Practically Perfect in Every Way–Except Disability: Disability World’s Contributions to Perfectionism

Hello readers,

As we have discussed before, the world of disability as most people know it–the world of diagnoses, therapies, “special places,” “experts,” and so forth, is filled with double standards and paradoxes. Such as, the paradox (def.: something that appears completely incorrect but is actually correct in context) that people with disabilities are often branded stupid–and yet, constantly accused of manipulation. A paradox because, as you’ll see from the archives, one has to be intelligent to manipulate. Well, today, we’re going to be looking at another paradox: disability, and how it contributes to perfectionism.

Why is this a paradox? Because the outdated, but still prevalent, assumption among many in the non-disabled world is that PWDs can’t be perfectionists. There are so many things they can’t do, why would they even try? Let me assure you: they do try, and there are perfectionists with disabilities out there. It probably won’t surprise you to know, one such person is your own Independence Chick. Of course, I’ve always known I was a perfectionist. People certainly said it enough, usually with the qualifier that I should “get over that stuff”–I love most of those people to death, but who are they kidding? And even if nobody ever said to me, “You are a perfectionist,” I think I could’ve figured it out. I mean, why else would I have gotten in trouble in kindergarten for ripping up my own picture and calling it ugly during art class? Yes, this actually happened. But I never thought having cerebral palsy had anything to do with it. I bought into a version of that ignorant statement: How could my weaknesses, the things I could not do, the things I despised about myself, lead to a deep desire to be perfect? In fact, I think there are at least two ways this can happen, and they sometimes go hand in hand.

Perfectionism Contributor #1: Guilt

This often occurs when the PWD, usually in childhood or adolescence (i.e., yours truly) recognizes two things. (1) There are things they cannot do, or do well or “correctly,” that other kids at their age and/or level can. (And don’t discount kids with moderate to severe disabilities from this; to do so is to assume they don’t see, don’t hear, and don’t care. Trust me, they might be blind and deaf, literally, but they sure as heck care). (2) There may be, on the other side of that coin, things they can do well, that people actually applaud (I’m not talking about walking, talking, and grooming oneself–although, if that, sadly, is the only thing that person gets credit for, they could become a perfectionist about THAT). Case in point: Just to prove that this is not limited to people with physical disabilities, let’s say that Aaron’s disability is intellectual, mild-moderate. (This places his IQ at about 50-75, for those of you who like numbers). But, Aaron’s pretty darn good at the athletic activities in which he participates, whatever those are, and with whatever modifications he needs. Even if he has been “placed” in a segregated sports environment (AN option, not THE option), he’s still pretty darn good. So, if not encouraged well, what does Aaron learn? That he is valued for physical ability, but also, everybody discounts his ability to use his brain. So he better be one of the best players out there, or maybe people will start saying, “What did you expect from a kid like him, anyhow?”

What does the budding perfectionist also learn at that point? Well, he or she learns what’s on the other side of that coin. As in, and I’ll use my own example this time: maybe, if I get people to focus enough on what I can do well, they’ll “forgive” my disability. This still happens to me, particularly since I’m almost 28 and still quite single. There is a part of me that believes men are not interested because of my CP, and/or they are scared of it. I must therefore prove to them that they’re getting a great deal by dating/courting/marrying an intellectual Christian woman who does her best to live her faith and would treat him like gold, who watches what she eats and makes the effort to dress up for him, so they will “forgive” that one little detail. (And if you’re staring at the screen, jaw nestled on the space bar and calling me blankety-blank nuts, fine. I know it’s blankety-blank nuts. But there it is. And if it’s happened to me, you can bet it happens to other PWDs, whether or not the opposite sex is involved. I mean, how many stories have you heard where, say, a kid with a disability grew up feeling like a disappointment to his or her parents because he or she never walked, talked, etc., “right?”)

Perfectionism Contributor #2: Constant Correction

I’m not necessarily talking about criticism here. This is the part where we talk about therapy, doctor’s appointments, and their ilk. I want to go on record, again, as saying that some, if not most, therapists, doctors, and their ilk are compassionate people who truly want the best for the people they serve (as screwed up as disability services of all kinds are in this country, but that’s a separate issue). So, back to the actual topic. I’m going to use my own example again, and invoke my interest in personality/psychology.

With my deep, abiding interest in the above came an interest in birth order. Of course, I knew the “basics”–you know, that firstborns are allegedly bossy, youngest kids are allegedly charmers who could get away with murder, and middle kids get lost in the shuffle if Mom and Dad aren’t careful. But if you’re like me, when you love a topic, you want to know more than the basics. So I went out and bought The Birth Order Book, by Dr. Kevin Leman, a Christian psychologist who has written several books (bestsellers, no less), despite the fact that he pretty much blew off school for most of his life. (He blames this partially on his psychological makeup as a baby of the family. I’m a firstborn, so let me tell you–reading about some of the stuff he pulled made me laugh, but it also made me cringe. I don’t need to tell you what would’ve happened to me had I dared stick a toe over that line. That being said, if you ever meet this guy, ask him about the time he conducted target practice on the family Christmas tree. I’m laughing just thinking about it).


So I’m reading Dr. Leman’s book, paying particular attention to the section on firstborns (and only children. Turns out according to Dr. L, I have several “only” traits, too). I’m nodding my way along, and then I come to the chapter on perfectionism. I quit reading for a little while, because I thought, “Great, another guy who has me pegged and will give me 5-10 suggestions to ‘get over it,’ none of which will work because I’ve got the perfectionist role good and broken in right now, and believe me, I’ve tried buying a pair of new shoes, so to speak.”

But being the orderly woman I usually am, I didn’t want to skip parts, so I read the perfectionism stuff anyway. And I came to Dr. Leman’s discussion of the “discouraged perfectionist.” That’s his phrase for what happens when, say, you’re a perfectionist, but you’re also the messiest person alive, or you’re always late. What gives? Well, what gives is, you’re still a perfectionist. You just got weather-beaten and quit trying. And as I was reading this, I had two thoughts. The first was kind of a back burner thing: Oh, so THAT’s why my desk was always a holy mess in school. But the second was like the proverbial firework: THAT’S where CP fits in! Well, hallelujah, I finally figured it out! And since this has happened to me, let me spell it out for you.

A person with a disability can become a perfectionist; it doesn’t matter what his or her medical diagnosis is. Family placement has a lot to do with this, so if you’re reading this and have an only child, or a firstborn, who also has a disability, listen up–but parents of Y’s (youngests) or M’s (middles) with disabilities, don’t quit on me. Say you already have a kid blooming into a perfectionist. That kid is already concerned with doing everything right, pleasing Mom and Dad, and so on. That kid, according to Dr. Leman, also spends a lot of time saying to herself, “I should…” and doesn’t really need or want to hear it from outside sources. (Note that disciplinary needs are somewhat different, but be aware of this). But, but, but.

I’ll use my own example, but a different name. Say that little five-year-old Demitria is already a perfectionist, but she’s also got CP. She works hard to keep everything “right” in her world. She even works on those goals therapists give Mommy and Daddy to take home and help her practice. But then she goes to therapy, and what does she hear? Right: “You should walk this way, not that way.” “You shouldn’t sit like that.” “Don’t type with two fingers; you should use your whole hand.”

Is it any wonder Demi is five years old and on the fast track to a heart attack? Why are we doing that to anyone with a disability, but particularly those who already have perfectionism going strong? And then what do we do? We turn around and, out of the other sides of our mouths, tell that person with a disability that imperfection is okay. Okay, O Great One, then why are you “shoulding” me to death??????

Perfectionism isn’t healthy for anybody, and believe me when I tell you, if there was a pill for it, I’d have bought stock back in 1995, before I was old enough to play the market. But since there’s not: I think the best way to help a perfectionist is, stop expecting perfection. And please, for the love of all that is good, stop forcing perfection down the throats of PWDs (as in, “Be normal (read: perfect) or you’re somehow less.”

A world where imperfections–ALL imperfections–are accepted? Sounds perfect to me.


Get Off My Case: People with Disabilities and the “Charity Case” Mentality

Hello, readers,

I’m back on the blogosphere after about a week of nonstop traveling, first to a writer’s conference (my first; how fun!) and to visit an ill relative (pancreatic cancer; if my praying readers are so inclined, please add her to your list). But even when I’m traveling, I’m on the lookout for new post ideas, and today, I have one.

While I was at my conference, I stopped to eat at a restaurant that specialized in two things. One: strawberry snickerdoodles. No, I didn’t try one because I’m very judicious about when I eat sweets, and that wasn’t a dessert day. But they looked so cute–pink cookies sprinkled with powdered sugar–that I almost cheated.

Two: those strawberry snickerdoodles were connected to a charity (which I will not name due to the possibility of causing offense) that helps people with disabilities (they had a little advertisement on one of those flip-able “menus” you see on some restaurant tables). Now, usually, I’m very interested in, and a proponent of, charities in general, as long as I know they use their funds appropriately and don’t promise things they can’t or won’t deliver (i.e., those televangelist rackets on TV that promise your every problem will fly away on gossamer wings if you send them $22.95). So I stopped my waitress and asked what this particular charity did to help PWDs. She explained that the charity “places” PWDs in jobs.

Wanting to give her the benefit of the doubt, I asked, “Oh, you mean the person tells the charity’s workers where they’d like to be employed and they help them find that sort of employment?” No, I was told. The PWD takes an assessment–singular–and then is placed in a job that that one assessment deems appropriate.

As with many things involving people with disabilities and the hoops they have to jump through in the “system,” I can understand this, to a point. There are many, many PWDs out there who need and want gainful employment. Career and aptitude tests can be and often are extremely useful to anyone seeking said employment, not just a PWD. And not every person with a disability can be, or wants to be, a professor, technical engineer, etc. Besides which, I’m sure the workers of this charity are kind, well-meaning people who want PWDs to have good employment experiences.

Having said that: there’s something fishy about this charity in my opinion (to which you can donate by buying a two-dollar bag of those cookies; one dollar of that goes directly to the charity). I am not for one minute suggesting that this charity dumps PWDs into horrible working conditions and menial work with an arbitrary attitude. But let’s look at what’s really going on here. A single assessment is being used to wholly determine where a person with a disability ought to work. When experts do that to people without disabilities–say, kids in school who are made to take a standardized, one-size-fits-all career test–the parents and teachers start shrieking, and well they should. As for adults: sure, you took an aptitude test at some point–maybe more than one. But was that the deciding factor in where you worked, doing what, and for how long? Probably not. So, again: if it’s not acceptable for “the rest of us,” why is it acceptable for PWDs? Maybe because it’s easy? Cost-effective? And because it looks kind and charitable?

And now we come to the other problem with this whole setup. If you look at this charity from face value, you might ask yourself: wait a minute. Whether or not a person with a disability gets a job has been left up to a charity? An organization whose job it is, basically, to help “the poor,” “the disadvantaged,” “the downtrodden?” Nobody likes those labels–so again, why are they “good enough” for PWDs? And yes–believe me, I understand that some people may need charitable help to find employment. Unfortunately, it happens every day, to people with and without disabilities, from all walks of life. But outside of that, why are we, again, leaving the employment, and effectively, the futures, of PWDs to organizations, experts, and in essence, anybody but THEM? Yes, maybe a person with Fragile X can’t go to Harvard. And maybe he or she would find fulfillment doing something the temporarily able-bodied population would consider menial. But if that person wants to work with animals, or learn cosmetology at some level, why stick them in food service? Would you like it if someone did that to you–and then made you feel like a charity case on top of that? I think not.

Again, charities are wonderful things, most of the time. And I’m glad we have them. But charitable work should not come at the expense of any person’s choices, or dignity (PWDs are the only minority group that I know of, that is consistently painted as needing constant charity and help from organizations and powers that be). I say, this should not be. If a person with a disability needs or wants charitable help? Fine–but think VERY carefully about the kind of help it is, and what it’s delivering. And otherwise? Please, get off their case–because they’re people, not cases.

Daddy and Me: When Being a Daddy Means Your Child has a Disability

Okay, let’s clear up one thing right now. I’m not a dad, obviously, nor will I ever be one. But I have a great one, it is Father’s Day, and I want to write about dads (even though the calendar on this program may actually register the post as coming up on Monday). So, first: Happy Father’s Day to my very first (and so far only) Prince Charming, who taught me, among other things:

1. The finer points of the Civil War, the Titanic, and World War II (he’s a major history buff)

2. How to convert fractions to decimals (though I still need a calculator for that; sorry, Dad)

3. All other restaurants bow before the superiority of Cracker Barrel (which is tough to admit when you’re a lover of all foods Italian, and Cracker Barrel hasn’t seen a spaghetti noodle in, I’d venture, maybe 20 years)?

4. Act like a lady. When necessary, fight better than a man.

5. There is never an inappropriate time to quote A Christmas Story.

6. God is trustworthy, loving, and can provide all you need. And, since we’re a Christian household: no other god stands up to Jesus Christ.

7. A seasoned dad can hear the cookie jar lid from ANYWHERE in the house (we had, and still have, a very loud ceramic model)

8. A real man holds open a lady’s door and does anything else that makes her feel respected and loved

9. A dad will make sacrifices for his kids. These include, but are not limited to: listening to kiddie tapes on 6-8-hour drives, shuttling his grown daughter back and forth to grad school as she groans over HIS music (or more likely, talk radio, all five buttons), staying home with sick kids, taking his kids to the creek so they can splash him, going to the bookstore when he’d rather be at Sportsman’s Warehouse–you get the picture.

10. Good dads hang in there with their kids. Good dads don’t leave.


Now, why did I say #10? Yes, it’s because unfortunately, in today’s world, many dads get up and leave when they realize they’re going to have children and thus, have to make any or all of the sacrifices mentioned in #9 and even more (you know, the ones that involve bills, doctor’s appointments, orthodontic treatment, poo and pee, maybe even walking with his kids through drug rehab, a teen pregnancy, an attempt at suicide, or something else). And yes, that is, I believe, even more likely if the dad is told, “Your child has a disability.” Kathie Snow sums it up well: even the best-intentioned dads feel fear when fatherhood comes, and that fear is compounded in a huge way when a disability enters the equation. Suddenly, she writes, those dads wonder how to interact with their kids. And though she doesn’t write this, sometimes that means the dad gets so scared, he leaves. I shudder to think what would’ve happened if my dad had walked out after he heard the CP diagnosis when I was two.

But I didn’t write this post to beat up on dads, even and especially those who’ve left their kids, even if those kids have disabilities. Father’s Day, even in Christian circles, has become way too much of a “slam dad” day. My father once said he was sick of going to church on Father’s Day because of the (unintentional, but very pointed and present) emphasis on deadbeats, abusive dads, and in general, the kind of dad he shouldn’t be–because he never was one of those to begin with. I actually wrote this post to do three things. One, to honor my dad. Two, to applaud the millions of fathers who make all the sacrifices I’ve mentioned, and more, every single minute of every single day. (And if you’re not a Christian dad, that still counts–Jewish, Muslim, Buddhist, whatever, if you adore your family, you need that honor). But three, to talk to the dads of kids, even big kids or young adults, with disabilities, for just a minute.

Yes, dads, you can probably guess, if you’ve got kids with disabilities, they need the same things from you that other kids would. They want to play sports, go fishing, go shopping, have you play “airplane” with them, whatever. And if you have to modify those things, so what? However you can give your kids what they need, do so for them. However, there are other things kids with disabilities need that might seem more difficult to give them, so I’ll talk about them for a minute or two.

1. Your kid with a disability needs to know he or she is normal, and that you believe in him or her. So many people in your kid’s life–doctors, therapists, teachers–will spend their time telling him or her all the reasons they “can’t” or “won’t.” You, Dad–Mom, too, but I think, especially Dad–need to come above that. Your message needs to be, “I believe in you,” and, “As long as it doesn’t hurt you or others, you can do anything you want to do with your life.” My dad knew I wanted to be a writer. Did he say, “How are you gonna do that; you can’t use a pencil?” No. He built a desk when Mom brought home a computer. Dad knew I wanted to travel–to go to summer camp with other young kids, and on mission trips, and even to Europe with college classmates. Did he freak out about my “special needs?” Well, he was concerned, yes, but he knew modifications could and should be made–and he and my mom helped make that happen. So, if your kid wants to play in Little League, be in a play, go to college, have a job that Vocational Rehab didn’t set up ahead of time? You can be the one to help make that happen, so be willing to find out how.

2. Your kid with a disability needs to know he or she can have a real life. Since I was nine years old, I’ve talked about having my own house and a husband. We moved to a new house when I was little, and thus, made interminable trips to Lowe’s. One of my ways of occupying the time was to pick out things I liked–wallpaper, paint samples, doorknobs, for crying in the sink–and say, “When I have my own house, I want this.” Now, that’s been hard on my family and me, because at 27, I still have no house and no husband, and it breaks my heart. For a long time, I believed they didn’t want me to have those things and were going to try to prevent me from having them. I know better now, but I also know that if I went through that, other PWDs might have, too. This goes back to a lot of what we’ve discussed on this blog before–accentuating strengths, listening to your kid’s strengths, and not leaving it up to the “experts,” the therapies and the rehabs and the job coaches, to decide what kind of life your kid needs or is “realistic.” And can I just say this: even if you believe with all your heart and soul that your kid can have the life he or she wants, you have GOT to say it! Say it a lot. Because the older that child gets, the more he or she will wonder.

3. For dads with daughters: Your daughter with a disability needs to know she is cherished, and beautiful–a strong woman, and a Beauty worth rescuing. No, I’m not saying your daughters need to be Disney princesses (although if they want to play that, please play, too. They’ll adore you for it). I’m also not saying Daddy can rescue his daughter from a disability–sadly, that doesn’t usually happen. I’m borrowing from Stasi Eldridge, the author of Captivating. In that book, she talks about what makes a woman’s heart beat–what she needs to know deep in her soul from a young age. And one of those things is, “Am I pretty?” Not just physically beautiful, but strong. Captivating. Worth cherishing and fighting for. Stasi describes herself, wearing a “twirling skirt” (girls, you know what I’m talking about), and twirling in front of her dad, asking without words if she was pretty.

Every daughter needs to know she’s a Beauty, but I’d venture to say that daughters with disabilities need to know that even more, and sometimes multiple times a day. In our world, disability is ugly–physically, mentally, and emotionally ugly. If you have a disability, you are, in one, two, or all three of those ways, unattractive. You are weak, and you captivate no one. At least, that’s what society at large says. That, unfortunately, adds up to a lot of distressed damsels who end up crying, lashing out, hurting themselves, or hurting others. They need someone–and yes, often that first someone needs to be a man–to tell them they are captivating. And often, that first man is Daddy. She needs to hear it, dads–a LOT. She needs you to be her prince. I know I called my dad Prince Charming when I was little, out of a belief I was Cinderella. And whenever I wore any kind of dress, he asked me to twirl.

4. For dads with sons: Your son with a disability needs to know he can fight the battle and live the adventure. I’m borrowing from John Eldridge, Stasi’s husband and the author of Wild at Heart, which is basically Captivating, for men. John explains that just as women need to know they’re captivating, men need to know there’s an adventure out there, tailor-made just for them. That, although picking fights is unacceptable, they will face battles in their lives, and they are equipped to fight. But just as disability can make women feel ugly and weak, so too, it can emasculate men and boys. Too often, males with disabilities are treated like disappointments and as if they have no manhood. They’re not supposed to go off on adventures; they’re supposed to stay home like good little boys and let everybody fight their battles for them. Well, let me tell you something: I believe that, even if you are a male with an IQ of 30 and severe incontinence, tics, or drooling, you are a MAN. You can claim manhood just like everybody else, and there is an adventure out there for you–it may just be different from Macho Man’s over there. And who is the first person a little boy needs to hear that from? Of course: DAD. Loud and clear.

Okay–that’s plenty to think about. Happy Father’s Day, again. 🙂


The “Me Monster”: Are People with Disabilities “Naturally” Selfish?

You’d think, wouldn’t you, that the answer to this question would be a resounding “no.” Unfortunately, some people, even in nations that profess to be enlightened, like America, continue to perpetuate the idea that people with disabilities (hereafter known in the blog as PWDs to save some keystrokes) are the most selfish people in the world.

Some people, out of ignorance and often pure cruelty, will say this to the PWD’s face. Recall, for example, Mary Johnson’s book Make Them Go Away, which contains the story of Ellen Nuzzi–labeled selfish because she dared to attempt to ride a public bus, and request modifications so she could do so. And the ominous question continues to linger even after more than a decade since that book’s publication. Many people wonder aloud, often because they do not know better, if it is selfish for PWDs to have children because, after all, those children might grow up to have the same disabilities as their parents. Others wonder if autism naturally leads to selfishness. These are real questions–I found them while Googling “people with disabilities selfish” last night, in search of stories and articles that talk about this myth. Disability Scoop calls it a sub-myth of the “uppity crip” myth.

Nor is this just conjecture. I saw the results of this myth up close and personal during my student teaching experience. I was working at a school that was and is technologically advanced. All the students used Chrome Books, and my “cooperating” teacher often projected videos, images, notes, or other pertinent material on a large screen at the front of the room, using her computer. At first, I thought this was great, because it would lessen the pain in the neck of explaining my inability to handwrite and thus, ask for modifications.

Unfortunately, the opposite was true. The technology came with its own pitfalls, like cords that would get tangled in each other, and everything else, like a mass of snakes, and a screen remote that would blink from one mode to the other too quickly for me to keep up with. Requests to my cooperating teacher for help got, at first, grudging help, then remarks like, “I’m gonna start making you [do this stuff],” and then pointing to which cord went where when I got confused about it. Once, a cord got tangled in my desk chair. Her response? “You can lift it yourself; it’s not heavy.” The chair got knocked over–twice. Her subtext? “You’re refusing to do something I know you can do yourself, and holding me up.”

The examples don’t have to be that blatant, and I hope for the sake of any readers with disabilities that they are not. More often than not, the examples of this myth come from well-meaning people. It might be the therapist telling a child, “You have to learn to tie your shoes so your mom won’t have to do it.” (Now, if that child can tie shoes and is simply refusing, then that needs to be addressed, but I don’t think it’s wise or fair to bring the parent into it, as in, “Look how much they already do–you’re being a burden.”) It could be the church member who, upon seeing a PWD is not participating in a certain activity or ministry, assumes he or she doesn’t want to and says, “You know, life is not about you,” without stopping to think that maybe the reason that person isn’t participating is, he or she can’t or hasn’t received the proper modifications to do so. (More on that in a future post). It could be the teacher or employer who withholds modifications in the name of independence, and shames the PWD for asking for them (as in, “You’re in the adult world now, so…”)

What does this cause? I’m sure you know. What happens, is what always happens when someone is continually exposed to negative feedback. They begin to believe it. Suddenly, the PWD can’t ask for help or modifications without feeling a stab of guilt. He or she feels obligated to apologize to people for taking up their time or infringing on their schedules. As for that person’s wants–why express them? To say you want something is the most selfish thing of all!

In fact, I think there’s a serious double standard when it comes to what “selfish” or “self-absorbed” means for people without disabilities and people who have them. For the temporarily able-bodied population, “selfish” or “self-absorbed” has come to mean, having an arrogant attitude and narrowly focused view of the world around them, with no regard to what anyone else says or does. Pretty fair assessment, because that is the actual definition, dictionary particulars aside. But for PWDs, “selfish” has come to mean, “Asking for legitimately needed help, modifications, or any other needs or wants.” Worse, in the eyes of some, this is wholly defensible. “It’s selfish,” they claim, “for that disabled person to insist we make X activity or place accessible for them; they should just accept what they can’t do. I accept that I can’t organize a closet, don’t I?” (Maybe, but the fact that you’re talking about it actually shows you don’t, and that’s another thing entirely).

Understand that yes, PWDs can be legitimately selfish just like anyone else. I have, you have, and I’m sure if they’re honest, my readers with disabilities would admit to it. However, there is a huge difference between actual selfishness as we have defined it, and accidental self-absorption (such as the individual with Asperger’s Syndrome who talks about his or her core interests without noticing they’re dominating conversations–and in that case, they need natural guidance to overcome this–NOT a behavior plan that says, “Johnny will learn to be considerate of others.” (I just love those un-measurable goals, don’t you)? And there’s also a big difference between those two, and asking for what one legitimately needs to live and thrive in the world around him or her. But if we’re so busy claiming that PWDs expect the world to revolve around them, how can we help them thrive in it?

I say it’s time to stop whining about how selfish PWDs are, and look at how we ourselves act. Then maybe, instead of, “Quit holding me up and wrecking my world,” the attitude can become, “How can we help each other today?”

“I’m a Pepper, Too”–or are You a Cucumber? The “We All Have Disabilities” Phenomenon

Hello, readers,

Happy June, and quick shout-out–happy birthday to my Nana, who turned eighty today. 🙂 Actually, that leads me to today’s post, because as we know, as we get older, our bodies may not cooperate as well as they used to. But the question is, does that mean that everyone has disabilities at that point? In fact, what constitutes “disability” at all?

We’ve discussed this before, from different angles and with different results (ex.: the rather disastrous post on obesity as disability from last March). However, we haven’t covered the often-ignored, but prevalent, differences between “disability,” “handicap,” and “impairment.” Most of us, including yours truly, use these terms interchangeably, and usually, no one is the wiser. Again, no one likes a hair-splitter in this politically correct world of ours. But sometimes, the interchangeable use of these three words can cause confusion or even hurt. For example, I have had many people, who I love, try to encourage me with these phrases and their variants:

“Everybody has a disability.”

“I don’t see you as disabled.” (Which I actually appreciate, since at least some people don’t focus in on that like a caffeinated camera).

“You could say I have a disability” (referring to, say, their glasses, their arthritis, their inability to organize a closet, their dislike of foods that burst apart in your mouth)

And though I usually smile and nod at these encouragements, because they are well-meant, there are times I (and, I think, any person with a documented disability) just wants to say, “Excuse me, but no. You may have an inconvenience, maybe even a handicap or impairment, but that doesn’t mean you’re necessarily ‘disabled’ or know how I feel/what I’m going through. You may grow in the same garden section, but that doesn’t make you a pepper. You might be a cucumber.”

So of course, you’re probably asking, what do you mean, and what’s with the vegetable analogies? (Check the archives for what I call the “I’m a Pepper, Too” syndrome, which occurs when people with disabilities are encouraged, or even allowed, to socialize only with other PWDs). In clarifying these terms, I’m not questioning anyone’s right to say they have things in their lives that hamper them, or what they want to do–their right to say, “I grow in this garden and am a vegetable.” But that person, who says, what’s the difference between cucumbers, peppers, and celery, needs a quick clarification lesson.

According to the pediatrics education division of Emory University’s website, the differences between the three definitions are as follows:

Impairment: “Any loss or abnormality of psychological, physiological, or anatomical function.”

Disability: “Any restriction or lack (resulting from an impairment, emphasis mine) of ability to perform an activity in the range considered normal for a human being” (leaving aside the question of “What the heck is ‘normal,’ again?”)

Handicap: “A disadvantage for a given individual that limits or prevents fulfillment of a role that is normal” (don’t get me started on which roles are normal for whom, how, when, or where)

The good folks at Emory provide examples that break this down further. I’ll use mine rather than theirs, since it’ll save some quoting and hopefully, give a more personal touch.

I have a form of CP called spastic CP (which, ironically when one considers the connotation, actually means my muscles are hypertonic, not loose and floppy; that’s ataxic). The impairment I experience is overly tight muscles, which means my ability to walk is hindered, as is my ability to use my hands (I can’t handwrite, button tiny buttons, tie shoes, or cut food with a knife). I also have a visual-spatial impairment which affects balance and visual activities, such as interacting with geometric figures or completing those math questions that say, how many triangles do you see in this (rather busy) figure?

The disability itself, or restrictions that result, might be, for example: my ability to walk with a “normal” gait or my ability to drive a car (which, for the reasons of impairments outlined above, I don’t, and won’t unless Google perfects their driver-less cars in the near future). Then again, this does hinge on the idea of what is considered “normal,” but for the sake of the post, let’s just say I do not have typical abilities in some areas due to the impairments CP causes.

However, with all that, I am only handicapped in certain situations by a disability that the impairments cause. For example, CP “handicaps” my ability to, say, play tennis or skydive, or even sign forms. It does not handicap my ability to read, or speak, or feed and groom myself. Whereas, for a person with, say, dyslexia, they may not be “handicapped” until called upon to read or spell something.

So, to wrap up: with all this in place, is it appropriate to say things like, “I have a disability, too” or “We all have disabilities” when in fact the person saying that does not have a medical diagnosis of an impairment that manifests itself as a disability? (And by the way, I’ve said those things too, so this also counts as self-examination). As with many things, I think this might come down to the terms we use. For example, if you wear glasses because your vision is not 20-20, yet can do any activity anyone else can, within normal range, as long as you wear your glasses, I don’t think it’s appropriate to say you have a “disability” because the glasses, in effect, eliminate the impairment you do have. Whereas, if you have arthritis, and it prevents you from completing certain activities within normal range, it would be appropriate to say that you are handicapped in certain areas because of the arthritis. It might even be appropriate to say the arthritis is “disabling.” But (and I’m new at this, so take this with a grain of salt, please), this is not true for every impairment in existence. Just because you are impaired in one or two specific areas does not necessarily mean you have a disability. After all, you could be considered “handicapped” in a chess tournament if you’d only played three games in your life. But that handicap would be improved upon or eliminated if you practiced your chess game. The same cannot be said for many disabilities. In other words, you may be green like a pepper, but you might actually be a celery stick or cucumber. And it can be helpful to everyone if we all think about which one we are, and use the appropriate terms.

That being said, there is nothing wrong with being a cucumber. In fact, they happen to be my favorite green food. 🙂