October is Down Syndrome Awareness Month. It is also Disability Awareness Month, Breast Cancer Awareness Month, Bullying Prevention Month, AIDS Awareness Month, and Domestic Violence Awareness Month.
And the list continues. Every month is full of awareness events.
I’m aware that all these events cause traffic jams. When I’m stuck on Storrow Drive or at the end of my busy street, I sometimes think, “What now?”
And then I look and see families with babies strapped on their backs, toddlers in carriages, kids on bikes and in wheelchairs, young and old, gathered together on a Saturday or Sunday, solely because they or someone they know or someone they only know about needs this. Not just money for research and programs, though the money is important. But the community support, people saying, “We’re here for you.” People showing that they care.
All the walks, the picnics, the bike rides, the road races. When I am sitting in traffic watching the throngs, I am struck by how many good people are in this world.
My granddaughter, Lucy, has Down syndrome. She is 10 years old and this Sunday is our big Massachusetts Down Syndrome Congress 17th Annual Buddy Walk & Family Festival, taking place at Lake Quannapowitt in Wakefield.
My friend Anne is coming down from Maine. My son and his infant son are driving up from New York. Friends and family who have every year joined us for this event will join us again. On a beautiful October Sunday when they could be doing many other things.
So what is this day really about? It’s about raising money, yes. But money can be raised in the dim lights of movie theaters or even less publicly online, on the telephone, and by mail. That’s how money used to be raised.
But this event, as are all awareness walks and runs and marathons, is about much more than money. It’s about exposure. Not just seeing on TV or on a poster a child with Down syndrome; not just reading about teens who’ve been bullied, or women who’ve been beaten, or kids with heart disease. But meeting them, walking with them, talking to them, listening to them, and getting to know them.
This is the “why?” behind all of these awareness months.
Every May there’s a walk for kids with spinal muscular atrophy at a park in Hingham. The place swarms with children in wheelchairs and they are all you see at first, all the chairs. Until you don’t.
Until you begin to see the smiling kids.
People with Down syndrome used to be shut away in institutions and segregated schools and classrooms. Doctors said they couldn’t learn. So they were evicted from society.
Times have changed, but only because of grass-roots organizations like MDSC, which was begun by a group of parents who knew their children’s potential.
Now people with Down syndrome are part of the community. But not yet a full-fledged part. All those years of being hidden meant that few besides family members got to know someone with Down syndrome. And though disability may not frighten people the way it used to, it still makes many uncomfortable. How do you act around someone with Down syndrome? What do you say? Can people with Down syndrome talk? And if they talk, will you understand?
What the Buddy Walk does, what all these events do, is invite people to come and see the diversity among people with an extra chromosome or faulty gene, among people with cancer or diabetes, people grouped together because they are alike in one way, but not in all ways, as different individually as are people with red hair.
Because Lucy was born in this country in 2003, because she was not shut up in a segregated school or classroom, because people see her at school, at birthday parties, at restaurants, at the mall shopping, at Canton Nail getting her toes done, they know her and they like her.
The Buddy Walk exists so that people like Lucy get to be known and never get shut out again.
To learn more, visit www.mdsc.org/events/BuddyWalkFamilyFestival.cfm.