Reflecting on the perks of being a wheelchair user
Sitting all day has its drawbacks, but I've also found some benefits
“It must be nice sitting in that thing all day.”
Having lived with SMA for 32 years and used a power wheelchair since I was 2 years old, I’ve heard some version of this comment many times. Those who read my column regularly know that I enjoy making snarky comebacks to such remarks, but I’d rather take a different approach today.
The truth is that many perks come with disability and using a wheelchair. My birthday was last week, and several circumstances reminded me of the benefits of having a disability card.
The benefits of living with SMA
I have the best parking spots: The night before my birthday, I saw comedic legends Steve Martin and Martin Short do a show at my local performing arts center. I go to this venue multiple times a year, and instead of having to use one of the parking decks and fight for a good spot, I park directly in front of the theater. A staff member greets me and whoever I’m with, and then directs us to a designated accessible space mere yards away from the theater’s entrance. Despite the large crowds, my friends and I had no trouble getting in and out of the venue and had a blast while we were there.
Free stuff: Freebies are common with birthdays. I get free desserts, coupons, and usually a snack or sandwich at various food chains. Yet, occasionally, a good Samaritan will send a freebie to a Disabled person without a subscription requirement.
I had dinner at an Italian restaurant on a recent Wednesday night with a group of friends, one of whom also has SMA. When it was time to pay the bill, the server approached us with a smile and said an anonymous couple had paid for the entire meal for all five of us. We were elated and grateful for this act of kindness, but I also knew the obvious reason why these strangers had selected us. I imagine them seeing my friend in her wheelchair first, and then, once I rolled in, their thoughts must have shifted to a striking revelation: “Oh my, there are two of them!”
In all sincerity, my gratitude toward people like this can’t be put into words. We need more random acts of kindness in the world, and living with a disability is indeed expensive. Any generosity toward us is always welcome.
Checking in at the hospital is easy: The last time I visited the emergency room, I went to check in alone while my mom parked our van. I couldn’t physically remove my ID card from the back pocket of my phone, but the woman at the front desk told me I didn’t need to. “I recognize you from last time. You’re good.”
The same is true when I go to my regular appointments. Not only do the front desk people know me by name, but I also know them. We skip the formalities, chat for a minute, and then they grant me access without any issues. If a rookie ever tries to tell me where to go, I tell them that I could navigate the hospital with my eyes closed.
I cut in line to meet celebrities: At pop culture conventions, some people wait all day to meet one person from their favorite show or movie. But my disability card magically transforms into a VIP badge. Volunteers escort me to the front of the line, and I can meet as many celebrities in a day and get as many autographs as my bank account permits.
Since my first convention in 2014, I’ve met George R.R. Martin, Hayden Christensen, Giancarlo Esposito, Karen Gillan, Felicia Day, Andy Serkis, Jon Bernthal, Deborah Ann Woll, Charlie Cox, Billy Dee Williams, Henry Winkler, and many others. I could continue, but I’m betting that readers who share my interests are sarcastically telling me to rub it in more.
I can pee when and where I want: I wear an external catheter all day, every day. You do the math.
Not using a restroom when I have to relieve myself is great. Just recently, I saw Paul Thomas Anderson’s three-hour action epic “One Battle After Another” twice in theaters. During both screenings, I drank as many Diet Cokes as I wanted and didn’t miss a single frame of the movie.
I now recognize the hypocrisy of my telling my niece and nephews that bathroom humor is immature.
Sitting all day has its drawbacks, and over the years, I’ve documented the highs and lows of living with SMA. Now, as I enter another year, I am certain that I will face many more highs, lows, and in-betweens. Hopefully, the disability perks will continually replenish.
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.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.