The White Elephant in the Room

We lie to kids. Like, all the time. We lie about Santa Claus, we lie about The Tooth Fairy, we lie about employment possibilities in an increasingly difficult information economy. Probably the biggest lie we tell our kids is when we say it doesn't matter what other people think of them. This is a ridiculous fabrication and it's amazing anybody can say it with a straight face. We ought to be more forthright with youngsters. The truth is, you have to interact with people everyday. What other people think of you is an integral part of socialized society, whether we want to admit it or not. So, I'll admit it. My identity is comprised of not only how I see myself but how others see me as well. Unfortunately, as a person who is legally blind, I will quite literally never see myself the same way other people see me. So, when I look at my relationship to my albinism, it's no surprise things are out of focus.

I'm white, I'm just not white like you. I identify as a person with albinism, but I don't announce it and I sometimes get very angry when other people call attention to it, especially if they do so in a derogatory way. If my identity were a pie chart, I wouldn't know how large a slice of the pie my albinism would represent. I don't fully recognize its impact on my life. This is partly because I don't know what my albinism means to other people. Some people are fascinated by me, others revolted, others afraid, others curious and others have never heard of albinism before and just think I need to get a tan. To some, it's but a small aspect of my identity, to a few, it's probably all they see. Then there are some people who just think I'm from Norway or a senior citizen.

If you asked my friends from high school to list ten things about me, I doubt very much any of them would mention my albinism. These people were at one point like siblings to me. If you asked my graduate school friends to do the same, my albinism would be at or near the top of every one of their lists of my attributes. These people were at one point like siblings to me. These groups were both extremely close to me, yet my albinism means completely different things to each of them. When we met and the nature and duration of our interactions probably shape this difference of opinion, but this same extreme dichotomy exists with my parents.

My Mom never wanted to cut the umbilical chord so my Dad felt he had to act like it was never there in the first place. To Mom, my albinism was Everything. She'd never admit it to herself or me, but she views my albinism as a failure on her part. It's an ugly reflection of her shortcomings, having a genetically inferior child. In terms of its impact on my life and implications for how hard the world would be for me, Mom considered my albinism to be the Biggest Problem in the Fucking Universe. Standing on the opposite shore, Dad has made mention of my albinism once in my entire 36 year life. I was ten. He asked “Does anyone ever give you a hard time because you're, you know, albino or whatever?” The silence was excruciating. I just stared straight out the windshield at the rolling black asphalt and said, “Nope.” But, in every moment prior to this one car exchange, and in every moment since, Dad hasn't brought it up once. I'm pretty sure he thinks I couldn't play sports seriously because I'm 5'11” and stocky. I don't think he really appreciates how poor my eyesight is, or how sensitive my skin is to sunburn, or how often I'm still, even at 36, given a hard time because I'm 'albino or whatever.”

To put it succinctly, I have no idea what my relationship is to my own albinism. And that's why I started this project. I've thought myself a writer for the better part of 18 years; yet, I've never really written about my albinism. I'm sure this is a conversation for me and my therapists. It will also be the subject of this blog. Put even more succinctly, I'm looking for a little clarity, which could prove difficult since my eyes don't focus at the same time.

Further Reading:

What is Albinism?