The Beacon
Acton MA
April 15, 2010

Searching for What is Broken

by Dana Snyder-Grant

I'm sitting on the floor when two year old Brian looks at me. He jumps up and down and says, “Dana dance. Dana stand.” We are in his living room with trains and railroad tracks, fire and dump trucks, stuffed animals and an etch-a-sketch surrounding us. I have come over this Saturday morning for our weekly visit. His Mom, Nancy, comes down from upstairs.

"Now Dana may not want to dance,” Nancy says.

"Oh, I'll be okay,” I respond, enjoying strong legs today. I've walked over through the woods without my trekking sticks; the snow is all gone and I just have my cane with me.

I'm learning what it means to educate the young about disability. Brian, Nancy, and I live in a neighborhood where the fact of my multiple sclerosis has always been known. When I enter their house this morning, Brian runs up to me. He sees the cane as I lay it against the wall and reaches for it. “Wha...?” he begins to inquire.

You remember I sometimes have difficulty walking. The cane helps. It's like my third leg,” I say.

He turns and skips down the hall towards the kitchen and his play area. Canes and weak legs are no big deal. It is play that matters. I am struck by the child's uncluttered innocence

Brian turns to me and with the wide grin that is his smile, says, “Moosic.” He points to the cd player on the shelf in the adjoining room.

"You want to hear music?” I ask.

Brian nods vigorously and looks towards his Mom in the kitchen. Nancy comes into the living room, stepping over train tracks and trucks. She reaches over and flicks buttons on the cd player. The room fills with Raffi's music and Brian jumps up and down to the beat, directing me to do the same with “Dana dance.” This is when Nancy cautions her son that I may not want to follow suit and I assure her otherwise.

After a few minutes, Brian has enough dancing, moves over to a bin with trucks, and begins to pull them out, one by one. We both sit on the floor. “Fire twuck,” he says, picking up the red truck with its light on top. He then picks up a green dump truck which is missing a wheel. “Bwoken,” he states, but pushes it along the floor, anyway. It leans sideways as it moves along.

"That's good it still works,” I say. “Not too different from me. My legs are sort of broken. I have to use them differently, but I still use them.”

I have no idea if Brian knows what I am talking about. Do I imagine he nods, like he understands? He definitely grins.

Brian doesn't know that some days, I have more difficulty walking than other days. He doesn't know yet that some people can't walk at all or that others equate illness and disability with weakness.

I remember an encounter I had many years ago with a child who was about seven. I was traveling with my friend, Mitchell, when we stopped at a rest area. I was standing at the entrance when a girl came up to me, looked at my cane, and asked directly, “What's that for?”

I answered in kind, “I have an illness called multiple sclerosis. It makes it hard for me to walk and the cane helps.”

"Does he have it, too?” she asked quickly, pointing at Mitchell.

"Oh, no,” I replied. “He doesn't have it. And you can't catch it,”

Her mother tried to quickly pull her away. But I welcomed the questions. Like Brian years later, this young girl was straightforward, not overcome with fear or embarrassment. She showed me ways the young figure out what illness and disability mean. If a cold is contagious, why not MS? Maybe she thought that people with the same disability have to stay together. Her innocence allowed her to forgo polite silence and inquire. Perhaps, then, she was able to hear and learn without prejudice.

I'm not sure how children learn about illness and disability. I know they need to read stories and see films like Bambi over and over again to work through their fears and integrate the new information about death and dying. I remember walking around Jamaica Pond in the early 1990's with my friend, Kate, and her then three year old son, Ben. He had to hold my cane; he was determined to feel it, use it, to comprehend my need, and what was different.

Each week when I visit Brian, he asks me to dance. “Dana stand, Dana dance,” he says and I get up from the floor. I'm not sure what I will do or say when our play gets more complicated. Outdoors, he will want to run, something I can't do.

I guess I will figure that out as it comes. With Brian's uncluttered innocence, it may not be a big deal. I may be broken, but he'll still play with me.

Dana Snyder-Grant is a social worker and a free-lance writer who lives in Acton. Her new book, Just Like Life, Only More So and Other Stories of Illness, can be purchased at Willow Books in Acton or on the internet at http://www.justlikelifeonlymore

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