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