Walking not for a cure, but to shine a light
Her name was Judy. She had thick, dark hair, which she pulled into a pony tail, and though I coveted that pony tail (my hair was curly and short) and though we were the same age — 8 or 9 when we met, 12 the last time I saw her — we weren’t ever friends.
She had braces on her legs, big metal ones, and her gait was slow and labored, and I wanted to ask her why. What happened? Did you have polio? Because polio was the only illness I knew about.
But children were taught not to ask and not to stare. And, good girl that I was, I did as I was told and ended up ignoring not just her braces, but her, too.
Most everyone ignored Judy.
I hadn’t thought about her in 50 years. But then the other day a friend made a comment, and there she was, front center of my brain, a child in braces walking alone down Althea Road.
I’d been talking about the Massachusetts Down Syndrome Congress Buddy Walk, which is today, and this man said, “All these walks for causes don’t change a thing, you know. They’re nice and they make people feel good. But nothing is going to cure people with Down syndrome any more than all the money Jerry Lewis has been collecting for 40 years has cured anyone with muscular dystrophy.”
And I thought, is he right? Is fund-raising a waste of time? Are all the walks and races for cancer and autism and cystic fibrosis and ALS really for nothing?
And then like Marley’s ghost, Judy appeared to tell me “no.’’
I never, as a child, not even for a second, saw our sameness. I saw our differences. She couldn’t run. She couldn’t play jump rope. She couldn’t keep up.
No one ever said, “Inside she’s like you.’’ No one ever said, “So she can’t run. I bet she can do lots of other things. I bet you have a lot in common.’’
How much things have changed in 50 years.
Now, because of Jerry Lewis’s telethon, the world sees up close how a disease can wither muscles, but not spirit; how children in braces and wheelchairs are children, not their disease; and how like all children everywhere, what they want is to be liked and accepted and included.
Now because of TV and Jerry Lewis’s efforts and the efforts of everyone who has ever walked or advocated for or supported someone who is different, children and adults know to look past the braces and the wheelchair, the tics and the bald head, the hearing aids, the silence, the almond-shaped eyes.
There may not be a cure for so many diseases, yet. But because of Jerry Lewis and all the other dedicated fund-raisers, there are camps and clinics and help for families and research and an awareness, which did not exist before all these telethons and walks began.
I will walk today in the 14th annual MDSC Buddy Walk around beautiful Lake Quannapowitt in Wakefield because my granddaughter Lucy has Down syndrome. I will walk with 3,000 other people not only to raise money, but also to show those who don’t know anyone with Down syndrome that it’s not tragic and it’s not a hardship. That it’s just an extra chromosome. And that kids are kids and people are people and disabilities really are just different abilities.
I wish I had known this when I knew Judy.
Signing Time’s Rachel Coleman will wow the little kids, and American Idol contestant and Senator Scott Brown’s daughter Ayla Brown, who performed last year, will once again wow the teenagers. And there will be singing and dancing and laughter and a picnic.
And all the people who don’t have Down syndrome for whom this is a first Buddy Walk, will catch themselves smiling and be surprised because they’ll feel good, not bad.
And when they do, they’ll begin to understand.
For more information about the Buddy Walk go to www.MDSC.org. Donations can be made online or by sending a check to MDSC, PO Box 866, Melrose, MA 02176. Canton resident Beverly Beckham can be reached at email@example.com.