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Born to Run (or Born This Way)

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.

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 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.

What do you think?

On Independence Day, John Carter, of Abundant Life Church, posted this challenge, which I thought worthy of reprinting:

The Great Invitation.

As teeming masses of boys and girls gather at our borders, I cannot help but think how our present crisis is in some way the result of our national identity.

Standing in New York harbor is a grand lady holding a book with today’s date marking its pages. She offers an invitation that is etched in her 128-year-old face as well as upon a bronze plaque fastened to her base:

“ ‘Keep, ancient lands, your storied pomp! …
Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!’ ”

These children at our gates are victims of tyranny and rejection. They come tired, sick, and are not to be blamed for the cattle-like manner in which their desperate parents and wicked “coyotes” have transported them.

Apart from the outrage of under-protected borders, and the politics of immigration,  the fact remains that tens of thousands of children are at our gates, believing that the invitation of Lady Liberty somehow might include them.

This much I know. I will be ever so much prouder on this day should some of the childless couples seeking children to care for be allowed to make room for these boys and girls. Can we not find room in our hearts for these children? Might there be charity in our budgets, room in our cities, some space in our plazas and abandoned malls, some host homes in our churches, some creative ideas from our world famous innovators for the boys and girls sleeping on cots in Texas?

And as the lights explode over New York harbor tonight, perhaps the glow will brighten the words on the base etched in bronze. The great invitation either needs to be lived up to, or permanently erased.

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Ed Griffin-Nolan

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