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Archive for May, 2012

“Ye Hypocrites”: Naturalizing Disability–Can it be Done?

Hello, readers,

I took a break from the blogging world for a variety of reasons, one being Memorial Day. And, to those veterans who are serving now, have served, or gave their lives serving: THANK YOU. My handle is independencechick–well, you guys and gals are the reason anybody in America knows what “independence” means. And to those of you who sustained a disability of any kind from service (including mental, emotional, and psychological), THANK YOU–and know you are rooted for every day. Your life is not ruined because of that disability. Your life, in fact, has a new dimension, and you have a new story to tell. (See my post on survivors in the March archives).

That being said, I had other reasons for taking a break, not the least of which was thinking about what it meant to make disability “natural” and accepted in mainstream culture. I had some help for this, some of it from a couple of readers. For example, a lovely woman named Sharon wrote in to respond to my recent post on obesity. She mentioned a facet of obesity I foolishly forgot: Prader-Willi Syndrome, which actually is a legitimate, medical, disabling condition. For those of you who don’t know, PWS is a rare disorder/disability in which the hypothalamus malfunctions. For those of us who aren’t doctors–or who don’t watch Mystery Diagnosis regularly–that basically means your brain cannot recognize when your body is full. As a result, someone with PWS is constantly hungry. And I’m not talking hungry like, “Ooh, it’s 2:30 and I want a snack.” I’m not even talking about, “I missed a meal/have been fasting for a week.” This has been described as “a starving hunger” by the mother of Connor Heybach, a young man with PWS. As a result, these children often become quite overweight, and can eat themselves to death.

Sharon is raising a grandchild with PWS, and though she was cordial in her comment, she seemed offended–rightly so–by the post, because I assumed that, in the absence of very narrow parameters, obesity was always the person’s fault. So, to Sharon: (1) I apologize, again. Consider this public regret for foolishly forgetting about a rare disorder, when ironically, I should know better than most how living with one feels (I was told all my life how rare my manifestation of CP was). (2) Thank you for giving me the opportunity to share new knowledge with others. (3) Thank you for reminding me of something–the world doesn’t treat any disability as natural or acceptable, in many cases. And obesity is no exception. In fact, the world–sadly, myself included at times–acts as if obesity is the one human condition it is still acceptable to look at with punitive attitudes and disgust. Never mind preexisting medical issues, genes, and other factors nobody can do anything about.

And that brings me around to today’s topic. For months, I have been telling readers–all right, all right, preaching, if you must, though that wasn’t my intent–that disability is natural. I admit, I’ve done it partially for selfish reasons. I’ve got a disability, and I know the pain of “normal” people’s faulty perceptions, beginning with the notion that I am not “normal.” I wanted to express my own thoughts and reactions, and to show that I was as natural, normal, and worth regard as anyone. But I’ve also done this for the sake of others with all kinds of disabilities, especially those whose disabilities caused them more pain and trials than mine caused me.

But really, can society today be expected to “naturalize” disability? And if so, how, when, and by whom will that be done?

I think we’ve already come a long way toward that goal. After all, back in the Middle Ages, disabilities, particularly ones like epilepsy, were considered curses, divine punishment, or evidence of demon possession. I love the Medieval period–one of my best high school memories involves dressing up and participating in Madrigal Dinners. But that line of thinking, I can totally do without. (In fact, I probably would’ve protested it and been burned as a heretic). And as you already know, we’ve come an even longer way in the centuries since, because legitimate disability services exist, institutionalization numbers are way down, and disability rights has begun to be seen as a civil rights issue. But–a la an impatient little kid on a car trip–I gotta ask, “Are we there yet???!!!” The answer’s no. And I am utterly, thoroughly ashamed to admit, I got the answer from my own mirror.

I was at church at the time (hence the post title), for a midweek service and meal. I rarely make it to midweek, so even though I knew most of the people there, they weren’t people I knew well. At my church, the meal takes place a good hour before the service, so that those who want to eat can, but those who only make it to the service part don’t have to worry they’re missing anything. As a result, a majority of my fellow diners were just acquaintances. And I was eating, I noticed something a large number of those acquaintances had in common. At least four of them (remember, this wasn’t a big crowd) were men from the local group home for men with developmental and mental disabilities. All their disabilities are visible, and all have significant mental/cognitive impairments.

Now, no. I did not switch my table. I did not think, “Ew!” or, “Poor things.” But keep a few things in mind. (1) I have a disability, too. (2) That disability precludes my driving, so I was at church with my mom (who played taxi service that night). My sainted mother is also a little overprotective. For instance, she kept asking, did I need something cut up (although I’m not sure how anybody does that with plastic utensils), if the food was okay, if I needed anything, and so forth. And the thought occurred to me: I’m 26, but I’m here with a parent. Everybody here knows who I am and who Mom is, but they don’t know me personally. If they heard or saw the wrong thing, they might think I’m exactly like the group home guys. This is particularly true because, when walking and standing, I “look” disabled. And I can tell you from experience, nothing hurts me more than someone assuming, or even saying, I am not smart, or could have autism, mental disabilities, or one of their cousins. But that does not excuse what I was thinking.

If you’re saying to yourself, “What do you mean?” or, “That’s an okay reaction,” maybe you didn’t hear me. Or maybe, as often happens, I need to explain further. See, when I had that reaction, the next thing I thought was, Why would it be so bad to be put in the same boat with those guys? It’s not like they’re evil, or contagious, or obnoxious. Now, of course, I wouldn’t want someone to come up to me and start talking and acting as if my IQ were below average. But in reality, are their disabilities any “worse” than mine? And why couldn’t I look at these men and have the gut reaction of, “Oh, I know those men. They have disabilities. And you know what? That’s natural.” Right–because I was too busy worrying about how I looked in comparison to them–and because unfortunately, I’m still trying to break out of conditioning that says, “Disability is unnatural. It is unfortunate and to be pitied, avoided, prayed against.”

So, all that to say: huge wake-up call. If we, as people with disabilities, can’t see our conditions (and by “condition,” I mean nothing except “human condition”) as natural, how are we going to treat others in our unique community? Are we going to place ourselves in a hierarchy, judging each other based on who’s closest to “normal?” And how are we going to teach ourselves and others to react well to the negative–or positive, yet misguided–prejudices or faulty thinking of people without disabilities?

How did we get to this point, anyway? Well, yes, prejudice and pain. There are still people out there who believe disability has no place in the world, and however they’ve manifested that, it’s touched–and burned–a lot of us. One such manifestation, for example, is the one that forgets, not all people with disabilities are the same. As in, physical disability will always equal mental disability. Mental disability will always equal inability to do anything of significance. Psychological disability will always equal inability to function. (Whew, sounds like a bunch of math formulas. I knew there was a reason I always thought math was evil). “All people with disabilities are the same,” for example, is the core statement behind my reaction to the men at church.

But as much as we’d like to blame it all on prejudice, I don’t think we can–and when I say “we,” I mean, people with disabilities. Remember how I recently said we shouldn’t be victims? Yeah, well, blaming all our problems on prejudice can be a form of victimization. Sometimes, we’ve got to take responsibility for the fact that we’ve internalized negative perceptions, letting them control us, our lives, and our self-images. Maybe we’ve gotten too comfortable with the shame. Or maybe we’ve learned to say, “The disability will always be in the way. Every time I try to do something, I get a “no” or “you can’t,” and that’s sure as heck not natural.”

You’re right–it’s not. And scolding or punishing ourselves for internalizing, staying stuck in shame others put on us, or doing anything esle to perpetuate the “unnatural” myth? That’s not getting us anywhere.

“But Chick,” you might be saying, “you don’t get this. I have severe disabilities, not some mild thing like you’ve got. I literally have no control over my life. I need help with the basics. That’s not natural.”

Ah–it isn’t, huh?

I would challenge that perception. I would propose that if it doesn’t feel “natural,” it’s because somebody told you that. Or maybe you didn’t hear those words, but you did see you were in the minority, and that made you feel “unnatural.”  Now, to get out of that line of thinking, you do need support–support of people who truly care about what you want out of life and who want to help without being control freaks. You will need spiritual support of your choosing, and you will need physical, mental, and emotional ways to break out of your comfort zone. I am not a proponent of, “Say this positive mantra, and voila, you will feel like your disability is natural.” As I was recently reminded, feelings have very little to do with reality.

But yes, you’re right. Part of the responsibility for making disability a naturalized part of our world lies with those who don’t have disabilities. Yes, I am talking about turning off the pity, the punitive attitudes, the smarminess, and all that junk. But I’m also asking you guys to do what I’m still learning how to do. When it comes to disability, make sure you don’t just talk a good game. Educate yourselves. Get to know real people with disabilities, and learn from them. And soon, you’ll not only start seeing their disabilities as natural, but maybe you won’t see them at all.

By the way–the other night at church? There’s a good ending to that story. By coincidence (or perhaps God choosing to remain anonymous) I ended up sitting with Jonathan, one of the men from the group home. True, some of his mannerisms threw me off for a minute–such as laughing loudly at least 30-60 seconds after the pastor’s jokes. But really, so what? And after awhile, I got used to it. As in, “So he’s got a loud laugh. Well, forget it. I probably sing off-key, and I’m always so cold at church somebody usually offers me a jacket. Is that ‘natural?'”

Sure is–and so was Jonathan. And so is everyone else. We just need to make that happen for real.

What Part of NO Don’t you Understand?: The Truth about People with Disabilities and “NO”

Hello, readers,

No.

It’s one of the first words we learn as toddlers, and for most of us, it’s a word we use with gusto during that “terrible twos” phase (which, as I’ve heard, can stretch into the terrible threes or fours). It’s a word some people, especially women, and especially in Christian circles, have trouble saying–and meaning–the older they get. Because as we know, God called us to serve, and if you say no to service, even if you’re already doing five other things, you’re supposed to feel guilty, right? Wrong. But that’s a whole other topic. The point is, we have all learned the word “no,” and even though some of us don’t act like it at times, we know how and when to use it. Most of us also know there are times when “no” is the only proper or safe answer. But for people with disabilities, the sad reality is, in 98% of cases, it’s as if this word doesn’t exist. It’s the word they are not allowed to say. It’s also the word a lot of their loved ones are not allowed to say, because to tell an “expert”–and people with disabilities’ lives are, as we are aware, stuffed with experts–“no” is to be noncompliant, in denial, aggressive, grieving, or something equally as ridiculous.

I used to think that this was expected, even okay. For example, I knew I was never supposed to disrespect parents or teachers, and that translated to therapists as well, because they too were in authority over me. So to say “no” to something they wanted to do was not an option. My parents could say it, but not me. Fortunately, for the most part, I had therapists who knew what they were doing, and none of those therapists were abusive or neglectful. But as I write this post, I keep thinking about that two-year-old boy–you know, the one whose mother basically said, “Cooperate (allow this therapist to pull and jerk on you, even if it hurts) or get a spanking.” As in, “You can say ‘no,’ but that ‘no’ will be punished. When you say ‘no,’ it means nothing. We will still do what we please to and with you.”

Now, the first time I heard this particular story, I thought, yeah, right. Kathie Snow has got to be kidding. She’s just another of those bleeding-heart permissive parents who let her son manipulate her into taking him out of therapy, and now she badmouths everybody who chooses to do things differently. I didn’t come to that concluison on my own, either; I had help. I thought, surely it’s irresponsible, even ungodly, to give in to a child with disabilities just because they said “no.” And when I spoke to my mother about this, she basically said, “Parents have the final say over children, period.” (She did NOT mean children have no rights, but she, like me, wondered if all this “disability is natural” talk was proporting that we give children whatever they want because of disabilities). Plus, I was always taught that therapy was supposed to hurt. In other words, if your leg muscles pulled when someone stretched them, it was just because they were tight. If your braces hurt, well, that’s what they were supposed to do because they were new, or because they were getting your feet in the “right” position, which your feet were not used to.

Armed with this, I sent an email to Kathie to ask her: Isn’t therapy supposed to hurt? And, how can therapy be bad? I wouldn’t be able to do the same things I can do today if I hadn’t had therapy.

I don’t remember the exact response to that email, but I do remember two things. Kathie challenged my thinking that I wouldn’t “be where I am today” without therapy, because, had other methods even been explored? And, she said, there was a difference between natural stretching and actually hurting a child during therapy. Grabbing, jerking, and yanking on a kid’s legs is hurting him; I don’t care who you are or what your views on child-rearing, corporal punishment, etc. are. And that little two-year-old should have been listened to when he basically said, NO.

And yet, so often, when someone with a disability says “no,” it means nothing. It doesn’t even register as significant. “No,” from a person without a disability, means “They don’t want or need to do that. Let’s respect that” (or, in the case of children, it could mean, “Yes, you still have to do this thing you don’t want to, but I respect that you’d rather not.”) I think that’s the key difference. When a person with a disability of any age says “no,” there is no respect involved. There is no consideration that, “Maybe we should listen” or, “Yes, you still have to go to therapy, go to the doctor, whatever, but I understand how you feel.” Instead, the knee-jerk response tends to be, “She’s being noncompliant.” “He’s being manipulative.” “He’s not following his IEP, IHP, or behavior plan/goals.” In other words, other people say “no” because they have freedom of choice and expression. Other people say “no” because there is a legitimate reason for those feelings. People with disabilities say “no” because they are by nature belligerent, manipulative, whiny, and noncompliant.

Doesn’t that make you sick? It makes me want to puke. It kind of reminds me of people throughout history who said, “Blacks are scientifically inferior” or “Jews have no real moral conscience.” So why do we look at people with disabilities, and do virtually the same thing to them? Why are they consistently pigeonholed as rebellious or whiny? Where is THEIR freedom of choice and expression?

I wasn’t going to blog this until later on, but after yesterday, I knew I had to. Yesterday, one of my Facebook friends posted an article about a public school in Waupun. One of their classrooms utilizes a “Quiet Room” for students who misbehave. According to the Fox News article on this Quiet Room, it is located behind a concrete wall in a standard classroom. It “measures seven feet deep by five feet wide and stands just under eight feet tall.” This room has no chairs and no ventilation. The floor is tile. The walls are–get this–padded. The room locks when someone holds a handle from the outside, meaning that often, the use of the “Quiet Room” takes two teachers–one to get the kid in there, and one to hold the lock.

Superintendent Donald Childs says the “Quiet Room” is very common in public schools and is used to calm children who are out of control. Really? Up until recently, I’d never heard of a school with such a thing. Plus, the only child mentioned as being put in this room is–you guessed it–a child with a disability. Tyler Rennhack has Asperger’s Syndrome and has been placed in the Quiet Room as a consequence of his “meltdowns,” as they are called.

If the story stopped here, I’d be upset enough. Locking a child in what amounts to a box, for any behavior, is not acceptable, whether or not the child has a disability. But it gets worse. When Tyler’s mother probed into what was going on at her son’s school–frankly, I’m surprised she was able to do so without breaking someone’s nose–she was told that her son was “being disruptive,” so he was put in the Quiet Room. What constituted disruption? Apparently, Tyler was pacing around, saying “no, no, no,” and exhibiting “trigger behaviors” for a meltdown.

What a crock.

One, I think we need to seriously reexamine why pacing around the room is disruptive. Certainly, students cannot learn if, say, half their classmates are jumping on desks, destroying property, and swinging from the ceiling a la Tarzan–but none of that was happening. Tyler’s pediatrician said the boy was not engaging in any “provocative” behavior at all. Perhaps Tyler is in fact a kinesthetic learner who needs to move around in order to learn best. It happens–some children can move around, touch classroom objects, and not appear to be paying any attention–but then they remember everything the teacher says and respond well to lessons and activities. And some of those children have disabilities, but some do not. My point is–when did it become the norm for children to be “able to learn” only while sitting straight up at a desk for six hours a day, with little or no physical activity, breaks, and so forth? (It’s like, we take away recess and P.E., and then we complain about, and blame kids and parents for, obesity and “behavior issues.”) Moving around the classroom did not warrant locking Tyler Rennhack in a box.

Secondly, why was Tyler saying “no, no, no?” Yeah, could’ve been what is called “stimming” in the world of the autism spectrum–but if that’s the case, it is a NATURAL behavior for a child on that spectrum. It is not harming anyone. And suppose it wasn’t stimming? Suppose Tyler was really saying no to something important–well, guess who wasn’t listening? And guess what message this boy received? Right–Saying “no,” and not abiding by the way we tell you to learn, is bad, and you will be put in the Quiet Room for it.

Thirdly, Sueprintendent Childs defended the teachers’ reaction to this incident by saying the room’s door was closed for a “very few minutes.” But psychologists have recently discovered that if you “restrain and seclude” a child, as happened to Tyler Rennhack, you actually cause the body to “mimic physical feelings that occur during trauma” (!!!!) Yeah, great job, Teach. Wanna pay for my kid’s counseling? Didn’t think so.

The superintendent also displayed a condescending and rude attitude toward Tyler’s mother, quoted as saying, “I know she’s not happy with [the punishment]…she’s never been happy with it.” Which tells me that this had been going on for awhile, and yet no one in that school system cared to listen to what mother and son were saying. Mrs. Rennhack was essentially brushed off as, so to speak, another complaining parent with a spoiled kid.

Here’s what gets me about this whole thing, though. Fox News also provided a transcript of a recording between Tyler and his teachers (with Mom in the background, trying to explain his behavior was not a risk). Tyler was described as “causing [classmates] not to learn.” And his teacher said, “You may come out WHEN YOU ARE COMPLIANT.”

You know what, I am sick of that word. Now, I am all for obedience, but not at this level. Not when the alternative is anger-driven, emotionally abusive punishment (or punishment of any kind, because punishment, unlike discipline, is driven by aggression and anger at the punish-ee). And I am sick of people with disabilities, children and adults alike, constantly being labeled as “noncompliant.” As in, “They don’t play by our rules. They don’t do what we sanction as ‘normal.’ They are different. And “different” means disruptive, combative, and a nuisance, by definition. These people must be controlled!”

Oh. So what you mean is, they do things differently from you? In a way that, perhaps, you don’t understand? And because you’re intimidated by what you don’t understand, you will react to it with anger and aggression–the same reactions you accuse people with disabilities of? You’re saying that children and adults with disabilities must be punished because they dared tell you “no?” Because they wanted or needed something other than what you were willing to provide? You’re saying that, for everyone else, you know what “compliance” is, because they “comply” naturally–but people with disabilities are, by nature, unable to comply, so you will determine FOR them when they have obeyed, and then, only then, will you lift the punishment?

It’s laughably ridiculous. It is, in fact, thoroughly sickening. And it needs to stop, before someone else gets hurt. So say “no” to “compliance” and “behavior plans” and all this other junk. Say “yes” to treating people with disabilities as individuals–with different learning styles, needs, wants, and ways of expressing themselves. And, most importantly, say “yes” to a person with a disability’s right to say NO.

 

Whose Skills are These, Anyway?: Answering the Question of who “Life Skills” are For

Hello, readers,

Some of you may remember a post in the January archives concerning the “life skills curriculum” that many students with disabilities, from all grade levels, are subjected to. For those with mild to moderate disabilities, exposure is often thankfully not as prolonged as it could be. But if you recall, I pointed out some things about these “life skills” classes that are harmful to any student, with any disability. Often, these curriculums are not appropriate or respectful and, as Heward writes in Teaching Exceptional Children, the protected environment of these classes often don’t prepare students for real adulthood.

All that being said, I don’t think the inventors of the life skills curriculum intended it to become a disrespectful, pitiable alternative to real education. I think the people who came up with this concept originally wanted students with disabilities to learn real skills, such as cooking, laundry, balancing a checkbook, cleaning house, and so on, that everyone needs to feel part of the “real” adult world. But I also think many special educators, intentionally or not, bungled that mission. How so? Well, they forgot one underlying principle: everyone needs life skills, not just people with disabilities. And that is what today’s post is about. I want to present a radical idea to you. What if, instead of segregating life skills classes, labeling them as “what disabled kids do,” and stereotyping the kids in them, we made life skills available–indeed, a requirement–for every student?

I understand some of you might object. “Wait, Chick,” you might say. “Are you saying my kid should waste time in school learning to tie his shoes, use the toilet, cook,or do laundry? I can teach him that at home; he needs to focus on his academic future.” Okay, but I want to point out a few things:

1. Yes, life skills should begin at home if at all possible. No teacher–none, no matter how good–knows a child as well as his or her parents or guardians do, and those people should be the ones who head up the growth process of that child into an adult. But because school is often so focused on advanced academics (and there’s nothing wrong with academics!), we often see college students head off to university still asking how a checkbook works, or “Now, is it whites in hot and darks in cold, or the other way around?”

2. Everyone, disability or not, can have a future–academic AND life-skill based. But today’s school curriculums are often so wrapped up in one or the other, the other half falls by the wayside. And again, that’s often a matter of pigeonholing. “You’re normal; you get to go to ‘real’ school. Oh, you have a disability? You need to be in the ‘life skills’ class; it’s easier.” (Although in many cases, that’s a myth in itself).

3. The goal of life skills classes–any classes, in fact–should first and foremost be to RESPECT the student and treat them as individuals with valuable words, goals, dreams, and purposes. This is just me talking, understand, but it’s what I think. Therefore, I am in no way suggesting that your child with no disability, or a mild to moderate one, be placed in a “life skills” curriculum where a big part of what is learned consists of the skills he or she already knows, or the “basic basics.” That is, if your teen doesn’t need to learn how to dress and use the toilet, don’t subject him or her to lessons on it.

So, with those things in mind, what do I think a life skills curriculum for every student would look like? Well, keep in mind, I don’t have all the facets of this idea perfect yet. But here’s the kind of thing I’m thinking of: a curriculum where academics and age-appropriate life skills are given equal footing, and include all students, regardless of disability or lack thereof. So, in a kindergarten class, the kids still learn their ABCs, their numbers, colors, shapes, etc. But kindergarten also becomes the place where they master various physical, emotional, and social skills, such as:

  1. Tying shoes, buttoning coats, putting on mittens, etc.
  2. Waiting one’s turn to speak
  3. Using appropriate vocal volume in different environments
  4. If appropriate to the student, mastering the last fine points of toileting, grooming, etc.
  5. Beginning to clean up after one’s activities.

Yes, it seems obvious. But how often do teachers spend time trying to teach high-schoolers with disabilities the exact same things?

Or, let’s look at, say, upper elementary or middle school. There, inclusive life skills curriculums might include:

  1. Organization, academic and otherwise, and keeping up with one’s own assignments and belongings. (How many upper elementary or early middle school teachers out there are still tracking down lost fourth grade homework folders? Trying to decipher illegible seventh grade handwriting? How many of you have said, “I wish they’d be responsible, for once!”)
  2. Social skills: lessons on humor/the difference between laughing with and laughing at, friendships and maintaining them, responding to a classmate whose interests or needs seem “different”. (Personally, I think stuff like this has, and would, cut down on the clique phenomenon).
  3. Beginning to budget and keep track of one’s own money/beginning to learn how to work in a cooperative job (for example, a lot of schools have coffee shops, school stores, and so forth that the “special kids” run, but why are these places segregated?)
  4. Beginning to learn how to plan a meal and make healthy choices (again, something “special kids” are made to do, but that kids with disabilities are only exposed to in theory. If we make kids with disabilities take “field trips” to the grocery store, why can’t all kids do that? Too often, these “field trips” are based on the erroneous conclusion, “Without real exposure and constant supervision, disabled kids won’t learn.”)

High school could include a lot of “theory into practice” stuff, such as:

  1. Discussions of real career goals for everyone (as in, not limiting the kids with disabilities to menial jobs or “special college” programs.) Followed by shadowing and mentoring at the indivdual student’s chosen job (or research, if direct shadowing isn’t available).
  2. Preparation, cooking, and consumption of real meals in a social setting (with fellow students, teachers, and invited family members). And when I say “real meals,” I mean, meals that people actually eat. As in, allowing kids with disabilities to eat the dessert everyone else gets, rather than saying, “Remember, ice cream is not a healthy choice.” Using a mixture of “easy,” “medium,” or “hard” recipes, instead of expecting kids with disabilitis to either cook pheasant under glass or “only” be able to prepare microwaved entrees.
  3. Relevant lessons involving money and budgeting, such as debit and credit card management, salary interpretation, checkbook balancing, or online banking.
  4. Self-advocacy. Really, this should be happening throughout school, but as students grow up, these lessons should involve more and more complex situations, even and especially for those with disabilities. How many kids with disabilities have you seen who, when finally allowed to participate in their own IEP meetings, don’t have the confidence to do so or don’t know what to say? Right–because they weren’t taught! How many girls, with or without disabilities, have you seen or heard of who become anxious about approaching a male boss for a deserved raise? How many guys have you seen who may be anxious about expressing interest in the arts, home ec, and so forth because they’re not traditionally “guy things?”
  5. Etiquette. My middle school used to have a vocational teacher who would hold a Manners Meal for the eighth-graders every year. Sadly, he retired before I got to eighth grade, but it was a great concept. You dressed up, used more than one fork, and used your napkin. Guys pushed out girls’ chairs and opened doors, and girls were polite to their male escorts.
  6. Planning for marriage and family, using real-world scenarios and, where possible, simulations. (I hear what you’re saying–that’s what home ec is for! Ah, but when was the last time home ec included kids with disabilities?)
  7. Basic mechanics and/or home maintenance (cleaning, building, etc. And yes, guys and girls should all learn every aspect of this. The girls learn to fix a car, the guys learn how to get a mustard stain out of silk).

Again, I realize this isn’t perfect–because nothing is. But combining these skills with the academic ones most skills focus on would give us well-rounded, legitimately prepared students. And–thank goodness–it would cut down on segregation and pigeonholing.

Living Verbs: Giving People with Disabilities a Chance to ACT in the Real World

Happy Mother’s Day, readers–to all the mothers out there, including my own. Let me take a minute to say: my mother is fabulous, and without her, the accomplishments I have achieved, such as success in the classroom and in academia, would not be possible. She is a tiger lady who, upon hearing suggestions that her daughter be placed in a group home, exempt from mathematics and given a certificate rather than a real high school diploma, and even–yes–sterilized, said, “I DON’T THINK SO!” Love you, Mom!

This post is, in some ways, dedicated to mothers, but it’s based more on the concept of motherhood, and the concepts of many things we think we know the definitions for, but may not. What do I mean? Allow me to explain.

My church’s lead pastor is away today, watching his younger daughter graduate from college, so the sermon was left in the hands of one of our associate pastors. He usually heads up our middle school ministry. He’s a sweet, grounded, hilarious guy that I even had the privilege of attending youth group with. He’s been claimed–he has a wife and a little girl–but still a warm acquaintance. Anyway, he preached on motherhood this morning. But he kept repeating the idea that motherhood does NOT describe you just because you had a child. Yes, it is a wonderful, miraculous thing to have children, and it should be celebrated every day. Yet, he pointed out:

There are some women–myself among them, actually–who long to be mothers, but haven’t been given that opportunity yet. And there are others who have tried to become mothers, but for various reasons, including infertility, adoptions cancelled at the last minute, or whatever the case, still have empty arms.

There are some whose mothers were neglectful, abusive, or absent, or for whatever reason, had painful relationships with their kids, which scarred said kids and opened a need for forgiveness and healing that, perhaps, hasn’t happened yet.

There are some whose mothers were good and loving, but who are no longer alive.

And there are those who never had a mother at all.

What was my pastor’s point? Simply that motherhood has more to do with who you are than what you have. That is, you might not have kids, and you might not have had the best mom, or any mom, either as a role model or still around to teach you how to be a mom. But every woman has the opportunity to be somebody’s mom, through nurturing, encouraging, and growing them.

Now, I gotta be honest here. I’ve been struggling with cynicism lately, especially when it comes to talk like “everything is possible,” “you can do anything anyone else can,” etc. Isn’t that funny? I tell that to you–and mean it–in every post. But for myself? It’s tough. I mean, I don’t drive, so on a typical day, I cannot leave my house because my city doesn’t have transit options. While I finish this last degree, I work at an isolating online job where it takes two weeks to earn $70. I’m living with my folks because I’m still in school. In other words, if I were to go by what the “experts” said, I would be a disability statistic (see April archives). But my disability is very, very mild. I have three stinking degrees and a perfect 4.0. I can work. I want to work. I am faithful to God. There is no reason for this, except the disability itself. Believe me, I’d go out and be a waitress or a Whopper flopper or some other job like that if I could. But the balance and fine-motor skills just aren’t there.

So you can imagine why I’m battling cynicism (“Anything’s possible? Right, unless you have a disability”) and why, when my pastor said that about being a mom, I thought, “Yeah, right. I’d love to mentor someone, but for that, you have to drive them around. You have to play sports and do crafts. You have to be up on the ‘teen scene,’ part of the church’s ‘cool crowd.’ Sorry, Pastor, not me. Finish your sermon; talk to you next week.”

And then I thought, wait a minute. If you’re trying to overcome cynical thoughts, why keep thinking that? Because you have a disability, my traitorous mind said. (The other half of that mind said “So flipping what?” but I’m still working on letting her talk). Here’s my point. I’m gonna be working on letting the hopeful part of my mind talk, and I think all people with disabilities should do that, too. However, it can be tough, because I think often, people with disabilities are not given the opportunity to ACT. DO. They don’t have verbs attached to their lives. As author Marta Perry put it, they “watch everyone else have lives.” Why is that? Because we toss around the qualifier “can’t.” People with disabilities even do this in their own heads. “I can’t lead. I can’t parent. I can’t mentor, encourage, nurture, work, or play. I’ll sit this one out, thanks.” Some people with disabilities might even be telling themselves–or hearing from others–“God’s purpose is for you to sit and watch.”

At the risk of sounding heretical, I don’t believe that. You remember those old commercials used to encourage kids to be active? The slogan was, “VERB. It’s what you do.” I say we give everyone–especially people with disabilities–a chance to have verbs. To, in fact, be living verbs, not just incidential clauses or punctuation marks people put up with “because the sentence sounds nice that way.” Yes, people with disabilities can and do make the world “nice.” But we were not put on this Earth just to watch and cheer while everybody else does things.

Who’s ready to go be a verb?

My Big Fat Disability Question: Is Obesity a Disability?

Hello, readers,

In case you didn’t get the message from the title, I’ll warn you: this post may be controversial. Obesity is a touchy subject these days, for a variety of reasons, not the least of which is the physical and emotional health of obese people. With that in mind, I will try to treat this topic as gently as possible, while still sharing “tough love” when necessary.

I think before we can start to answer this question, we need to reexamine what a disability is. I defined it in another post, so let’s look at it again. According to Heward, a disability is an impairment (remember, the two words are not interchangeable), significant enough to interfere with daily life activities. Other definitions, from my faithful computer dictionary, include “restricted capability to perform daily activities” and “medical condition restricting activities.” Synonyms given include “incapacity,” “infirmity,” “ill health,” or “debility.” Fortunately, most of these synonyms are outdated. Some don’t even make sense. I mean, if “ill health” equals disability, I’m “disabled” every time I get a cold, right? Please.

But let’s return to obesity. It would be easy to say, “Okay, it’s a medical condition, and it prevents people from doing daily activities. Therefore, it is a disability.” However, it is my personal opinion that these definitions are flawed when it comes to “disabilities” like obesity. I think it would be more correct to say obesity is, or at least can be, a disabling condition. Allow me to explain.

I have met a few obese people in my lifetime, one of whom moves in and out of daily life. I have also seen and heard the stories of obese individuals, and some of them are heartbreaking. For example, some people become obese because of pre-existing medical issues that required several surgeries or other procedures, rendered them bedridden, and therefore precluded any significant physical activity. It doesn’t take Einstein to figure out, in that situation, you can’t move very much. If you don’t move, calories sit in your body and become extra weight. I don’t care how healthy you are otherwise; I think this can happen. And yes–in that situation, sometimes people eat unhealthy foods because they taste good. Eating things like pizza, burgers, processed food, or sweets activates the brain’s pleasure center. Therefore, the person feels better emotionally. And they will keep returning to those bad foods because they feel good. Unfortunately, as we know, this turns into a devastating, sometimes fatal, tradeoff.

I heard one such story from the television documentary Too Fat for Fifteen: Fighting Back, the story of Taneshia Mitchell. She had a lot to overcome, in part because of pre-existing medical issues. And she did; this young woman has lost over 200 pounds and is doing well. Quick shout-out: WAY TO GO, TANESHIA!

So, for some individuals, obesity is not their “fault”. Their food choices or activity choices may have exacerbated the problem, but the root of the obesity is not necessarily those people saying, “I enjoy being fat.” In cases like that, obesity becomes a disabling condition. When you can barely walk, or when the slightest physical exertion hurts you–literally–then you have been disabled, however temporarily.

But notice, I did not say “you have a disability.” Why is that? For a number of reasons:

  • Obesity can be overcome/changed, on a permanent basis. People who are obese have the option of working to lose their weight, and many take that option. Obesity can be “cured” (I put that word in quotes because I’m not sure it’s truly appropriate) if one eats well and gets active. For those whose obesity is morbid or super-morbid, corrective surgery, followed by a change in lifestyle, is possible and will fix the problem, if that person has a loving support system, physical and emotional help, and yes, a dash of willpower. I don’t care what medical procedures exist or what kind of therapy you do–99.9999% of the time, CP, spina bifida, blindness, deafness, or what have you cannot be cured on a permanent basis. Some disabilities, like speech disorders (i.e., stuttering), can be “grown out of,” but that’s not a guarantee. And even if those disabilities are “grown out of,” the person’s willpower or choices only took him or her so far. Natural, but specialized help was needed, and even then, the stutter or other issue may “come back.”
  • In many cases, obesity is a chosen lifestyle. Now, I hear what you’re saying. “Of course it’s chosen, Chick; some of those people just gave up!” True–but if that’s the case, then they need emotional and perhaps psychological help, not the enabling of the people around them. I’ll give you two examples: Scotty and Billy. These young men are, respectively, from Too Fat for Fifteen and the Discovery Health documentary Half-Ton Teen. In both cases, their families, most notably their mothers, are enablers. Billy’s mother regularly feeds him junk food and junk drinks, with the explanation that she’s showing love to her “baby” (he’s 19). In return, Billy often acts like a child (“You said if I was a good boy at the doctor’s, I could have two games.”) Billy’s mother attempts to help him on his weight loss journey, but vacillates between tough love and enabling. And if Billy cries or acts upset, she’ll often be upset right along with him. Similarly, Scotty, who was about 14 at the time his documentary was filmed, attended the Wellspring weight loss camp and school with several other kids ranging from about 11 to 20. On camera, he can be seen constantly thinking up excuses not to do activities, skipping required fitness activities, or crying profusely when asked or prodded to do something. At home, he often makes unhealthy choices, but justifies them (the most caloric sandwich Subway has is still okay because it was purchased at Subway and is lower in calories than a Big Mac). His mother enables him, lashing out at counselors and camera people, acting as if corrective surgery will solve all her son’s problems, etc. In these two cases–and others like them–these people are proving they would rather stay obese–and therefore contribute to something that could kill them–than improve their lives.

A cautionary note: Certainly, parents or other loved ones can “enable” another disability, either by allowing their loved one to live as a victim or not insisting that loved one make strides they are capable of. (For example, it is NEVER acceptable for a therapist to pull and yank on a child to the point of hurting him or her, and it is NEVER acceptable to let therapy take the place of a natural life, or be used as a threat or incentive for rewards. But if you choose to enroll your child with a disability in therapy, it is perfectly acceptable that they be expected to cooperate and do the best they can. It is perfectly acceptable to encourage a child with an emotional disability like PTSD or OCD to make strides, and to push them gently if you know they are capable of more than they’re doing). The difference here is, again, obesity has the potential to be permanently changed. Therefore, enabling has more of a potential to keep the person with obesity locked in an unhealthy lifestyle, which they may end up choosing, out of rebellion or because they weren’t given legitimate help.

Do I dislike or look down on obese people? No. Remember, I used to be slightly overweight, so I can only imagine the physical and emotional trials these people experience. Do I think obesity is a sin? No, although I do wonder if it’s the best way to take care of one’s temple. But, do I think people with obesity have disabilities? No. They have conditions that may disable them for a time. But in most cases, they have what other people with disabilities will never have: a chance to reverse the condition. That’s why, in closing, I encourage anyone with obesity reading this to know there are people out there cheering for you. For their sake and for yours, take that unique opportunity.

Superstars: Recognizing the Accomplishments of People with Disabilities as Real Achievement

Hello, readers,

As an English tutor/teacher, book addict, grammar guru, and writing aficionado, I love words. I love to read them, write them, define them, play with them, and study them. So to start off today’s post, let’s do a quick word exercise. Without using a thesaurus or dictionary, close your eyes and think: What’s the first thing that comes to mind when you hear the word “accomplishment?”

This is one time I wish I could interact with you, because I’d love to hear your answers. Maybe some of them have a personal story attached, and I love getting to know people through their stories. Maybe some of you thought of a definition based on what “accomplishment” meant or did not mean in your own life. For example, maybe some of you participated in art, music, or sports, but were only considered to have accomplished something if you won a prize or trophy, or got MVP. (And for those of you who have gone through that–have a hug). Maybe some of you are feeling lighthearted today and thought, “Chick, my accomplishment was getting out of bed this morning!” Hey, I hear you. And I also know for some, that answer is raw reality. For those of you who fit that category–kudos to you.

Now, why did I have us do this word exercise? You got it–because I want to examine what “accomplishment” means for people with disabilities–and what it should mean.

We can go ahead and break out the dictionaries and thesauruses now. My computer dictionary defines “accomplishment” as, “the completion or fulfillment of something,” “a remarkable or successful achievement” or “a talent or skill that has been developed.” Synonyms include “achievement,” “skill,” “talent,” or–my favorites–CAPABILITY and ABILITY.

Most of you might be thinking, “Okay, I know where she’s going with this–people with disabilities all have abilities, and they are the most important things.” Right-o. But you might also be wondering about the kinds of disabilities we’re talking about, and what should be considered an accomplishment. For example, we all know that despite our best efforts at inclusion–which everyone should make–it might not be fair to expect a child with a severe intellectual disability to make straight A’s or score in the hundredth percentile on a standardized test. Sure, we can shoot for things like that, but they may not occur. Just as, we shouldn’t keep someone with a physical disability from playing sports. But if those physical disabilities seem to preclude him or her from being the “star” player–or if he or she doesn’t want to be that person–we shouldn’t saddle him or her with that expectation. (And by the way, what’s with this “star” business, anyway? Not really my cup of tea). So, what should we say an accomplishment is? And how should those accomplishments be treated?

I said a second ago, I don’t buy into a “star player” mentality. Certainly, one athlete, musician, actor, artist, or writer may be the most talented in a group, and we should acknowledge that. But not at the expense of the others’ talents. Why do I say that? The answer is simple: because everyone is a star. Sometimes we just don’t know it yet.

Maureen G. Mulvaney, a writer and teacher, wrote a piece for Chicken Soup for the Teacher’s Soul entitled “Any Kid can be a Superstar.” At the time, she was teaching in a self-contained special ed classroom, and fifth-grader David was, shall we say, her problem student. She describes him as constantly “disrupting the class by cussing and fussing,” being physically aggressive, shouting “I hate you!” upon their first meeting, and generally acting out the emotions of a very angry boy. But Ms. Mulvaney also describes the “poor customer service” David received at school. Everyone from the bus driver, to the lunch monitor, to teachers outside his wing, yelled at or scolded him. Mulvaney writes this child was “passed from class to class like a bad rumor.” Children ridiculed David, in part because of his bullying and in part because of his significant body odor (he earned the nickname “Stinky David” very quickly, and sat in his own cubicle because none of the other kids would sit near him).

Like any teacher, Maureen Mulvaney suspected the blame lay with David’s parents, but on a visit to their house, she encountered, not abuse and neglect, but a loving father and grandmother, both barely literate, trying to do the best they could under impoverished circumstances. Ms. Mulvaney received permission to teach David how to groom himself and let him take showers at school, and, as I remember, may have been able to supply extra food. But most importantly, this teacher saw that a lot of David’s issues rested with the “customer service” he and the other special needs students got–or did not get, rather. She encouraged the other teachers and staff to start calling her students The Superstars whenever they saw them. The plan resulted in improved behavior, improved morale all around, and a new outlook for David. “I ain’t stinky no more; I am a superstar!” he said once.

Maureen Mulvaney’s right, I think. No matter how severe a child’s disability, disorder, or circumstances are, he or she is a superstar and should be treated like one. What does that mean? I think it means a few things.

First, seeing the loved one with a disability in your life as a superstar means acknowledging, praising, and nurturing any strengths and talents they have. If they’re intellectually, artistically, athletically, or socially gifted, that might be easy. But even if they don’t seem “gifted” in the classic sense, that loved one has passions and talents. Maybe they lie with comedic timing. Working with animals. Gardening. Whatever. The point is, no matter what the circumstances, learn to look for those talents, instead of saying something like, “Monica has a severe disability; the best she can be expected to do is stack boxes and make widgets.”

Next, understand that accomplishments can in fact be anything. This is especially true for children. That is, if you have a child with a disability who, for whatever reason, doesn’t get the hang of tying shoes until age eight or nine? So what–that’s still an accomplishment. If your child with PTSD goes through 24 hours without a panic attack, when you were hoping for a week? Take a deep breath, put yourself in your child’s shoes, and celebrate those 24 hours. If your child or other loved one comes to you discouraged and says, “I can’t do anything,” be prepared to sincerely remind them of their strengths and accomplishments, and what they have mastered that, perhaps, they couldn’t do before. It will really help!

Finally, understand that, like all people, people with disabilities have many different outlooks on the world. For one, it might be a huge accomplishment to pour a glass of milk in the morning. But for another, an accomplishment might be defined as hitting a home run, getting straight A’s, or something similar. What am I saying? I’m saying, read your loved one’s cues. If they don’t think pouring milk is a big deal, don’t go gung-ho with it. They will feel downgraded, like a baby, and they may even feel you’re acting phony. (Trust me, most people, high IQ or not, know “phony” when they see it). Learn what that person thinks of as an achievement or feat, and go with it. Of course, it’s okay to say, “I’m proud of you; you couldn’t pour your own drinks this time last year.” But save the big accolades for what the person thinks are worthy of them.

To sum up: I think we’ve all been conditioned to think “accomplishment” only means being perfect, or being the best. I think we’ve all been conditioned to overlook “little things” as unworthy of being called accomplishments. But that isn’t true. An accomplishment can be anything–anything that adds sparkle to someone who is already a superstar.

Can’t, Won’t, and Never Will: Taking the Sting out of Disability Land’s “Buzzwords”

Hello, readers,

Well, I have finally finished the first spring semester of my second Master’s degree–something many people would claim a child with a disability would never grow up to do. Go ahead, you can laugh at that. We all ought to know by now, the medical, therapeutic, and other “expert” communities are often not nearly as “expert” as they–and we–think they are. But their negative prophecies for the lives and futures of people with disabilities still circulate every day, like noxious clouds of poisoned air. And we need to expose them, before our loved ones with disabilities breathe too much of that air. Because too much “not” air can be lethal when it comes to a person’s self-esteem, confidence, dreams, and desires.

Most people would probably agree, constant negativity isn’t good for anyone. Spending all your time thinking in terms of “can’t,” “won’t,” and “never will” can make you emotionally, spiritually, and even physically sick. We encourage our children to develop positive attitudes from an early age, even if they have temperaments that aren’t naturally bent that way. I happen to be one of those people; my primary temperament is known as Perfect Melancholy in personality theory. In other words, I’ve got high standards for myself and my achievements, and when they aren’t met, or no one seems to care, I get depressed, moody, or just plain mad. In fact, my parents–God bless ’em–often used to say, “You are the most negative child I’ve ever seen,” out of love mixed with pure frustration. I don’t know how they put up with me sometimes; my childhood was good, but could be emotionally rocky for everybody involved. Authors put out books now for parents on how to help the child bent toward negativity. Well, I have to laugh. Those books are, oh, maybe sixteen years too late. 🙂

Remember my counselor? Yeah, the one who erroneously convinced me my relationship with the folks was emotionally abusive? (Thanks for nothing!) But she did point out something I’ve tried to keep in mind since then. It can be criminally easy to think in terms of “not.” As in, if you think everything you do is bad, the opposite of bad, in your mind, becomes “not bad.” Instead of telling yourself, “I’m fat,” you may start saying, “I’m not fat.” Or “I’m not a bad person.” “I’m not dumb.” You get it. What’s wrong with that? I’m sure you know the answer.

Right. The problem with “not” thinking is, it still keeps the negative construct in there, even if you’re trying to get rid of it. So you have to learn to say, “I am active, a good size, and fine the way I am. I am a good person. I am smart.” Positive things.

Unless, of course, you’re a person with a disability, because Disability Land’s foundation is heavily built on “can’t,” “won’t,” “never will,” and the “not” construct. And that’s my problem with the whole thing. Why do we encourage positive thinking among other people, but when it comes to people with disabilities, consciously or unconsciously tamp down that thinking with the “not” construct? These buzzwords are out in force, people, and our loved ones have been stung so much, I’d venture to say most of them are emotionally swollen. Some might even have emotional anaphylaxis, for crying out loud.

I’ll give you a couple of examples. Some might seem obvious–you may have experienced them yourself.

The negative constructs and thinking usually begin when a child with a disability is born. The doctor, or other expert, takes a look at your perfect, adorable baby and says, “I’m sorry, but your baby has Down’s Syndrome (or Fragile X, or whatever other visible disability might be there). She will never have a normal gait. He will not have normal speech. She will need a special school because her IQ will probably never be above 50.”

Or, maybe you got off a little easier. Your baby seemed perfect at birth–and can I stop for a moment to remind everyone–every baby is perfect, disability or not. So you escaped the “not” construct at the hospital. But then you take the baby home, and in a matter of weeks, months, or years, you start to notice something’s off. Maybe your kid’s too stiff or too flaccid. Maybe he or she doesn’t look at you or reach for toys. He or she doesn’t seem to see or hear you. Has an awkward walk or turned-in toes. Doesn’t speak as well as his or her playmates, to the point that even family members have trouble understanding. You name it, you may have seen it. So you take the baby back to the doctor. At first, he or she might say, “Don’t worry; he’ll grow out of it” or, “She’ll catch up.” But in some cases, that turns into, “I’m sorry. Your child has ____. She will never ____. Take him home, do the best you can. He can’t be expected to do much.” Or, “You need to get this child into therapy right away.”

So you go home. You grieve–as you’re expected to do, because the experts set you up to do so. You follow all the advice, crunch some numbers, and start therapy. And then the therapists get to you. They start saying things like, “She’s made progress, but she won’t be able to walk,” or, “He can’t be expected to learn at grade level.” Or, “She’ll never be able to shake the effects of this disorder.”

So you grieve again. But you go on. You accept the negative verdicts as best you can. After all, this is your kid, and you love him or her. If modifications are needed, big deal, right? You make those happen. And often, you’re surprised because your child (or young adult) exceeds those negative expectations. You may even get mad at doctors, therapists, teachers, or others who make these bleak predictions because, darn it, you’re the parent. Who knows this kid better than you do? Yet, the expectations continue. And as hard as you try, you can’t shake the idea that maybe, some of them are right. Maybe your teenager wants to go to college, but it’s not “realistic.” Maybe a group home or sheltered workshop really is the best place. Maybe your child needs more therapy, not less. Maybe he or she doesn’t need the chaos and distraction of the general ed classroom. Maybe….

So one day, your child is growing up, or perhaps has already grown up to a large extent. Your eight-year-old, who uses a wheelchair, comes to you and says, “I want to play soccer.” Your five-year-old with an intellectual disability says, “Mommy, Daddy, I want to go to kindergarten with my friends.” (Yes, that child can and should have friends). Your teenager with OCD, PTSD, or another emotional disability says, “I want to go to prom” or “I want to become a motivational speaker.” Your teenager with autism says, “I want to go to college.” Your eleven-year-old with a visual impairment or seizure disorder says, “I want to go to the beach with the youth group”–three hours away by bus.

What are you going to do?

Understand, of course, that I am not advocating giving people with disabilities whatever they want. As I explained in my last post, sometimes, that’s not safe. And sometimes, it’s not realistic–yet. But “yet” is the key word here.

Many people with disabilities–too many–grow up with negative buzzwords flying around in their heads. And what happens if you’re exposed to certain words or ideas long enough? Right. You believe them.

I realize there are a lot of parents, guardians, caregivers, friends, and loved ones out there–many who are probably reading this–who are saying, “You don’t understand.” And you’re right, I don’t, because I’m not in your exact situation. But I am an expert at having a disability, because I have 26 years of experience. And I understand exactly what this negative outlook can do, not only to the person with a disability, but to everyone in that person’s life. None of it is good.

So instead, let’s learn some new words. The Gospels say “All things are possible with God.” (If you’re an atheist or agnostic, you can eliminate the last two words, but bear with me.) You guys should know my feelings by now on why people with disabilities are here in this world. So why not open the world–the whole world–up to them? Let’s start asking,

“How is it possible for my child to play soccer? Go to a real college? Be educated with peers who don’t have disabilities? Become the person he or she wants to be? Go where he or she wants to go?”

Put real effort into answering that question. And start telling everybody–including your loved one and yourself–

“CAN.”

“WILL.”

“DO.”

“DID!”