The best way to challenge misconceptions about what it means to have a disability is to share our stories and celebrate our differences
When I was 2, I was diagnosed with central core disease (a disease that causes problems with the tone and contraction of skeletal muscles). Doctors told my parents, who were trying to wade through the unknown waters of this thing called “neuromuscular disease,” that I would never be able to walk on my own without a walker or crutches. But years of physical therapy, leg braces, a walker and a pair of crutches later, I defied the odds and today walk on my own.
|Jackie Witt, who also contribtues to the MDA Transitions Center blog.|
The ability to walk is something for which I am extremely grateful. I am able to live fully independently, save for needing help up the occasional curb, when I’ve fallen, or lifting heavy things. With this ability, though, comes a unique set of
challenges — challenges stemming from the fact that a lot of people think being disabled only looks one way, and that way usually involves using a wheelchair or having some sort of support item like a cane.
Because I don’t utilize any of those readily identifiable touchstones of “disability,” I get questioned a lot — about my limp, for instance. People think that since I’m able to walk, my limp must be the result of having hurt my leg or foot. I’m also questioned a lot when I park in handicapped parking or assert that I can’t walk up stairs.
I’ve struggled a lot with this strange dichotomy in my life: People ask me about a limp I wish they sometimes wouldn’t notice, but then they don’t seem to believe me when I assert that I do have a disability. As often as it occurs, this scenario remains a source of anger and frustration for me, I admit.
I also won’t deny that it creates some interesting challenges when it comes to dating, especially online dating. My personal approach is to tell someone about my disease after a few message exchanges; I don’t want to go through the trouble of investing time in someone who isn’t going to be interested once he finds out I have a disability. Unfortunately, disclosing specifics about my diagnosis early on can lead to a lot of unreturned messages or dates that never happen at all. I’ve had someone tell me flat out that my disability was something he couldn’t deal with. I think, again, this is in large part because when people hear the word “disability,” they attach a set of preconceived notions to it, instead of just seeing the person.
None of us has to justify our value to anyone else just because we were born with different abilities.
The reality, though, is that I think people just aren’t aware. I think more times than not, they don’t say or do things out of malice or ill intent; they just don’t know what else to say or do. That doesn’t mean that I think anyone in my position is not justified in being hurt or upset when a complete stranger notices a limp and says something like, “That looks like it hurts.” Or when an employee at an amusement park tells you that, “The line for the stairs is the other way,” when you’re just trying to use the park’s own disabled-access program.
But the more I’ve thought about this problem over the years, the more I started to ask myself why I was letting it get me so down — sometimes downright miserable — about the way others were responding to my disability. What I realized is that the only person who has to truly love and accept me is me, and it’s a waste of my already precious physical and mental energy to get upset at people in those cases, especially when they probably didn’t mean any harm in the first place.
My roommate’s cousin teaches at Loma Linda University, the hospital where I actually had my muscle biopsy, and last year she asked me to speak to her class. She wanted her students to see the very thing I’m talking about now: that having a neuromuscular disease or a disability doesn’t look just one way. I was happy to do it.
In fact, spreading that awareness is the very reason I’m so passionate about telling my story and encouraging others in the neuromuscular disease community to tell their stories.
If you use a wheelchair, your story matters. If you don’t use a wheelchair, your story matters. The more we share our unique, amazing stories — our struggles, our successes — and the more we see people with all different kinds of disabilities represented in movies, on TV and in magazines (I could write a whole separate article on just that topic), the more the world as a whole will realize that living with a disability is just another way of being. It’s another way of being that doesn’t look just one way or have just one face — it can’t be defined by one solitary set of easily identifiable circumstances.
I think there are always going to be times when I’m hurt or annoyed when someone asks me about my limp or questions my disability; I’m only human after all. But if my encountering those people, and if their seeing me in person and hearing that I have a neuromuscular disease, can help raise awareness about the fact that living with a disability can come in all different forms, then I’m more than happy to endure some hurt feelings or a little annoyance from time to time. As those NBC public service announcements used to say, “The More You Know!”
Jackie Witt, who was diagnosed with central core disease at age 2, works as an editor.