Every parent dreads getting certain questions from their children. Most fear the inevitable “Where do babies come from?” While I certainly also have a healthy fear of that question (and no plan about my answer), what I really fear as the mom of a disabled kiddo is the question: “Why am I different?” or more accurately “Why do people treat me like I’m different?” As Mommy, that question rips my heart in two and simultaneously turns me from a low simmer to a boil. Sadly, other people’s attitudes are one thing this Mama Bear can’t fight off.
A few weeks ago, my son and I went for a walk. Just two disabled folks out for a stroll. We got quite a few stares. None of them seemed mean-natured, and most of them were followed by a quick smile. Still, my son noticed. “Why are they looking at me?” he asked. I was taken aback because he hadn’t seemed to notice it before. I stumbled through a true (albeit probably not accurate here) answer: “Because you’re so cute.”
I didn’t want to break his heart with the fact that he will always be different in other people’s eyes and not always in a good way. I wanted to stretch out his innocence a little bit longer. I know that soon enough we will have to have this conversation. He will come home mad or in tears because somebody said something not so nice about his wheelchair or his skinny legs and arms.
My son and I have already talked about why he can’t walk. SMA: it has a name. That’s the easy part. “Why do other people care so much if I can’t walk?” That’s the harder question. But after some pondering and soul searching, I think I have my answer to this one: “They don’t know you; they don’t know the other cool people we know with disabilities. The people around us are still a work in progress. We have to be ourselves and hope that other people catch on.”
My answer to this question is one of the reasons that I’m so excited to be Mom to my kiddo–a “roll model” if you will. (Sorry, mom jokes suit me.) I can show him how to stand tall from a seated position and to “roll” with the punches, or the stares. (Last one, I promise.) I want to give him the tools he needs to be a disabled person in an able-bodied world. Tools that I have found over the years.
Nowadays the stares don’t bother me too much. I’ve learned that other people’s attitudes don’t have to define my view of myself. It took years for me to get there, but hopefully I can build on my experience and teach my son that same self-confidence early. We won’t have to reinvent the wheel. (I guess I lied.)
I saw a quote from Harry Winston that I loved so much I put it on a shirt: “People will stare. Make it worth their while.” I hope that between my work as an attorney, my performance as an improviser, and my life as a mom, I have made it worth their while to stare. And I hope that my son can understand that he is also worth staring at.
Katrina Gossett Kelly wears several hats. She is an attorney at Faegre Baker Daniels in Indianapolis, specializing in trade secret litigation and e-discovery. She also performs improv at ComedySportz Indianapolis and serves as a disability advocate throughout Indiana. Her favorite job of all, however, is being mom to her young son, adopted last year from Bulgaria—an adorable little boy with the same disability as Katrina, spinal muscular atrophy.
Published on February 22, 2019