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.
“Life isn’t fair.” “No one said this would be easy.” We have all heard these platitudes and we’ve all repeated them. And yes, there is truth in these well-worn phrases: Life is hard, messy, emotional, and unexpected, and it’s also predictable, inevitable, and complicated. But it can be beautiful, hilarious, fulfilling, and full of lessons to learn. It all comes down to your approach.
Last week, I was traveling across the country for another visit for the Friedreich’s ataxia clinical trial in which I am participating. (Search #Kendallrta408 on Facebook and Instagram to see more about my journey.) As I waited in the handicapped section at the airport with my friend Kelli, the airline’s gate attendant tried to get all of the preboarding passengers squared away. She approached us and said, “Whose walker is this?” I said, “That’s mine.” She looked at me in surprise and said, “Oh, but you’re too young to have a walker!” and then proceeded to check me in.
I gave the attendant a polite smile. I could see Kelli biting her tongue to hold in her words. When the airline employee left, Kelli and I talked about the exchange. She said, “You’re a bigger person than I am, I would have said something.” But I didn’t feel right saying something in the heat of the moment. I know that lady meant no ill will; she’d just made a common (albeit, ignorant) mistake.
Yes, I am young. And no, it isn’t common to see a young person using a walker. But she shouldn’t have said that. Disability and hardship know no age limit. I use the walker to keep me safe and help me to get from point A to point B. At first glance, I may not “look disabled,” but that doesn’t mean that I am not.
I don’t want to be “disabled,” so I do whatever I can to avoid that label for as long as I can. I don’t let my walker define me. It’s just a piece of equipment — it isn’t an extension of me. I refuse to get sucked into a negative, angry, isolated place. I put a smile on my face and put my best foot forward while I can. I want to be a positive light in this world, despite my disability.
Life is hard enough without snapping at people who are trying to be sympathetic. Now, if the airline employee had caught me in a bad mood or been the fourth or fifth person to say something like that, I might not have let it slide. In hindsight, I should have thought of a gentle way to let her know that her comment was inappropriate. I should have told her that I know that I am “too young.” Because I think it all the time: This is unfair, I’m only 31, I shouldn’t be using a walker. I should be carefree and capable like the other 31-year-olds I know.
But I’m not carefree, I do use a walker, but I choose to carry on, to get up, get dressed, and live my life, despite my disability. Yes, there are days when I succumb to the sadness, when all I want to do is lie in bed with a spoon and a jar of Nutella, bingeing on Netflix to escape my life’s hardships for a while.
“Life isn’t fair.” And “life is hard.” Well, yeah, it is hard. Did you ever hear it would be easy? Life has handed the FA community some pretty sour lemons. We have a choice. We can be bitter about it — we certainly have a right to be — or we can try to make lemonade.
I am trying to make the world a more positive, accepting, brighter place. I want to make the people I encounter a little bit sweeter. So, I chose not to snap back in bitterness that day. I hope she won’t make comments like that again, but if she does, I wish that she be met with grace and wisdom. Because we all need more of that.