For some people multiple sclerosis is an invisible disease, but not for me. I can’t hide it, because I have physical disability. I use several mobility aids including a cane, a device for foot drop, and a mobility scooter. I’m fairly noticeable I suppose. And I get a lot of unwanted attention in the form of comments, stares, and pointing fingers to remind me all the time.
I know that human beings are visual creatures. We are obsessed with appearances. So when people see me they first see features like my hair (because I’ve got so much of it), my face, and my disability, before my other attributes. But what empowers complete strangers to comment on my disability escapes me. I’m really not shocked by it anymore. I expect it. Lately though, I’m losing my tolerance. I don’t think a week goes by when I’m not accosted by some idiot who thinks they are clever.
I attended a work seminar last week. I used my scooter since it took place in a large building surrounded by a large parking lot. Inside, the seminar was held in a big open room with rows of chairs. I parked my scooter at the end of a row and sat down in a chair. Some guy squeezed by my scooter and me, sat down, and asked, “How did you get that chair out of Wal-Mart?”
“Huh?” I replied uncertain if I had heard him right. And then he repeated himself. I then pointed to my scooter and asked him if that was what he was referring to.
“Yes,” he replied. “Not that funny I guess.” I told him I’d add that one to my list. And he responded, “I’m sure you hear a lot.”
So why then? Why does this man, a stranger, make this comment while in the back of his mind he knows it’s off-color? He knows I field far too many comments just like this one.
A couple months ago I had a work meeting away from my office. Again, I was using my scooter. In attendance were some people I have worked with before, and some were new faces. After the meeting, I said goodbye to the other attendees and exchanged a couple business cards. Then after I said goodbye to a person I had never met before he said, “Nice scoot-scoot.”
“Yeah,” I mumbled, now uncomfortable feeling my disability had been trivialized.
I know this comment wasn’t meant to cause harm, but it did. While it perhaps was meant to be playful, it was demeaning. And this is what I deal with all the time. I have had experiences like this for nearly 10 years now. It started well before the scooter when I first began having gait issues and I was asked if I had a “hitch in my giddy up” or if my feet hurt because of the appearance of my stride. It continued when I started using a cane, when instead of the cane being a visual explanation, I was asked if I was “gimpy”.
If all the people who’ve said things to me over the years could just live in my skin for a bit. See just how thick it has to be to live my life. See what I put up with. See how it feels. I struggle to not let these experiences have a negative impact on my life. I try to find humor and laugh at the audacity of these people, but it gets old. Plain and simple. People have to think about what they are saying to me. They have to be accountable and think about what is coming out of their mouths. Most of the time I don’t respond to the things people say. But am I doing them, or myself, any justice by letting their words go unchallenged?
I hope for a day when these insensitive comments end. Based on my experiences, it can be difficult for me to believe it will ever stop. But I had an encounter that does give me some hope. It took place recently when a four-year old girl engaged me in conversation, examined my cane, and said, “I like your stick.” What a brilliant little girl.