Our Lives

Our Lives: Give a piece of your heart with Muscular Dystrophy walk

February 15, 2014 

CindySchaefer.AL.050113.JEL

Cindy Schaefer.

JULI LEONARD — jleonard@newsobserver.com

When I was in middle school, a careless stumble or fall would quickly earn snickers and taunts of “Jerry’s kid!” It was a juvenile reference to comedian Jerry Lewis, then the face of the Muscular Dystrophy Association, but it also drew chuckles from adults who didn’t know any better.

Last month, I wrote about the sometimes callous remarks my son Kevin, who has spinal muscular atrophy, hears from strangers and friends alike. The response to that column was interesting. Mostly, I heard from parents with similar stories.

But one reader with no connection to the special-needs community was honestly perplexed by what I perceived as insensitive and wanted to know what was appropriate to say to a person in a wheelchair. (The short answer: Treat them as you would anybody, rather than as someone with a disability.) After our conversations, she told me that she had shared some of what I said with her daughter, who then offered her own insight. That legacy of compassion and understanding will make the world a more welcoming place for people like my son.

The discrimination that Kevin has encountered is more often due to thoughtlessness and naivete rather than intent. The accommodations he needs are not considered, simply because they never occur to those who have never had to use a ramp rather than stairs. The irony is that seeing past the wheelchair is what Kevin wants. And yet his disabilities are complex and he needs them to be seen so he can exist in an environment outside our adapted home. It’s not always an easy fix to make way for a person with disabilities.

Of course, there are times when he is excluded because it’s more work than the person in charge cares to attempt. Kevin is not always aware of these times, and I probably am not either.

While the great majority of the wonderful teachers we have worked with have been amazing and were always willing to go above and beyond to include him, a few over the years have asked not to have him in their class. I probably was not supposed to know that, and there was always a “good reason,” but I never missed the underlying message: My kid wasn’t worth the effort.

That’s why it is so important to me to be part of something where different abilities are celebrated rather than avoided. Where challenges cultivate creative solutions and, as the saying goes, normal is just a setting on the dryer.

Once embarrassed to be called “Jerry’s kid,” today I know it was not an insult at all. I am proud to be a part of the MDA and so very thankful for a safe place to go for help on all levels. I admit that until I needed it, I didn’t know much about the organization beyond the annual telethon that disrupted my TV schedule. I didn’t know that more than 40 diseases fall under the MDA’s caring umbrella. Or that it does everything from running a summer camp to offering free clinic visits to patients. Support groups. Research. Flu shots. Medical equipment. And on and on.

But mostly what the MDA offers is hope. Hope to families and the much-needed comfort in knowing that there are people who can help. And people who care.

For nearly two decades, my family has directly benefited from the work of the MDA. The support has been invaluable and, every once in a while, we have the opportunity to give back. Eleven years ago we formed a team, Kevin’s Cruisers, and participated in the first MDA Muscle Walk. We had so much fun that we’ve done it every year since.

Our team is composed of our small family and a few special friends. We shamelessly ask everyone we know – and just as many we don’t – to help, knowing that every dollar we raise will be put to good use locally. We even have a website: www2.mda.org/goto/KevinsCruisers.

The MDA has suffered from the economic climate of late and has had to cut some of the services it provides to families. For some, that loss is devastating.

This year’s Muscle Walk will be March 15 in the Lowe’s parking lot at Durham’s Streets of Southpoint and is sure to bring smiles to all who attend. My family will be there, exercising our muscles for those who can’t. But in the end, it only takes one muscle to make a difference – a heart.

Schaefer: cschaefer63@nc.rr.com

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