Thursday, October 28, 2010


Welcome, NPR listeners!

As will soon become eminently clear, if it isn't already, I'm a poor blogger.

Lately, I've been using this site primarily to push and preview my book-in-progress, MIRACLE BOY GROWS UP.

But today, I'm going to print the original full-length script of my recent NPR commentary, as read and recorded at NPR West studios last week. Not much different from what was broadcast, except the intro.

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For me, Halloween can be an odd, unsettling holiday.

I have a severe, highly visible disability. I use a wheelchair that I drive with my mouth, and my spine is hopelessly curved. Sometimes people stare at me.

I never thought about a connection between disabilities and Halloween till I learned of the once-common fear of deformities--the limping, hunchbacked, hook-handed, or one-eyed monsters of ancient fairytales and old HORROR movies.

Even the word "creepy" comes from the same word as the oldest term for folks like me, the politically incorrect "cripple."

When people with disabilities weren't feared, they were often gawked at in carnival freak shows. Or objectified for their noble suffering, like Tiny Tim. As if we really had any choice about it.

As a kid, I tried not to think about what people might make of me, sitting in a wheelchair in my Batman or Lone Ranger costume. A hero who can't walk? Why not? Halloween is a celebration of the imagination, after all!

Sure, some kids teased. But I often scored more candy than my brother, who is not disabled. I saw no reason to complain about being treated differently.

Yet as an adult I began to feel uneasy about the creepy exhibitionism of Halloween, the way it encourages staring at all things weird. I can't help wondering if Halloween doesn't promote ridiculing differences, even a kind of conformity.

Yes, I know, for most people Halloween is an escape from conformity, but for those of us who don’t quite fit the norm, that's nothing special. In fact, demonstrating that you're not exactly what people expect is pretty much what disabled folks do every day.

When I take my own kids--who do not have disabilities--trick-or-treating, I often attract as much attention as they do. And no one likes being stared at that way.

It's not the same in daylight. When kids see me on the street, careering in my power wheelchair, they often say things like, "Wow! Can I have one of those?"

Hey, my chair IS an amazing, transformative device.

"Cool, isn't it?" I'll say back.

I figure I should do my part to make kids comfortable with people like me. Sometimes I have to tell the adult with them that it's okay, that kids shouldn't be forced to look away. I encourage them to ask questions, to learn.

Maybe I should see Halloween as an opportunity for grown-ups to do that, too. The holiday challenges us to stretch our perceptions. Maybe it can also teach us not to shrink away from the unfamiliar or judge appearances.

This Halloween, I'll try to remember that I really have nothing to fear.


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