staring

The following piece first appeared on beliefnet in August, 2010:

Back in 1964, I was born with a rare condition called Arthrogryposis Multiplex Congenita. The doctors predicted I'd never live, and if I did live, I'd never walk, and even if I did both those things, I'd certainly not have a normal brain ("mentally retarded" is the term they used). Wrong. Wrong. And wrong again. But I do have this thing called a disability, and let's put it this way: I am not one to blend easily into a crowd.

First, I walk with leg braces that keep my knees straight. So in order to propel myself, I sort of waddle from side to side to put one foot in front of the other. To the untrained or unaccustomed eye, I may look more like a drunk penguin when I walk. Second, my arms are very skinny and straight, and my hands are small and curved under. On the one hand, I can sometimes have an out-of-body experience and imagine that I'm really quite fascinating to look at. On the other, I often times don't think of myself as having a disability at all. Quite frankly, I forget it's there. (After all, when you've lived with something all your life, it becomes, well, normal.) I pay it no mind whatsoever until I see someone staring at me. And then I remember.

I am now in my mid-40s, and it's only been recently that I've come to realize my ambivalence toward the stares of others. I really do understand the temptation to gaze upon that which is so different, especially when those gazes come from the eyes of small children. Kids are, after all, naturally curious, and it makes me crazy when parents scold their kids for staring at me--even as they stare at me themselves. Still, there is a fine line between curiosity and rudeness, and sometimes I just wish people would leave me alone. Maybe today I don't want to think about this disability; maybe today I want to swim in my pool of denial and pretend that things are okay. Maybe today I want you to put away your default to the superficial and see me for who I really am.

A long time ago, back when I was a brash little kid with an attitude, I used to catch people staring at me and I'd do one of two things: I'd stare back at them as intently as they were staring at me. Or, when my confidence was high and the brashness at fever pitch, I'd yell at them. "Hey, take a picture!" I'd shout. "It lasts longer!" It was a sure-fire way to stop the staring, but I'm not so certain it taught anyone a meaningful lesson along the way.

Even my own sisters, who you'd think should know better, are not immune from the staring bug. Once, when the three of us went out for a pizza, a guy came into the restaurant who was clearly visually impaired: he had a cane and a pair of seeing eye dogs (why he had two dogs with him I'll never know). As the evening progressed, I noticed my sisters (my own flesh and blood!) were staring at the guy with the dogs. "You guys," I whispered. "Stop doing that!" The reply was funny, but instructive. "Why?" said one. "He can't tell." First of all, I was sure that he could tell (Intuition? An acute sense of hearing?). But even if he couldn't, that didn't make the staring any less rude. Even so, I did understand my sisters' curiosity. Perhaps it was at that moment that my ambivalence toward the staring was born.

Today I am married and the father of two (non-disabled) children. I know my kids (ages 11 and 13) are acutely aware of the stares of others when we are out together, and I also know that they don't fully understand when I try to give people the benefit of the doubt. Sometimes I cringe when I am with them and they see someone staring at me, and I'm half expecting one of them to start yelling something about taking a picture.

But just last week I was given reason to hope. We were out at the beach on Cape Cod, and as usual I was feeling the stares of others as we made our way from the parking lot to the beach. To make matters worse, I was wearing shorts and so my leg braces were more visible than usual. Then we passed a boy of about 6, walking toward the bath house with his father. "Hey, Dad," said the boy as he looked my way, "Look at that cool guy!" Cool guy? Me?  I can honestly say that I had never heard a kid say such a thing before, and it made me laugh out loud. Come to think of it, I AM cool to look at, and I have a six year-old stranger to thank for reminding me that all who stare are not all rude. Maybe they are just stunned by my coolness.