman with the determination to overcome any sort of obstacle that is put in my path rather than that "amazing girl with ichthyosis." I think most of the people in this world who are disabled feel the same way. We want to be our actions and our accomplishments rather than a single element of ourselves. Most importantly, though, I want to recognize the fantastic, amazing, and special people in my life. They have overcome so many trials and obstacles that would have brought less people down and they still find such great joy in life. They are my heroes; they are who I want to be like when I grow up. They are the truly victorious.