SMAers are worth more than a stare

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by Kevin Schaefer |

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People-watching is one of my favorite things to do at Disney World. It’s a free and accessible activity, and it comes with more surprises than any of the hundreds of rides at the parks. Whereas “It’s a Small World” gets repetitive after a while, observing the public pitfalls of distressed families and individuals never gets tiresome.

I’ve gone to Disney many times, and I have numerous stories of watching these catastrophes unfold. My favorite instance involved a bickering couple at Disney’s Hollywood Studios years ago. The park used to feature a giant replica of Mickey’s blue sorcerer hat from “Fantasia” near the entrance. It towered over everything and everyone around it, standing as a majestic symbol of happiness and wonder.

The fraught romantic partners I saw that day didn’t get the memo and were instead locked in a bitter argument. As soon as they reached the giant Mickey hat, they walked away from each other in opposite directions as fumes emanated from their disgruntled faces.

So much for visiting the “happiest place on Earth.”

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Embracing curiosity

Judge me if you want for finding other people’s struggles entertaining, but it’s human nature. I’m drawn to observational humor, and I like to exercise my imagination in these scenarios. There’s always a story behind every couple’s rivalry and child’s tantrum, and I can’t help but watch and ponder.

I suppose in my case it has to do with the stares I receive on a regular basis. As a lifelong wheelchair user who has SMA, I’m often a subject of awe and wonder for the masses. Sometimes it’s the onlooker who tells me I’m an inspiration for getting out and eating chicken wings in public. Then there are the aspiring comedians who think they’re clever for asking me if “I have a license for that thing.”

Most of the time I find these interactions amusing, and they’re always good material for my writing. What used to make me uncomfortable is now a reliable tool for me to generate column topics. Try to heal me in the middle of a movie theater, and you’ll feature in my stories for a long time.

Plus, many positive interactions stem from people’s curiosity. I enjoy answering questions about my Jaco robotic arm, my work, and the specifics of SMA. When people opt to engage in conversation instead of staring, human connections occur.

A few years ago, I wrote about the constant stares I received when I was with my late service dog. Admittedly, the tone of that piece was angrier than I’m comfortable with, and I’d rewrite it if I could. It reads like the ranting of a grumpy loner, and my writing has certainly evolved since then. I was in a mood, but I stand by the message I was trying to convey.

I want people to see me and other disabled people in our entirety. Wheelchairs, assistive devices, and service animals are just aspects of our daily lives. When people stare and marvel at our existence in a pitying manner, they see us more as objects and less as humans.

Just like the troubled tourists at Disney World, we’re more than what people see at first glance.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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