A Pained Life: What's in a Name?
/By Carol Levy
First, we were called “handicapped." It was a wholesale term to paint all those with physical, emotional or intellectual limitations. One inability meant total inability. Often, it was used as an exclusionary term, to mean someone was “less than.”
Eventually, it was realized that handicapped was a demeaning term. So, they changed it to “disabled.” That too was belittling — a word that tended to make us seem less than whole.
Then came physically (or emotionally or intellectually) “challenged.” That sounds better. After all, being challenged just means you have to try harder to meet goals and objectives.
But even that term carries a subtle meaning: we can overcome challenges if we just “try harder” or “do better.” It suggests we are too lazy, too much of a malingerer, and don't want to even try.
There has to be something better. In thinking about this, I had an “Aha!” moment: I am not disabled, I am “unable.”
That seems more appropriate. After all, being unable in one sense does not mean unable in all. "I am unable to answer the phone right now. Please call back later.".
Because of my trigeminal neuralgia, I can't use my eyes for more than 15 -20 minutes without severe pain. I can't tolerate wind or even a slight breeze against the affected side of my face.
But the rest of me is able and willing. It only makes me unable to do things that require the use of my eyes. I am still able to do things that are physically demanding. I can walk, talk, think, exercise, and thankfully take care of myself. That is far from being disabled.
Others among us may be unable to lift things, clean a room, or even walk. But we can still think, talk, read, and interact with others, even if only on the phone or online. We are “unable” in part, but able in many other ways.
But, at the end of the day, does the term used to describe those with inabilities really matter? Most healthy people don’t even consider the label, it’s just a way of quickly describing someone.
Quick descriptions, though, lead to stereotypes and misunderstandings. Take, for example, someone parking in a “handicapped” parking spot.
They may have the placard or license plate that gives them permission to park in these spaces, but when they exit their car and start to walk away, another person may object. They’ll start yelling, “You're not handicapped! How dare you park there and take the space away from someone who actually needs it!”
I have had this happen to me. But it’s too hard to explain what trigeminal neuralgia is, and how the wind or even a breeze could set off a pain flare.
Instead, I say, “I do not need to have a cane or wheelchair to be disabled. I may have a heart condition or emphysema or any number of other disorders that make it difficult for me to park farther away from the entrance.”
Looking abashed, if you're lucky, the person walks away.
It would be nice and so much easier, if I could respond by saying “You're right. I am not handicapped in the way you expect me to be. I am unable physically in a way that may be invisible to you, but necessitates my using this spot.”
I keep my fingers crossed, hoping it’s a teachable moment, that this person will understand that “unable” in one sense does not mean unable in all. Maybe, if we're all really lucky, she’ll be able to pass it on.
Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 40 years. She is the author of “A Pained Life, A Chronic Pain Journey.” Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.
