Ducking Telethons

By Mark Lindenberg

"You’re a brave soul."

I was in a bookstore the other week, and that was what she said. It’s not like I’d just pulled someone from the path of an oncoming SUV: I was browsing through a book, wearing shorts, a T-shirt and my ever-present but oft-hidden, calf-length leg brace.

I looked up. An older lady smiled down at me. "It’s very courageous of you, you know..." she said.

I began to reply, but she waved me off and patted me on the arm. "Enjoy your book, dear."

"Y-yes, I will, thanks," I stammered. As she turned her back, I shook my head, partly in disbelief, partly in amusement. It’s as if we people with disabilities spend our entire lives in telethon mode. Brave, courageous and happy. Always unfailingly cheerful in the face of adversity.

I’ve heard the pleas in local charity telethons and service fundraisers. I’ve read about Jerry Lewis’ annual Labour Day pity-party for the cripples down south. Hell, my parents even pimped me out to one of the local gigs as a kid (tho’ not in the coveted role of Timmy). In hindsight, I don’t think they were comfortable with it, but what did I know? I was eight or nine, and I was going to be on TV! Yes, Virginia, I was a corporate shill once.

Besides wearing a leg brace, I stutter. Phone conversations with strangers will often start this way:

Me: Sound of cat being strangled.

Them: "Can I call an ambulance for you?" or, "Are you having a heart attack?" or even, "F*** you, buddy! [click]." That one thought I was an obscene caller.

My stutter is not your average Porky Pig imitation. It’s more like a whole-body, violent Yosemite Sam experience. My head starts moving up and down, my tongue gets lodged behind my teeth, my neck tenses, my chest seizes, and, if I’m sitting down, both legs have a tendency to shoot straight out in front of me faster than a male virgin at a strip club, if you catch my meaning. It’s no wonder people on the phone are thinking, "Holy coronary thrombosis, Batman! Did I just kill someone?"

I look at those two experiences and see two different sets of assumptions being made about me.

The woman in the bookstore seemed to be under the impression that my interaction with the world involves tremendous risk and danger, that most of the time I keep myself hidden away. Her response is automatic, based on traditional beliefs. It’s almost a throwaway comment, something you’re expected to say to "one of them." It’s also a judgment of my character on the basis of a piece of reinforced plastic and a limp.

My caller’s assumption, though, is different. He’s missing key information. Because he hears very little or nothing coherent from me within 15 seconds, he will immediately fear the worst. He wants to help. He wants to learn, even if it is to allay his own fears. This is my "in," my opportunity to stall judgment in its tracks. I can usually explain my situation, our conversation can return to the topic at hand, and we can get on with our lives.

If you see me in a bookstore, on a beach or on the street, I may be steaming hot, or shivering cold. I may be having a good day or a not-so-good day. On a not-so-good day, a stranger might have approached me, practising the laying on of hands and saying, "Jesus loves you" (yes, it has happened), in which case my mind will scream, "Shields up, Captain! We don’t know their intentions!" Or, I might have had some bad news recently ("Set phasers on ’frown,’ maximum setting - it’s an ugly planet, people!"). We all have to deal with these things.

Good days will often be spent outside in the sun (or rain, depending on the season). Sometimes I’ll be inside, seeking out and destroying new civilizations growing on the bathroom walls, ’cause I haven’t cleaned in eons. Whether it’s reading poetry in front of 20 people, grinning and giddy all the way, or taking care of the laundry, I’ve accomplished something. Either way, it feels good at the end of the day.

On the in-between days, I’ll just crawl into my shell for some down time: relaxation, reflection and a little self-pity if I need it. I’ll emerge again, a little faster (and a little stronger) than the last time. To swim, to read, to volunteer. To visit with family and friends, listen to music, and to write... It’s not a question of bravery or of courage. It’s about living, learning and staying in the moment as best as I can. Give me passion over pity any day.

(Mark Lindenberg is a writer and editor living in Toronto. His website address is http://viewpoints.dejongh.org.)