I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
Living in a disabled body in a predominantly able-bodied world is a rare experience that, frankly, I never anticipated having. Especially in my 30s. But thanks to my progressing Friedreich’s ataxia symptoms, it’s an existence I’m now, unfortunately, getting more and more accustomed to every day.
While many of my symptoms aren’t visible or obvious to the casual observer, my main one, loss of balance, is, because I depend on a walker. The settings where I usually find myself — school and church events with my children, youth sports games, family-friendly restaurants, and spots around my neighborhood — aren’t often crowded by people with disabilities, so I stand out.
Although I’m constantly aware of my mobility aids and the reasons I need them, no matter the setting, Friedreich’s ataxia (FA) and its resulting disabilities aren’t always at the front of my mind. My walker and scooter often feel like automatic necessities, like shoes, clothes, and backpacks are for most others. This makes it easy to ignore my reality sometimes.
Unfortunately, outings aren’t all created equal. While I’m extremely fortunate that most of my interactions are pleasant and leave me with a view of the kindness in my corner of the world, not all of my outings work out that way.
The not-so-pleasant interactions
Some people view mobility aids as an invitation to inquire about my physical health in a way that most strangers would never dare to do with others. Just the other week, for example, I took my kiddos to get burritos, and the burrito assembler, after noticing my walker, said, “Oh, do you have a little baby in there?”
I said, “Nope, not a baby stroller. It’s a walker.”
He said, “Oh, man, what happened? Do I need to see the other guy?” When I asked what he meant, he said, “I figured you got injured beating the hell out of someone that crossed you or something!”
“No. I don’t use this walker temporarily for an injury,” I said. “I have a disability.” I chose not to provide this bold stranger with any further information because I didn’t want to upset my children, who were standing right beside me and listening to the entire interaction.
I also have to deal with oblivious people who let doors slam in my face and those who belittle me and treat me like I’m incapable of doing absolutely anything on my own. Recently, a stranger took it upon herself to push people out of my way before shouting to the confused and massive crowd that she was “clearing a path for me.” It was mortifying.
I also have the heartbreaking task of disappointing my loved ones by being unable to do things they wish I could do. One morning, my daughter was telling me all about her dream. It was about the end of “Despicable Me,” when the characters have a giant dance party. She said, “Everyone [in the dream] was booty-shaking dancing, even Banana, Travis, Hank, and Betty [our cats and dogs]. And you were dancing, too, without your walker!”
I don’t envy those who are simply trying to figure out how to interact with the disabled 35-year-old woman who’s just trying to navigate life. I don’t think there’s a universal rule that applies to all disabled people in all situations. I simply wish that more people were like my 6-year-old daughter, who accepts my reality even though she doesn’t fully understand it, helps me when she can, sees me for more than my disabilities, and innocently wishes for a better future with me.
“Be humble and gentle. Be patient with each other, making allowance for each other’s faults because of your love. Try always to be led along together by the Holy Spirit and so be at peace with one another.” — Ephesians 4:2-3 (Living Bible)