I expect that most people think that they have a pretty good idea of what it means to be disabled.
I know that I did. I was singularly focused on my inability to walk and do things that I used to do.
Thursday evening, I had the privilege of participating in a Halifax, Nova Scotia-based disability conversation. These folks mostly did not fit the neat and orderly definition of disability established by me. The people there suffered from a variety of issues, ranging from complications of Lyme’s disease, cerebral palsy, ADHD, PTSD, autism, the list went on.
Truly, after hearing them speak, I feel fortunate that I clearly identify as disabled. The wheel chair seems to give me away most times. Nope, the problem that I heard repeated over and over was the public’s inability to figure out just what could be their problem: “you look normal enough to me.”
A term that I learned at this get together was “masking.” The best that I can tell, this is where a disabled person either tries, or is directed to look and act normal. That is to say, to remove their disability as a legitimate cause for their special needs. And I cannot condone this sort of nonsense. Still, it does make some sense to me. While nobody would argue that a man who cannot hear does not need a sign language interpreter, what if the issue is not evident? How is this explained? How do you interact with a person who clearly acts differently than expected, but for no apparent reason? This seemed to be a thing for most of these folks- they did not suffer visible disabilities, or in some cases, could not even be definitively diagnosed. Yep, they are stuck.
The group seemed to universally dislike this masking construct. Makes sense.
It opened my eyes to a whole new set of societal problems. Just by coincidence, I came upon this academic take on disability. It is painfully long. Nonetheless, there is plenty of useful information to be had. Take a cruise through. You may be amazed at how much wiser you become.
2 thoughts on “What the heck does it mean to be disabled?”
“Invisible” disability. A true problem to face when one is dealt those cards. Mine became less invisible as I gradually progressed into needing a wheelchair, but my sons both still deal with the invisibility of their conditions. Also, I sometimes feel as though my chair has made visible my mobility challenges, it has resulted in increasing the invisibility of my other issues that sometimes outweigh the stability my faulty legs steal from me. An interesting conundrum to be in.
That is kind of catch 22, one that I never thought of, being pretty singularly disabled. I can tell you that I hear you loud and clear. I have been meeting with a Halifax-based disability group that largely suffer from ADHD, autism and other invisibles. What they describe is truly horrible.
I feel for you and your boys, for whatever that gets you. Still, keep it straight!
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