Monthly Archives: December 2012

Closing Down “Islands of Misfit People”: Let’s Give People with Disabilities More than One Dimension

Hello, readers,

I hope everyone has had a restful, joyous Christmas and Hanukkah, and that those celebrating Kwanzaa are thoroughly enjoying themselves today as well. I realize most of us are busy admiring and experimenting with new possessions, figuring out what on earth to do with those leftovers, and jogging off days of cookies, truffles, cakes, and pies. But if you decided to drop by for a visit, or will later, here’s a new post for you. I meant to get it out before Christmas, but you know what they say about good intentions.

One of my favorite parts of Christmas involves nostalgia–the ornaments I made as a kid or bought over the years, the cookie recipes my mom breaks out every year, the annual church Christmas play, and of course, holiday flicks and TV specials. You probably noticed a nod to one of these in the title–the 1960s version of Rudolph the Red-Nosed Reindeer. (Classic with a capital C). And you probably know where it comes from. About 2/3 of the way through the film, Rudolph, Hermie, and Yukon Cornelius end up on the Island of Misfit Toys, ruled by King Moonracer, a winged lion. (I suppose he counts as a misfit toy himself, though the winged lion could be a nod to mythology of some sort–though five-year-olds aren’t likely to get that). Now, as a kid, this went over my head, but it occurs to me now: those toys weren’t “misfits” so much as they had only one thing different about them. But the problem was, that one thing often turned them into versions of, well, one-trick ponies.

For those who need a refresher course, and in order to give an explanation, think about it:

  • A water pistol that shoots jelly. On the one hand, that’s actually a pretty neat trick. I mean, how surprising would it be to your water war opponents if they ended up soaked in Smucker’s Raspberry? Victory assured. But on the other hand, it’s highly unlikely, because of that “misfit” trait, that a child would think to ATTEMPT to use water, or something else.
  • A toy train with square wheels. I admit, that could be tough to play with. But with the right surface, it could work. Yet, who’s going to think of that? More to the point, who’s going to think that train could do much more than sit on a shelf?
  • A jack-in-the-box named Charlie. This one, I still can’t figure out. I mean, who says a jack-in-the-box can only go by one name, anyway? (How about a female named Jane or Jenny or Jacqueline)? And, since we extol differences on this blog, why did that have to be the only thing different about him? Couldn’t a child have learned to embrace his name, and other differences too, rather than poor Charlie being a one-dimensional character with the “wrong” moniker?
  • A bird that swims. Again, pretty neat–different. And kids these days love creatures that do unexpected things, or things they don’t look built to do. Look at the popularity of science fiction, alien movies, comic books full of robot denizens, and the like. When you consider that, the bird isn’t such a misfit. But had I had the movie producers’ ear at the time, I might have said, “Why not have the bird dance instead of sing too, while you’re at it? How about a striped or multicolored bird instead of a plain brown, blue, or red one?”

You know where this is going, right?

Yes, part of the point of this post is that people with disabilities are not “misfit” people, though they often are treated as such. And as we have discussed, we need to rethink our “islands,” such as institutions, sheltered workshops, and group homes. But the main point here is, I think people with disabilities often have something else in common with the misfit toys–they’re seen as one-trick ponies. This can come in a few forms. They’re defined by what they can’t or don’t do (I don’t fly; I swim, so no one wants to play with me; my name is wrong; I have square wheels). If their talents are acknowledged at all, they’re often only given credit for one thing they do well (I can still shoot substances, but only jelly). And other differences besides disability, which should also be celebrated, often get ignored. For example, only about 10% of the population has red hair. But upon seeing a beautiful red-haired girl with, say, deafness, blindness, or Down’s, the disability gets the main focus. Not, “Oh, I love your hair–it’s such a great shade.” (One minor note here: I realize that some people with more severe disabilities may have an alleged limited scope of what they can physically or mentally do. But that doesn’t mean they have only one skill).

Yes, the talents of people with disabilities, and their positive traits, deserve all the spotlight time they can get. But people without disabilities are easily seen as multi-dimensional, and I think their counterparts with disabilities are being cheated out of that. So, loved ones of a person with a disability: enjoy the strengths you can see, but while you’re doing that, plumb deep below the surface and find the invisible strengths as well. Or, as with the square-wheeled train, continue to work on making it easier for your loved ones to show their strengths in a world that may not be prepared to see them.

I think we’ll all have a lot more fun once everyone is allowed to play.

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God Bless us, Everyone: Grace and Disability

Merry Christmas, readers,

The title of this post is, of course, the famous quote from one of my favorite stories, A Christmas Carol. Every Christmas since I was old enough not to be too scared, my dad and I have watched the George C. Scott version of the movie (1984) on Christmas Eve. I owned the children’s illustrated version of the book, and have seen other versions, including a couple of good animations and one starring the Muppets. I don’t have a “grown-up” version of the novel, but it’s on my list. 🙂

Now, most of you probably remember who said that great quote: Tiny Tim, Bob Cratchit’s youngest, who happened to have a disability. Now, the portrayal of this character makes me cringe–he’s saintly, sickly, and basically written around the fact he uses a crutch. But in that era, that portrayal was pretty commonplace. And I’d like to suggest that Dickens, whose novels were often written to call attention to the plight of the poor and disadvantaged in his London, made a great point with Tiny Tim. You never know what wisdom, and what gifts, are hidden under the “disability wrapping paper.”

Furthermore, as I was recently reminded, a person with a disability, like me, never knows what’s hidden beneath the “temporarily able-bodied wrapping paper.” Our world, being the cold, bitter place it is (just look at Newtown, CT), has a tendency to draw all kinds of “us” and “them” lines. Sometimes that line is between rich and poor. Or white and black, or male and female. Or able-bodied, and disability. And as someone who stands on the, shall we say, “have not” side of that line, it’s easy for me to think, “Why would an able-bodied person ever show me grace on a consistent basis?”

But they do. Oh, they do.

I was reading a devotional the other night written by a woman who struggles with physical disabilities and uses a cane. She wrote about problems with her car, and how she had already been forced to make the trek to the DMV twice that week, to stand in the “inevitable long lines.” She had to psyche herself up for trip number three. I was expecting a devotional about how God enabled her to keep standing, or how she felt His love despite what some jerk did while she was in line. In my mind, the idea that anyone would be kind to this woman was laughable–like telling me there really is a Santa Claus.

Well, call me a female Scrooge. Because that’s not what happened. Instead, upon seeing this woman come in, the DMV clerk called her to the front of the line. And when she was directed to go stand in another line, a young man got her a chair with the explanation, “This might be easier for you.”

Okay. I didn’t need a visit from any spirit–except perhaps of the Holy variety–to get the point. Yes, there is grace in disability. And mercy, and kindness, and all the virtues of Christmas. The problem is, sometimes my low expectations, or just my pride (because I hate being constantly asked if I need help) get in the way of my receiving such grace. So I’m challenging myself, and others: if you have a disability, is there a way you can reach out to take grace offered today? And if you are a temporarily able-bodied person who has any length of an encounter with a person who has a disability, what is a way you can extend grace?

The grace and peace of the One who makes the lame walk and the blind see to all.

Give Me a Break: When to Cut People with Disabilities a Little Slack

Hello, readers,

I’m back for another post. Yes, it’s late. No, I’m not doing this because I think the world will end tomorrow (though if it did, this blog would probably be the last thing on my mind). I’ve simply been writing all day and needed a long break before delving into another project. In fact, that’s what tonight’s post is about: when it’s okay to give people with disabilities a break.

What do I mean by that? Well, maybe it would help if I explained where I got the idea for this post. I am a huge, unashamed fan of Hallmark films. Now, as a writer, I’ll admit, sometimes I think their plots are flimsy. But I watch them, and I own several of the ones I think are really good on DVD. Of course, ’tis the season for Hallmark to air bookoos of Christmas movies, all day. Well, the other day, I stumbled on one called A Dog Named Christmas. I had missed part of it, so later, I looked up the film on YouTube.

If you’re not familiar with the film, it’s based on a novel by Greg Kincaid. The plot concerns Todd, a twenty-year-old young man with an intellectual disability, living on a farm with his parents. One day before Christmas, Todd, who loves and is very good with animals, hears a radio spot about a local program in which volunteers can take home a dog from the local shelter for the holidays. Intrigued and eager, he begs his parents to do it. Of course, the dog they end up with–who is unnamed when Todd chooses him and brings him home–is christened Christmas, and the two bond. Todd’s mom loves having Christmas around, as do his visiting siblings and their families. Even Dad, who was skeptical at best because of two beloved dogs he lost–one as a young man and one as a soldier in Vietnam (the dog had become the platoon mascot of sorts)–learns to enjoy Christmas, too. It’s a great movie, and I don’t have “criticisms” of it in the classic sense. It did, however, inspire me to ask some questions about how we approach disability, and write about them.

My biggest question came from Todd’s parents’ reaction to him getting a dog for Christmas. Dad, especially, raised this question with his attitude. He makes Todd promise, before even thinking about saying yes, that he will agree to take the dog back to the shelter on December 26th without any complaint, out of an assumption that his tender-hearted son would have a breakdown otherwise. He also makes Todd promise to keep up with his farm chores, and Mom gets in on the act by insisting the naturally messy Todd get his room “really clean” first.

Now, in general, I have no problem with this. It is natural to, if you have children begging for a pet, exact some sort of reasonable agreement from them before getting one. But–you know where I’m going, don’t you? Todd’s chronological age was 20. He was a young man, as his mom–and he himself–said in the movie. A 20-year-old man should not have to “earn” a pet by doing work. Now, I understand the need to teach and reinforce responsibility, but I believe there are better ways to do it than dumbing down the age of your adult child due to an intellectual disability, and making him or her earn what any other person would probably just go out and get. Why? Because the unspoken other half of an agreement like that is, “If you don’t do what I say, you can’t have what you want, even if you need it or want it very much, and I don’t care if you are a ‘young adult.’ In my eyes, you are a perpetual child.”

Speaking of “perpetual child,” let’s examine the other half of Dad’s agreement with Todd: give up the dog on the 26th as the shelter wants, without complaint. (In other words, with total compliance). Now again, on some level, I totally understand this. No one wants to see anyone of any age make an emotional scene in public; it makes people uncomfortable. And if you have entered into a binding agreement with a place of business, like an animal shelter, you need to keep it, your own feelings aside. And because Todd did happen to be, as I said, an animal-lover and a tender-hearted individual, his dad had some reason for concern. But one, even if emotional displays are not “socially appropriate” (remember yesterday?) in cases like Todd’s, I believe compassionate people could make some sort of allowance if they needed to. Two, I take issue with the dad’s insistence on total compliance, partially because of my feelings about that word and my feelings about the expectation that people with disabilities never complain, and partially for a reason I’ll get to in a minute. Three, what on earth is wrong with a person with a disability’s desire to keep a pet (even one that belongs to a shelter, where the expectation was that you’d bond with and keep the animal after completing the Christmas program, anyway)? I guess the argument is, “They’re not responsible enough for pets,” but that brings up the idea–has the person with a disability in your life ever been given significant responsibilities? (In the case of Todd, for example, I don’t think that argument would stand up because he had proven responsibility when it came to farm chores, painting, and yes, cleaning that room).

Here’s the other reason I take issue with Todd’s father’s attitude, and why I’m questioning what is so bad about giving people with disabilities a “break.” Dad’s motives, as he explains them, were to teach Todd to react to the world like an adult. And as an adult myself, I can understand that. The world is full of disappointments, and as much as we want to, we can’t always have we want or give vent to emotions. If people without disabilities need to learn that, so do people with them. But the problem is that at times, as with physical things, people with disabilities, particularly ones like Todd’s, may need “modifications” to that. Let’s stay with Todd’s example. Yes, Dad was right to remind Todd that Christmas (the dog) had to go back to the shelter on the 26th because that was the understanding with the shelter. But when he saw his son bonding with Christmas, he became even more insistent, citing Todd’s need to be “an adult” about the whole thing. Well, number one, as we find out late in the film, Dad’s attitude has less to do with teaching Todd anything than it has to do with him–he was hurt when he lost his dogs and refuses to go through that again, vicariously, or let his son go through it. But number two: acting like an adult does not always mean giving up something or someone you love to “prove” you can without an emotional breakdown. And yes, Todd would have lost Christmas eventually, because dogs, like all living things, die. But I think it would be more “adult” for him to bond with Christmas–experience real friendship–and then, when it was time according to the Power that be, go through the grieving process in his own way and time. Setting up situations for a young adult with a disability to “prove” how adult they can be smacks of “behavior goals” and the grown-up version of IEPs.

So, what am I saying? In summary, I am saying that, like everyone else, people with disabilities need to be allowed to grow up, and need to be treated like adults. But that should not come at the expense of who they are, and allowing them to, in certain situations, go at their own pace into adulthood. Adulthood is not an IEP goal. It is a state of being that you enter at 18 (or 21, whatever you consider the legal age to be of the two), and you spend the rest of your life learning to live in it. In fact, many times, you may still act like a teenager or a kid. And you know something? That’s okay. That’s natural.

So, in the spirit of Christmas–which is, at its core, the spirit of empathy, mercy, and warmth–stop seeing people with disabilities as a list of neverending “adulthood goals” to check off. Give them a break.

Tolerate This: Let’s Get Real about Empathy for People with Disabilities

Hello, readers,

Yes, I’m back, for three days in a row. I must subconsciously be making up for my long November “winter’s nap.” Today’s topic? Not the empathy OF people with disabilities; we’ve covered that. And just for a refresher: empathy and disability are not, nor will they ever be, mutually exclusive. (Yes, some people with disabilities can be real jerks. But so can some black people, Hispanic people, Asian people, Jewish people, homosexual people…you get it, already). No, today’s topic is the empathy of the world without disabilities toward people who have them. And no, this is not a “temporarily able-bodied people are jerks” soapbox. Sorry to disappoint if you were hoping for one.

I got the idea for this post from a letter to Dear Prudence in Tuesday’s live chat. The letter writer was the mom of a first-grader named Penny. Apparently, Penny’s class has a tradition of going to “visit” the “special” class at her school once a week, before their snacktime. During this particular visit session, Penny mentioned to her teacher that she was hungry, and asked when the students would return to their classroom. She also told a six-year-old “special” student that he shouldn’t wipe his nose on his sleeve. For this, Penny was called “intolerant” and forced to apologize in front of the special education class and her own class. Her parents were called about this, also. Penny was humiliated.

I love Prudie’s advice to Penny’s mom, so I’ll sum it up here as my reaction to what actually happened. One, this little girl was hungry. That is a basic human feeling, and at age six, she’s not yet old enough to keep that to herself, nor should she have to. “Ms. Smith, I’m hungry” is a statement of fact, not “intolerance” toward another person or group. Penny obviously meant her question as, “When can I have a snack,” not, “How much longer do we have to be here.” Two, telling a same-age classmate not to wipe his nose on his sleeve is natural; it is, to quote Prudie, “something six-year-olds say.” And why shouldn’t they? They’re at the age where “good manners” get drilled into you pretty regularly, and they get taught, among other things, that you should wipe your nose on a hankie or a Kleenex. The other child’s disability had nothing to do with that observation.

And furthermore, what is the deal with this child being forced to apologize for being “intolerant”–a word she may not know the meaning of yet–to two classes? This teacher had no business doing what she did, and I say she owes an apology to Penny and her parents. In fact, as Prudence hinted, this teacher has failed miserably; if you’re going to teach first grade, you need an intellectual understanding, and a far more than basic empathy, for how first-graders act and react. What is that adult doing in that classroom?

But here’s where we get to the meat of the post. Because this letter was part of a live chat, readers were allowed to comment on Prudie’s advice and the letters she got. One reader responded to the “intolerance” letter this way (paraphrase): “I can’t believe this teacher’s idea of teaching empathy is to send students to gawk at special ed kids as if they were zoo animals.” And I thought, how true is that? You don’t get anymore honest. And I agree: what is with that? That doesn’t teach empathy–that just drives home the idea that there’s a line between “us” and “them,” and that kids with disabilities are strange and abnormal. At best, it teaches pity: “Poor little Johnny–I’m glad that’s not me.”

So, the question becomes: how does one teach and show empathy for people with disabilities? I can tell you, the public school system–and society at large–can do a lot better than it’s doing. In response to this question, I found a few gems.

Back in 2002, Jason van Steenburgh wrote an enlightening article about a program introduced by Alicia Connill, founder of the Connill Institute for Chronic Illness. The basic idea of the program is for physicians to truly experience what it is like to have disabilities, while paired with a volunteer who acts as their “caregiver,” thus giving a realistic portrayal of the “daily frustrations” of having a disability. For example, van Steenburgh opens his article with, “Imagine being strapped in a wheelchair…your legs slathered with BenGay…you can’t see much because you’re wearing dark wraparound glasses, and you have to navigate around a trash can thoughtlessly placed on the ramp you need to use.” That person has just experienced the disabilities that can come with late-stage diabetes.

Of course, the accusation that can come with a program like Connill’s is “That’s torture.” Well, having a disability can be torture, pal. And as Alicia Connill herself explained to van Steenburgh, “We’re not looking to torture anyone…we don’t want to tell people ‘imagine you’re in pain.’ We want a little discomfort to creep in to make the experience more realistic.” The other goal is to teach potential caregivers and physicians to interact with people who have disabilities using true empathy, and how to turn what they’ve learned from the program into real action, because “a good attitude is not enough.” You bet it’s not. I know plenty of temporarily able-bodied people with great attitudes who still don’t “get it.”

Van Steenburgh gives several tips on how to empathize with people who have disabilities in his article, but they’re not new. In fact, many are very basic. I’ll list some now and add in some, based on my own experience and that of others.

  • Talk to a person in a wheelchair at his or her eye level. Just as a person who can walk doesn’t like someone towering over them, people who use wheelchairs don’t like it, either. I think this is particularly true because in my opinion, towering over that person can subconsciously perpetuate the idea, “I have the power here, not you.”
  • Don’t lean on or over a person’s wheelchair. That’s the equivalent of hanging on a person.
  • Oh, this is a biggie: Talk to the PERSON, not their caregiver. If there was ever anything that says, “I think you’re incompetent,” it’s talking to the parent, the relative, or anybody but the person with a disability, as if that person is not there. Granted, this may take practice, especially if you’re not sure what cognitive level that person functions at. But still, talk directly to the person. And, for heaven’s sake, if you are someone who needs information from a person with a disability, like a doctor, ASK FIRST before giving the caregiver a ton of information you didn’t give the person to begin with. (Note: there is somewhat of an exception if the person with a disability is a kid, because the doctor needs the parent or guardian’s consent, not that of the kid. But that kid should still know and understand everything you’re doing or planning, as much as is feasible).
  • When talking to a person who is Deaf, don’t turn away or put your hand over your mouth. They may be trying to read your lips.
  • To go along with that: ask how the person who’s Deaf prefers to communicate. Just because you’re Deaf does not automatically mean you use ASL.
  • “Deaf etiquette” will advise that you signal when you are going to leave a room. This is important because the person may not realize you’ve left and wonder where you’ve gone.
  • There’s a similar bit of etiquette for people who are blind; it’s considered common courtesy to say “hello” or “goodbye” when entering or leaving, or something that indicates your whereabouts.
  • This is out of my own experience as a person with a physical disability, and also directed toward others with physical disabilities: for pity’s sake, do NOT make disability a bigger deal than it has to be because of physical layout. In other words, if you’re a professional like a business owner, make sure your place of business is accessible! This goes for doctors and other professionals, too. Now, I realize this can be difficult for individual homes if your family doesn’t have a person with a disability in it. But there are things you can still do. For example, if you have a huge piece of furniture in the middle of a room your guest will be frequenting, and you know they’ll have trouble navigating it, then move the furniture. If your stairs don’t have railings, offer an arm or other assistance. If your doors are too narrow for a wheelchair, find an entrance your guest can use–or agree to meet at an accessible location. You get the idea.
  • Please, please, PLEASE: Don’t offer help unless you’re asked for it! Trust a person who knows–it’s not always insulting in the classic sense, but there are few things quite as annoying (though most of us try to keep that to ourselves). I recognize most of these faux pas are well-meant, but some are just plain rude. For example, going up to a person who’s blind in a crosswalk, grabbing his or her arm, and pulling him or her into the street.
  • Respond only to the disability you see. In other words, just because a person has Down’s Syndrome YOU…DON’T…HAVE…TO…TALK…LIKE…THIS or limit yourself to monosyllables. (Note: if you can’t see the disability, but know or think there is one, see below).
  • If you know, or think, a person has a disability, but you can’t see it, tactfully ask about it. Good openers are, “May I help you?” or, “May I ask you a question about that?” Most of us, myself included, are happy to answer your questions, unless:
  • Recognize what constitutes a rude question. There are exceptions to this–for example, a little kid is gonna say what pops into his or her head, and most of us understand this. And if you can’t see the disability, or it’s a mild form, you may have a question we think is silly, but that we’ll go ahead and answer. For example, I once had a friend ask, in all earnestness, if I could color, because she knew my hands aren’t great at fine-motor stuff. Sure, the question was silly, but there was no way for her to know. (And yes, I can color; I used to be quite good). In contrast, a rude question falls along these lines:

-You see a person with a mild disability, who can walk, talk, and interact just fine, and you pop off with, “Can you feed yourself?”

-You ask a person with an intellectual disability a question like, “Learn how to tie your own shoes yet?” or assume their greatest love in life is Barney the dinosaur.

-You dumb down your speech (see above)

-You make purposely exaggerated lip movements in front of someone who is Deaf or talk with your mouth full

-You ask someone with autism (or worse, their caregiver) “Does she like, do anything weird?”

I can bet you guys have heard all kinds of other rude questions, and I’ll give an invitation right now: the comment floor is open to share your favorites (or least favorites, depending on how you look at it).

So, let’s get back to teaching empathy, especially to children. A lot of it is probably going to come from teaching what I’ve outlined, on an age-appropriate level. But it’s also going to come from the teachers and other adults themselves. In other words, how you interact around people with disabilities, is how your kids will react. You act like they’re abnormal or incompetent, or act smarmy and nicey-nice? So will your kids. You make a big deal out of it, like Penny’s teacher did–as if kids with disabilities are zoo animals? Those kids will learn disabilities are bad and undesirable.

Also, a word about “tolerance.” “Tolerance” won’t cut it, folks. Showing a first-grader a puppet in a wheelchair does not cut it. Reading books with moralistic plots doesn’t, either. Children need the opportunity to interact naturally with kids who have disabilities, to learn about them and become their real friends. I mean, how would you like it if your child’s only exposure to black skin, or Jewish heritage, was a puppet, a video, or some other simulation? You’d be a little upset, right? So why aren’t we questioning how disability is presented? We’re not–we’re just teaching the next generation to “tolerate” it. As in, do what we ourselves have done–grit our teeth and put up with it, and mumble and grumble behind people’s backs. Never mind that the same people we complain about are capable, smart, downright cool people.

And I for one don’t intend to tolerate it anymore.

Taking off the Mask: Disability and the Truth of “Social Appropriateness”

Hello, readers,

I hope last night’s post comforted, or at least spoke to, someone. I’m going to get back to my regular plans for posting now, but this next post kind of goes along with the previous one.

We’ve already covered that doing things like shooting 26 innocent people–or killing or hurting anyone–is always wrong and inappropriate, and in cases like the Newtown shooting, disability of any kind is largely off the table. (I know there are probably cases where it would be taken into account, but let’s keep this somewhat general). And as we’ve discussed before on this blog, if a child with a disability does something wrong, purely because it’s wrong (not, for example, to try to be heard because he or she hasn’t been taught another form of communication), then consequences need to be considered and used. But having said all that…

I have to wonder if society in general has put too much pressure on people with disabilities to be “socially appropriate.” What I mean is this. From the time they enter school–and often earlier–children with disabilities, especially ones like autism, intellectual disabilities, and even physical disabilities that may have a cognitive component, are told that certain actions are not “socially appropriate.” Their IEPs, IFSPs, and what have you, spend countless lines talking about what these kids do that is “inappropriate.” And because of some ridiculous policies, such as kids not aging out of the “special education” system until age 22, and then being “assured of placement” in sheltered environments of all sorts, they spend a good chunk of their lives trying to unlearn what is inappropriate, often through techniques like ABA (Applied Behavior Analysis). In other words, the learner is “reinforced” for “good” behavior, no matter his or her chronological age or actual level of understanding. As in, “Good girl for using your indoor voice; here’s some candy.” Now, yes, ABA is research-based and may be helpful; we’re not getting into that right now. My point is, used the wrong way, it can be extremely simplistic and demeaning. And my other point is, I’m starting to question whether this emphasis on what is “appropriate” is always necessary.

Now, as we have covered, what’s “appropriate” can change from setting to setting. For example, it is never appropriate for anybody, disability or not, to yell in a library, or throw food in a restaurant, or make rude comments to someone. And yes, just like everyone else, people with disabilities can and should be taught these things. But my question is, does the teaching have to come in the form of “behavior goals” and “plans” written by experts who may or may not understand the whole person, or why they do or say what they do? Or, can we teach “appropriateness” naturally, as early as possible, as we would do for people without disabilities? That’s a question I don’t think we’re spending enough time trying to answer.

And let’s talk about a few things that we call “socially inappropriate,” that may in fact not be. For example, let’s take the person with autism who stims during class. Yes, if that stimming includes yelling or banging, that person may need natural reminders to stim in a different way–as is appropriate for the setting. But think about it. If, say, a student with autism’s way of stimming is repeatedly clicking a pen in class, is that so inappropriate or disruptive? I would be inclined to say no; that’s one of those things the teacher, the administration–for heaven’s sake, the IEP team–needs to let go. After all, the kid who clicks that pen has to deal with other people’s versions of “stimming” all the time: chattering, doodling, throwing spitballs, you name it. And as we have discussed, because those things can cause sensory overload, clicking that pen may be the way that kid controls his or her other responses so he or she can–gasp!–pay attention in class and do what is APPROPRIATE.

Or, let’s take the person with an intellectual disability who asks what we might think of as an “inappropriate” question in public. For example, say we have someone whose cognitive ability currently stands at about age 6, even though his or her chronological age is 12 (and that person should, as we know, be treated first like a twelve-year-old). This young man or young lady asks something like, “What is that on your face?” referring to someone else’s birthmark or tattoo. He or she makes an observation like, “Your car smells bad” or tries to touch a woman’s jewelry because it’s pretty.

Now, again, for the setting, that person may need a natural reminder not to do that (contrast with some inane statement like, “Now, Joey, what are our behavior goals?” (And what is with people using plural pronouns when talking to people with disabilities? They’re not “our” goals; they’re the goals someone else foisted on us). But think about it. That person may be curious about birthmarks–and you probably were, too, but you didn’t say anything. That other person’s car may smell horrible. And in observing these things, and asking about them, the person with a disability has actually done something most of us, socially, won’t dare to do. He or she is actually participating in a more honest, open existence.

And you don’t have to have a disability that affects you socially, to experience this kind of thing. For example, I’m American, but I swear part of me must be British, because I indulge in mannerisms that are considered “typically” British, such as sometimes being overly formal or polite, or apologizing constantly. Why is this? Part of it is my personality, but part of it comes from an anxiousness to be “socially appropriate,” because there are people out there who immediately equate cerebral palsy with intellectual deficits, and an inability to do this. One of my best friends has fondly called me a “Jane Austen throwback,” and I accept the moniker because I’m a huge Jane fan. But…

Sometimes I wonder–are we so hung up on “appropriate,” especially where people with disabilities are concerned, that we’ve forgotten how to be tactful, yet honest? Is this the reason why people write to advice columns (like my personal favorite, Dear Prudence) to ask an expert how to handle their relative whose hoarding is endangering him or her? Their friend who seems to have no concept of hygiene and doesn’t seem to care, although they could be taking better care of themselves? Their vitriolic in-law who says horrible things to them, their spouses, and their kids? Are we so hung up on “appropriate” that we’ve forgotten how to say “NO?” Or so hung up that we can’t say, “Hey, this is how my child learns. If you can accommodate all your ‘typical’ students, you can make the effort to accommodate my kid?” Or, “I think my loved one and I know what she wants and needs, and it’s not ‘special services’ or a sheltered environment?” I think we need to be saying things like this more often, folks, and working to redefine what “social appropriateness” is. And although I don’t advocate rudeness–this is a modern-day Jane Austen you’re talking to–I realize that sometimes, that means ripping off the fake smile and appropriate mask, looking somebody in the eye, and telling it like it is. And sometimes, that includes, in many forms, the phrase, “Go jump in a lake.”

Halloween’s long over, people. How about we rethink some of those masks today?

Jiminy Crickets!: Disability, Conscience, and Misconceptions of Each

Hello, readers,

This wasn’t the post I planned to write next. But the tragic shooting in Newtown, CT has changed everyone’s perspective, and has hopefully changed some of the things we originally wanted or needed to say. As someone put it, other things can wait for awhile.

First of all, before we get to anything else in this post, let me say that my heart breaks for the victims and their families. I don’t understand how or why anyone could do this to children, particularly children so young. I mean, the majority of those children were kindergartners–the youngest and arguably most innocent of the elementary age group. They left their homes excited because Christmas was coming. Their biggest worry was probably whether Santa Claus got their letters. And now, they’re not coming home. I am comforted by my belief that those same kids are with Jesus Christ today in Heaven, and I know He “will take care of Mom and Dad,” as the author of a beautiful poem in memory of the children put it. But I still wish I could hold those families until my arms fall off. I hate the fact that their joyous holidays have literally had a hole shot through them. And I pray for physical, emotional, mental, and spiritual healing for all involved.

Secondly, there have been some rumors floating around that the shooter, Adam Lanza, had autism or some other form of a disability, such as Asperger’s (which is still on the autism spectrum, but I tend to think of it as separate from other forms of autism). Let me say up front that one, no one knows this is true. Two, if it is, that’s not the point; the point is that twenty-six people are dead, and their families devastated. And three, autism or not, disability of any other kind or not, Adam Lanza, were he alive today, would need to face consequences for what he did. There is absolutely no excuse for what happened last Friday, and as we have discussed before on this blog, disability does not preclude discipline or consequences for wrong behavior. Yes, what is “wrong” in the context of disability can change; for example, it may be “wrong” for a child to throw things, but if that’s how the child is communicating, then we have a bigger issue and need to handle that. But in a case like this, disability is largely off the table.

Thirdly, I think now is a good time to examine a myth about disability that disturbs me more than perhaps any other, and it is, “People with disabilities don’t know right from wrong.” Yes, that myth exists, particularly for people whose disabilities are intellectual, on the autism spectrum, or said to affect their minds in any capacity. For example, a person with Down’s Syndrome who picks a flower out of a neighbor’s garden gets labeled a vandal or a thief. A person with autism who cannot read social cues is said to have no empathy whatsoever and accused of being unable to feel pain. People blithely call autism and other disabilities like it “mental illness,” either unaware of, or not caring about, the fact that disability and mental illness are two entirely different things. (That last comment actually came from someone in my local nail salon). Frankly, this kind of talk makes my blood boil, because it is untrue, and because it perpetuates the idea that people with disabilities, for one reason or another, do not “belong” in society or are dangers to themselves and others.

So, now that we’ve examined the myth, let’s talk about the truth. The truth is that for the most part, people with disabilities DO know right from wrong. Their concept may be rudimentary (for example, someone whose cognitive abilities are childlike may not yet understand some intricate ins and outs–often because nobody told them). But for most people with disabilities–most people, period–a concept is there, and it does get exercised. For example, that person with Down’s Syndrome may not know that “it’s okay to pick flowers in public, but not out of the neighbor’s garden.” But he or she probably understands it’s not okay to consciously take things that don’t belong to you.

And let’s go back to that person with autism who allegedly cannot express empathy, therefore allegedly cannot feel pain or understand it’s wrong to shoot people. (?????!!!!) Emily Willingham wrote a wonderful article about this, stating that whatever motivated the Newtown shooting, it wasn’t Asperger’s Syndrome. She draws a good distinction between the types of empathy people with autism are confronted with every day–cognitive empathy vs. emotional empathy. According to Willingham, “cognitive empathy” basically boils down to the ability to recognize subtle emotional changes in others through social cues and body language, among other cues. And yes, people with autism may not recognize those–even among other people with autism. The idea is that, because these cues are often very subtle, they’re tough to pick up on or misread. And I’d venture to say that people with autism aren’t the only ones who can’t always read those subtle cues. We often just don’t admit it because, horror of horrors, that would make us look “disabled.”

The other type of empathy Willingham talks about is emotional empathy, and people with autism often have no trouble expressing that. It’s based on the ability to read emotions (NOT tiny cues) and respond to them. For example, Willingham writes that her own eleven-year-old, who has been diagnosed with Asperger’s, responded to news of the shooting by turning away in his chair and drawing in on himself for several minutes. When he turned back to her, he was crying–and this boy, like many other boys, rarely cries. He also said to her that they needed to go and get his first-grade little brother from school, but, “Let’s not tell him what happened…it would make him anxious and scared.”

And yet, people continue to perpetuate the crock that people with autism are emotionless, just one meltdown away from becoming the next psychopath with a gun or a knife or, for crying in a bucket, a letter opener. Excuse me while I decide whether to laugh hysterically at the world’s stupidity, or vomit.

Now, let’s talk about the idea that disabilities are another form of mental illness. The easiest and simplest way to answer this myth is, WRONG! Autism in particular is not a mental illness. It is, on the most basic level, a sensory integration disorder that may manifest itself as social, emotional, or physical weaknesses. Once again, it does not mean the person with autism will one day “snap” and go on a rampage. Even disabilities that we tag as “mental disabilities,” such as cognitive impairment, Down’s, Fragile X, or others of their ilk, have been misnamed. The correct–not politically correct, simply correct–term for this type of disability is “intellectual disability.” These disabilities impair one’s cognitive functions and, to a degree, one’s understanding of certain concepts (though that, as we have discussed, is dependent on how much people choose to share with individuals who have these disabilities, out of an understanding of what they can truly process). An intellectual disability does not, and never will, automatically mean that person has a predilection for criminal behavior, and it’s time we stopped saying it does.

So, now that we know what and who ISN’T mentally ill, I want to add a note about what mental illness actually is, and who perpetuates it. Rosslyn Elliot, an author I read and whose books I thoroughly enjoy, summed this up nicely with her response to the now-viral “I am Adam Lanza’s Mother” article. According to her, she’s seen a lot of mental illness in her time and knows what it is, and what it’s not. She uses two “axises” when defining mental illness. Axis One is the type of mental illness most of us are familiar with, such as depression, bipolar disorder, schizophrenia largely controlled with medication and therpy, etc. People who have these conditions are not a danger to themselves or others, and according to Rosslyn Elliot, they are being “used” by people like the “Mother” author, who, now that I think on it, does tend to lump mental illness under a big “umbrella” (kind of like some people lump all disabilities into one group).

The other people with mental illness are on what Elliot refers to as Axis Two. These are people with full-blown psychosis, who are a danger to themselves and others even on psychotrophic or other drugs. It has been shown–as much as a flawed medical community can show it–that these people cannot feel pain, “think they are wonderful as they are” even if their choices are horrible, and other hallmarks. These are people who, according to Elliot, often–though not always–have not been raised with values, which only exacerbates the illness.

But whether or not a person with mental illness is on Axis One or Axis Two (we won’t argue about whether Axis Two can be treated, what the solutions are for that depth of mental illness, and so forth, because I don’t have the energy or the time right now), the fact remains that the family can either make the situation better and easier for themselves, or make it worse. And unfortunately, there are some families, like Liza Long, who wrote the “Mother” article, who choose to make things worse. Now, when I first read her article, I expressed deep sympathy for her and her son–which I still feel. But a responder to the article, a Hanna Rosin, has also actually read a blog written by this mother. Allegedly, this mother has not only done what she described in the article, but also had breakdowns on the blog, saying it is “crazy,” for example, for her 13-year-old, allegedly mentally ill son, to shoot rubber bands at his little brother, or for–get this–a five-year-old to cry because he dropped his lollipop. Now, I don’t know 100% if this is true. But if it is–that’s what’s crazy, Ms. Long. You yourself could probably use mental help. And to constantly threaten to institutionalize your son, and place him on a par with mass shooters because he called you a “stupid b—,” is probably not helping the situation. Do I feel sympathy for you and your situation? Yes, and I will be checking it out further. But I am simply saying, the families of people with mental illness have a ton to do with how their futures turn out. And they–as well as the rest of society–need to be vigilant about that.

As for people with disabilities like autism, who get tagged unfairly as “likely” to commit crimes like mass shootings?

That line of thinking is a little crazy, if I do say so myself.

May the children, teachers and staff who lost their lives last Friday rest in peace. God bless and keep you all.

My Name is Not “Disability”: Let’s Craft Some New Introductions!

Hello, readers,

So, my entire house is a plague house at the moment; we all have coughs, colds, low blood pressure, chills, you name it. We’re slowly mending, but this is the first day I’ve felt like writing again. And thanks to Disability Equality Maven Extraordinaire, Kathie Snow, I have a new topic. Well, it’s technically a new angle on an old topic, but it struck me as worth writing about.

Kathie’s latest Disability is Natural newsletter exhorts readers to “start with strengths” when talking about people with disabilities in their lives. She gives us the sobering thought that, when asked to name three wonderful things about a person with a disability, most people can’t do it. Of course, my visceral reaction was, “Sure they can.” But you see, that’s because I was blessed with a family who did tout my strengths even as they were being pushed to discuss my weaknesses and “problems.” Some people aren’t that lucky. Some people have families that, loving though they are, haven’t been given the opportunity to think about their loved one’s strengths, or, even worse, have been conditioned to think those strengths do not exist. Or even worse than THAT, some people circulating in and out of the lives of people with disabilities have been conditioned to think that a strength, for a person with a disability, is the same thing as doing something everybody else takes for granted.

What I mean by this is, of course people with disabilities want to be treated like everyone else, and they deserve that. Of course, we can celebrate when a child whom it was predicted would “never” do something like walk or talk, does it. (For instance, as you know, my parents were told with confidence that I wasn’t ever going to walk). But what if that becomes the only strength the person with a disability is aware of? As in: what would happen if someone asked, “What can you do well?” and, after thinking about it, you could only come up with, “Well…I can walk and talk.”

Kind of anti-climactic, huh? And yet, that’s the position doctors, therapists, teachers, and others put people with disabilities in all the time (whether they mean to or not, and irrelevant of the fact that they often truly love and care for that person). It kind of loops back into the disability hierarchy paradigm–I’d venture to say a lot of parents of children with disabilities sometimes fall prey to thoughts like, “Well, at least my kid can walk, talk, and eat better than your kid!” But walking, talking, eating, dressing, going to the bathroom, washing oneself…those are not strengths. Those are skills, and they are the skills that we spend so much time trying to teach people with disabilities, we forget about, or completely ignore, what they enjoy, are good at, or WOULD RATHER BE DOING.

Think about this with me, all right? If, at age ten, you had said to me, “Would you rather go to the bookstore or go to therapy?” I’d have picked the bookstore every time. If you had said, “Would you rather practice hitting a ball off a cone, or spend time with a creative writing teacher, writing a story?” what do you think I’d have picked? (By the way, that’s an opportunity I never got; I was forced to go to PE and never asked about it). Once, in junior high, as part of “exploratory,” I went to a class billed as a cooking class with my peers. I wanted to really learn to cook. I had wanted to learn for awhile. Guess what I got to do? Throw stuff in the garbage when the other girls were done using it.

I hear some of you: “What my child with a disability ‘wants’ is irrelevant. It’s more important that he goes to therapy and learns skills.” Okay–I hear you. And I have never said therapy is 100% bad. And yes, no child can always have what he or she wants. But let me give you some tough love: if you don’t know your loved one’s strengths, aren’t asking about them, and aren’t responding to them, you are stifling your loved one and painting them into the disability box. And let me be the first to say, that box has bars and locks.

So, what should we be doing instead? Well, aside from the obvious, which is searching for our loved one’s strengths and interests, we need to make them a priority. What does that look like? Well, here are a few ways to tell.

Let’s say you have a child with a severe disability. Maybe that child cannot (yet) play sports, or go to ballet class, or does not appear to have conventional “interests” like other kids. But say he or she loves the bathtub. That’s a clue–that kid loves water! Get him or her involved in some kind of natural (not disabled-only) water-based activity, like swimming, water aerobics, something. Even if he or she does nothing but splash, you’re serving the strength.

Or, say you have a child (or other loved one, actually) who doesn’t appear to respond to anything. But when you turn on a certain type of music, you get a smile, or a gesture, or a laugh, or some clue that they love music. So, you break out the CDs, the iPod, whatever you’ve got. You look up musical activities in your neighborhood. You serve the strength.

Also, don’t forget: give your loved one a chance to communicate to you what his or her strengths are. I was lucky–I was verbal. My parents didn’t have to struggle to figure out that my great love in life was and is books. But just because your loved one doesn’t say it with his or her mouth, it doesn’t mean strengths aren’t there.

Second: brag on those strengths, folks! Brag on how happy your loved one is while doing what they consider fun and EASY. Brag on what they can do that they are IN CONTROL of. (I capitalized these because for the person with a disability, so much can be either difficult or out of their control). Praise your loved one to others–and do it in front of them, too. Do it BEFORE you ever mention the disability, if you must mention the disability at all. Yes, even and especially at assessments, IEP meetings, therapy appointments, and all those places where the focus is “supposed to be” on problems and weaknesses. And if the therapist, IEP team, or whoever, isn’t listening? Keep talking. As in, “Maybe you didn’t hear me. I was saying that Juliet is excellent at singing.” And please, PLEASE, don’t turn a strength into a way to “fix” the disability, as in, “Flannery is so good at soccer. It really helps strengthen those leg muscles!”

And finally–I cannot stress this enough. You’ve GOT to teach your kid–or other loved one–to operate on a paradigm that says, “My strengths come first.” I’ll be up-front–this was and still is really hard for me. As a Christian, I was always taught that it’s not good to brag; that’s pride. And let’s face it, growing up, I was given the subliminal message that I didn’t have a whole lot to brag about. IEP teams, therapists, and others were focused only on “practicing” and “improving” and “goals” (which reminds me, why don’t we ever make goals related to strengths?) Even my parents, Lord bless them, had moments when they inadvertently put my disability first. It got to the point that I actually said, “I feel like you expect me to walk up to people, introduce myself, and immediately say ‘I have a disability.'” For fear that otherwise, people might think I could do something I really needed help with. Oh, the HORROR.

People with disabilities, do you ever feel that way? As if you should just wear a name tag that says, Hi, my name is…DISABILITY? Or like you should walk up to others and say, “Hi, my name is Jessie, and I have…”? Let me tell you, nobody should feel like that. Rather, the world should not operate in such a way that we’re made to feel like that.

Let’s throw out the old name tags. Let’s instead learn to say, “Hi, my name is…” “And you know what? I’m a caring, smart, capable person who’s also really good at…”

People with disabilities deserve some real bragging rights–and not just because they can walk and talk.

Happy Anniversary!

Hi, readers,

Recognze this date? Well, I do–today is the first anniversary of the IndpendenceChick blog. I’ve been writing for a whole year! Now, I haven’t picked my next topic yet, so this post won’t be long. But first, I’d like to thank those who have read any portion of this blog, even one post. I thank those of you who have commented, reblogged me, or given me a “pingback.” Keep it up–we’ve got to keep the message going.

And what is that message? Well, naturally, that people with disabilities are people, and that disability is just as normal, natural, and beautiful as skin colors, religions, sizes, nationalities, languages, and all those other things that make us “different.” But a year ago, I didn’t know that–at least, not as well as I could and should have. So today, in no particular order, I’d like to share with you the top ten things I’ve learned about disability, people with disabilities, and especially advocacy.

1. I’m not a perfect advocate. But it’s what is in my heart to do, and if I give up, maybe others will, too. But if I keep talking, so will others.

2. Disabilities come in all kinds of packages, even the ones I used to mistake for just plain bad decisions (i.e., obesity; I now know better, thanks to a great lady who told me about her grandson with Prader-Willi Syndrome).

3. What you CAN do will always matter more than what you CAN’T, and saying you can’t do something yet is okay.

4. Group homes, respite care, nursing homes, and their counterparts are options. They are not the only options in existence.

5. “Special” is a pretty version of “segregation.” This word deserves to be used in its original context–to mean good things.

6. Humans are not the ultimate authority on disability. That honor goes to God.

7. Even if a person with a disability doesn’t speak with his or her mouth, we need to listen–even harder than usual.

8. The answers are not “no,” “never,” “can’t,” and “unrealistic.” The answer is, “Let’s look at this another way.”

9. People with disabilities neither need nor deserve stereotypes and labels, whether those are outright negative or positive, but unintentionally hurtful.

10. There’s more to learn every day.

How about you guys? Want to weigh in on your favorite or least favorite posts (please be polite on the last one) or something you’ve learned? Lines are open…

What Not to Wear: Disability Edition: People with Disabilities and the World of REAL Fashion

Hi, readers,

My graduate school classwork is finished! (Cue Hallelujah Chorus). Now I’m home for Christmas, preparing for a student teaching post, and praying for my family to get better (they’re all sick at the moment, but thankfully, not with the flu. Thank goodness for vaccines). And I’m back on the blogosphere. Today’s topic: people with disabilities and fashion.

It has come to my attention that, like many things, such as mainstream classrooms, intelligence, creativity, ambulatory ability, ability to drive, etc., some people think fashion and disability are mutually exclusive. In other words, they think that if you have a disability, you must dress like a frump or a slouch. And what’s even worse is that some people make it that way. What I mean is, some people with disabilities can’t dress themselves (yet, or haven’t been given the opportunity to try) or need help getting dressed. And depending on who helps them do that, they can be taken advantage of in that area, by being put in clothes that are not stylish, not colorful, or not even individualistic (in other words, they express nothing but “disability.”) For example, Arthur Fleischmann (see last post) wrote about seeing some children with disabilities made to wear bandanas so they wouldn’t drool on anything else, or made to wear drab clothing because the group home aides, home workers, or whoever, just didn’t seem to care what these people looked like. And remember that passage where Arthur found his daughter reeking of toilet accidents, in the same clothes she’d worn for two days? I shudder to think of other places and cases where stuff like this happens–and if you ask me, one is one too many.

Now, I am not one of those people who believe clothes make the man or woman. I’m not “stylish” if what you mean by that is the low-cut, skin-tight stuff I’ve seen some women my age wearing. And I’m not “stylish” in terms of being able to wear anything and everything I want. For example, I adore broomstick skirts, but I don’t wear them, because–let’s be frank–normal weight though I am, they make my butt look big! But I do express preferences when it comes to clothes, and I dress in things that make me feel good. Some people might think plaid and argyle makes you look like a geek. Guess what? I love the stuff. I own about two skirts, which I rarely wear. But pants are often more comfortable.

Throughout life, I’ve also been fortunate enough to have parents and therapists who made sure I could dress well, despite disability. When it became apparent I couldn’t tie shoes, my mom invested in hot pink laces that you simply threaded through the shoe once, and then pulled tight after you slipped into said shoes. And we invested in a lot of slip-on shoes (Sketchers has a bunch, including some beautiful ballet flats). When I couldn’t wear certain jeans, pants, or coats because of tiny buttons, we found a seamstress who made Velcro loops to push the buttons through–and bigger buttons. And some clothing pitfalls, I just learned to cope with or get around (I used to mark my shoes so I knew which was a right or a left, and I still check the tags on turtlenecks or solid shirts to make sure they’re not backward).

So, knowing all that, I have to ask myself: why are so many people with disabilities consigned to “special” clothes, just like “special” everything else? Why are the purposes of any accessories they own things like “so you don’t drool” or “in case you pee or poop?” (Yes, there is “incontinence clothing.”) Now, I understand that those things could be helpful. And I understand that some people can’t afford to special-order stuff from catalogues, or whatever else you have to do. What I’m really saying is, why can’t we make these things possible? Why do we assume that people with disabilities care nothing about what they look like? (This includes basic hygiene and hairstyles). And why are people with disabilities made to wear “disability clothing,” with no say in it?

I’d like to see what Stacy London and Clinton Kelly have to say about this. But in their absence, here’s a better idea: People with disabilities, like everyone else, are made in God’s image. Now of course, they, like the rest of us, shouldn’t get obsessed with clothes because the lilies of the field are not arrayed as well as we are. But I say, why can’t we start consistently arraying people with disabilities, with honor and splendor?