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Archive for November, 2013

Legends of the Hidden Population: My Top Ten Worst Stereotypes of and Things to Say to, a PWD

Hello, readers,

First of all, let me say I hope everyone had a wonderful Veterans’ Day. To those who have served, living or dead, or who are serving now, or who know they will serve: thank you. Thank you so much. And to those veterans who served and returned with disabilities: a particular thank you to you. This post is about stereotypes and thoughtless comments, and though no PWD needs, wants, or deserves to hear them, I’m guessing they might hurt a little more for you guys. So also, thanks for putting up with that junk as graciously as you do or have.

I got the idea for this post from a reader (thank you, my Galactic Explorer friend). 🙂 I actually got the title from Legends of the Hidden Temple, a Nickelodeon game show I grew up watching and recently discovered on YouTube. Each of the three seasons’ episodes featured a “legend” of a specific object belonging to a person in history. Now, as the show’s former host Kirk Fogg (yes, that’s his real name, and it rocks) admitted, the show played “fast and loose” with the definition of “legend.” Most notably, the historical person was always real, but his or her object, its history, and the way the object came to be part of the show’s Temple set? Not so much. For example, even though Harriet Tubman probably used a walking stick in her life, I doubt one ever became as legendary as she is. And even though Billy the Kid was one of America’s most notorious outlaws, I doubt he owned a pair of yellow snakeskin boots. Though if he did, that’s quite a fashion statement.

What is my point? The point is that, as fun as that game show was and is to watch, its “legends” have no basis in truth–just like the stereotypes of PWDs have no basis in truth (because even if one or two PWDs fit certain stereotypes, not everyone will). The often insensitive comments made to these people also often have no truthful basis. And yet, they run rampant, and are considered truth. Why? Well, maybe it’s because PWDs are so mysterious to the temporarily able-bodied. They’re seen so seldom in real life that it’s easier to believe a “legend.” (This is sad, but true. I was in my local coffee shop just two days ago, on a cold day perfect for a hot beverage–and realized, I was the only PWD in the room. Moreover, most people might not have known I had a disability, or what it was, unless they asked).

So, what are some of my least favorite “legends?” Well, some of them have already been covered online, thanks to forward-thinking people who know a stereotype when they hear one, such as “People with disabilities are either always bitter or always happy.” (See August 2012 archives for a whole post on that one). But here are some that haven’t been covered yet:

1. The Legend of the Helpless: People with disabilities can’t take care of themselves, no matter how much therapy or “life skills” work they do.

2. The Legend of the Shiftless: People with disabilities cannot get real jobs, nor do they need or deserve them. If they do manage to get a real job, they must be watched over constantly by a job coach or vocational counselor. Even then, they will likely be fired.

3. The Legend of the Mindless: People with disabilities, especially those who have visible, severe versions, do not see, hear, or care what you do or say. They have no likes or dislikes–just keep them entertained.

4. The Legend of the Spineless: People with disabilities frighten very easily, and generally have childlike personalities.

5. The Legend of the Guileless: People with disabilities are saints, capable of dispensing great wisdom on a dime. Moreover, they wouldn’t hurt a fly. You could punch a PWD in the kisser, and she’d grin at you.

6. The Legend of the Legless: All people with disabilities use wheelchairs (simple, not as hurtful as some might be, but it gets on my last nerve)

7. The Legend of the Friendless: People with disabilities are generally friendless, often because they are rude and nasty to other, “normal” people.

8. The Legend of the Formless: People with disabilities do not/cannot/should not go out in public because they can’t “handle” being around “normal” people.

Did you notice the “less” theme there? You might well have, because throughout these legends runs a thread. People with disabilities are generally expected to be “less” in many ways. I see no need to talk about self-fulfilling prophecy when it comes to this. That’s not a legend–it’s truth–and we need to work together to stop it from happening to every PWD out there.

But suppose you say, “Chick, I don’t believe these legends and I don’t know anybody who does.” Okay, fair enough. But do you know people who, out of caring, or perhaps sheer lack of knowledge, have made these comments?

1. Can’t you exercise/work hard/practice X, and get better? I’ve talked about this one before, and I’ve heard it a lot. The frequency with which I have heard it, is why it’s #1 on the list.

2. Have you tried X agency, X part-time job, X plan? I hear this one a lot, too. I understand the people who say it are trying to help. But–hear this from me, and hear this from other people with disabilities: we do not want your handouts. We appreciate agencies like vocational rehabilitation centers, but they don’t need to run our lives. Part-time jobs are okay to a point, but at some point, we want to have the same security, if not permanence, at our jobs that you do. As for plans: make sure it’s my plan, not yours.

3. Your disability was/is God’s will. This one, I’m careful with as a devout Christian. I do believe God has a will, and I should obey it. And if it was His will for me to have cerebral palsy, I’ll go along with that (a little late to be declaring that, as I’ve lived with CP for 27 years, but whatever). Here’s the thing, though: don’t tell me this. That implies I don’t know God or what He wants. (And I don’t, not perfectly, anyway. But it implies I also don’t care. And I care). This statement also implies that to be anything but satisfied with my life as a PWD is to dishonor God, even if that life is full of handouts and second-class treatment. Forgive me, but the God I know isn’t a fan of either one.

4. It could be worse. Heard it–oh, so much. And I understand. I see this statement every day in the mirror. But please don’t say it to me. Don’t make me feel like an ungrateful brat because I reached for more. And don’t put me in the position of looking at the next PWD, strapped to a wheelchair, communicating via assistive technology, or whatever, and feeling more fortunate. People with disabilities are not the less fortunate–unless the temporarily able-bodied treat them as such.

5. Can you do ____? Are you okay? I appreciate your concern, but if I can’t do it, or I’m not okay, I’ll say something.

6. Why can’t you do that if you can do this? Heard it from my “mentor” teacher: Why can’t you hook up your own computer if you can allegedly teach? Heard it from math teachers: if you can read, why can’t you interpret this geometric figure? You must be lying. No, I am not, was not, and do not lie about my disability. And to answer you: why can’t you fly a plane if you can kick a soccer ball, smarty pants? Seriously: every disability is different. What I can do, maybe the next guy or girl can’t, and what I struggle with, the next person probably finds a breeze. So don’t ask me to explain every facet of can and can’t. Just don’t.

7. Do you understand? Unless you’re explaining a legitimately new concept, such as how to make a chocolate Bavarian cream, Do. Not. Ask. Me. This. It implies I’m dumb. It also implies PWDs are dumb. Just don’t do it, unless it’s an appropriate situation. For example: don’t ask me this if you’re (unnecessarily) explaining where my groceries are supposed to go. Don’t ask me this if you think I broke some unwritten rule you conveniently didn’t tell me about. Readers with disabilities out there, ever had that happen? Yeah, I’m sure you have.

8. You don’t look/act disabled. Funny. You don’t look stupid, but you just acted it.

Legends are fun, folks–but only in fiction. People with disabilities are real–so let’s treat them as real.

Disney and Disability: What Would, or Should, a Princess with a Disability Look Like?

Hello, readers,

Who doesn’t love a good Disney film? Okay, I’m aware that some of us out there really don’t care for Disney, which is perfectly fine. I’m well aware of its flaws. However, if we’re honest, most of us will admit that we grew up on, and enjoyed, the classic cartoons and movies associated with a certain cute little mouse and his creator, Walt. And for the girls out there, most of us will admit to growing up on and enjoying the Disney princesses. (If there are guys reading this who enjoyed, or enjoy, the princesses too, feel free to chime in. I find, for example, that once a guy becomes a dad and has daughters, that quotient goes up).

Of course, the Disney princess line is fraught with controversy. Our favorite royals are accused of being bad role models, teaching little girls that it’s okay to wait passively and helplessly for a prince to rescue them (Snow White, Aurora, Cinderella), that it’s okay to be totally selfish as long as you get your man (Ariel and arguably Jasmine), or that you can change the people in your life to suit your own wants and needs (Belle and Tiana). Now, some of this, I understand. The original three Disney princesses in particular sometimes get on my nerves because they seem to lack an independent spirit as we think of one today. However, please recall that these three young women were products of their time periods, where women were just on the cusp of discovering those spirits and action-oriented qualities. As for the other accusations leveled at the princesses, I can see both sides of the issue, and I favor some of the royal line over others. For example, I see Belle as someone who can see, and help others find, their inner beauty, not someone who changes others for her own purposes. I see Tiana as the one princess so far who has balanced “wish upon a star” with the hard work it takes to achieve one’s dreams. As for Mulan and Merida–I just plain love ’em. Merida in particular–I’d do a lot for that flaming red mane of hers. And may I just say, the executives who gave her a sexed-up makeover were absolutely insane?

Yet, I do feel Disney’s star is lacking some serious polish in one area. Yup, you got it: why have there never been any princesses with disabilities in the eleven-princess lineup (soon to be thirteen, with the addition of Elsa and Anna from Frozen this December). Now of course, one could come back and say: “Well, there aren’t any Hispanic, or Jewish, or lesbian, or even obese, princesses out there–why doesn’t that concern you?” Believe me when I tell you, it does. The thing is, Hispanic and Jewish heritage, a lesbian lifestyle, and even obesity–those things don’t carry the same antisocial stigma as disability does. Recall from previous blog posts that we’ve talked about this: the majority of society sees disability as the one thing that no one, under any circumstances, should want, and woe to those who have one, or even more than one.

A fellow blogger mentions this in a post where she discusses an ad that hit the airwaves shortly after Brave came out. The ad is based on the statement, “I am a princess,” and shows several girls of different backgrounds, interests, and so forth confidently saying those words. But out of dozens of girls, only two have disabilities. One is Deaf and signs the statement in ASL. The other has Down’s Syndrome, but her time on camera is very brief. The other blogger writes that she almost missed it.

Other people out there have raised the question of why Disney has no PWDs (Princesses with Disabilities) in their line as well. A recent Fanpop poll was taken to see if participants would like to see a princess with a disability in the future. However, 27% of people said flat-out “no princesses with disabilities.” I suppose that means they haven’t yet explored the myriad of positive possibilities behind that new princess. Another twenty-seven percent voted for the princess to be completely blind. The percentages of disabilities that got other votes, such as deafness or “other,” got even smaller from there.

So, what do I think of all this? Well, let me say first that in a way, I understand people’s reactions to having, or not having, a princess with a disability in the Disney franchise. People tend to shy away from those things they haven’t done before. Also, some disabilities, such as cerebral palsy or autism, would take time to explain within a film, whereas blindness or deafness, or even the use of a wheelchair, can be, though not always is, pretty self-explanatory. However, I’m not going to let Disney off the hook. Just because nothing has ever been done before doesn’t mean it shouldn’t or can’t be done–and after all, isn’t that one of the lessons that Disney, purposely or not, teaches children through its plots and characters? So why, then, is disability, above any other concept, still being looked at through a “can’t” lens, courtesy of these, of all people?

As for the easy-to-explain issue, I’m not going to let them off the hook there, either. Beauty and the Beast took its first couple of minutes to explain the enchantment on the cursed prince who became the Beast. Earlier classics, which had a “storybook” type of intro, took their first few minutes to explain the beginnings of Cinderella, Aurora, and Snow White’s stories, too. Snow White even began with just the storybook page, no outside narration (so I guess if a kid watching it couldn’t read yet, she was out of luck)? Also, children can understand complicated concepts more easily than we think they can, if they are handled in the right way. For crying in the sink, The Lion King killed off a major character, and nobody felt the need to bring in a licensed psychologist to explain why. The Princess and the Frog loosely based its magic on the real construct of voodoo, and nobody felt a need to give a dissertation on voodoo, Creole culture, and so forth. The voodoo just “was.” The death of Mufasa, though heart-wrenching, just “was.” Why can’t a disability be “just is” as well?

Here’s my final word on the easy to explain issue: The Little Mermaid. Some viewers of this classic argue, and rightly so, that Ariel spent part of her film with a disability because she was mute. Yes, muteness is often a disability. However, Ariel chose to become mute for the sake of a man (not getting into that), and knew what she was getting into. Not so for many people with disabilities–maybe all of them (unless you have BIID and choose to amputate; see earlier post on that subject). From a child’s perspective, this is okay–they just see Ariel as a princess who’s in love with a prince, and a prince and princess need each other to live happily ever after. End of story. But as an adult, one must wonder why nobody bothers to question: Ariel, do you feel you have a justifiable reason for this? You’ve known this guy existed for what, one scene? Do you fully understand what muteness means? See, viewers of the movie let this go–and yet we shy away from a Disney princess who has a disability, which she did not choose, which is natural for her, in part because we think said disability would need some kind of long explanation?

There’s also the fear that having a PWD would automatically make said princess passive or helpless. But, you guessed it, I’ll be shootin’ down that argument faster than Merida could shoot for her own hand. Why? Because that argument is based on the antiquated idea that disability = helplessness. If Disney can give us a princess who would rather read than lust after the town hunk, a princess who worked two waitressing jobs and came to own her own business in 1920s New Orleans, when African-Americans owning businesses was pretty much unheard of, a princess who fights to save her country, and even more: what is so hard about creating a princess with an indomitable spirit, who just happens to have a disability?

Disney taught us to believe in the impossible. So, suppose we help them learn to do it themselves, for a new generation of princesses?

“Useless Eaters” and “Unclean”: Are We as Far Removed as We Think?

Hello, readers,

“Remember, remember, the fifth of November” is most closely associated with Guy Fawkes Night. But today, I would like for my readers to associate the fifth of November with a new awakening to the urgency of disability rights and the fact that people with disabilities all around us are crying out, even if silently, for our help. Because if we don’t start listening, soon, it may be too late to listen.

You may recognize the words and phrases in this post’s title. One, “useless eaters,” is the phrase Hitler and his Nazi regime used to refer to people with all kinds of disabilities–those who were deemed “genetically unfit” to be part of Hitler’s perfect Germany and “master race.” These people were called “useless eaters” because in the minds of those in power, they had no physical or mental capabilities other than to eat–to take handouts of food from the working, “useful” population. The mental picture this paints for me is disgusting–it makes me think of a grossly overweight, grasping, drooling, entity with no human characteristics whatsoever–just a mouth gobbling what others give and then demanding more. The picture that the word “unclean”–a word also used to describe PWDs in the past–is even less pleasant. It makes me think of dirtiness, of lesser value, and of unworthiness to be in society. And yet, this is what twenty-first century America continues to say PWDs are. Let that sink in, folks: twenty-first century America.

I can anticipate, and understand, that some of you folks might think this is extreme. After all, you might say, America has not set up a euthanasia program like the one in Hitler’s Germany. We don’t stick PWDs in gas chambers and then bury them in pits or unmarked graves. Okay, maybe we don’t–yet. (Whether we will in the future, with the way this country is going in terms of healthcare, is another ballgame, one which I refuse to let myself visit for fear of my own sanity). We don’t do those things because we think we are “civilized.” However, take a look at this evidence to the contrary, provided through disabilityscoop.com and the website of the United States Holocaust Memorial Museum, respectively:

  • Between 1866 and 1997–that’s 1997, folks, as in just 16 years ago–13,000 people died in Minnesota’s 11 state mental hospitals. Many, many of these people were not mentally ill at all, but had developmental and other disabilities. When they died, they were buried in graves marked, not with a name, but a number. For example, when a young man named Eugene, who had developmental disabilities, died there, his name was not acknowledged. He was buried under a grave marker inscribed simply: 551. The occupation listing on his death certificate read “inmate.” Thanks to the organization Remembering with Dignity, his grave now bears his name. But the fact that people were laid to rest, if one could call it that, with such indignity, as recently as 16 years ago, should make us all squirm.
  • According to the website of the U.S. Holocaust Museum and Memorial, before 1941 and the advent of Hitler’s Germany and the T4 Program (an “open secret,” according to the website, put in place to rid the country of the physically and mentally unfit through a so-called “good death”), the United States led the world–the world–in forced sterilizations of persons with disabilities.
  • Forced sterilization of persons with disabilities continues today, and many “hospitals, asylums, and other places where [it is] performed” choose not to document their history, according to a project done on Nazi euthanasia crimes and sterilization at the University of Vermont. Is this happening in some Third World country? No–it’s happening here, in the U.S. Land of the free–unless you’ve got a disability, that is. Then, tough luck, but we’ll sterilize you for free!

But even if a person with a disability never has to endure the horrors of modern eugenics–and I hope to God one day no one will, disability or not–I contend that much of our society still sees, and treats, its persons with disabilities as “useless eaters”–as in, all they can really do with themselves, is eat. Of course, now we hide it all behind a veil of political correctness and tolerance, but the attitude still remains. Don’t believe me? Okay, then let’s take a look at the evidence. A lot of that evidence rests on one word: accessibility, or lack thereof.

  • Schools, particularly those of the public variety, still often turn up their noses at the idea of having students with disabilities be educated inside them, even in segregated classrooms. For example, one American mother was offered $86,000 if she would keep her son, who has severe autism, from attending school. A Texas student who uses a walker was ordered not to use it at school because other students might get hurt, and ordered to use her wheelchair, which makes her more dependent, not more independent, in a society that values the independence of the individual. Students with disabilities are often subjected to sub-par curriculums and career options, or “transition services” that have been described as “too little, too late,” so that when they do leave school, they may have little choice but to sit around their houses. As Kathie Snow so eloquently puts it, too often, our education system fails these students in that high school becomes “the beginning of the end.”
  • In many states, adults with disabilities do not live as part of the community. Traditional institutions with 100 beds or more are still in operation, and while classical abuse may not take place, the people who live there remain shut out from society through no fault of their own.
  • Businesses, both of the work and leisure variety, often refuse to make themselves disability accessible because it is allegedly not cost-effective to do so. (Think about non-accessible seating, narrow aisles and doors, lack of ramps, and so forth, to name just a few problems). That’s assuming PWDs have transportation to even reach these businesses; if they do, it’s often unreliable, or the person faces rude treatment from those in “control” of the transportation service. Or somebody says, “Okay, I’ll drive you if you pay for gas”–but where’s the money going to come from? (See previous post).
  • See previous post for more on this issue: Because of a need for chronic pain meds, many people with disabilities are forced to stay home. Therefore, not only can they not gain leisure time, they can’t work and earn a living.

So, we see these things, and what happens? Well, best-case scenario, most people would see these facts and want to do something to change them (more on that in a moment). But too many people look at these facts and say, “I wish those people would stop whining! Why don’t those people get jobs? They just want government handouts. I shouldn’t have to waste my tax money…”

Do you hear what’s going on? People with disabilities are being derided and shamed for something they can’t control. They’re being seen, not in so many words, as useless eaters–because that’s what we decided it’s best that they remain. If they remain in the box where they were placed, we don’t have to do any extra work. Gee, I wonder if that’s kind of how it started in Hitler’s Germany: people saw their neighbors with disabilities, figured they would never fit into the “master race,” and because they were blinded enough to buy into the idea that a “master race” exists, acted accordingly?

“Unclean” is a similar way in which society too often views PWDs. If you recognize this as a Biblical word, you should. I got the idea for this post, in part, after reading the story of Jesus healing ten lepers in Luke 19:11-17. I was completing some homework for Beth Moore’s Bible study Jesus the One and Only, where she poignantly describes the life of a leper. These people suffered from a skin disease that was not your average acne or rosacea. This disease was degenerative and led to smelly, decaying flesh, disfigurement, even the loss of limbs or facial features. Lepers were expected to stay outside of their normal society–were not even allowed to approach God in worship–and were forced to go about with unkempt hair and torn clothing, shouting “Unclean!” to warn away those who would come near them. Force yourself to picture this. We are talking about unkempt, most likely filthy, people with parts literally missing, forced to shout knowledge of their affliction wherever they went.

So it is no wonder that when these ten lepers encountered Jesus, they cried out “with a loud voice, ‘Jesus! Master! Have pity on us!'”

Beth Moore makes a distinction about the word “pity” that I think applies very well to the situation of many with disabilities. She doesn’t give the original translation in her lesson, but does point out that the original meaning of “pity” in the Bible story is, “to have compassion…to want to do something to lift the miseries.”

Did you catch that? These lepers were not saying to Jesus, “Pity us!” They were essentially saying, “DO SOMETHING about our situation, because we know you can!” And that reminded me…

The worst of society looks at people with disabilities as going around with their hands out, screaming their “afflictions”, even if silently: “Cerebral palsy! Autism! Down’s Syndrome! Help, help, help!” Over and over, until the air reverberates with it. But here’s an idea:

What if these people are crying out, not for pity, but for action? What if we stopped pitying them and made our society, and ourselves, authentically accessible? Suppose, instead of seeing that person as a “useless eater,” we learned to say, “Come and break bread with me?”

I fear for what will happen if we don’t. If we don’t, we might all starve.