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Archive for October, 2012

A Walk on the Mild Side: The Blessings and Curses of Having a Mild Disability, Part 1

Hello, readers,

As you remember, I’m writing this blog in part because I have a disability–cerebral palsy. But as you also know, my case of CP is quite mild. I have said to people that it may be, in my estimation at least, the mildest case on record. All of my senses are in good working order, with the exception of some visual-perceptual problems exacerbated by nearsightedness. I can talk just fine; in fact, my dad used to joke that I should’ve been a lawyer (and don’t think I didn’t consider it, especially after reading James Scott Bell’s wonderful Kit Shannon series and seeing Legally Blonde). I do have problems with my hands in that I cannot handwrite, nor can I manage tiny fine-motor tasks like tying shoes (thank God for loafers). But my feeding skills, hygiene, and dressing skills are just fine, though the third did take practice as a kid thanks to those pesky shirts that looked the same on both sides and a few other pitfalls. From age two to age fourteen, I did attend physical therapy, and spent approximately nine years in leg braces, knee and ankle-length. But unlike some others who have experiences with braces, I was also in and out of them for nine years, at the whim of therapists and clinic specialists. I have not worn braces in over ten years, don’t miss them, and have become quite fond of walking around, thank you.

Yes, all this still adds up to CP, which is in the realm of disability. But considering the scope of their influence on my life, the “symptoms” themselves were milder than some, especially when counteracted with giftedness (see my posts on twice-exceptionality). But lest you think this is a “brag on me” post, let me assure you it’s not. I wrote this post to show the exact opposite: that a mild disability, just like a moderate or severe one, can have its pitfalls and blessings. And just because the disability is mild does not mean the pitfalls don’t exist. Yet, this is how the world of people without disabilities sometimes behaves–as if a mild disability exempts you from the right to encounter obstacles. The ableist attitude is unfair to all people with disabilities, for different reasons. To the person with a severe disability, the ableist will say, “You cannot function in my world, so stay out of it.” To those with the moderate disability, the ableist will say, “I’ll accommodate you, but only up to this point, and you better not act more disabled than you have a right to be (in my mind).” And to those with mild disabilities? Well, ableists might actually appear to welcome these people. They might say things like, “Welcome! Come in!” But as soon as they see the disability, they back off, protesting, “I wasn’t prepared for that! What, you expect me to modify things for you? That’s not fair!” It is as if, by virtue of having a mild disability that may not need as much modification, or have obvious “cues,” these particular people are immediately branded as sneaky, liars, or putting up a facade of a “normal” person when “They should know better!”

Now, please understand that when I say “ableist,” I am leaving out certain people. I’m not talking about the true friend who says things like “I don’t think of you as disabled.” Personally, I’ve never known just what to do with that statement because I wonder if that means they’re ignoring what most people can see right away. But at heart, that’s a compliment, and at least my friends are thinking of me in terms of strengths, not weaknesses. And I’m not talking about the person who’s never met someone with a disability before, or at least spent major chunks of time with people who have disabilities, and isn’t sure what to do, but wants to be kind and treat those people as equals. When I say “ableist,” I am talking about a person who, either by general ignorance (which can be changed), by sheer idiocy (acting as if all people with disabilities are “poor, sweet babies,”) or nothing but a big ol’ mean streak, see people with disabilities as inherently unequal and unable to function in society. I’m talking most specifically about those with the mean streaks–which can come out as hostility, condescension, or a sugarcoated version of “let’s help the handicapped.” These people get mad when people with mild disabilities “infiltrate” their worlds because they feel duped–“We thought you were normal!” Funny, I thought I was, too. Oh, whoops, I forgot about the wings sprouting back there. And I knew I should get that rainbow-flecked mole looked at. Thanks.

As I hope to show in this and future posts, mild disabilities can and do have their own sets of blessings and curses–upsides and downsides–just as severe and moderate ones do (yes, severe disabilities can have upsides. Just think: if your means of communication is a board, assistive technology machine, or any means other than your mouth, you don’t necessarily have to respond to that dreadful bore at your corporate party, right)? These upsides and downsides often come in combinations. And the biggest one for people with mild disabilities, I believe, is an all-or-nothing mentality. It’s based entirely on assumptions. That is, a person who doesn’t have a disability looks at someone with a mild one, like me, and assumes one of two things. He or she either assumes I can do everything, or that I can do nothing.

Believe me, this happens a lot. And I’ve spent time wrestling over which is worse, as well as which is easier to correct. But let’s look at them one at a time, or my thoughts are gonna run amok in this blog.

Everything:

The upside: You’re seen as capable, strong, and talented–the way EVERY person with a disability, degree of said disability notwithstanding, deserves to be seen. You’re somewhat less likely to run into the “oh, you poor sweet baby” atttitude (and I’ll get to the “somewhat” part in a minute). What you CAN do may get more attention than what you CAN’T (we’ll come back to the “may,” too).

The downside: As explained, some people may get upset when they find out there are things you cannot do or need help doing. From personal experience, I can tell you this is true the smaller the thing is. As in, first- and second-grade teachers who were, I believe constantly mystified at the question, “What do we do with a kid who can talk like a fourth-grader but can’t tie her shoes?” Failing actual anger, you may find people suddenly get flustered and nervous around you, as in, “Ohmigosh, what if I do or say something wrong and she accuses me of discrimination?” (Relax–most of us don’t do that). You’re somewhat more likely to have trouble with ableists on all fronts. The “sweet baby” ones may have the nervous and flustered reaction, and then fuss over you like a mama gone berserk. The ones who don’t know how to react to mild disabilities may pummel you with thousands of questions (which is actually okay as long as said questions aren’t rude or nasty, and as long as you’re in the mood to answer them). The ones with the mean streaks? Well, as we know, they’re pretty much a danger to anyone with a disability, degree notwithstanding. (Actually, anybody with a fully operational, 24-7 mean streak is a danger to anything on earth that breathes their air). And, once people find out you’re “out of the disability closet,” so to speak, they may in fact focus more on what you CAN’T do, totally forgetting about the cool things you’ve proven you CAN do.

Can you correct the assumption? Yes. Humor works wonders here–one of my favorite lines is, “God did not give me___” (dexterious fingers, fully operational legs, whatever). I mean, God knows everything, so having to explain my disability should be a cinch. I also like the line, “Don’t worry; if I need help, I’ll ask you. If I don’t ask you, I’m fine.” Humor, again, works well on the nervous ones; you could, depending on how it appears the joke will be taken, crack one about the last poor sap you sued. As for the ones with the mean streaks? Ignoring them works fine, but if you feel like popping off a zinger, try something that emphasizes ability. As in, “Hey, I have a 4.0 graduate GPA–so, you can walk down stairs without the railing. Isn’t that cute.”

Nothing:

The upside: It’s actually hard to think of one, but I guess you could say, thinking up all the zingers you’d love to fire at the person. And, as Ann Rinaldi, one of my favorite historical fiction authors for adolescents, said in one of her books, silence means you learn things. In other words, people who believe you’re dumb and incapable, whether they mean to believe it or not, are giving you a peek at their own fears and insecurities. Observing them gives you an extra shot of interpersonal intelligence. Plus, not gonna lie–sometimes it’s kinda fun to play dumb and then shock everyone’s socks off with what you can do, and do know. (A cautionary note: It’s only fun if you’re doing it on purpose. If you have a disability, people are assuming you can do nothing, and you have not been provided with a way to communicate otherwise, then that needs to be addressed by you and someone you can trust, and it needs to happen NOW).

The downside: Besides the obvious–that the belief you can do nothing leads to, well, being expected to do nothing–there are a couple of other pitfalls. This mentality feeds into what Kathie Snow called the “disability hierarchy,” because people end up thinking your disability is “worse” than it is. But that, of course, invites the question of what gives us the right to tag one disability “worse” or a bigger hassle than others. Also, at times, people expected to do nothing can fall into patterns of learned helplessness, hopelessness (expectations for me are so low, what’s the point), or enjoyment of doing nothing that they’re reluctant or scared to break out of.

Can you correct the assumption: Yes, although this may be a little harder. Humor may not work as well here because the assumption that you can do nothing tends to result in more anger than anything, at least in my experience. And, because “she can do nothing” may translate in the minds of ableist to “she can’t comply or behave because she can’t do anything else,” zingers and comebacks may just feed their fire (this goes for the other scenario too, though in my experience, it happens less often). In this case, my advice is, you’re better off with an assertive, “Actually, I CAN…” (fill in). Ignoring works too, as does letting your actions show that you can do things. And as with the other scenario, read the situation as best you can. Despite my caution about zingers, sometimes one works, as long as it’s not aimed at the person (because then the person could pull out the “noncompliance’ card). Try something like, “Oh, thanks for writing the date for me, but you don’t have to circle the items. I might need extra time to think through my options.” (Thus underlining the fact that yes, people with disabilities do recognize when they have options, and yes, can think).

I hope you’ve enjoyed our first walk on the mild side, and will join us for future posts. Until then, remember: having a mild disability is kind of like being mild salsa. You may look sweet and harmless, but you can still bring the world some zip!

New Shades in the Rainbow: Let’s Let Disability Play!

Hello, readers,

I have often commented on this blog about the fact that the wheelchair seems to be the all-purpose symbol for disability. It’s the symbol you see on a “handicapped parking” sign (and it’s funny–who came up with that one? Parking is inanimate–it cannot by definition be handicapped). It’s the image I see most often when I look up “disability” on ClipArt (the salvation of a woman who has never drawn one decent stick figure). It’s the accessory most common when a toy company wants to show a doll has a disability (i.e., Wheelchair Becky of the Barbie line). But as we all know, disability is a lot more diverse than that.

I was inspired to write this post when I saw a picture of an American Girl doll on their website, wearing a hearing aid. I thought, “Finally! A disability-related accessory that does not involve a wheelchair!” And I have seen other such accessories. My university’s Curriculum Materials Center (the place education degree-seekers can find lesson plan materials, kids’ books, textbooks, games, dolls, and puppets), carries dolls that can be outfitted with canes to signify blindness, leg braces, and the like. I thought, “When I was a kid, I would have liked to have a doll who wore leg braces, because I wore them.”

But then I thought…is that true? I challenge the idea that it is, even and especially in my own head, for a couple of reasons.

One, yes, disability-related accessories have been improving, and the scope of them widening. But we still don’t have as many as we could. For example, in an article entitled, “Can’t American Girl Dolls Have Disabilities, Too?” a mother is quoted as talking about a trip to her local American Girl store with her daughter, whose disability prevents her from moving and speaking. Apparently, this girl uses technology like a head stick to communicate–but no doll, to my knowledge, has ever come in its box equipped with a head stick. Nor is it terribly common, even in this modern age, to see a doll with braces (leg or arm), a hearing aid, a communication board (in lieu of the assumption that she speaks with her mouth), or a doll with trademark Down’s Syndrome features. And never, EVER, would you see a doll with, say, accessories that denote autism of any kind, Fragile X syndrome, or a medical device like an IV or colostomy bag. It goes back to society’s unfortunate construct that says, “Dolls are supposed to be pretty, but disability is ugly.”

But then I thought–wait a minute. How far should accessorizing go? Some disabilities, you can’t see, so it’s tough to accessorize them (i.e., OCD, PTSD, ADD). And if we did accessorize every disability, would it be perceived as insulting to the community of people with disabilities, especially the kids these toys are meant for? That is, we try to take the focus OFF disability by focusing primarily on what people with disabilities are strong in. Are good at. Can do. And as you know, I think we should do that. After all, very few of us would probably want to be constantly defined by what we don’t have or can’t do. So should we try to represent every disability in existence?

But then–you got it–my thought process took another turn. First of all, what would be so wrong with representing as many disabilities as we could? (Yes, I hear the argument–disability is a vast topic, and representing vision-related disabilities alone could result in a whole product line, never mind all the other disabilities). But what if there were an inexpensive, reasonable way to do that–and shouldn’t we try? After all, millions of skin colors are represented in this world, and in the dolls–miniature representations of real people–that our children play and identify with. American Girl has expanded its horizons beyond skin differences in recent years with the introduction of a Jewish doll, a black doll who is historical, but does not have roots in slavery, and dolls with diverse family structures (Julie Albright, the 1974 American Girl, comes from a family where the parents have divorced). Although she hasn’t appeared in stores because she is a “rejected” idea right now, you can see images of an Amish Barbie on Google. (Yes, I know the Amish people themselves probably wouldn’t buy her because of the tenet of their faith that generally says dolls with faces encourage vanity. But the point here is diversity). We’re now seeing bald dolls to signify cancer treatment (although, as I have said, without accessories). So why not disability, too?

And really, as long as we say, “Let’s not focus on it,” aren’t we reinforcing the “medical model” that says there’s something “wrong” with having a disability? Sure, we shouldn’t focus on it 24-7. That’s where we get in trouble as far as our images of people with disabilities is concerned. For example, I might have liked that doll with braces–but I might just as often have left them off her legs. After all, not like she couldn’t walk without them, right? Even if the position of her feet were “wrong” otherwise? (Which reminds me–why aren’t we crafting dolls with, say, feet that turn in? Eyes that signify cataracts/blind irises? Treacher-Collins syndrome, for CRYING OUT LOUD).

So, in a nutshell, that was my thought process on the “disability accessory, disability diversity” question. But I hope it’s making you guys think. Once again, dolls and toys are representations of real things and people. They are often the first things our children will play with, the first thing about which they’ll say, “This is what I have fun with.” But if we don’t include disability in their world of play, won’t they learn that disability is “wrong,” and that there is nothing good, or admirable, about real people who have disabilities?

What’s WRONG with disability, anyway?

I say it’s time to let disability play!

Love, Love Me Do: Learning and Using the Love Languages of People with Disabilities

Hello, readers,

Confession time: I’m happily addicted to personality tests, quizzes, and any books that allow readers to delve into who they are and why they behave as they do. Now of course, I have to be careful to temper that with attention to my spirit; too much of anything is not good. Plus, in the triangle of body (physical body, biological needs and responses), soul (personality, strengths, weaknesses, and favorite things, to name a few) and spirit (one’s relationship with and to the Divine), soul cannot trump spirit. If it does, you run the risk of becoming self-absorbed. Having said that: yup, I still love personality stuff. I read my American Girl Quiz Book repeatedly, flip straight to the quiz pages in any magazine, and bought Kevin Leman’s Have a New You by Friday in part because for me, it was a fun read.

One of the other personality dimensions I love, and that has helped me understand myself and others better, is the “love languages” dimension. If you’re not familiar with love languages, they’ve been popularized in Christian circles (and outside them, to some extent) by author Gary Chapman. There are five love languages: affirmation, quality time, physical touch, acts of service, and gifts. Each person “speaks” at least one, though a lot of people are “bilingual.” The love language you “speak” is the way that you most want and need to receive love. For example, my status as a word-lover might clue you in to the fact that in order to feel loved, I need to hear you tell me I’m special and important to you. And not just what psychologists call “canned praise”–I need to hear the specific things I have done well, or that you like. And criticism? I can take it, but too much, too fast, or over too long a period, and well–you could give me a diamond necklace, but I would doubt you loved me. I’d even doubt you LIKED me.

What’s the point to all this? No, I didn’t get a degree in marriage and family counseling overnight (though I have considered exploring that field more). The point is: how do we show love to the people with disabilities in our lives? I’m not asking IF we love them. I’d venture to say that most people with disabilities, at least in America, have at least one person in their lives who absolutely loves them (and if not, they should, and we should show our love by making that happen). And of course, every single person in this world, disability or not, is adored by Jesus Christ, who speaks all love languages fluently and perfectly. I’m asking, do we always know how to show love to people with disabilities? Are we doing things that we think show love, but to them, do not? And how can we improve on our use of their love languages?

I’d like to propose that because of the status of “disability” in the world–something that is unfortunate, pitiable, and undesirable, and often results in segregation and deflated expectations–love languages may get ignored or trumped. For example, let’s say a child with a disability–we’ll call him Henry–has a primary love language of receiving gifts. Now, granted, this language is tricky because parents with children who speak this language tend to think, “Oh, great, I have to go out and buy them the latest, greatest stuff, or they’ll think I hate them.” But the truth is, as I learned from Chapman and other fellow Christians, giving gifts doesn’t have to mean the latest gadget or toy. It could mean something as simple as a candy bar, or a flower you picked from your garden, or a cool rock shaped like Texas. It could mean giving the person something you made for them, like a blanket (which then becomes the child’s treasured security blanket) or a box to hold treasures.

But, let’s say Henry has a disability, and his parents don’t quite understand how to integrate that with love language. They may end up using gifts as bribery to get him to cooperate at therapy or at the doctor’s office. Or they may take away gifts for noncompliance. Now, that’s not to say legitimate misbehavior at therapy shouldn’t be disciplined–it should. But do you see what happened? The way that Henry hears “I love you” has been tied inextricably to discipline/punishment, so that what he may be hearing is, “Mom and Dad’s love must be earned” or “Whether I get love depends on how I act in therapy.”

Okay, so maybe that one was easy. Let’s get a little tougher. Our next person with a disability, we’ll call Jane. Jane’s love language is acts of service. Now, don’t misunderstand–she’ll do chores or homework or whatever she’s asked, at least as much as any other kid her age would. But she feels loved when, say, Dad says, “How about I unload the dishwasher today, hon?” or when Mom gives her a ride home from a school activity so she doesn’t have to ride the big, loud bus. Or when Nana comes over and announces, “Jane, I baked your favorite brownies.”

But how could disabiltiy sabotage that? The first way I can think of is one little word: INDEPENDENCE. As in, maybe Jane’s therapists have stressed over and over to her parents that in order to be independent (thus fitting some pre-determined societal model of success) Jane must do as much as she can for herself, all the time. Fine–surely Jane wants to be independent, if for no other reason than she knows it will please adults. But what happens if, for example, one particular task is difficult for her, and she asks for help? Or even asks an adult to do it for her? Maybe the adult (parent, grandparent, whoever), doesn’t refuse, or maybe they do. But whether they do or not, Jane will be scolded for it the next time she goes to therapy. And she will learn that the way she feels loved is totally unacceptable. And, should she be told that having a dishwasher, rather than washing dishes by hand 20 minutes after a meal, or leaving her bed unmade for more than 20 minutes, is “taking the easy way out,” that message will be further cemented. In fact, Jane might learn to think of herself as lazy and unwilling to be independent–just because she requested love the “wrong” way.

One more example, okay? Contestant #3, as it were, we’ll call Kieran. Kieran’s love language happens to be words of affirmation. He needs to know exactly what is lovable about him to feel loved. Now, I’m going to do what I’d do if I were teaching in a classroom at this point. I’m going to back off and ask, I gave you the love language. You tell me how disability could be used to sabotage it.

Right. The language gets sabotaged if, more often than praise, Kieran hears what he’s doing wrong, or what he needs to “practice.” And no, this doesn’t have to be “mean.” It could be as simple as a parent constantly saying, “Kieran, you need to go down stairs alternating feet,” or “Kieran, you need to sit up straight,” more than he or she talks about Kieran’s strengths, or even how he has improved in these areas. You know that saying about flies, honey, and vinegar? Yeah, well, if it’s true honey, rather than canned praise, that goes a long way with therapy, doctor’s appointments, and the other annoyances of Disability Land.

Physical touch and quality time, we won’t go into, because you guys can probably come up with your own examples by now. But you get the point. Every person with a disability has a love language, and if you listen, they will express it to you. (Yes, even those whose disabilities affect speech will tell you, if you listen). The key is to use that love language, and not let disability sabotage it.

Have you loved a person with a disability today? 🙂

The Forbidden Question: People with Disabilities and the Right to Ask “Why?”

Hello, readers,

We’ve spent a lot of time on this blog talking about the fact that there are certain things people with disabilities, and those who love them, are not allowed to say according to society. According to the medical model of disability, for instance, these people are not allowed to say “no” because “Someone else will always know what’s best for you, and if you don’t go along with them, you are noncompliant and must be punished.” People with disabilities are not allowed to say “I want,” when it concerns big dreams like careers, colleges, and Real Lives, because those dreams aren’t “realistic.” They’re not allowed to ask, “Is there another way to do X,” and neither are those close to them. Think about it. If a parent or guardian disagrees with the methods or diagnoses of a child’s therapist or doctor, what’s the attitude he or she is likely to run into? Right–“Don’t question us; we’re the professionals.”

But see, that’s the problem. Humans aren’t born knowing everything, though we’d love to think otherwise. So we need to learn. And the best way to learn is to ask questions–except, in Disability Land, that’s not allowed. And one of the biggest questions people with disabilities are not allowed to ask? The question “Why?” As in, “Why do I have this disability?” “Why was I chosen to have one, when nobody else around me does?” “Why do I have to go to ___ (doctors, therapies, or other interventions)?” “Why can’t I do this?”

I would like to propose that “Why” is the most feared and silenced question in Disability Land, and often, the people silencing it are those who have the disabilities. Many years ago, I attended an appearance of a Christian speaker with a disability at a local church. One of the things this man said was, “‘Why’ is a whine.” He followed that up with his own catchphrase, “Don’t whine, but shine.”

Now, I understand where he’s coming from. Some questions, like “why do I have X disability,” are never going to have what we call satisfactory answers for everyone. And to spend your entire life asking “Why me” is to sound like, well, a whiny, out of tune violin. I mean, if you spent your entire life doing that, you’d never get up and DO anything. And that would be boring. But there’s a problem with the philosophy that “why is a whine.” It implies that “why” is the one question a person with a disability must never ask. And with that implication comes more implications, like, “Asking why means you’re ungrateful” or “You can’t do anything about it, so stop complaining.”

Yet, is “why” always a complaint? Well, yes, according to an ableist worldview, it is. For example, if a child asks a parent why he or she has to go to therapy, the parent will hopefully understand and have an answer. Maybe that parent will rethink whether the therapy is really needed, or could be replaced with something more natural. Or maybe the parent will say something like, “I understand you don’t want to go. But we need to because it’s important,” and then explain WHY it’s important, without scaring or shaming the child (“This is so you can do ___ better,” which sends a “You’re not okay the way you are” message, or “If you don’t go, you’ll never walk.”) But suppose the child asked the therapist the same question? That therapist might have the same response, yes. Or he or she might react in a way that says, “How dare this child have such a noncompliant attitude.”

Or, let’s say an adult with a disability asks something like, “Why do I have to depend on ‘job services’ for employment?” or “Why do I have to depend on para-transit to get anywhere?” Do you know what a blow that is to disability business? The person with a disability sees and hears a legitimate question. The job service provider, bus driver, or other person who erroneously believes he or she is in control, sees and hears someone being “uppity” and trying to buck the “help the handicapped” system.

What’s worse, the church even gets in on this. Remember, I told you that the guy who said “Why is a whine” was a Christian. And a lot of Christians perpetuate the idea that to ask God “why”–about anything, which definitely includes disabilities–is to imply He doesn’t know what He’s doing. Now, depending on the attitude with which the question is asked, that could be true. But too often, it isn’t. And as I keep relearning, God’s a big boy. He can take questions. The problem is, we don’t ask them. And we use God as a cop-out–as in, “God made you this way, so just accept it.” Yes, some parts of disability must unfortunately be accepted–such as that for now, a person who’s blind probably can’t drive. But other parts, such as the attitude of an ableist society? People with disabilities shouldn’t have to stand, sit, or even lie there, and take that. And often, the first step away from taking it is to ask one simple question:

“Why?”

 

Revenge of the Clones: The Danger of “Disabled Only” Social Interactions

Hello, readers,

In our last post, we talked about the double standard behind the word “special.” As part of that, I touched on the phenomenon of “disabled only” social activities. As our society moves closer to full inclusion, it is my hope that these will become part of the past. But unfortunately, some group homes, institutions, schools, or other public places that serve people with disabilities, still depend on them to ensure their “clients” receive what they call socialization. And that, I believe, is a problem.

Why? Well, as with many of the “time-honored traditions of helping the handicapped,” as Mary Johnson worded it, there are several issues with this. Let’s look at just a few:

  1. “Disabled only” outings encourage segregated groupings. Now, I know the rest of the world’s answer to this–well, what about women’s and men’s Bible studies? What about school clubs that center on just one ethnicity or one talent? What about black or Latino churches? Aren’t those forms of segregation, too? In some cases, they can be. Someone once said, for example, that Sunday morning remains the most segregated hour in America, and I don’t think that’s right. But in most of these instances, a few key differences exist. For example: Bible studies, singles activities, etc. are sometimes split into guy-girl groups because guys and girls have different issues they want to discuss in these groups that might not be appropriate for mixed company. Ladies–do you really want to discuss cycles, childbirth, and that one certain “exam” in front of men? And guys, I’m not sure what the counterparts of those discussions are for you, but surely you don’t want women hearing about them. Similarly, school clubs aren’t “segregated”–at least, they shouldn’t be, as in “X race, X creed, X disability, stay OUT.” No–school sports and clubs are geared toward the students who want to be in them. And as for black and Latino churches, among others–I don’t think that’s the ideal. But those groups have their own worship traditions and may have chosen to go to church where they do because the group at large has decided to keep those traditions in ways they’re comfortable with.

Now, compare that to “disabled only” groups. Often, these occur in special education or group homes, or other places where there is very little guarantee that people chose to be. (Yes, some people with disabilities do choose separate classrooms, or to live in group homes, but many do not). In “disabled only” gatherings, “disability issues” may be discussed, and there is often a sense of camaraderie there. But often, the supervisors of these gatherings act as if disability is the main focus of the group. In other words, this group is not about particular talents, or even innate traits that are upheld as good, like gender or race or ethnicity. No–the focus is on what the people in the group can’t do, what needs to be “fixed” in them (as if that’s possible, as we’ve discussed before). Also, people who attend these other “special” groupings have the option to circulate and socialize outside of them. I go to women’s Bible studies, but that doesn’t mean I can’t interact with guys or go to co-ed studies. A black or Latino or Asian person doesn’t have to go to a church or other group specifically for his or her race. I was a Quiz Bowl member in high school, but I also hung out with the choir kids (and sang with them). The biggest jock on the football team could also hang out with the theater kids or the art club. But once you’re in a “disabled only” group–in school or the community–that becomes known as your only social group, either explicitly or implicitly. You become one of “them,” not an individual person. And people act surprised to see you out of the group. I think about the guys with cognitive disabilities from my church I’ve mentioned before–does anyone think of them as individuals, or are they always “the group home guys?” Which leads me to:

2. The “I’m a Pepper, Too” Syndrome. No, I didn’t make up the name. That comes from Mittlemark and Newman, authors of the informative How Not to Write a Novel. For them, “I’m a Pepper, Too” refers to the mistake authors make when all their characters become versions of the same person, with all the same interests, problems, or even physical features. Now, we know all people with disabilities are not the same. But this kind of clumping and “social interaction” only with each other, can give misplaced credence to that myth.

The other side of this syndrome is that it’s sometimes encouraged. It’s what happens, for example, when a parent sets up a child with a disability on a playdate with a child who has one, also, or sends him to a summer camp exclusively for kids with disabilities. Now, that might be the kid’s choice, and I understand why. Again, there is in fact a level of kinship that occurs when you find a person who’s dealt with Disability World like you have, even if your disabilities are different. The problem occurs when one person or the other in these friendships begins acting like disability is the only thing that keeps said friendship together–and sometimes, it is, which means it may not be a real friendship. Example: I once took a theater class with a girl who had psychological disabilities. She, of course, could see my physical disability. And–this still gets me–this girl, after being friendly for awhile, said to my face, “The only reason I hang out with you is you have problems.” OUCH! And I now wonder–how many other people with disabilities has this happened to? If you have a disability–have you ever met someone who gets enthusiastic once they realize you have one, too, as in, “Oh, look, I’ve got  a knee brace!” and suddenly that’s all they want to talk about? Or, they think they know exactly how your CP feels because they have dyslexia, or how your ADD feels because they use a wheelchair? How annoying and disheartening is that? And speaking of annoying…

3. Are We Having Fun Yet? Let’s get back to the “outing” part of these social excursions for “disabled people only.” Of course, as I have said, sometimes these can be fun. For example, if I were Deaf, and went to a sign-language performance at the local theater with Deaf friends, that would be fun for me. But that’s because those people would be my friends, we’d be doing something that interested me (theater) and I chose to be there. Now, contrast that with what often happens in a “supervised” disabled-only excursion: “All the people here have ___ (fill in whatever disability you like), and can’t do much, so every Tuesday, we’re gonna go bowling.” Excuse me? Did anyone ask this group if they wanted to go bowling–or even do it together? No, didn’t think so. But that’s often what happens, and it’s ridiculous. If you add in the assumptions tied to these outings–i.e., “Everybody here has cognitive disabilities and can’t understand much, so we’re all gonna go see an animated movie even though they’re adults,”–it’s downright hurtful. And what’s more, these outings are often BORING to those who are supposed to be having fun on them! I grew up watching Rugrats, so I’ll quote Chuckie Finster on this one: “Somebody doesn’t understand the word ‘fun!'”

4. We’re not in Kansas Anymore–I’ll keep this one short and simple. People who engineer disabled-only outings usually have good intentions (though those often don’t turn out so great; see January’s archives). They want to make sure people with disabilities have the opportunity to get out and do fun things (see #3). They also want to ensure opportunities for people with disabilities to be social. But on that point, let me ask: if the only practice you ever got at being social was with people “like you”–what other people deemed “your own kind”–what would happen if you were suddenly asked or required to interact outside that group? I’ll leave this question as is; I think you guys can figure out the answers on your own.

As I have said, disabilities-only activities aren’t always bad. But too often, they’re centered on the disability itself (not on the participants as people) and are more harmful than helpful. So the next time you think about this construct, ask yourself, what is this “outing” really encouraging people with disabilities to go out and “do?” If you’re not satisfied with the answer–

You got it. Go do something about it.

Fresh Water, Salt Water: The Double Meanings and Standards of the Word “Special”

Hello, readers,

Happy October! Cooler temperatures edge ever closer, leaves are beginning to drop from the trees, the coffee shop is selling pumpkin scones and salted caramel hot chocolate, and I am a happy girl. Fall is one of my joys in life. But as we know if we look up the meaning of the word “joy,” both in the dictionary and in the Bible, joyful doesn’t necessarily mean happy. I can tell you I am joyful, but the truth is that a lot of the things in this world make me sad. Such is a peril of having a melancholy temperament, I suppose. But that’s also what fuels my advocacy and these posts. So tonight, I’m back to write a new one. Once again, its theme is words, and a particular word. It is a word that has developed a double meaning, and a double standard. It’s the word “special.”

As Cass Irvin said, “special” is a pretty word, but what it really means these days is “segregated.” Now, he didn’t say “these days”; I did. That’s because, like many words in our lexicon, “special” didn’t always have certain negative connotations. It’s a word like “gay” or “coke” or “crack.” “Gay” used to mean “happy.” “Coke” used to refer exclusively to that sugary brown drink you serve over ice. And “crack” used to refer to “cracking” jokes, cracking peanut shells, or what your window got when you threw a baseball at it. (What you yourself got was probably more painful). And “special” used to mean unique. It used to mean “extraordinary” or “distinctive,” “exceptional” or “particular.” All good words, just like those other words are good.

But now, suddenly, “gay” means “homosexual” (which opens this innocent word to a lot of slurs and bad jokes, including the usage of the same word to mean “stupid” or “uncool.”) Coke and crack now refer to an illegal drug. And “special,” though still used for its “good” reason, now has an evil twin. This same word is now used to mean “segregated” or “less than” or “separate,” especially and I would argue exclusively, when it comes to people with disabilities. And what huts about that is, “separate” and “different” have always been synonyms for “special.” But it seems we’ve forgotten how to use the positive synonyms, and just focused on the ones that make one certain group of people look and feel different–like aliens (the little green ones, not as in “foreign-born.”) Like, dare I say this, non-people.

But the problem with “special” doesn’t stop here, folks. The main problem with this word’s current usage is the fact that we still use it in its positive form–just not when we’re talking about people with disabilities. For example, a parent says to a kindergartner, “You’re special to me,” hoping to instill a sense of individuality and confidence. Schoolchildren earn a “special” reward because they did well on a state test, or because they’ve been well-behaved. When people celebrate a birthday, the honoree is singled out because it’s his or her “special” day, set aside to celebrate all their positive traits and the blessing of having them around. When someone is especially talented in an area like academics, athletics, or the arts, we may say he or she has a “special” gift.

Now, contrast that with the way “special” is used in terms of disabilities. “Special education”–which often means a segregated classroom away from the rest of the school, possibly even in an entirely separate wing. This could also even mean a separate “special” school only for people with disabilities. “Special buses” or “special” transportation like paratransit–transportation methods where the convenience of the passenger is often not considered, some people with disabilities would rather not use, and which some schoolchildren would actually hide from rather than ride on. “Special” homes for people with disabilities, only. “Special,” “disabled only” outings, where a group is often made to travel together throughout the entire outing, which singles out that group as “different” in public. The result of that? Stares, rude comments, or rude gestures, such as people moving away from the group on the “disabled only” outing at the restaurant or the movies, because they’re sure they’ll be “disruptive.” (And just a side note here: “disabled only” outings are, arguably, often not as much fun as they could be–some group homes, for example, use the same outings repetitively, even on the same schedule. I guess they think people with disabilities can’t feel boredom).

See the discrepancy? When we say “special” in reference to a person without a disability, it’s meant as a positive, uplifting thing. But when we say it in terms of the community of people with disabilities, it’s a form of singling out in a negative way. To be blunt, for people with disabilities, “special” often looks, sounds, and feels like a punishment or “tolerance” in the worst sense of the word–as in, “We don’t really want you here, but since we can’t get rid of you, here, go stay in this ‘special’ place we set aside.” I’ll be even more blunt–it’s a little like crating a pet!

Of course, you might say that part of the way to combat that is to use “special” the way it was meant to be used around people with disabilities. And that’s true; people with disabilities want and need to feel exceptional, unique, and extraordinary. But when someone uses “special” the “right” way, after a person with a disability has seen and heard it used the “wrong” way so often, it kind of loses some of its punch. Sadly, “special” is becoming a word that we may eventually want to drop from our vocabulary–unless we all work together to use it the right way, for everybody. And I think if we do that, people with disabilities will stop feeling “special.” Instead, they’ll get a chance to feel like we all should–equal, but extraordinary.