By This photograph was taken by White House staff. As a product of the executive office, this image is in the public domain. - White House photo via www.technology.gov/Medal/2000/p_Photos-Clinton.htm, Public Domain, https://commons.wikimedia.org/w/index.php?curid=8304951
Ask anyone who has suddenly received a diagnosis of a disabling disease, "what was the first question or concern you had?" and they will probably recollect that they wondered "Will I end up in a wheelchair ?" For some reason, that thought overshadows almost every other concern, because that is the most discernible and visible thing we notice about any PWD with a movement disorder. Suddenly, that seems like the worst fate that can befall a human being, aside from death. And often, people express that death is preferable to "ending up in a wheelchair".
And sometimes the wheelchair-- or the idea of it -- is used as a threat. Huffington Post blogger Emily Ladau cites a perfect example in her 2015 article "Beware the Scare Tactics: Stop Negative Portrayals of Disability in PSAs" Emily cites a public service announcement [PSA] The PSA is about osteoporosis and urges its viewers to take care of bone health, or they will meet a hideous fate -- ending up as a wheelchair user . Click on the above link and read this wonderful article by a New York disability activist who tells it more eloquently than I ever could.
Says Emily "The ad shows a manual wheelchair being rigged to move via remote control, and then set loose in public while empty to chase people down. Combined with creepy horror movie music, the visual of an empty wheelchair moving on its own is meant to somehow convey the risks of osteoporosis". Oh, the devious wheelchair!! Out to get you and -- worse -- put your body in it for life!! And the PSAs tagline? "Beware the Chair!" Oh my God!! The wheelchair? Not the wheelchair! Oh God, don't let me end up in a wheelchair!
It's amazing how many people, upon learning of my diagnosis in 2004, asked "Will you end up in a wheelchair?" and not "Are you scared?" or even "Is there anything I can do to help?" I wonder if these same people would ask a friend who had been diagnosed with cancer "Are you going to die?"
Now don't get me wrong: I would rather be walking and not dependent upon a wheelchair, but I share Emily's sentiment that it's not something to present as a threat of doom. There are concerns that have come to bother me a lot more than the fact that I am a wheelchair user, the obvious one is that I have a disease for which there is no really effective treatment, is incurable, and always fatal. That last one is what freaked me out more than the wheelchair, believe me. My dreams blowing up in smoke at the age of 48 -- slim-to-none chance of ever having sex again or even finding a relationship at all, the fact that my friends and many relatives were running the other way, having to eventually share my tiny apartment with aides and losing my ability to speak -- just to name a few.
And this article made me think of other fates that are thrown in our faces, fates which often don't turn out to be as bad as we are led to believe. Like how many times did the adults in my life tell me that if I didn't change some aspect of my "behavior", I would end up unmarried. A dear departed aunt used to tell me that if I didn't "lower my standards" [her exact words] i.e. relax my criteria for a mate, I would "never find a man" and "be alone the rest of my life". and a variation of that was my frequent warnings that I needed to be tolerant of other people's lousy abusive habits or I would end up "a lonely old woman".
Well, I'm an unmarried woman in a wheelchair and I survive and even thrive. The depiction of the wheelchair as a fate to be dreaded is another stab in the back of me and every other PWD, and further contributes to our image as something to be pitied and an example of what you can become if you don't take care of yourself. What about you? Have you ever been threatened with a "you don't want to end up ____________ [fill in the blank -- in a wheelchair, a lonely spinster, a pathetic homeless person.........].
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