Monthly Archives: August 2012

Rose-Colored Glass: What to Do (and Not Do) When Disability Defers a Dream

Hello, readers,

I’ll be honest. Today’s topic is not one I want to write about. I’m an idealist, and I’ve got the Meyers-Briggs type to prove it (INFJ, Counselor). I’d prefer to believe that people with disabilities truly can do any thing those without them can–and I separated “anything” because here, I meant “any single thing.” I’d like to live in a world where a child with an IQ of 35 (confirmed, not just projected by some “expert”) can become Harvard’s valedictorian. I’d like to live inย a world where the kid with deaf-blindness can skydive, where the kid using the wheelchair can run a four-minute mile, and where trauma can be completely erased from the brains of those with PTSD. And because of science, medicine, and faith, maybe one day, that world will exist.

The truth, though, is that right now, it doesn’t. Some people’s rose-colored glasses end up shattered on life’s sidewalk. And–this breaks my heart–some of those people are people with disabilities. In fact, as we have covered, they’re more vulnerable than most people to that, because many of them are given no, or low, expectations from day one. Many of them are ridiculed for their dreams or told to pick something more “realistic” (and then treated as if the minimum that society can give them should be good enough). But that’s not the scenario we’re talking about today. We’re talking about the scenario that happens when, despite every modification, every best effort, every prayer, a dream truly isn’t working for a person with a disability.

Notice I didn’t say “not realistic.” Why? Because frankly, I hate that word. I don’t even think it applies to dreams of any person, of any kind–because dreams themselves always start out as higher than we think we can reach. Think about it. Was it “realistic” for Beethoven to be a composer? For Helen Keller to go to college? For Daniel Wallace to perform open-heart surgery, Bessie Coleman to fly planes, or Winston Churchill to be a politician? In their worlds, no way. But it happened, and stories like theirs continue to happen every day. Yet, sometimes, the dream just doesn’t work. What do I mean? Let’s look at an example, maybe two.

As an armchair shrink, I sometimes read Psychology Today. My school library keeps back issues, and after a long summer, I came back there one day this week to catch up on that and a couple other magazines. In May’s issue, I found author Augusten Burroughs in the Two-Minute Memoir section, with an article entitled “How to Ditch a Dream.” Morbidly curious, I investigated, mostly because I’m as-yet unpublished outside the blogosphere (not for lack of trying). I was half-afraid the article would advise ditching that dream (not that I was inclined to listen, so why I worried, I have no idea. Must be the neurotic side of my INFJ personality coming out to play).

One of Burroughs’ anecdotes caught my attention. He wrote of his relationship with a guy who called “The Italian Who Still Basically Lived at Home” (because his mama did his laundry, apparently). It was explained that Mr. IWSBLAH had a younger sister. She was described as “warm, genuine, with lots of kinky red hair.” It was said her family believed she was “the next Meryl Streep, in their midst, hogging the bathroom.”

You’re waiting for that other shoe, aren’t you? Okay…(shoe thuds).

The younger sister was also “mentally disabled by some degree of retardation” (Burroughs’ words, not mine. I don’t like the word “retardation” or its derivatives; more on that in a future post). Burroughs described her as “anxious to operate a fork” for fear of spilling or dropping food.

Now, at first, I cheered for this girl and her family. How wonderful, I thought–how stinking wonderful–that they could see past the disability and see a warm, funny future actress (who was convinced that “Mirror Street will not get to have [an Oscar] because I get to.” (Mirror Street = Meryl Streep). And I cheered at Augusten Burroughs’ assertion that “If I had such a child who was afraid to use her fork for fear of dropping it, I’d be the bad parent who says, ‘Screw forks!'” Yeah, why not? Every food in the world began as a finger food–so why don’t we, at least once in our lives, just screw the stupid forks and, as Burroughs put it, “eat like cave people?”

And this girl’s family was right to acknowledge, “That girl is no small dreamer,” as her mom put it. But the problem was, when she finally started going to auditions, she would “get confused.” Now, I don’t know what kinds of modifications were made, or if anyone were even willing to make them, if they would have been reasonable (and if directors refused to make reasonable accommodations, then shame on them!) But I can only assume the modifications would not have been reasonable. I can also assume, because the family described their daughter and sister’s mental disabilities as “discovered” after auditions, that they may have been in denial. Sure, that’s better–infinitely better–than saying, “She’ll never do or be anything,” but isn’t it just as dangerous?

So, what does that mean for other children and adults with disabilities? Does it mean we need to put their dreams under microscopes and determine what is and isn’t feasible? Hear this: NO! NO! NO!What it does mean, though, is that we need to determine how well each dream works–and let the individual with a disability be as much in charge of that process and decision as is reasonable.

I’ll give you another example, one from my own life and one similar to Augusten Burroughs’ own. I love to sing. And one particular dream of mine has always been to be an actress–an actress, not an extra–in musical theater. And as much as I could in high school and college, I pursued that dream. But the truth is, my mezzo-soprano voice is not an A+ voice. It’s basically good, but not standout. And when I dance or move onstage, I look a bit like, as Burroughs described his own acting attempts, a “J.C. Penney mannequin.”

Now, does that mean reasonable modifications couldn’t have been made? No–but one, how many would that have involved? If the whole production has to be turned on its head for one person, then the modifications proposed may not be reasonable. And after awhile, I discovered that what I really loved about plays and films was the characters and their stories. Deep down, I really wanted to be the playwright, not the actress. I still had a creative, fine-arts-centered dream. But my “vehicle” for achieving it, as Burroughs would say, has changed (though I still love theater and take any opportunity to perform).

So, what happens when your loved one with a disability has a dream that isn’t working? Do you shut it down? Say “I told you so?” I should hope not. What you do instead is what anybody does when the car breaks down. You try to repair it. But if you can’t, you switch vehicles. So yeah, maybe your child who’s a quadriplegic loves football and dreams of playing, but honestly can’t. So you determine what it is he loves about the sport, and get him connected to it. Maybe he’s the next great sportscaster, sportswriter, or something else. Maybe your child with mental disabilities would love to be a doctor, but her brain simply won’t cooperate. So, you connect her to the medical world as best as that can be done. Maybe she can share her own medical stories and inspire others, or teach them a bit about what makes a good doctor vs. a bad one. You get the idea.

Maybe we do need to take off the rose-colored glasses. But I’ll remind you, readers: that doesn’t mean the roses suddenly stink.

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50,000 (or More) Shades of Gray: Why Disabilities Have No Right or Wrong Answers

Hello, readers,

I have returned, after a long absence of readjusting to graduate school, doing homework, working with my online creative writing group, and nursing a blistered foot (ouch!) And I’m glad to be back, because lately, ideas for posts have been surprising me at every turn. For instance, the idea for today’s post came from that blistered foot, or shall I say, blistered toe.

Yes, that’s right. My entire foot hurts because its smallest toe has two big, bursting, bleeding blisters. That’s because I have a love-hate relationship with my pedometer, and often get far beyond the federally stated goal of 10,000 steps a day just walking around my campus. It’s also because, as I explained to a health center nurse or two, my case of CP means that all my walking pressure goes to my toes, not my heels.

The medical world would say–although thankfully, no one at the health center did–that this way of walking is “wrong.” In fact, for most of my life, I was told that. My way of walking was the “wrong” way. It looked bad. It wasn’t fast enough or good enough, or healthy. That’s why I wore leg braces, of various sizes and heights, for fourteen years, including, for a short time, in bed. (I do not recommend trying to sleep in them, even if they are patterned with pink, purple, and green butterflies). It’s why I went to physical therapy once a month for fourteen years and was assigned “special” exercises, why my parents nagged at me to walk heel-toe in public and private, and why, for a brief time, I wore straps around my legs.

Now of course, some of you are probably saying, “What’s wrong with all that?” And some of you might even claim that, without those interventions, I wouldn’t be walking at all today. Some of you might even wonder if I set myself up for my current pain because I didn’t respond “correctly” to those interventions. And if any of that is going through your head, that’s fine. The tools I mentioned are based on medical research and can, I suppose, be somewhat helpful. But the problem here is not with the tools themselves. It’s with the medical model of disability. The one that says, if you don’t walk a certain way, you have to wear “special” braces that hold your feet in the right position, so it can be “fixed.”

But what happens when you take the braces off? Right–your feet return to their original position. I would argue, the natural position.

Or, let’s look at the example of a person with a disability who has a mild to moderate speech impediment. They’re made to go to speech therapy and sit, watching the lips and tongue of a person who talks the “right” way, until they can imitate that person’s speech. But often, the speech is still imperfect–and still gets corrected. Or, when that person goes home, they will either stop talking (because they’ve received the message that they shouldn’t bother), or return to talking in the way that is natural for them.

Or, let’s look at the person with a disability who has trouble with what is sometimes called “adaptive behavior.” This often crops up with diagnoses of cognitive disabilities or autism. Understand, I’m not talking about aggression here; if a person with a disability is hurting others, then that does need to be corrected in as natural and gentle a way as possible. I’m talking about, for example, a person with autism stimming–rocking, spinning, or clicking a pen, for instance–as a self-comforting mechanism. I’m talking about people with mental disabilities who may not understand finances or job skills the first time they are presented. So, what do medical experts–and often, therefore, these persons’ families and friends–do in response? They tell the person with autism to stop stimming, and may discipline that person for doing so. They approach teaching the person with mental disabilities in “drill and kill” mode, and may reprimand, discipline, or shame that person for retreating to what they see as childish activities in response to feeling overwhelmed by their attitudes.

Now, of course, stimming can be disruptive. And yes, I would much rather see a person with cognitive disabilities, even severe ones, working at a job and learning to handle his or her own money than watching TV and playing with toys all day. But I still have a question: how much of these so-called “behaviors” are natural for those people, and why are we as a society trying so hard to stamp them out? I mean, if clicking a pen was the one way I knew to comfort myself, then darn it, I’d click the life out of that sucker.

I am a big believer in absolute truth. Truth like, there is a God, He created our world in seven days (exact time frame for each day unknown), and there is a right and wrong way to live, morally speaking, in our world. But in some cases, there are very few absolutes. Disability is one of these. For example, I believe it is an absolute that we must treat people with disabilities as people first, and give them the lives we would want for ourselves in their positions as much as possible. But who invented the “right” way to walk or talk? Who invented some standard that said having a nine to five job and making X amount of dollars, performing X skill set, was the “right” way to live one’s life? Who said there was a “right” way to learn, which involved sitting still and quiet at a desk? Are those things truly right? Or are they simply convenient for the majority?

Rachel Swords and Rebecca Wheeler are teachers who co-wrote a book called Code-Switching, which I am currently reading. In it, they examine the phenomenon of teaching English in the urban classroom, where so-called “Standard” English clashes with dialects and forms of English the students use at home, such as African-American Vernacular English, regional English (i.e., Midland, Southern, Southern Mountain, New York), or other languages whose grammar patterns don’t match those of English. (An example would be a Russian student who says “My father is big man” because Russian doesn’t use articles).

Swords and Wheeler write a lot about the “correctionist” model of teaching English in these classrooms. For example, a student says, “Ms. Swords, Chris need a pencil.” The teacher says, “What?” The student repeats the exact sentence, until the teacher says something like, “No. Say, Chris NEEDS a pencil!” Or even, “Don’t say it like that!”

See the problem? You guys are smart–I knew you would. That attitude assumes the kid doesn’t know the rules of English. In reality, he or she often does–in fact, most of the students who get corrected all the time at school come from a verbally rich environment; African-American kids in particular do, because as Swords and Wheeler put it, verbal acuity is “highly prized” in their homes and families. Yet, these same kids, who come up with great poems, lyrics, raps, and rhymes outside of school often get misdiagnosed as “linguistically deficient” or even put in special education, once they get into school, because they can’t “talk right” or “write right.” Such attitudes deny the fact that all these students–black, white, tan, whatever–have a home language that they do know, that is their first language, and that should be respected in school.

Swords and Wheeler then write about teaching kids English grammar in a way that respects these first, “home” languages. They teach the students there is a difference between formal language–what has been called “Standard” English–and the informality of the “home” language, which shouldn’t be used when talking to someone like a principal, but can be used in class at specific times, like say, for creative writing. After all, as these teachers point out, many authors, like Toni Morrison, make great use of formal and informal language in their books. They know how to code-switch.

So, I’m reading all this, and a thought occurs to me. Teachers–and other members of society–say that African American English, Hispanic English, and all these other Englishes need to be respected as a natural, wonderful way of speaking and writing. Yet, when a child with a disability talks “differently”–perhaps with a stutter or, in the case of some children with Asperger’s, in a stilted way–BOOM! “Get the speech specialist in here; this needs to be fixed!” And yes, if the child’s words are unintelligible or inappropriate FOR THE SETTING, help could be necessary. But again, the question: why stamp it out completely?

Same thing for the walking issue. Yes, there may be times when a student whose disability makes walking difficult does need to practice walking more “formally” if you will. For example, walking heel-toe for short periods feels unnatural to me, but sometimes I do it to re-distribute pressure points. But I no longer wear braces to help me walk “right” (my mother recently told me my dad was never a big fan of that, and I have to wonder if that’s the reason why). My point is: if we let other groups–groups without disabilities–have their own ways of doing things like talking or walking or writing–then why not people with disabilities, too? Within reason, we allow children to go ahead and say things like, “My dad, he big man” or “My mama be at home.” We allow people without disabilities to work largely at their own pace, without the “drill and kill” stuff (hopefully). Why are people with disabilities the last remaining group whose way of walking and talking through life is singled out as “wrong” or “bad?”

Maybe it’s time to do some more code-switching.

*Special thanks to Rachel Swords and Rebecca S. Wheeler for their book Code-Switching: Teaching English in the Urban Classroom.

“Define the Relationship”: People with Disabilities and their “Friends”

Hello, readers,

It’s still Back to School month, and for most kids, back to school means, back to seeing old friends again. Most kids also want to make new friends; it’s one of the first things you hear when you ask about hopes for the school year, especially if your kid is transitioning from elementary to middle or middle to high school, or if you’ve moved to a new place altogether. The idea of friends inspired this post, and the question: What kinds of “friends” are we encouraging kids with disabilities–really, anybody with disabilities–to make and keep? How do perceptions of disabilities influence friendship? And what can we do to make the answers to these questions better than the ones we currently have?

Now, we’ve talked a little bit about this before, such as in posts that mention the idea of people with disabilities “paying for” or “earning” friends through certain college programs. That kind of thing is insidious and unnecessary, as we know. But there are other forms of “friendship” that can also hurt kids with disabilities, and we need to be aware of those.

“Friendship” Stlye 1: I am Your Friend Because I am Your Mother

This is what happens when a friend without a disability erroneously believes it’s his or her job to be a perpetual helper, mother, coach, or therapist. It’s where we get people with disabilities who mistake caregivers for friends (“My aide is my friend because she takes care of me.”)

Sometimes, this construct happens quite innocently. Maybe it occurs between two elementary kids, one with a disability and one without, because the teacher said something to the class about being “extra nice” or “extra helpful” to little Lily in the wheelchair. (And in that case, the teacher needs to rethink his or her script, but that’s another issue). In the spirit of “helping,” the friend without the disability may overdo, assuming, perhaps, that their new friend can’t read (“The language arts book is your GREEN book”) or needs help with the simplest tasks. Or, in the spirit of being a good school citizen, the friend may lash out at other kids or tattle to the teacher if it even looks like the kid with the disability is being teased or ignored. The fix here, of course, involves the teacher explaining what is really meant by “helping,” and–for goodness’ sake–making the student (s) with disabilities seem as competent as possible–because they are.

But sometimes, this construct is not so innocent, or it started out that way, but became a real pain. I’m talking about kids who approach classmates with disabilities as “projects,” or as people to encourage in a way that, frankly, is not encouraging. I know, because it happened to me a lot. What does it look like? Time for an example.

Lily has a physical disability. Brenda has noticed this, and she has noticed certain things about Lily, such as the things she needs help with, or the things that upset her (such as, maybe, being told to work with manipulative objects in math even though her hands don’t work the way she wants them to). So Brenda, for whatever reason–maybe she truly wants to be friendly, but maybe she just finds Lily annoying–starts saying things like,

“Lily, you have to try.” “Lily, you have to do this right.” “Lily, if you cry like this in middle school, nobody will let you hear the end of it.”

Can you hear the problem? This is not a friend talking; this is a junior therapist. And at times, she sounds like she thinks she’s better than Lily, doesn’t she? Now, I’m not saying friends can’t call each other on it when they’re doing something that might be embarrassing, like crying in class, but as you can hopefully tell, this is the wrong way to do it. Lily probably goes to therapy constantly, and gets “tips” about doing things “right” from family members. I don’t think she needs it from a peer, do you?

“Friendship” Style #2: Being your Friend Makes me Look Good

Emily has a disability. Veronique is a classmate of Emily’s who, up to now, hasn’t really been in Em’s friendship circle. But all of a sudden, Veronique becomes interested in Emily. Maybe it’s because Emily’s blind and just got permission to bring a guide dog to school, or has another type of service pet. Maybe Emily’s mom or dad bought her some cool outfit, toy, or gadget that Veronique wants to see up close (middle- and high-schoolers are not above these toxic friendship styles, by the way). Or maybe Veronique has a little bit of a reputation as a tough gal or a bully, and she either wants to change it or is being pressured to, thanks to parents and teachers. So what does she do? She does what girls the world over tend to do–cozies up to the person she wants to get in the good graces of, who happens to have a disability. The twist is, she uses Emily’s disability to make herself look good, either overtly or covertly (look at me, hanging out with the sweet, pathetic disabled kid like a real friend!) But what happens when Veronique gets bored, or the other kids start saying negative stuff? Right–Emily gets dropped. Or, she walks away from the friendship herself because she knew she was being used, which also hurts.

“Friendship” Style #3: My Own Personal Mascot

Peter has a disability. In this case, the disability is likely intellectual or noticeably physical (i.e., wheelchair use/problems with posture, problems with speech), but it could really be any disability. Anyway… The guys in his class or on any given sports team don’t consider Peter worthy to “hang out with.” They buy into the idea of, “What can you do for fun with a guy like that?” (The answer, by the way, is “plenty, if you use your God-given imagination.”) But, they also know Peter might have trouble making friends, or they want to make it look like he’s one of the guys, either for their own purposes (see #2) or because they’d like to be friends, but don’t know how. So Peter gets “adopted” as a “mascot” of sorts. He doesn’t go with the other guys to games or movies or what have you, but he hangs around them in big public places like school. The other guys make a big deal out of laughing at his jokes or complimenting him, and they say things like, “Pete’s the little brother I never had.” Yes, it’s better than if Peter had to deal with abuse from them, but this style of “friendship” also minimizes Peter as a person with his own thoughts, emotions, and yes, abilities, especially the ability to socialize.

“Friendship” Style #4: The Great Pretender

This is the one that gets on my nerves the most, and it doesn’t really need an example, so I’ll keep it short. This is the “friend” who approaches a person with a disability, and uses their trust to manipulate. Again, this happens a lot with intellectual or severe physical disabilities, but could happen to anyone. It’s what’s happening when you see a person with a disability giving someone his or her posessions (or allowing them to be “borrowed” but not returned), giving homework answers, taking dares, etc. because “otherwise, I won’t be your friend.” It’s bad enough when it happens to kids without disabilities, but when it happens to kids with disabilities, there’s an even bigger backlash. Either, the kid with a disability walks away hurt, or he or she doesn’t catch on until she hears the classmate laughing about it with others. Hey, you guys–that’sย a person, not the class joke.

“Friendship” Style #5: Extra Credit, or the Guilt Card

Eddie has a disability–again, any disability, so we won’t get too specific. He has just moved to a new school or new class, or maybe he’s in the same school he’s always gone to but is having trouble making friends. So what happens? The teacher decides to pair him up with a more popular boy, and calls them “friends.” Eddie’s new “friend” goes along with this, getting the idea that it will please the adults in his life, and make him look good in the bargain. But is he really Eddie’s friend? Nope–not if an adult had to force him to be. C’mon, Teach, what is this, 1962?

This one also has a flip side–and really, they all do. As we’ve said before, kids with disabilities can make bad choices, manipualte, or whatever, just like any other kid. And sometimes, kids with disabilities will approach classmates with the attitude, “You HAVE to be friends with me because I have ___ disability.” And that, my dear readers, is no more beneficial to the kid with a disability than any of these other “friendship” setups.

Now, do all these scenarios go both ways? Sure–you can have, for example, a kid with a disability who hangs around a classmate because they want to be “mothered.” You can have a kid with a disability who hangs around certain classmates just because they’ve got what he or she wants, or who uses popularity to manipulate (YES, kids with disabilities can be popular). Are all kids in danger of these false friendships? Yes, absolutely. But I do think that, because our society is still more inclined to exclusion than inclusion, kids with disabilities–really, anyone with disabilities–are more vulnerable. So the next time you try to make friends with a person who has a disability, or see a child with a disability hanging around a friend who may be toxic? Remember your homework–and remember what you were taught a real friend is. It’s one of the basics of life. Don’t tell me we’ve forgotten it just because we consider ourselves smarter than fifth-graders.

Hey! I’m Talking Here!: What it Means to Really Listen

WOW.Hello, readers,

I’m interrupting my “regular schedule”–that is, my lineup of intended blog posts–for a shout-out to someone who I think completely and totally rocks the house, and NOT just because she has a disability.

I’ll be honest with you guys. This blog doesn’t seem to have many readers, at least not ones who write back. Sometimes I wonder if my efforts to advocate for people with disabilities through my words are really going anywhere. And then sometimes, like today, I get a reminder about why I do what I do. Today, that reminder came in the form of fifteen-year-old Carly Fleischman (apologies if I misspelled your last name, Carly), who found her voice despite a bunch of people who swore up and down she didn’t have one.

Some of you may have seen Carly’s story on the news or the Internet. For those of you who haven’t, here’s a basic recap (and you can check out GodVine on Facebook).

Carly was diagnosed with autism at age two. She seemed unable to speak, and due to constant rocking, flapping, screaming, and other “behaviors,” was seen as almost certainly “moderately mentally retarded.” She has been called intellectually deficient, and her parents (who also ROCK), spent thousands of dollars and hours on therapies for her. At various points, Carly would have 4-6 therapists working with her at one time. People suggested to her parents that Carly should be institutionalized–thank God, that didn’t happen. As her dad said, “I couldn’t do it…how can you give up your kid?”

Then one day, at age eleven, Carly ran to her family’s computer and began to type with one finger. The words that came out were HURT and HELP. She then ran behind the couch and vomited.

Over the next several months, Carly at first refused to type, but with motivation from her parents, she began to communicate and realize the “power” she now had. And folks, the Fleischmans couldn’t be more correct. Communication is the most powerful thing, except faith, that you will ever have. As Carly knows from painful experience, if you can’t talk, people ignore you, or they assume you’re dumb.

Well, Carly’s not dumb. Her communication through typing is sharp, smart, sassy, and funny. Her dad said in an interview that when Carly began typing, “I stopped looking at her as a disabled person…I started looking at her as a sassy, funny teenager.” Carly wrote of hopes and dreams, such as the desire to “go to school with normal kids, but not having them getting upset if I bang a table or I scream.” Furthermore, she now uses her own blog, carlysvoice.com, Facebook, and Twitter to express herself and answer questions about autism. What kinds of questions, you ask?

Well, one mom wrote to ask Carly why her daughter screamed for apparently no reason. A teacher wrote to ask about a student who was constantly stimming in class and seemed to miss lectures and instructions. Someone else wrote to ask why some children with autism spit or drool. Others wonder why people with autism often seem, as it is said, “locked in their own worlds.”

The answers will wow you–they sure wowed me. Answers like,

“People with autism seem locked in their own worlds because they’re sensory overloaded. My mind takes a thousand pictures of your face when I see you; that’s why I don’t look at people.”

(About the girl who screamed a lot) “She’s audio filtering…we do it because we understand what was done last minute, last month, last year. She’s fine!”

(About spitting and/or drooling) “I guess I never learned to really swallow. ๐Ÿ™‚ When you have saliva in your mouth, there are only a few ways to get it out, and you do what’s comfortable…what gives you the most feedback.”

(About stimming) “Actually, [people with autism] learn better when they stim. And you all stim, too. Think about the drawings you do while on the phone, or twirling your hair…sometimes it’s just got to be more discreet.”

And what about those people who used to say Carly didn’t know right from wrong because she was screaming or throwing things? “I do know right from wrong,” she said. “But it’s like my brain is having a fight with my body to do it…I bang my head because otherwise, it feels like my body will explode.”

WOW. (If I could make that bigger with this program, it would be in like, 100-point font). I’m still blown away reading these quotes. I mean, THINK about it. How many times have you seen or heard the attitude that people with autism just can’t be reached, can’t learn, don’t know right from wrong, will never achieve anything, whatever…all because we don’t understand what they’re trying to say? And how cool is it that people with autism can communicate what they want to, IF given the proper tools, and help us understand? But do any of us listen?

For example, how many people do you know (and if you have been one, that’s okay; I used to be one, too) who believe that autism automatically = intellectual disabilities? (I refuse to say “mental retardation.”) Yet, if what Carly–and others like her–say is true, which I believe it is, people with autism are not suffering from a lack of brain input, or “lights are on, but nobody’s home.” They are OVERLOADED with information! Think of it–a brain crammed–absolutely stuffed–with every word, every picture, every sound, smell, taste, and texture, they’ve ever experienced–which they then have trouble sorting into their proper “compartments,” if you will. Wouldn’t you do anything you could to help with that, even if it meant engaging in what the world saw as a “behavior?” I’m coming to believe that all people with autism, even severe autism, are really, really smart. Their brains have a TON of stuff in them. We just haven’t found all the keys yet to unlocking everybody’s info, and we need to keep working at that.

And here’s another thing. Carly didn’t start typing until age eleven. Some people consider this fact permission to say her story is a hoax, but I don’t believe it is. There are incredible miracles out there, big and small. Frankly, it’s a miracle some of us manage to get out of bed in the morning. ๐Ÿ™‚ As Carly said, “I don’t have a hand up my butt like a puppet…I am typing. I am talking.” So, to those who believe she’s a big joke, I feel terrible for you. You’re choosing cynicism, and I can tell you from experience, it feels pretty lousy. But I digress.

The question that truly arises from this fact is, why did it take ten years for Carly to start talking to the world? Was she just waiting for her autism to “let her,” as some people with autism say happens because, for some reason, they can communicate with some people, but their bodies and brains won’t let them communicate with others? Or, was it because nobody gave her a chance, and the proper tools, to start talking, like a computer, or assistive technology, or even a letterboard? Was that considered? Or did all the doctors, all the therapists, never think of that (and thus, did her parents never think of it), because she seemed “too far gone” into autism? And if they had thought of it, who knows what would’ve happened?

Carly’s parents now say they want her to be happy, to have dreams and goals. Now, I don’t doubt they wanted those things before the typing began. But did they believe those things were possible, or were they told “impossible?” Did they absorb that message? And if so, what could they have been listening to instead?

So many people in the world today still believe people with disabilities, even those of us who talk with our mouths, have no voices. It makes me angry, and it breaks my heart. Please, readers: listen. Because you might hear somebody whose voice you never would’ve recognized saying,

“HEY! I’M TALKING HERE!”

Thanks so much, Carly, for sharing your story and for being a great person. Keep talking–love you!

P.S.: Carly can also be found on the website of The Golden Hat Foundation (check “Links.”)

Crowns of Glory: While We’re on the Subject, What about our Aging People with Disabilities?

Hello, readers,

Happy Sunday. ๐Ÿ™‚ In the spirit of the day, I’m reminded of some verses from Proverbs. One of them describes older citizens’ gray hair as “crowns of glory.” The other refers to children as blessings, as “arrows in [one’s] quiver”…and who knows more about having children than those who also have grandchildren and great-grandchildren? And what about that ever-handy verse, “Honor your father and mother so that your days will be long”–do we still go by the credence of “respect your elders,” or has that gone out the window?

I’m guessing it’s gone out the window. And why is that? Because American culture doesn’t show a lot of respect for the aging population, particularly those whose aging has resulted in disability (ies). The pervading attitude in America is that, once you reach a certain age, you are no longer viable or valuable to society and should live out the rest of your life in a nursing home or hopsital (and no, I’m not saying nursing homes are totally inappropriate–one, you should know me better than that, and two, we’ll get back to that in a minute).

Let’s review a basic concept, okay? Disability is a minority. No way around it, if you have a disability, you are not in the majority as we think of it. And that, as we know, comes with all kinds of unfairness and hurt that we need to work together to eradicate. But disability is also a unique minority. Why? Because it’s the only one that anybody, of any race, creed, color, political affiliation, sexual orientation, or whatever, can move in and out of quite seamlessly. Of course, some disabilities, such as CP, Down’s Syndrome, fragile X Syndrome, and so forth, you cannot “cure” (yet), or have one day, yet not have the next. But I wonder if we have forgotten–blindness, deafness, orthopedic issues not tied to an underlying condition like CP, traumatic brain injuries–those are disabilities, as well. And it only takes one car accident, one sports injury–or a little aging–to get one. So my question is, why, as we are trying to “normalize” disability for everyone else, are we still so disrespectful of our aging population in this area?

Maybe it’s because of the way we view the word “normal” (and of course, what is that, anyway?) That is, when someone is born with a disability, some people say things like “They can’t help it” or “They have an excuse.” Which reminds me–a disability is an obstacle, not an excuse. But when a person who wasn’t born with any disabilities suddenly contracts one, often through becoming older, we have a different reaction. Suddenly, that person is a burden. They cause stress. Or they cause pain. Of course, part of the pain is that for the older population, disabilities can often be a precursor to the body shutting down, which means death, and we grieve because we know that means we will lose that person. But for some people–a few (we hope) somewhat ignorant people–dealing with the old is just a big pain, period. It’s why, when you look at fiction books about utopian societies, such as Joan Lowry Nixon’s The Giver, you see stories of The Old being sent to live in a totally separate place from everyone else, and then “released” (euthanized) when the community deems it appropriate. It’s why you see older citizens euthanized in certain societies now–straight-up ignorance.

“But Chick,” you might say, “you don’t understand. The parent or grandparent in my life right now is not the person I remember. They lash out at me because they don’t know who I am. They make wild accusations. I have to feed them and change their diapers, all while raising my own kids and holding down my own job. I get frustrated.”

Sure you do. And I’m not discounting any of that, or trying to pretend it doesn’t exist. Older people can be frustrating just like anyone else–including people with disabilities. I have some older women in my life right now going through a lot of medical crises, and it is frustrating at times because of the stress the medical issues put on my family. But let me reiterate–the SITUATION, not the PERSON, is what needs to be pinpointed as the stressor. The person him or herself still deserves to be cared for with dignity and respect–just as anyone else would, and does.

Of course, as with a child or young adult with a disability, every elder-care situation is different. And yes, sometimes nursing homes might be the best option, just like group homes are appropriate for younger people with disabilities. But let me do a quick recap of what we’ve been over on this topic, with appropriate changes:

1. A nursing home is an option. It is not THE option, and should never be used out of resentment or anger.

2. There is a huge difference between a nursing home that treats its residents like family, and a big facility that doesn’t care and may even get away with abuse and neglect, just as there is a huge difference between a group home and an institution. Do your homework!

3. If the older person in your life is still able to make decisions and speak for him or herself, and they say “no nursing home,” LISTEN. Listen period, actually, to what they want and need. And even if they look incapacitated? Out of love, do to the best of your ability what you truly believe that person would want. Remember: this is probably a parent or grandparent you’re dealing with. And even if it’s not, they need your care and support. They have loved and still love you. Love them back.

4. Nursing homes, in my humble opinion, should be a last resort for the family in dire straits (i.e., severe Alzheimer’s, a relative who has become mentally ill, physical care needs that go beyond what the family can provide, and so on). In many world cultures, parents and grandparents live under the same roof as the children, and they are respected and loved. What’s more, that family system actually works. Now does that mean the older people get to say and do whatever they want, even if it hurts someone? No–just like we wouldn’t expect anyone else, with or without a disability, to get away with that kind of behavior. If an older relative is physically, verbally, or otherwise abusing someone in your home, then that needs to be addressed quickly and in the right way. But remember what the older relatives used to be? They were the ones who told stories. Who knew things you didn’t. Who might not have been right about everything–for example, let’s hope most of us don’t put butter on burns–but were generally great to have around. Why don’t we treat them like that anymore?

As you know, I love the television show Touched by an Angel. One second season episode features the angel Monica reaching out to the older, slightly senile blues club owner Sam Brown, and his grandson Zach, who wants to put him in a nursing home without truly listening to his wishes, his memories, and what he loves. Monica says to Zach, “Remember, your grandfather was once a young man. He had a mind that was strong, and a heart that was even stronger.”

Now of course, depending on how they grew up and how they treated other people, that can’t be said of every Sam Brown out there. Some of our parents and grandparents actually were abusive and neglectful, and for that, I reach out to affected readers with a virtual hug. But the sermon at my church today was on forgiveness. So maybe it’s a good time to remind myself–and my readers–that under every gray head and mind that looks confused–under every disability–there resides a strong, valuable person.

A Stereotype by any Other Name: The Dangers of “Good” Labels

Hello, readers, and happy August. I like August, because I live in a very humid part of the country, and the arrival of this month means we’re just about a month and a half away from the welcome coolness, crispness, and routines of autumn and winter. Sweaters, pumpkin bread, hot cider and chocolate…ahhhh.

For most of the country, August is also the cue to start getting ready for back-to-school. And back-to-school means, back to learning. An opportunity to learn new things and apply that knowledge so we can become smarter, more discerning, more compassionate, and better-informed people. The thing is, it’s not just for kids; back to school can be for adults, too. At least, it should be. So welcome back to the School of New Disability Thought. Buckle up, because today’s lesson may sound a little weird, even counterproductive. But it’s true, and we need to be aware of that.

We’ve spent a lot of time on this blog talking about the “bad” labels that people with disabilities endure due to ignorance. Retard/retarded. Parasites. Unhealthy. Not “normal.” Special. You know them, and if you’re anything like me, they make your spines stiffen, your blood warm up–or even boil–and your hair stand on end. But what about the “good” labels? You know–the stereotypes that perpetuate the following myths:

  • People with disabilities are always happy.
  • People with disabilities never complain.
  • People with disabilities are always “sweet” and “brave,” even if also “pathetic.”
  • People with disabilities are capable of imparting small, but profound nuggets of wisdom, particularly if their disability is intellectual/if they struggle with the tasks of everyday life.
  • People with disabilities are especially godly, saint-like, and innocent.

Is it me, or are these a little more sickening than the negative stereotypes? Yeah, I figured it wasn’t just me.

“But Chick,” some people might say, “why are you upset about this? At least these are positive generalizations, right? Doesn’t it help people without disabilities see people with them as equals, if they’re seen as happy and sweet, rather than angry and whining?”

Yes, I would almost rather see positive generalizations than negative ones. And yes, I would rather see the kids in the schoolyard patting little Andrew on the back, or saying his wheelchair is cool, because they see him as this happy, brave kid, not ostracizing him because he’s “different.” But the key word here is “almost.” Generalizations are just that–general. They can’t be applied to a specific person or group because we’re all different–ALL, not just those of us with disabilities. And because all people are unique, generalizations, even the “good” ones, put us into boxes. Think about it:

If you say a person with a disability is always happy and never complains, you may think you’re praising that person. But what you’re really doing is sending a message: “This is how you HAVE to be for people to like you.” And what happens when that person does complain, or argue, or get upset? The pervading attitude is, “We expected better from you.”

If you call a person with a disability “brave,” you may think you’re doing them a service. And to you, maybe they do look “brave.” Maybe you wonder how you would cope in their positions, and admire them for doing what you don’t think you could. And that’s understandable–but in that case, you really ought to get to know a person with a disability better. Take it from someone who knows. We’re not “brave” just because we get up in the morning. We’re not “brave” because we walk down the block, talk to people, or go out and do things people without disabilities do every day, like ordering our own food or shopping. It may look that way to you, but when you say that, you are again putting an expectation on us to be “brave” about everything, even things that scare us. And when we do act scared? The attitude becomes, “We expected better from you.”

And do me a favor, okay? Do NOT even get me going on the saint stereotype. Even as a Christ-follower, gotta tell ya, I’m no saint (except according to Jesus, who calls all His children saints). And yes, sometimes I do say witty or wise things, but I don’t think of them that way, and it doesn’t happen constantly. In fact, sometimes, just like everyone else, I try to be witty and nobody laughs. Or I say something I think makes a lot of sense, and guess what? No one seems to care. So why do we put these sorts of expectations on the people with disabilities in our lives? I’ll give you one guess why.

I think it might be because we’re the ones who are scared. That is, some of us out there have never known–truly known–a person with a disability, and we’re scared of what we’d find out if we ever did. Would we find a bitter, angry, childish, or pathetic person? Or would we find someone who’s brave, happy, and America’s Sweetheart, so to speak? I think we’d prefer option two. So maybe, just maybe, that’s why we created positive stereotypes–to allay our own fears. And–this is even worse–to blame the person with a disability when those stereotypes don’t hold up. As in, “You didn’t fit my expectations of a happy, sweet, accepting person. You are a BAD CRIPPLE!”

In no way am I suggesting all people without disabilities have this attitude. Most of us don’t. But at some point in history, our ancestors, our families, or even we ourselves, DID. And that’s where the stereotypes came from. Maybe the people who coined them thought they were being helpful. They probably bought into the twisted truth (which = lie), that a positive stereotype is better than approaching people with disabilities on the street and yelling, “Cripple! Retard!” I don’t know what’s worse–that the negative stereotypes still live in a world where they should’ve died decades ago, or that the positive ones thrive in a world so politically correct, so determined to embrace a relativist, humanistic worldview, that it prefers to sugarcoat disability as a “brave struggle” rather than what it is–something that people live with, but that sometimes sucks–and yet, is still an ingenious way to live.

So as you close your notebook on this lesson, remember two things. No one is ever ALWAYS anything. People with disabilities are NEITHER (not either), always happy, nor always bitter. And, to put it in Seuss-speak (ah, the wisdom of Dr. Theodore Giesel), “A label’s a label, no matter how good.” Ditch the labels you put on people with disabilities, and try using their names instead. Behind each name is a person–a person you just might enjoy getting to know for who he or she truly is.

*Special thanks to access.uvic.ca for letting me use your Top Ten Negative Stereotypes (because as we know, in Disability World, a positive stereotype actually inverts into a negative).