“I am invisible, understand, simply because people refuse to see me.”
-Ralph Ellison, “Invisible Man”
I’m 5 foot 8. Half of my head is shaved. I wear bold makeup and jewelry. I’m hard to miss. And yet somehow, I have managed to (quite literally) stumble upon the secret to attaining one of the superpowers I’d mentioned in another article I’d written late last year: invisibility.
Regular readers of my blog or of one of my more recent MS Connection posts know that I’d recently sustained a tibial plateau fracture, which has rendered me essentially immobile since the beginning of summer. And boy, has it been a humbling, eye-opening experience. Not only has it offered me a very small and limited peek into what life could be like if my MS progresses and what life is like for so many people around the world, but it has also given me a sampling of what it means to have a visible disability.
When your mobility is limited, your physical world also becomes limited. In the time between becoming injured and my knee surgery this summer, I didn’t leave my home much. On the rare occasion that I did leave, accessibility for me was often not considered. It was an afterthought. After surgery, with instructions to not put any weight on my leg for 10 weeks, my world has mostly been reduced to a room and what little sanity I have left.
What if there is a fire? What if someone breaks into my home? What if I find myself in a dangerous situation in which I need to get away very quickly? How would I safely escape or defend myself and my home?
I have ventured out into the world a few times since in a wheelchair. And once I’m in that chair, despite rejoining civilization, my world gets even smaller. Most people do not offer help with opening doors or reaching for items on a shelf for me. People walk into my chair, despite me being directly in their path, as if I’m not even there. All I see are butts and crotches.
When I am noticed, the energy changes. It feels uncomfortable and awkward.
A disease that is, in most cases, invisible is bittersweet. “You don’t look sick.” How many times have we heard that? On one hand, people don’t believe that I’m feeling awful because I look just like them (you know, aside from the shaved head). On the other hand, I’m thankful that my MS isn’t at a point (yet?) that requires me to use equipment that might make me “look sick.”
Not being able to get around much on my own while recovering from knee surgery has given me a rare gift—seeing disability from the other side, when the affliction transitions from invisible to visible and the way you feel about yourself simultaneously does the reverse and changes from visible to invisible.
At least, that’s been my personal experience.
Thing is, for now, this is temporary. Sometime this fall, I’ll be able to start putting weight on my leg again and eventually will be awarded the luxury walking and living as I did pre-injury. For most people living with MS-related physical limitations, it’s not a short-term situation.
I’m fortunate to be able to say I have such amazing caregivers, but that is not the case for many people who do far more than I’m currently doing, and they do it all by themselves. Those people are the real superheroes, and society barely gives them any notice.
And isn’t that what we all want, to be noticed in a positive light?
So! Find your nearest spoonie—upright, wielding walking aids or wheelchair bound—and look them directly in the eyes. Acknowledge them. Recognize them.
Notice us. I’m right under your nose. Literally. Because wheelchair.
I’m just like you.
This article was authored by Cat Stappas and originally published on the National Multiple Sclerosis Society’s blog, MSConnection.org, on October 11, 2017.