One of the questions I hear the most from people is “Are you sure you should be doing that?” This is a question that is understandably the most frustrating question to deal with when you are disabled or have limited mobility.
Now this is a question that can sometimes lead to arguments. And sometimes when someone becomes an overzealous helper, I will end up scraped and bruised from a person who would, unknowing of my capabilities, grab me in an attempt to assist. I can not stress to you enough, this happens. All.The.Time..
I have FSHD Muscular Dystrophy. And these days, my wheelchair is a dead giveaway that I am disabled. But, I’ll be the first to tell you that I require no handling or assistance with any of my personal needs or independence.
I know what I can and cannot do, and the abilities my body has. I also strongly believe that whatever you can do on your own, you should, always. Because someday you may not be able to anymore.
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I didn’t anticipate anyone else’s perception of my capabilities would sometimes dictate what I get to do and what happens to me.
Right now my only issue with independence is trying to purchase a wheelchair adapted vehicle for my 300+ lb. wheelchair.
Anyways, so why does this seemingly innocent question just grind my gears?
Because, when I am around others, they form an assumption of what I am capable of doing and what I am not, simply by the judgement of the physical symptoms of my FSHD, and since these days, I roll into a room instead of walk.
This is true with doctors, friends and strangers. Sometimes I will even be lectured over the dangers of “overstepping the boundaries” of their presumed limitations I have and how it’s “OK to just let go of what you shouldn’t be doing any more.”
That sounds like you’re telling me to just give up?
Quite frankly, it seems everyone except those who know me closely tend to treat me as if I have no ability or independence whatsoever.
It’s assumed that since I can’t walk that I also can’t drive, parent my daughter, that I can’t dress myself, do transfers on my own. Hell, most will assume that I can’t do anything! Placing on their delicate gloves to wait on me hand and foot in that overly nurturing way just screams oppression.
All I hear on my behalf is can’t. Can’t. Can’t.
But I can do it. I know people mean well. And sometimes I’ll let them have their version of me. Only because it’s easier that way.
Truthfully, there isn’t much I can’t do. OK, yes, because of my FSHD, I can’t reach things above my head, and I WILL call you an ass for playing keep-away with me.
How is this supporting me in what I can do, if it’s continually insisted upon me that I can’t or shouldn’t? For one, it’s a dead giveaway as to how much you know about me or my disability. And two, it shows the lack of interest in getting to know me as a person at all.
When it comes to having a disability, when you are using a wheelchair, and have limited mobility, it’s the abilities that count and together we have to encourage independence. We should be doing everything we can within our own abilities to help those who may have challenges come to their full potential..
All we are doing is tearing down someone who may have a disability all the time saying can’t, can’t, can’t.
It’s no wonder why many don’t even try, try, try.
Maybe one way we can begin to alter our perceptions of disability is to change they way we speak about one another. Positive talk, can lead to a positive perception of disability.