The Name Game: Where Did our Disability Names Come From?

Hello, readers,

Once again, I’m thinking about words. (I know, huge shock, huh?) And once again, I’m thinking about the words we use and why we use them, especially where disability is concerned. Now, unlike the other posts in this series, this one is not exactly a call to change the way we speak about disability, simply because the words being focused on are not common descriptors like “retard,” “rehabilitate,” or even “disability,” like the other words we’ve discussed. No–these are actual names, and changing them would take a ton of work and new thought patterns. I’m not sure if those names would ever be changed completely. But the tone of the names do give one something to think about.

What names am I talking about? Well, the title of the post might give you a clue: the names of disabilities themselves. Go over some of them in your head right now. Down’s Syndrome. Fragile X Syndrome. Cerebral palsy. Asperger’s Syndrome. Notice what they all have in common? Right–they’re “downer” names. Their connotations are negative. I mean, the word “syndrome” conjures up images of a tragic, incurable disease. The “fragile” in Fragile X connotes, wrongly, that the person with the disability is fragile, even “broken.” “Palsy” is a word denoting uncontrolled limbs and function, and connoting, once again, disease, lack of control over one’s own body, and basically, something to pity or avoid. And Asperger’s Syndrome–okay, I know that one was named for an actual person, but did anybody ever think of how it SOUNDS? Forget the “syndrome” connotations, as if those weren’t bad enough. The way we pronounce “Asperger’s” conjures images of, as Jodi Picoult’s character with AS, Jacob Hunt, put it, “a grade Z cut of meat…donkey on the barbecue.” Eck.

And even if a disability doesn’t have a fancied-up medical name, most disability names still have a “downer” tone. Why do you think the political correctoids of the universe would rather say “visually challenged” than “blind,” or “hearing impaired” than “deaf?” Part of that, of course, is because they don’t–or don’t want to–understand people first language. But part of it is, the actual names “blind” and “deaf” have been used negatively, even as slurs (as in, “Hey, lady, you blind?” to the driver in front of you), that we felt we had to water them down. So we came up with phrases that include the words “challenged” or “impaired”–phrases that still focus on can’t, not can. I actually wonder if these “alternatives” are worse than the original words.

And how about other disabilities, like OCD, PTSD, ODD–all those? Most psychological disabilities have the word “disorder” attached, which again connotes brokenness, abnormality, or weirdness. For crying out loud, the acronym for Oppositional Defiance Disorder even spells O-D-D! When one considers the awful stigmas still attached to psychological and mental disabilities, one has to wonder why we labeled them with such negative names.

In fact, let’s probe into that question: where did those names come from? Once again, I think you only have to go to one place–the doctor’s office. Okay, maybe two places, there, and medical schools. Once again, I don’t mean to dis the medical community. Heck, if I had the math skills, chemistry skills, and a stronger stomach, I might’ve gone the Michaela Quinn route and become an intrepid lady physician. But the medical community does continue to struggle with a chronic illness–the illness that says disability is unnatural and, at its core, a defect that must be “fixed.” Hence, the names that label, denote, and connote that attitude. And through that come the negative reactions a lot of people with disabilities encounter when they, ahem, “come out of the closet” and admit they have extra letters attached to their names. (I would argue that the population of people with disabilities remains even more “closeted” than the homosexual community, because even though we’re out there, our differences visible, those differences are not given very much graciousness. Some of you might not like this, but I’d argue that the homosexual community at large, in today’s world, gets more grace and–all right, all right!–tolerance than people with disabilities do. Heck, living with a disability can be like living with one’s very own set of scarlet letters.

Of course, the next question is, okay, what are we gonna do about it? We can, and should, continue to push for disability to be accepted as natural, and change the medical model. But will the medical, “expert-coined” names we’ve always used for disabilities ever change? Honestly, I don’t know. I don’t think anyone does, and I’m not sure what those names would be replaced with. But use your imagination for a minute. Play one of my favorite games with me–the what-if game. What if we came up with positive names and associations for the disabilities in our lives, ones that focused on the people with them, and what they CAN do? Would the world look and sound different? And what would that do for the rest of us?

In honor of my favorite television show (you guys know what it is), I’d like to leave you with another TBAA quote. In the episode “An Angel by any Other Name,” Taylor, an angel with Down’s Syndrome, explains to his hostile neighbor Carolyn that “We are all hybrids,” just like her personally created, gorgeous roses. And it occurred to me as I heard that quote, he’s right. But a lot of us won’t admit that we’re hybrids–that we’ve got beautiful colors, yes, but we’ve also got thorns. And instead of seeing people with disabilities as fellow roses, some of us carry around vestiges of the worldview that says they’re unfortunate, stinky weeds. We even call them “weeds,” through universally accepted names. But what if we didn’t? What if we used names worthy of beautiful hybrid roses instead–the names we’d pick for ourselves?


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