Michelle Briedenbach.
Here’s the background:
Jack and Nolan Willis were born with a rare genetic disorder. They have been part of a team competing in athletic events to raise money and awareness for Duchenne muscular dystrophy, the as-yet incurable malady that limits their movement such that they need wheelchairs to get around. Their mother asked that the twins, who are pushed in oversized strollers by a team of experienced runners, be allowed to participate in the Fourth of July 10-mile race around Cazenovia Lake.
When people learned the race organizers, the Syracuse Chargers Track Club, denied them entrance, calls and emails started coming in to the club and to Cazenovia’s mayor, Kurt Wheeler. The Chargers cited safety concerns; the boys and their supporters framed it as an issue of inclusion and fairness. And what usually passes for a quiet celebration in the tight Madison County community was suddenly drawing attention from national media. Days passed, and still there was no sign of a compromise until, less than 24 hours before the race, the Chargers relaxed their rule about strollers and let the boys participate.
This episode was, in my view, a celebration of a culture of democracy, a community that governs itself. Too often we think about democracy as what the people we elect do to us or for us. But this was not about elected officials. It was a community governing itself by finding a course that respected two conflicting values: playing by the rules on the one hand and compassionate inclusion on the other. People spoke. People listened. Accommodations were made. The rules weren’t broken, but sensible people figured out how to bend them to exceptional circumstances.
The Fourth of July is about independence. That in itself wouldn’t be all that special, unless it was also about a celebration of democracy. The fashioning of a constitution and a Bill of Rights that could hold together a mongrel nation like ours over more than two centuries — that’s why we celebrate with all those hot dogs and fireworks.
And democracy, like a chili dog, is kind of messy. Most people end up getting only a piece of what they want. In Cazenovia last week, we saw in microcosm how the multiple elements that make up self-government came together to take, as the Beatles used to sing, a sad song and made it better.
And that night, the eloquent leader of one of Central New York’s most prominent activist evangelical congregations sent a missive calling attention to another situation where the needs of exceptional children come into conflict with our strict adherence to laws. Let’s see if our national leaders can take a page from the Chargers and the Cazenovia race to find a way to take care of these Central American kids.
It was a great day for democracy in Cazenovia on the Fourth of July. I had the chance to run around Cazenovia Lake with the Willis twins, two 12-year-old boys who were told earlier in the week that they couldn’t be part of the race.
It was really an honor to trot alongside them; their mother, Alison, on a bike; and their team of supporters taking turns pushing them along in three-wheeled buggies on a pleasantly cool morning. You’ll get a taste of the support they generated among the runners who passed them by, and the residents along the route, if you watch the video taken by my friend, Post-Standard reporter Born to Run (or Born This Way)
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Jack and Nolan Willis were born with a rare genetic disorder. They have been part of a team competing in athletic events to raise money and awareness for Duchenne muscular dystrophy, the as-yet incurable malady that limits their movement such that they need wheelchairs to get around.