Hey, Teacher, Get Help Somewhere Else: Gifted Kids as Perpetual Tutors

Hello, readers,

Thanks for joining us for the second in a series of posts on students who are gifted, their education, and their experiences. This particular topic is especially important to me because growing up, I was a “gifted” student. I was also classified as twice-exceptional, but that’s a topic for the next post.

This post might be a little shorter than others, but it addresses a topic I think parents, educators, and students should be aware of: the trap of making the student who is gifted a perpetual “teacher’s helper.” That’s pretty self-explanatory, but I do think we should talk about it, for a variety of reasons. These reasons include, but are not limited to:

  • The teacher’s helper syndrome happens so easily it sometimes goes unnoticed. That is, often, teachers see their “best” students, the ones with the highest grades, and think, there’s got to be a way to include these kids in everyday, general ed activities. (And there is–see the previous post). The problem is, these same teachers often have 25-30 kids to teach, nurture, and, let’s face it, ensure the physical well-being of. (The gentle way of saying, make sure the darlings don’t kill each other and themselves in the course of the school day). Out of that 25-30, only one or two might be gifted. And the teacher might not have the resources to make sure those one or two can work at their level consistently. So what happens? They think, “have them help the students who don’t ‘get’ a concept.” Boom–the students who are gifted stay involved, the other students understand concepts better, and everyone benefits. This can also be the setup if a teacher has several different learning styles and levels in one classroom. That is, he or she might conclude, through simple math, that the kids doing the best in a subject should always be the leaders or the tutors. And yes, the students who are gifted need to learn to help others so they don’t fall into the pattern of feeling and acting superior. But the tutoring solution is a “quick fix.” Why? Because:
  • Teacher’s helper may = social stigma.I’d venture to say that teachers and parents fear their child who is gifted feeling superior, and thus becoming–might as well say it–an arrogant little genius nobody wants to play with. It’s a legitimate fear; even the most well-mannered kids can do it, if for no other reason than self-protection. I know; I sometimes used my knowledge of big words or correct grammar to try to shut up kids who already teased me for other reasons. And it doesn’t work. But the solution is NOT to make the student who is gifted a permanent “teacher’s helper” and say, “They’ll learn to socialize that way.” Uh, no. Now, don’t get me wrong; friendships can be formed from that kind of alliance. But what can also happen is, the other kids see the “tutor” and start to think, “Wow. Julia really is better than me” or “Wow, now I REALLY hate Faith. She’s a teacher’s pet.” So the student who’s gifted ends up alone not because of his or her own attitude, but because of perceived arrogance that doesn’t exist, or because other kids are intimidated.
  • Where there’s a tutor, there’s a tut-ee, and they’re usually the same kids. (Yeah, I know “tut-ee” is not technically a word, but it kinda fits, so forgive me this once). 🙂 Ahem. Back to the topic. If you see a classroom where a few students are picked out to “help” other students “understand” material, all the time, you’ll probably also find a lot of the same kids need the help. This may not be a stict one-to-one relationship; the kids who need help in English might turn around and become the “experts” when it’s time for science. And in that kind of situation, study buddy systems may work better than usual. But even then, teachers run the risk of seeing kids in the same pairings all the time. Or, more disturbingly, they run the risk of having group A always be the, ahem, A-list group, while group B always needs extra help. The result? The kids who need help may start feeling like they’re singled out as “bad” or “dumb,” while the A-list group gets superior or gets tired of helping. (Remember, these kids are kids, not junior teachers). And even in the best study buddy situation, if the pairs are not changed up, teachers may hear kids complaining that they always have to work with the same people. This may cause animosity; the kids may not even like each other. Or it could cause cliques; if your study buddy becomes your best friend, he or she could quickly become your only one.
  • “Perpetual tutor” situations means kids in the middle get lost.Somewhere along the line, I think we got the idea that to be average–say, the B’s and C’s student who stood out in other ways–was somehow not good. The kids with straight A’s, or the “special” kids who needed help with the basics, deserved all the attention. (I think we got that idea once kids stopped going outside to find their friends, and stopped eating cupcakes because of obesity concerns). Understand that yes, kids on either end of the spectrum do need attention, and sometimes, it’s more attention than the “middle kids” get. But the danger here is that our “middles” get lost. Their standout characteristics aren’t nurtured as much, if at all, because they don’t need “special” education, but they haven’t got the grades to be teacher’s helper. So they just sort of float. And then we look up and wonder, “Whatever happened to Fred?” We shouldn’t have to ask.
  • Junior teachers have a fuller plate than regular old kids. I’m not saying for one minute that this always happens. But if a kid who makes straight A’s or shows “gifts” is placed in the permanent role of junior teacher, he or she may be expected to act grown-up in other ways, whether he or she is ready to or not. (Believe me, there are plenty of elementary-age kids who’ve skipped grades, but come home from middle or high school and still play with Hot Wheels or Barbies). Kids who are gifted run the risk of having expectations dumped on them from day one (just as kids with disabilities run the risk of having no expectations given to them from day one). Neither case is fair.
  • When only a few teachers exist, no one really learns the way they could. I’ve said it before and will keep saying it. There has never been and will never be such a thing as an ideal classroom. We can try, but we won’t get there. That being said, we should try. And what that means is letting kids of all levels–severe disabilities all the way up to highly gited–work together in a naturalized setting and in natural ways. That is, instead of one-to-one relationships of gifted/”special” teams, throw a couple of the “middle kids” into a group and let EVERYONE learn together. Let the kids who are gifted experience the worlds of peers who may not be geniuses, but all have other, just as valuable, skills and talents. And allow everyone to be a teacher in his or her own way, every day. As a saying on one of my favorite teacher’s walls used to say:

None of us is as smart as ALL of us.

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The White Elephant in the Room: Gifted Education–A Real Gift, or an Empty Box?

Hello, readers,

This blog is usually dedicated to the issues surrounding children and adults with disabilities; moreover, it’s dedicated to what I will call the “conventional definition” of disability–a definition that focuses on lacks, not strengths. But it occurred to me today that in our school systems, there’s another group of kids who may be feeling just as segregated and cast out as kids with conventional disabilities or “special needs” do. Those are the children considered academically gifted.

Now, of course, being gifted in any way–academically, artistically, athletically, socially–is NOT a disability. In fact, it is often treated as an extra shot of ability (although in singling out kids whose giftedness is obvious because of, say, high IQ or unusual depth of talent that you can see on paper or on the field, we sometimes forget ALL children have these gifts). But today, we will just focus on those kids who obviously have gifts that society considers an extra ability shot. These are the kids whose parents hope the doctor will have an unusual diagnosis for them (as in, diagnosis: genius). 🙂 These are the kids whose parents look forward to having them tested. The kids whose parents call them “special” and don’t hear, “Oh, I’m so sorry.” Giftedness is the atypical thing you want your child to have. I wonder, though: can giftedness be treated like a disability, too? If so, how have we as teachers, parents, or other “experts” done this? And what is the best alternative response?

To answer the first question, can we treat giftedness like a disability, and have we done it: Yes, I believe so. How, you ask? Well, first, let’s look at the obvious ways. For instance, many schools utilize “pull out programs” for students who are gifted. This is less common in today’s educational system than it was ten or fifteen years ago, but these programs still exist. Essentially, they mean that the child in question is taken out of the regular classroom and placed in a different one, either for part of the day or the whole day, to do a different level of work than his or her peers. The classroom can also function as a pretty much self-contained unit.

Now, I hear what you’re saying, because I’ve said it, too. “Chick, that’s different from special education. Gifted kids really need a different level of work, and self-contained rooms with a smaller peer group mean they won’t be distracted.” And yes, I agree that students who are gifted have some different needs than students with conventional disabilities. For example, they may benefit from a smaller class because they’re more comfortable forming one or two deep friendships rather than five or six warm acquaintances. And some may either have a harder time with distractions or have a deeper need for quiet when they work. (I, for instance, am one of those people. Unless it’s “white noise,” like air vents or ticking clocks, or my own personal noise, like my iPod, I do not want to hear it while I’m working).

However, is a pull-out program the true answer for these needs? I say no, for many reasons. The first is, no matter how you slice it, a pull-out program is still based around taking kids out of the regular environment and putting them in an environment that, depending on the school, the teacher, and many other factors, can feel contrived. One argument for that might be, “It lets these kids know they’re special.” Ah–but we use “special” when we talk about kids with disabilities too, right? You know, those kids who get the stares, the pitying looks, the negative diagnoses, and the pitying apologies to parents from other adults? Right–and kids who are gifted know this, probably better than most other kids. So put yourself in their shoes. They might think, “Okay, I’m going to a special class. But Jeffrey goes to a special class because he’s different. He has a disability, and all the kids say he’s weird. So am I weird, too? Is it good or bad to be “special?” (As a matter of fact, I think we’d all do well to ask ourselves that question).

And speaking of what the other kids think, let’s move on to the social factor. The use of self-contained classrooms for students who are gifted may in fact lead to social stigma, no matter how good teachers are at trying to deflect it. And believe me, I’ve seen some great ones. Now of course, the argument here is, “Kids are cruel,” and “Kids will be kids.” And to an extent, that’s true. To an extent, that may even be okay. For example, when my younger brother was in middle school, he and his buddies used to tease the kids who went to Academically Gifted pullout, calling them “Accidentally Gifted.” But the thing is: those kids were in on the joke. They dished it as well as they took it. In that situation, you could chalk it up to “kids being kids,” and as far as anyone knew, no one got seriously bent out of shape.

But I see two things that could go wrong there. One, what if the kids in the pullout program don’t like the jokes? What if some are in on the joke, but a couple of others are really bothered? Should we tell them to “shake it off?” Maybe; it depends on the seriousness of the situation. BUT, that doesn’t give parents and teachers a license not to be vigilant. Stay in tune with the social scene. Know your students (or kids). And if your gut tells you what’s going on is wrong, do something about it.

Two, let’s switch gears for a minute. Suppose the kids being made fun of were the kids with disabilities? As a matter of fact, we don’t have to “suppose”–it happens all the time. Show of hands, readers. How many of you grew up hearing, or even saying, terms like “sped,” “spazz,” “retard,” or “cripple?” Right–and it was never funny. Now, of course, some kids with disabilities, just like kids who are gifted, may be in on the joke. That is, some of us–myself included–have learned to use disability humor, including the self-depricating kind, as a coping device. And that means, again, that adults should always be vigilant. Cultivate wisdom when it comes to who is and isn’t laughing. And remember: kids who are gifted, and kids with disabilities, may be especially vulnerable to these kinds of things. I think we may need to be a little more vigilant with these groups when it comes to teasing, in general, than we would with the average student.

Now, circling back around to the self-contained “gifted classroom”–we’re questioning the need for “special education” as a place (instead of a service). We decry the use of disability slurs like the ones I wrote above (and yes, just like the N word, these are slurs). So my question is, just because a child is “special” for a good reason, why are we doing things to and with him or her that look like versions of what we find in Disability Land? When you think about it, does it really make that much more sense than self-contained rooms for kids with disabilities? Understand, of course, that some children may choose to utilize self-contained classrooms, gifted, with disabilities, or either. And that’s okay if that’s what they want. But in general: does the self-contained gifted classroom truly make sense?

Let’s suppose, for the sake of this post, that we say it doesn’t. Okay, you might say. Then how is my gifted child going to be served the way he or she needs? Well, first of all, let’s give your gifted child some people-first language. Never forget, your child is still a child first. His or her identity is not contingent upon the ability to do extraordinary things. We love that these kids can do those things, but that’s not why we love them.

But I digress.

So, how to serve the student who’s gifted without using the pullout method (and this includes homeschooling, tutors, and so forth–UNLESS your child wants them)? The best way to do this may involve showing teachers how to incorporate different levels of work into one classroom (for example, a curriculum with consistent Emerging, Mastering, and Challenge levels–Challenge being aimed at those who are gifted). Or, for another example, perhaps an English class is divided into small groups whose members read three different books or do three different book projects, based around the same themes, according to their levels. Or perhaps some math students stick to basic algebra for most of a semester, while others move on to the more advanced side of the subject where appropriate.

Because many school systems also suffer from overcrowding, and since many school systems have noted that their population of students who are gifted is underserved, perhaps it would also be a good idea for classrooms to enjoy the benefits of more than one teacher. This sometimes happens in full inclusion classrooms where some of the students have disabilities; a general ed teacher and a teacher trained in disability-related education work in the same room so that no one is “pulled out.” In theory, this could also work if a general ed teacher were paired with a teacher who has mastered gifted education. (And, wouldn’t it be neat to have students of all intelligences, including students with intellectual disabilities, working together in one room?)

“But Chick,” you ask, “what about the distraction issue? What if these kids really need alone time, or one-on-one help? Wouldn’t such a setup deny them that?” Well, perhaps so. Perhaps this would not work for everyone. As I have said before, our world, and therefore our schools, will never be perfct. But what we fear does not have to be true. For example, I have said before that we as people need to examine why and how learning has become “sitting up at a desk for six hours.” Perhaps some of the students who get distracted would benefit from soft music or what are called “sensory breaks” (such as, leaving to do work in a nearby room that is not a self-contained classroom, but is set up to induce calmness and focus with things such as paint colors, sound, and so on, on their own terms). And perhaps some students could benefit from one-on-one time with a teacher before or after school.

Again, school will never be a perfect place. After all, if the world were perfect, we’d all know everything and wouldn’t need school. But I think we’ve penalized all of our students–especially our students with disabilities, but also our students who are gifted–by deciding who does and doesn’t “belong” in the general environment. Instead, let’s think about how to make gifted education a true “gift” from which all students can benefit.

P.S.–Watch for future posts on twice-exceptional kids, the dangers of expecting kids who are gifted to be perpetual tutors or “teachers’ helpers,” and more.

Disability Diets?: A New Twist on “You are What you Eat”

Hello, readers,

Having spent a bunch of time trying to juggle several responsibilities, including getting a fiction project ready for a contest, I haven’t been here in awhile. Rest assured, however, that I’ve been brainstorming post topics for the time that I would return. And so, here we go with our newest post. This one concerns a phenomenon that I would like to call the “disability diet.” It is a form of “special,” which as we know is in turn a form of segregation. And in many cases, it may not be necessary. In fact, I believe that if the medical community started treating food in a different way, especially when it comes to people with disabilities, their lives–and by extension, everyone’s lives–could be improved.

Now, before we go any further, you need to understand what I am NOT saying. I am not saying there is never any reason for a person with a disability or disorder to be on a particular diet. There are a myriad of disorders such as Prader-Willi Syndrome, immune and autoimmune issues, and the effects of some physical disabilities, that make a particular diet completely necessary to sustain life. For example, if a child or adult has a physical disability that does not allow him or her to chew and swallow, then yes, a particular diet based around liquids is completely normal for that person and not at all a mark of segregation. So too goes the reduced-calorie diet of the individual with Prader-Willi, or the increased-calorie diet of someone whose system doesn’t digest food well. These diets are not “special” in the negative sense because without them, these people could not live to their full potential, or even live at all.

What I am talking about here is a situation in which people without disabilities make generalized statements, and therefore sweeping recommendations, that say all people with X disability need, or can benefit from, specific diet types. For example, let’s look at the recent three-part series of news articles appearing on foxnews.com and other news websites on diets for “special needs.” The special needs targeted are autism spectrum disorder (ASD), Down’s syndrome, and cerebral palsy (hereafter abbreviated as DS and CP).

The articles’ author, Jacqueline Banks, is, as she describes, a “certified health counselor and a mother.” Therefore, she is qualified to talk about kids’ health. And she does raise some true points about all of these disabilities, such as the fact that children with autism are more likely to have food sensitivities related to gluten or soy, that kids with DS are more likely to be overweight because their bodies don’t burn calories as quickly, and that kids with CP may have problems chewing and swallowing, and therefore not get the nutrients they need. I am not disputing this woman’s qualifications or that she has presented us with true facts. However, some of the statements in her articles seem to have a bent toward a “once = always” mentality. For example, she writes that children with cerebral palsy MAY have difficulty chewing and swallowing, which does not infer that all children will. However, later on in the article, she writes, “Consider adding calorie-rich smootheis to the daily diet,” right after explaining chewing and swallowing problems. Banks doesn’t specify that the smoothies will help children who can’t swallow; she seems to make an across-the-board recommendation. She also writes, “Because constipation and acid reflux are due to poor muscle tone…avoiding foods that can add to constipation and acid reflux is the best option because these symptoms will likely not be completely eliminated.”

Wait. Excuse me? It sounds, Ms. Banks, as if you’re inferring quite a few things with that statement. (1) All children with CP are prone to constipation and acid reflux (2) They should be put on a “special diet” because their low muscle tone is to blame (whereas, in a person without a disability, no “special diet” is recommended; they are often just told to put more fiber and healthier foods into what they already eat) and (3) Once constipated, always constipated, if you have CP. That’s assuming a lot, and I think the assumptions are faulty.

Let’s move on to the articles on DS and ASD. Again, in both articles, statements with the feel of generalization are made (such as, “Periodontal disease becomes prevalent in adulthood” for people with DS. Sounds like you’re implying all people with DS have, or will have, bad teeth). Or, “there is a clear connection between the brain and the gut” in the article concerning ASD. Yes, this is true, but Banks’ article seems to promote the idea that making sure a child on the ASD spectrum’s physical diet is okay will always reduce other, non-physical symptoms. Again, the once = always mentality, combined with the idea that diet is the most important thing to consider when dealing with disabilities.

Now, yes–we should not allow children with disabilities to live on junk foods, sodas, fatty meats, and processed food. But–and here’s the key, folks. Here’s why I chose to write this post. Neither should we allow ANY child to have such a diet. Get the picture? High-fat, high-cholesterol, junky foods are not good for anybody. And yes, they may well help reduce the severity of symptoms in people with these disabilities. But the problem comes from the fact that Banks, and other nutritionists, doctors, and other “experts” say that these foods should be “eliminated,” not reduced. The problem comes from the fact that these experts are singling out children and adults with disabilities for restricted, “special” diets, whereas people without disabilities are not often placed on “special” diets. At most, they may get a strong recommendation to eat healthier. It’s as if we’re saying, “Okay, if you don’t have a disability, you can be in control of your own food. But if you do? Then you’re not smart or responsible enough to know what you need, so you eat what others tell you to.”

I also noticed something funny about these articles. Every one of them (three total) had a lot of the same recommendations: eating leafy greens, eliminating junk food, using high-calorie fruits like bananas or mangoes, hiding nutrients in other foods, or using organic foods when possible. Wait a second–I thought these things were good for EVERYBODY. Isn’t that what we’ve been telling people to do in order to combat the obesity epidemic for the past, what, twenty years? Yet again, people with disabilities are singled out as needing these things “more,” and needing to be restricted and watched more closely.

“But Chick,” you might say, “that’s because their bodies do have special needs–their systems don’t work like ours do.” And yes, perhaps that means they cannot or should not eat the same amounts of certain foods, mixtures of certain foods, or types of ingredients (such as yeast) that a person without a disability would. But that does not mean we should approach these people with an attitude that says, your disability defines everything about you, even something as basic as what, when, and how much you eat. I mean, think back to when you were a little kid. Your mom, dad, or guardian might have said, “Trinity especially likes spaghetti,” or said to your preschool teacher, “Fiona needs to try broccoli today; we’re working with her on vegetables.” But it wasn’t because your body had “special needs” for those foods. It was because your body had the natural need for those nutrients, and because your taste buds were learning what to accept or reject. When did that become atypical for people with disabilities? Why is everything, even down to what goes in their mouths, about “special needs?” What’s so special about needing nutrients, and getting them in a way your body–and yes, your taste buds–will accept?

And yet, what happens when food really is the key to helping someone with a disability live his or her best life? For example, I recently read an article about a young boy who was diagnosed with autism. But through experimentation and observation, his parents discovered “autism” was really something called “cerebral allergy to milk” (more on this in a future post). The parents reported this to their doctors, and were repeatedly basically told they were in denial and needed to accept the autism diagnosis. Do you see what happened here? The medical community would not listen to the parents, who knew their child best, because many of them probably never heard of cerebral allergies to milk. If it’s autism, it’s autism, they said. There is no other answer, and the answer certainly can’t be found in what your kid eats. But when it comes to promoting restricted “disability diets” that are actually good for everyone, not just a select few that the medical community chooses to try to “fix?” Well, they’re in there with both feet!

I don’t know about you, but that smells–and tastes–a little fishy. And normally, I enjoy fish, but that’s not a compliment.

We used to say, “You are what you eat.” And in some ways, that may be true. But rarely, if ever, does food wholly define a person. So let’s stop putting people with disabilities under a construct that says because of a natural, acceptable disability, one more thing about their lives must be tightly controlled.

Watch your Mouth, Part 2: Disability–The Truth, or Just one Big Diss?

Hello, readers, and welcome to my first two-parter post. As indicated, this is about another word used in reference to persons with disabilities, why we use it, if we should, and, if we must, how to give the word some dignity. This post is also trickier than yesterday’s, because the word I’m writing about is at the core of this blog: the word “disability” itself.

I know what you might be saying to yourself, because I said it, too. Have we become so afraid of words–such rabid hair-splitters about what is and is not offensive–that we must question the word “disability?” Well, if you guys know me at all, you know I think hair-splitting and political correctness is for the birds. So yes, I raised that question with myself before beginning this post, especially since–and I’ll say it right up front–I don’t know what other word we’d use if we tried to replace “disability.” But maybe that’s a good thing, because if we rethought our use of “disability,” we’d be closer to an answer for that question.

Legend says when inventing the lightbulb, Thomas Edison failed one hundred times before succeeding with his first incandescent lamp. Someone asked him, “So you have basically failed?” And he said–oh, I love this–“No. Now I know 100 ways that don’t work.” Keep that in mind, and now think about the words past generations have used to describe disability, and moreover, persons with disabilities.

  • Crippled
  • Retarded
  • Mongoloid
  • Handicapped
  • Physically/verbally ___ly challenged
  • Impaired
  • And even, in some cases, words like “unfortunates,” “unclean,” “tragic”–even “evil”

Yes, those words still exist. And some people use them. But as the disability civil rights movement grows (and it says a lot that we needed a movement), we’ve learned those words aren’t the best. In other words, we know at least nine words–ways of signifying disability–that DON’T WORK. We have not failed. But we do have to keep trying.

But why, you might ask, do we have to keep trying? Isn’t it enough that we say “persons with disabilities?” I will concede, yes, that is a huge step in the right direction. The other “tags” society has used throughout the centuries have actually focused on the disabilities involved without ever acknowledging a person ever existed outside of it. So simply acknowledging that fact is a major positive. And as I said before, I’m not sure yet what the replacement for “disability” should, or even would, be. All I am trying to express here is, I’m currently asking myself if “disability” truly expresses what we should say about this very capable group of people, who all have their own strengths, even if they are not “typical” strengths.

Let’s do a word study. 😉 If we break the word “disability” down, we have the root word “ability,” which is the operative word. Ability is what we should all be focused on where anyone, disability or not, is concerned first. Yes, we can talk about and deal with weaknesses, impairments, and other issues. But in order to afford anyone, disability or not, any kind of personal dignity, we should focus on strengths and positives first (unless of course, we’re talking about, say, Hitler or something). But in front of this positive root word, we have the stem “dis.”

“Dis” is a stem that is often used to mean “away.” As in: dismiss, disengage, discombobulate, discord, disrespect. As in, to send away respect. To take away engagement.

So technically, “disability” means “to take away ability” or “ability–away.” And isn’t that what we often do to people with disabilities? We focus so much on their weaknesses, or what they need help with, that we forget about ABILITY? Even if we have the best of intentions and the kindest hearts, can’t that happen to the best of us? Of course.

So once more, this is a problem I do not have a solution for. Yet, I have to wonder: in trying to communicate what our loved ones need, and communicate who our loved ones are, do we need to use a term that basically takes ability away?

We didn’t always have some of the words we do now. Someone had to make them up. So…does anyone out there want to brainstorm some new words?

Watch your Mouth: “Rehabilitating” Our Words

Hello, readers,

If you’ve been reading this blog for any length of time, you know I’m an advocate of people-first language–that is, terms that put the person, not the person’s disability, first. “Vivian uses a communication device,” not, “Vivian is nonverbal.” “Kate has cerebral palsy,” not “Kate is crippled.” “Jacob has autism,” not, “Jacob is autistic.” You get the idea. If we put a person–a name–first, then we have acknowledged the most important thing about that person is his or her name. Identity. An identity that does not rest on disability.

However, if we are going to be as inclusive and fair as we can to people with disabilities, I say we shouldn’t stop at people-first language. (And before you accuse me of political correctness, check out the December archives for the post “It’s not P.C.–and it’s not C.P., Either.”) This has nothing to do with political correctness or “tolerance.” It has everything to do with taking people with disabilities out of the box that says, “Your diagnosis is more important than your name. Your disability is the first thing people should know about you. Your weaknesses will always matter more than your strengths.”

I mean, think about it. You would never hear someone say something like, “Hi, I’m Sarah, and I have psoriasis.” Or, “Hi, I’m Rick, and I have cancer.” You would never hear someone introduce him or herself with, “Hi, I’m Julia, and I’m overweight.” The only place you ever hear phrases like that are places like AA, NA, or Al-Anon–specialized groups where the idea is to recover from a certain habit or addiction. Why is that? I’ll tell you why–because outside of special groups, those phrases don’t belong. Yet, we constantly treat people with disabilities as if they are literally expected to talk and think in those terms. (Partially because we constantly expect them to only interact with “special” groups, but that’s a different topic).

And as I said, it’s not just people-first language we need to be aware of. We also need to be aware of the words we use to describe how we interact with people who have disabilities. I can think of a dozen, and I’m sure you can too, but for now, we’ll focus on one: rehabilitation.

Synonyms for this word include “therapy,” “recuperation,” “help,” and “analysis.” The dictionary definition reads–oh, man, you gotta see this–“Help somebody return to normal life,” followed by, “to help someone return to normal health or life by providing training or therapy.” A secondary definition reads, “To restore somebody’s good reputation after he or she has been disgraced or neglected.”

Yup, time for another one of Independence Chick’s Famous Word Studies! 🙂

Let’s look at what these synonyms and definitions imply. And boy, do I wish I had a classroom so you guys could tell me your answers. I’ll give you my take, though. These synonyms and definitions imply a few things about the person undergoing rehabilitation:

  1. They are somehow sick or “broken”
  2. Their condition can be changed with the right help–“training or therapy”
  3. Their current condition is somehow a disgrace
  4. They have somehow been neglected and need “special help” to be returned to a rightful standing in their society and/or community
  5. Their lives are not “normal” and can only become so through the aforementioned “special help.”

Is that disheartening to anyone? It certainly is to me. I thought we were far past the days when we looked at disability as a tragedy or a sign that one was “broken.” And I certainly thought that, in a world so inundated with the idea of tolerance, we could get over the idea of disability as abnormal or a disgrace, or a person with a disability as someone who is naturally neglected. But it appears not, because we see disability as something to be “rehabilitated.”

If we break this word down further (as I was taught to do in eighth grade English–thank you, Ms. Trussler)–we see the stem “re,” as in “again.” “Habilitate” sounds like the word “habitat” or “inhabit.” In other words, “rehabilitate” essentially says, make this person fit to “inhabit” society “again.” As if the person with a disability–the person being rehabilitated–wasn’t fit to interact with, or even live in, “regular” society in the first place.

So my question again: why are we using this word to talk about how we treat people with disabilities? “Oh, she goes to therapy at Smith Street Rehab Center.” “Oh, we use vocational rehab.” (Right, the place where counselors often try to find a job FOR a person with a disability, before that person has ever had employment. As if, by virtue of having the disability, that person’s job-seeking skills are inherently defective and must be rehabilitated from the start).

Let’s look at a couple other, darker sides of this word’s improper usage. Who else do we use the word “rehabilitate” for? Ever heard it used for criminals? Sure you have–so in a way, when we use this word, aren’t we putting people with disabilities in the same group as criminals? “Oh, no, Chick, we’re not,” you say. “They didn’t do anything wrong.” Ah, but we treat them as if they have, because their brains and/or bodies are not “right.” They are not “normal.” They are “failed normals.” So they must either be taught to fit our definition of normal–rehabilitated–or kept in their “special” places where they can’t bother us.

And how about this? Remember how the dictionary definition of rehabilitation included “to restore to normal health or life with the right training or therapy?” Right–but many, many disabilities are incurable. (By the way, I’m not sure we should be using THAT word, either). I don’t care what kind, or how much, therapy and training you do–you will not wholly eradicate cerebral palsy, spina bifida, epilepsy, Down’s Syndrome, or whatever other disability you might try to “rehabilitate.” Certainly there have been stories of miraculous reversals, but one, those are few. Two, therapy often has nothing to do with them. So why is it that the “experts” continually push families to “rehabilitate” their loved one with a disability? Are they hoping a cure will materialize? Well, they might be, because then, of course, that person would be “normal.”

Which brings me to my last point–what is “normal?” Where on earth did we come up with the word “normal?” I suppose what we really meant was “typical,” but if we look at individual people, we see something quite interesting. Disability or not, everyone’s life is extremely different. True, there are some characteristics we could say occur across the board, such as, MOST two-year-olds have a vocabulary of this or that many words, MOST six-year-olds can brush their own teeth, MOST eighteen-year-olds go to college. But just because one person out of, say, a hundred doesn’t fit that mold, suddenly, he or she is abnormal? I don’t think so. I think it’s more realistic to say the mold needs to change, rather than that person.

So, is “rehabilitation” a word you truly want to connect to a loved one with a disability, knowing the brokenness and abnormality it implies? I would hope not. Now, of course, finding new words and getting used to them takes time, so I would never condemn anyone for using that word. (I might correct you, but condemn, no). However, knowing what some of the words we use about people with disabilities imply, I say it’s high time we find–or even make up–some new ones.

Life Skills Redux: Independent Living–Worthy Goal, Impossible Dream, or False God?

Hello, readers,

So, new month, new post. Or is it? I’ve written so much about life skills in this blog, I’m starting to feel like the director of those movies that start out as a single film, but evolve into a trilogy. (And I’m listening to instrumental music inspired by Lord of the Rings as we speak).

Actually, we could probably all take a lesson from Tolkien’s world. If you look closely at Middle-earth, you will soon notice that humans, elves, dwarves, and hobbits live in it together. Perfectly and peaceably? Not always. That’s where problems with renegades like Orcs crop up. But they live together. They know the other races are there. And it’s natural. It’s their world. Not so with our world, especially when it comes to people with disabilities. But that’s NOT just because of segregation. Yes, that plays a major role. But what I’ve learned in the past almost-year is, Disability Land is a unique place to live and move, because unlike some other worlds, it doesn’t draw clear lines between what is benevolent and what is malevolent. Sometimes what looks malevolent is legitimate “tough love” (i.e., disciplining the child whose disability has, thus far, let him or her get away with everything). Sometimes what looks benevolent is actually the worst thing you could say or do to or for a person with a disability (i.e., the dying, but ever-present construct that says institutionalization is a viable answer to making sure these people are cared for).

Sometimes, constructs used in Disability Land are neutral. That is, everything depends on how they’re approached, planned, or implemented. One such construct is that of independent living. By itself, that term seems fine. The implementation of that term looks good on paper. But what is it, really? How can we–people with and without disabilities–learn to use it for good, not for harm? In fact, can this construct even be harmful?

You guys know me. I love to ask questions, which means sometimes, I have to remember to wait to have them answered, or make myself answer them one at a time. Let’s do that now. First question: what is independent living? As defined by Heward (see April archives, the statistics post), independence involves three things: gainful employment, involvement in social groups (making and keeping friends), and living with a spouse or roommate (s). So at least part of independent living involves living and functioning in daily life on one’s own. If one chooses to live with another person or persons, that’s fine. It’s encouraged, in fact. The key here is that (1) An independent chooses when or if to live with someone else, and whom those people will be. And (2) an indpendent adult may choose to live with others, but those people, in most cases, know to respect each other as individuals. Unless someone in this living arrangement is harming herself (i.e., drug use, heavy drinking, suicidal behavior, abusive behavior), the spouse or friends are not going to insist on controlling her decisions, her money, her food, or anything else. So to add to Heward, independent living appears to be the CHOICE to live with others or not–and pick those people–but still maintain one’s autonomy as long as serious physical, mental, emotional, or spiritual harm does not occur.

And yet, so many people with disabilities are denied this choice. Or they are given what looks like the choice (such as, if you want to live apart from Mom and Dad, it must be in a group home or other such community, with another relative, and so on). It’s independent living on someone else’s terms.

Of course, I know the arguments here. I can hear some of you using my own words to back yourselves up: “Well, you said as long as no serious harm occurs–some people with disabilities can’t function on their own because they WILL hurt themselves.” And yes, I recognize the presence of severe disabilities that might preclude that person from living totally alone. But you have not poked a hole in my argument. Instead, you have successfully segued me to the next, and more, important parts of it.

Question two: How does independent living *really* look? I gave you the accepted definition via Heward, plus my own addendums based on my belief that everyone has the right to choices of where, how, and with whom they will live. Now, let’s look at the societal construct of independent living. You might find it looks a little different.

If I had the opportunity to do a sort of “Man on the Street” interview, I might ask some random people–without disabilities, to back up what I’m about to show you–what they first think of when they think “independence.” Some things I might hear are:

  • Ability to purchase and keep, or at least rent, one’s own home
  • Ability to care for others because you have:
  • Ability to physically care for self
  • Here’s a biggie: The enjoyment of others, but without real need for them

See, that’s what gets me. People without disabilities, especially doctors, therapists, and the like, often look at people with disabilities, starting in childhood, and measure their contribution potential–might as well come out and say it, their worth–by whether they will be able to “live independently.” If your child’s prognosis includes “He will be able to live independently,” you are expected to be relieved and happy. If not, it’s a tragedy. It sentences you to a life of caring for someone who cannot give, only take, according to society. But what does that attitude truly say?

If we go strictly by how society has defined independence since its inception, successful independent living seems to turn on the fulcrum of the ability to live ALONE. By “live,” though, I don’t just mean, go home to your own place at night and be comfortable because you, and you alone, control the remote and pick out the ice cream. (Although that can be a perk). 🙂 By “live,” I mean “function.” Move in the world. Interact. Except, according to society, true independent living doesn’t involve interaction because if it’s successful, it’s done alone. You may have friends, but you keep them at a distance. You may even have roommates, but you all go your separate ways a lot. You may have a spouse, but it’s debatable whether you will see that person as a true confidant (e). You may have a social group (clubs, church, Mommy and Me, the gym), but you move through those in a largely singular way.

You don’t call on people when your car goes bust. You’re independent, so you’re supposed to fix the car yourself.

You call the doctor when you’re sick, but then you get the prescription filled yourself and, like an independent adult, tough the sickness out. You don’t ask for help, or accept the offers of care. You don’t need that anymore. Independent adults aren’t supposed to.

You don’t call your friends at four in the morning, even when you’re truly hurting inside and need them, because they have their own problems.

You have to learn to cook and clean, if you’re a girl (and yes, if you’re a guy, but this is a standard still pushed mostly on women), because it proves that not only are you an independent adult, but you’re ready to have others depend on you. Burned meals? Dirty floor? Not acceptable.

In fact, this construct of independent living assumes two negative, flawed things:

1. You can lose your right to be considered independent if something happens that you could’ve controlled (those burned meals, that dirty house, financial problems, and so on).

2. You are only allowed to reach out for help if a catastrophe occurs. But what do we consider a catastrophe? Among other things: cancer, broken bones, mono, and DISABILITIES. But if you reach out because you have a disability, you suddenly become the dependent object of pity, not respect. (When really, we should respect these particular people more than perhaps any others–see March archives on survivors).

I don’t know about you, but if that’s the way we as a society see independent living–that success at being an “adult” equals a largely solitary existence–then we’re more twisted than I thought. Think about it, guys. Who really wants to live the way I just described? Now, I’m not saying solitude is bad. I’m an introvert, and let me tell you, if I didn’t have my space and silence, I might literally go crazy. Some of my happiest hours are spent with me, myself, and I. But that doesn’t mean that’s the way I always want it to be. Nor does it mean that’s the way it should be, because I recognize it’s not healthy for me to function entirely alone. It’s physically draining, emotionally depressing, and spiritually dangerous for me. God Himself said, “It is not good for man (woman) to be alone”–and though He spoke of the male-female partnership, I’m convinced He didn’t only mean marriage.

So think about it. One, why are we telling people with disabilities, you’re ultimately successful only if you can live by yourself? And two, why are we shunning all forms of dependence upon each other?

Now, don’t get me wrong. Autonomy is a precious thing, and no one has the right to take it from another human being. The power of choice belongs first to the individual, not the group, the government, or the organization. Believing otherwise is often the seed of socialist, communist, or even fascist thinking. And yes, at times, a person has no choice but to stand on her own. The ability to do that is inordinately valuable and should be learned well. But when did natural dependence on others become bad? Why is it a sign of weakness to, when ill, call up a friend–or even Mom–and say, “I’m not feeling well; could you bring me some soup/cover for me at work/just keep me company?” When did it become “needy” to call your best friend and say, “Hey, you know more about X subject than I do–mind helping me out?” Why is it not okay for a woman to say, “Honey, I love you, but to be honest, I hate to cook?” Or a guy to say, “Honey, let’s hire a professional to build this gazebo?” Where did we get our “milestone” charts–not the ones for, say, health and wellness, but the ones that say stuff like, “Your kid’s five–why can’t he sit still yet?”

Helen Keller once said, “Alone we can do so little. Together, we can do so much.” Point of Grace has a great new song whose lyrics include “It’s like you gotta break down before you ask for help.” The message there: why is that?

Why are we still stigmatizing our people with disabilities (and that includes mental illness–we’re still stigmatizing the psychological help process, too) by making them feel “less than” because they reached out? I may be smart, but it makes no sense to me.

So, to question three: How to make independent living work? How to get rid of the guilt, shame, and “less than” feelings our population with disabilities often experiences? First, recognize that when it comes to independent living, nothing is impossible. No one–NO ONE–should be denied the choice to live where, how, and with whom they choose just because he or she has a disability. But second, recognize–as I am learning to–that independent living is one goal. It is not THE goal. It is not a God. In fact, it may not even exist. Maybe, instead of shoving “independence” down people with disabilities’ throats, and holding it aloft as the goal they will never reach (even though we demand it), we should say,

“My goal for you is that you would be able to live in such a way that your individuality is preserved, but you enjoy the benefits of a society whose people are dependent on each other.”