A Step Forward
|Many just assumed a kid like Tommy could never walk. Then she came along.|
During the mid-1970s, I watched my daughter Tanya spend hours at the local park, dangling by her knees from the monkey bars, her untucked shirt falling over her face, muffling her giggles. Later, I sat at an unobtrusive distance as she and her friends Dana and Nancy played dress-up in my daughter's spacious bedroom and sang karaoke to their favorite records before karaoke even existed. As Tanya developed, I saw before my eyes the connection between flexing muscles and flexing brains. Best of all, I saw my daughter having fun growing and learning without ever knowing it.
Even her first steps out of babyhood had started me thinking. All of a sudden, it seemed clear: That's what they need. That's what my other kids—the ones I teach at the Development Center for Handicapped Minors in Bakersfield, California—need, too: the chance to have fun. They're growing up, but they haven't experienced fun yet. We expect them to lie around on mats or sit propped up in beanbag chairs; to roll over, lift their heads, flex their arms and legs, or whatever other exercise we prescribe—but we're not making it fun. What's the motivation for these kids? Why should they keep trying? What's the goal?
Then I stopped short. What is the goal? I wondered.
And I thought back to Tommy. The truth was, I had never stopped thinking about Tommy.
He was at the center in the late 1960s, when it was located in a fairgrounds warehouse, about the time I first began working with disabled kids. And through it all, he never said a word. Not that anything passed him by. Tommy's eyes tap-danced when he was excited, flashing signals of understanding. If he couldn't talk, he sure could smile and laugh—and he did, at all the right times. He never missed a joke. He could communicate, too, if you knew what to look for. He'd look up for "yes," down for "no," and form an "o" with his mouth for "I don't know." But anyone casually walking through our classroom (not that anyone ever did) might have been excused for assuming that Tommy was, as one neurologist told me while pointing an index finger at his own head, "just plain retarded." Broken and deformed by muscular dystrophy, Tommy's body lay on a mat in the corner for most of our school day. But, I was convinced, his mind was a million miles away—or close at hand, dashing about the room with the more hyperactive of my students.
One day, I caught his bright eyes following several other students playing an impromptu tag game. Without thinking, I leaned down. "Oh, Tommy," I said, "you wish you could run and play with the others, don't you?" His eyes opened wider still, cartoonish, and his hands flapped in excitement. I had understood—finally someone had understood his lifelong dream! My hand flew to my mouth. Horror! "Oh no, Tommy," I blurted, "I didn't mean-" But the damage was done.
So I went to the hardware store and bought a roll of duct tape. Then I dug around in a supply closet at the center and found a couple of aluminum-framed, wheeled walkers (the kind geriatrics use to shuffle down hospital hallways) that were no longer in use. This was a gamble, I knew, but I couldn't see any alternative. I had set Tommy up, let him down hard, and now I was going to have to come up with some way to make reparations.
I taped the walkers together, using broom handles to add rigidity to the structure, and rigged a slinglike cloth saddle tied front and back. An image of Drunken Hinds, the paraplegic steer on my father's farm, came to mind; I obliterated it.
His body may have been broken, his mind trapped behind wordless lips, but his spirit dreamed of release.
When I was satisfied my creation wouldn't immediately collapse when leaned on, I wheeled it to my classroom. "Tommy," I said, "I want to try something." I explained my idea to him, and his eyes grew wider and wider, in total recognition and eager anticipation. "There's no guarantee it's going to work," I cautioned, "but if you're game, let's give it a shot."
Tommy was more than game. I heaved him into the framework, his legs straddling the saddle so that his feet touched the floor but did not have to bear his full weight. Before I could say anything else to him, he was off like a shot, churning his legs as he raced for the hallway, his arms windmilling wildly, his voice shrieking in glorious crescendos of accomplishment. Tommy was walking!
Make that running.
In fact, he caught on so quickly and lurched about the room at such alarming speeds, I had to strap an old automobile tire to the back of his jerry-rigged walker to keep it from tipping forward and pitching him onto his chin. Tommy, a kid so easily written off at that time as "retarded," who could only communicate with gargling noises and batted eyelashes, had come to life. He had found his wings—in the shape of some duct-taped, bent aluminum tubing.
Tommy made the move with us to a much larger facility—one with classrooms and a converted gymnasium—in 1971. He then graduated to an older class, where he was beyond my grasp. His walker contraption was scrapped, and he returned to his mat on the floor, back where convention said he belonged. After all, Tommy would never be able to speak for himself, never be able to articulate the ideas flashing behind his bright eyes; indeed, there would be many who would never even concede that he could think for himself.
Many years later, as I embarked on a mission to provide every child in my care with the means of independent mobility, my experiences with Tommy remained fresh in my head. That day when I had unwittingly committed myself to getting him moving, he showed me just how much thinking he was doing. He gave me a glimpse of how much he wanted to be like other children—to run, play, have a good time. To be normal. His body may have been broken, his mind trapped behind wordless lips, but his spirit dreamed of release. And those eyes, full of language, truly were windows to his soul.
Vol. 13, Issue 2, Pages 48-49Published in Print: October 1, 2001, as A Step Forward