Living with a disability heightens my sense of responsibility

I take pains not to embarrass my community by my behavior

Sean Baumstark avatar

by Sean Baumstark |

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I was recently driving in an unfamiliar city one night after work. As I exited the freeway, I noticed that the headlights behind me abruptly entered my lane and were right on the rear of my car. After realizing the other vehicle wasn’t law enforcement, I wondered if I’d inadvertently cut off or frustrated the other driver. The car sped around me, weaving around a few others and driving through the red light just off the exit. Pretty erratic.

The other car had many advertisements promoting a local real estate agent. I couldn’t help but think, “Man, that doesn’t look good for business.” Not too much time passed before I turned my attention to myself. Do I ever do anything that reflects poorly on my business or my role in the disability community?

I’m sure the answer is yes, but aside from some verbal exchanges, I haven’t yet identified a specific incident of that sort involving me. But two general situations come to mind, and in each, others with disabilities have made me feel embarrassed by our community.

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To My Community: Your Journey With Friedreich’s Ataxia Matters

Doing the next right thing

That happens most often with air travel. I take advantage of the opportunity to board flights early or even first because of my Friedreich’s ataxia (FA). My disease causes all kinds of challenges, but chief among my symptoms are balance issues and slow, awkward movements. For those reasons, boarding a flight without a crowd around is beneficial. Although such benefits will never outweigh the challenges, I consider the opportunity to preboard one of the perks of being disabled.

(I’m using the word “perks” loosely because I recognize that most, if not all, disabled people would gladly forgo them if they were able to eliminate their disability and the devastation of rare diseases.)

The bummer about disability preboarding is the expectation we’ll wait to deplane after other passengers so we won’t slow down that process for everyone. I realize some people don’t like this practice, but I’m OK with following the preboarding norms. As a “rules guy,” I’m bothered when I see others hold up the deplaning process simply because they don’t want to wait.

Of course, I realize passengers are sometimes hurrying to catch a connecting flight or facing some other time restriction. I’m not talking about those instances.

I can also get frustrated, though less often, about vehicle parking. You probably know that the crosshatched lines in spaces beside an accessible parking spot are marked “no parking.” That area is reserved to allow ample space for people to enter and exit their vehicles when they’re using a ramp or lift.

I find it maddening when I see someone park in this area, even for just a few minutes, seemingly in a hurry to pick up their coffee or to avoid walking farther across a parking lot. Although it’s incredibly frustrating, I tell myself that nondisabled people probably don’t know how important that space is for someone who needs it. But for me, it teeters on unforgivable when I see someone with a disabled placard parked in a crosshatched area.

Ordinances make parking in a crosshatched area illegal, as well as ethically wrong, which I find different from the guidelines on waiting to deplane.

Thinking about the perks and challenges of living with FA or another disability has caused scenes from the “Spider-Man” movies to play out in my mind all week. As the Peter Parker character is struggling with doing the right thing with his newly acquired superhero abilities, he’s challenged to remember that “with great power comes great responsibility.”

I’m not one to label my disability as a superpower, but I do believe it gives me a rare perspective on the world and a responsibility to do the right thing, no matter how much I dislike what that may be. As someone who represents the disabled community, whether or not I like it, my actions can help or hinder how we’re perceived and treated.

But disability issues aside, there’s no good excuse for not doing the right thing.

Note: Friedreich’s Ataxia News 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 another 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 Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.


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