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Archive for September, 2012

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?

I Feel Pretty…Oh, Wait, No, I Feel Disabled: People with Disabilities and Perceptions of “Pretty”

Hello, readers,

People love pretty things. Whether it’s trees bedecked in red and yellow leaves, gorgeous evening gowns, clever window displays, flowers in full bloom, or shiny, polished apples, we can’t help but be drawn to what is “pleasing to the eye,” as Eve tragically discovered. Of course, in this age of egalitarian thinking and political correctness, we’d all like to say we’re “above” noticing beauty first, or reacting when beauty isn’t there. This is especially true of our reactions to our fellow humans. We don’t want to admit that we notice when one person is, in our own humanly flawed estimations, prettier or more handsome than the next one. And most of us don’t say it. But we think it. And despite the attempts of others to tell and show us that everyone is beautiful, we often grow up with perceptions of what “beauty” is, and what does or doesn’t fit that definition.

We could spend the entire blog post talking about that–why the blonde-haired, blue-eyed, stick thin version of femininity has taken over Hollywood, why African-American women struggle with the idea that lighter skin is prettier than darker, why boys grow up believing they have to have six-pack abs to be attractive to girls, and so forth. But that side of this topic has been talked about a lot. Here’s the side of it I don’t think we talk about enough: the fact that, no matter what their skin color, hair color, eye color, or other physical features, people with disabilities still struggle, even today, with the perception that they are not beautiful.

Think about it. Generally, when you turn on the television and watch a show or commercials, how many different representations of different groups do you see? You see white, black, Asian, American Indian, and all other kinds of actors. You see different shades of skin, eyes, and hair in ad campaigns. You even see different lengths and types of hair in these campaigns (particularly the Dove ads–thank you, Dove, for those). You see different eye shapes (well, except the usual almond-shaped eyes of Down’s Syndrome, but we’re getting there). What do you generally NOT see? That’s right–a person with a disability. If you do see one, he or she is usually in a wheelchair. Now, I get the fact that a wheelchair may be the easiest way to portray “disability” in a thirty-second commercial. But that kind of setup does seem to say, “All people with disabilities use wheelchairs.”

And what about models with Down’s Syndrome? Yes, I have seen them in magazines, and yes, I think it’s a step in the right direction. But here’s the thing. Most of those models are babies or little kids, and critics do express the opinion that, “When they’re no longer cute, they won’t be able to do this anymore.” As if Down’s Syndrome is somehow acceptable on a baby or five-year-old–even cute or petty–but, oh, NEVER on a teenager or adult. At that point, it’s just sad, right? It’s even ugly, right? WRONG.

This is not to say that everything in the public media is totally against people with disabilities feeling beautiful. Bless them, they do try. But is it enough? I would argue no. Let me give you an example: Wheelchair Barbie, or, to use her real name, Becky.

Becky was made in 1997 and marketed as Barbie’s friend with a disability. The auburn-haired doll (a nice change from the usual blonde) came with a pink plastic wheelchair. Good idea, right? Little girls with disabilities could now see that there was a Barbie “like them” out there.

Oh, except for a few glitches. Becky’s wheelchair wouldn’t fit through the door of Barbie’s Dream House (guess she couldn’t come to all those cool parties then, eh?) And her hair was so long it would get caught in her wheelchair’s wheels. In other words, she was not a realistic representation of disability.

Mattel did make some improvements to Becky, but after the initial frenzy, she was never seen again. In fact, Mattel discontinued her (and an “athlete” version called Paralympic Becky). Now, I’m not saying little girls need a Barbie doll to feel beautiful. If that were true, we’d all be in trouble. Girls who wrap their self-esteem around temporal, marketable things like clothes, makeup, and yes, Barbie, often grow up to be insecure, unhappy women. But that’s not the point we’re trying to make here. The point, as a girl named Morgan said to her mother, is, “Aren’t handicapped people pretty enough to be Barbie dolls?” Right, Morgan. If black, tan, Asian, curvy, and even cancer-treated baldness, are good enough to be considered “pretty,” then why not disabilities?

Think about it. We have never seen, for example, a blind Barbie who comes with her own cute stuffed guide dog. Or a deaf Barbie, a Barbie who uses braces or crutches, or–oh, the world would surely end with this one–a Down’s Syndrome Barbie. But why on earth not? I think it’s because, even though our world is slowly changing, we’re still holding onto some stale ideas about people’s looks and physical figures. And one of those stale ideas is, disability = ugly.

No–I think that attitude is ugly.

So no, we don’t all have to be Barbie or Ken dolls. But how about we start thinking of how to make the people with disabilities in our lives feel beautiful? This is just a theory, but maybe if we do that, the public will start seeing disability as beautiful, too.

It’s Not for Wimps!: A Message for The Warriors of September 11, 2001

Hello readers,

Yes, today is the eleventh anniversary of 9/11, and I’m sure many of you have already seen thousands of Facebook posts, television clips, and etc. to that effect. But I do feel that the police officers, firefighters, survivors, and survivors’ families deserve great honor and respect, so I hope you won’t mind seeing one more.

Why have I dedicated a post on this blog to September 11? Well, for two reasons. One, disability is, I think, a concept that naturally permeates a tragedy like the falling of the Twin Towers, in more ways than one. On September 11, 2001, we saw firefighters, police officers, and medics put their lives on the line like never before. And what is it that these people do? Yes, they save lives. Death is the enemy of every human who walks, wheels, or otherwise gets around on this planet, and the people I have mentioned should be constantly hailed as the heroes they are for that alone. But the problem is, in our world, a construct exists that says these people also “save” us from disability. No, those words are seldom, if ever, used. And yes, the type of injuries sustained from a 9/11-size disaster are grave and should be taken as, pardon the cliche, dead serious. If healing is at all possible from such an injury, then yes, in a perfect world, it should happen.

But this world isn’t perfect, is it? That was a giveaway question–obviously not, or we wouldn’t be having this conversation. The problem is that, when people are permanently injured–thus, sustaining some type of disability–it’s seen as a tragedy and curse. Now, again, I am not saying grief over that kind of thing is inappropriate. But once the initial grief ends, where do those who sustain disabilities from these catastrophes–police, firefighters, medics, and especially veterans–find themselves? They are left to contend with a world that not only says, “This shouldn’t have happened to you” (true), but also, “You are now an anomaly, and your state of life will forevermore be unnatural” (false).

Am I trying to say that the friends, families, and other loved ones of people who sustain disabilities don’t care, or that they brand their loved ones as abnormal freaks? No way. Nor am I saying that if you are, say, a veteran with a disability (which includes mental disabilities, PTSD, and other “invisible” ones), that you will be branded as “less than” everywhere you go. Most of us, myself included, will have nothing but respect for you and what you have sacrificed. But because society at large does look at disability as a terrible way to live–as a way that no one should want to live–then those who sustain disabilities from things like 9/11 have to face a two-pronged attack. Not only do they have to deal with the physical or emotional aftermath itself, which is bad enough, but they also have to deal with being viewed through a different societal lens. And as we know, that lens has bookoos of problems in it.

So, for any veterans, emergency personnel, survivors of 9/11, or anyone who has ever sustained a disability from a 9/11-like disaster who’s out there listening: That’s what society says. But the truth is:

1. Your disability is, yes, a different state. But it is also a natural state (read the rest of the blog).

2. You are still a person first and foremost, with hopes, dreams, goals, and a future.

3. Having a disability doesn’t make you weak or “less than” in any way. The truth is, folks, disabilities are not for wimps! If you don’t believe me, go back and read previous posts, especially March’s post on The Survivors’ Club. Or better still, go talk to and spend some time with someone who has a disability, particularly if that disability is new to him or her. What you’ll hear will convince you that they’re blazing new trails by living this way. And no, it’s not “brave”–if what you mean by that is the “sweet, pathetic” version, as in, “Oh, I don’t know how I’d ever learn to ___ all over again if I were you” or “You’re so BRAVE for walking down the block!” No–it’s brave because every day, these people are choosing to survive. They choose to break down barriers and stereotypes. And they choose an ingenious way to live that not everyone experiences. You want to know why I think people with disabilities are in the minority? Simply because I don’t think most of us could handle it!

If you’re a veteran, or someone else with a new disability, who’s reading this and are feeling scared, that’s perfectly natural, too. This is all new to you. And in posts to come, I’ll be offering encouragement (hopefully humor-laced) on what you need to know about living with the big D, instead of letting it live for you. In the meantime, just know that I, and many, many more of us, honor, respect, and thank you. You didn’t have to go out there and fight for us or save our lives. You could’ve stayed home that day–whatever day it was that your life changed–and you wouldn’t be dealing with the things you face now. But because you didn’t do that–because you chose instead to live your normal life, not even knowing if you’d have one in a few hours–

THANK YOU.

You are not a wimp. You are, in fact, some of the strongest people I know.

Yet Another Cinderella Story: What Kind of Labor Force are we Creating?

Hello, readers,

I hope everyone had a lovely Labor Day weekend. In fact, labor–as in, jobs–is what’s on my mind today. No, this is not a post about the dismal economy. Yes, it still stinks, but there are people in America who still have jobs. My question is twofold: how many of those people have disabilities, and what kind of jobs do they have? Actually, we could even go threefold here–are the jobs ones that people with disabilities actually want?

Now, I hear some of you skeptics in the audience: “Here she goes again, proposing that people with IQs below 100–heck, below 75–can and should go to Harvard.” Or, “Here she goes again, suggesting that if we ask a person with a disability to push a broom, it’s the same as slavery.” But I hope those skeptics are few by this point. And frankly, if you’ve been reading this blog carefully at all, for any length of time, you know it’s ridiculous to propose that either scenario is true. Not everybody can, should, or wants to go to Harvard. And I don’t care if your IQ is 196; everybody’s got to sweep up sometime. That’s not the issue here. The issue is that in the American labor force, jobs are seen with at least some degree of non-permanence. The babysitting, burger-flipping, or other low-wage job you had in high school was not meant to be your career, unless you actually loved it (in which case, it still wasn’t permanent because you had the opportunity to rise in the ranks to manager, or turn that love of kids into a job as a nanny). Even when you get a “real” job, it’s tacitly understood that your duties or position can and do change. Heck, some people actually quit their jobs and go on to whole new ones, sometimes in completely different fields.

But do people with disabilities have any of those options?

I say no. Go back and read some of the blog posts on the unemployment rate of people with disabilities, including those who went to four-year colleges and earned degrees. It’s inexcusably low on all fronts. Read “Pomp and Special Ed,” which talks about college programs for students with developmental and cognitive disabilities. These students are often set up in campus jobs (by others, not on their own merit), told they are required to fill a certain number of hours, and given menial tasks like stocking shelves or cleaning up after “regular” people.

What about after college? Yes, there are people with disabilities who have Real Jobs. And yes, as I have said, some people with disabilities find real fulfillment and happiness working at places like, say, Chick-Fil-A. The problem is not with the job itself. The problem is, the number of people with disabilities working in menial positions is disproportionate to the number of those same people who might find fulfillment in them. Think about it. When you think about a person with, say, Down’s Syndrome, moderate to severe autism, Fragile X, or whatever, do you even think of “job” in the same thought? And if you do, what do you picture that person doing? Odds are, you’re not picturing them doing anything that requires true skill or brainpower, which is not your fault. Why not? Because that’s the image our society portrays. If–and it’s a big IF–you ever see an actor with, or portraying, a disability in a job setting on TV or in the movies, what are they doing? Right–tasks that are considered unskilled. And the more that image is perpetuated, the faster people with disabilities, their friends, and their families will lose hope about what those individuals can do with their lives.

I’ll borrow, once again, from Touched by an Angel. The fourth season episode “Great Expectations” concerns Bill and Joanne McNabb. They’re expecting their first child, but have been told the baby will have Down’s. Bill, a man whose education and job options are sub-par in his own estimation, is angry and terrified. Upon seeing Taylor, a man with Down’s, busing tables at a coffee shop, Bill says to his wife, “Look at him…that’s the best job he’ll ever have…I wanted my son to be more than a busboy.”

Now, if you’ve seen the episode, you know who and what Taylor really was. But that’s beside the point. The point here is, Bill had a legitimate fear–because the image of the person with a disability doing what nobody else will do, cleaning up others’ messes, is the image that still pervades his society and ours. And that’s not good enough, folks. Let me yell that, because I think it’s important: THAT’S NOT GOOD ENOUGH! By perpetuating this image, we are creating a generation of Cinderellas and Cinder-Fellas who, no matter what the economic state, are getting the message that they are only good enough to clean up our mess. Fulfillment doing that aside–because not everybody gets that fulfillment–THAT’S NOT GOOD ENOUGH!

I say it’s time to get these folks to the ball, don’t you?

Watch Your Mouth, Part 3: The Reprehensible, Rotten “R” Word

Hello, readers,

I was going to start this post by saying, the only “retarded” thing in this world is the actual use of that word. But then I figured that would defeat the purpose. So let’s just jump in, shall we?

You probably know by now, that word’s got a bad rep. You’ve probably seen all that stuff on the Internet–Spread the Word to End the Word. But maybe you figured, that’s good, but it doesn’t affect me. Maybe you asked yourself, “Why does it matter, and what can I do?” Or maybe, like I used to, you said, “Yeah, the world would be better without the word ‘retarded,’ but I’m pretty sick of people acting offended about everything, even the words we use. ‘Retarded’ really just means ‘slow,’ right? It’s not the same thing as the N word or any of those other slurs.”

WRONG. I was wrong, and if you think that, you may be having a natural reaction, but you’re also wrong.

First, let’s clear up something. Political correctness in its pure, unadulterated, run-amok form is ridiculous, and I think our country is doing itself a disservice by getting offended at everything (for an example, check out the recent news story on the school system who told a boy named Hunter that he couldn’t use the sign language symbol for his name because the sign resembled a gun pointing. I’ve got another R word for that–RIDICULOUS). To paraphrase a famous comedian, if I wanted to live in a country where nothing ever offended anybody, I’d move. There are plenty of countries with oppressive, totalitarian governments for that kind of thing.

But having said that…

The word “retard” or “retarded” actually is offensive. It’s archaic. And it needs to be elevated–or should that be lowered–to the status of the N word or the C word–as in, we don’t use it, period, except to refer to it by a first initial in the context of explaining that it stinks. Why do I think this? So glad you asked:

According to r-word.org (shout-out to you guys: you ROCK!), there’s a plethora of reasons not to use the R word. Among them:

  • It equates intellectual disability with being dumb or stupid–as if “the only characteristic of mentally handicapped individuals is their stupidity.” Well, excuse me, but whoever said these people were stupid? As someone once said, if you can do one thing well, you’re needed by someone. And I believe everyone, even those with intellectual disabilities, can do at least one thing well.
  • It fosters loneliness. As athlete Joseph Franklin Stephens put it on r-word.org, it hurts and is scary when you’re the only person with intellectual disabilities around, and people start making “retard” jokes. It singles you out for all the wrong reasons.
  • It’s exclusive–people use it to separate “us” from “them,” and to label a whole group of people as something you should never want to be
  • It “emphasizes negative stereotypes,” including “the common belief that people with intellectual disabilities should be segregated [and] hidden away from society”. In fact, this is actually the reason I used to use it, but sort of in reverse. As in, I knew those stereotypes and did not want them applied to me. So when somebody did that, my visceral reaction was, “What, you think I’m retarded or something?” But see, that’s still separating out a whole group as “undesirable.” If you know your history at all, you ought to know what can happen when we let ourselves do that, and when it gets out of control.

“But Chick,” you might say, “I say that word all the time. It’s slang–just a word. And the people I use it to describe deserve it, because they’re acting stupid.” Oh, is that so? Well, let’s compare, shall we?

We’ll use that age-old slur, the N word, as our comparison. Not so long ago (before black people actually called each other this, which I think is just sick), to call someone an N meant they were inferior. They had to be relegated to substandard schools, jobs, transportation, or even toilets. And they “deserved” it, people said, because “science proved they were inferior” or because “they’re uppity.”

Now, let’s look at the R word. When you say the R word, you’re really saying: “These are the people I don’t want to be around, be like, or have to interact with. They should be relegated to special ed, institutions, “short buses,” and other segregated settings because they are disruptive. They can’t adapt to our world, so they don’t deserve to live in it. In fact, we’ve got proof–doctors and experts have tests that show, in black and white, that they are inferior in intellectual capacity.”

Not so different, eh?

What hurts the most, I think, is that last statement–the “proof of inferiority” that the medical community and other experts continue to perpetuate, with their standardized tests, their screenings, their scales, and other assorted shtick. That’s the problem. Skin color never had a medical or scientific model that “proved” inferiority, and when people said it did, it could be quickly proven to be bunk, if anyone really listened. But no matter how you slice it, that low IQ score may never change. Those tests do contain black and white proof of what someone can and can’t do. And because the tests are backed by experts, PEOPLE BELIEVE THEM.

Well, so stinkin’ what?

What if that were you? What if somebody summed up your life, your skills, your worth, in a few pages of blurbs and scores, and proclaimed themselves an expert on you and “your kind” because of them? You wouldn’t think it was fair, right? You’d want someone to stand up for you, or better, show you how to do that yourself, successfully. And you certainly wouldn’t want everyone else in the world to coin a word, first used by those experts, and then as a derogatory term, to describe you.

But that’s what we’ve done to people with intellectual disabilities. One two-syllable word strips away their names, their skills, their gifts and talents–their worth. They are reduced to R-E-T-A-R-D, condemned to being seen as unable to function, unwilling to comply, and undesirable to interact with.

If this were the American Civil Rights movement, we’d call that reprehensible. If it were the Holocaust, we’d call it dehumanizing. If this were a women’s rights issue (which, for half of the population with disabilities, it is), we’d call it abusive. So why the casual attitude when we in effect dehumanize and abuse people with intellectual disabilities? Let’s throw out the R word and just say it:

How flipping STUPID is that?

*If you want to join the fight to end the word, feel free to pledge at r-word.org.