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Archive for January, 2012

Not Separate, but what is “Equal?” The True Nature of Equality and Disability

Hello, readers,

If you’ve been reading this blog for any length of time, you probably know my feelings about segregated classrooms, sheltered workshops, placing people who do not need them in “homes” and institutions, and the like. But the question still remains: even though it is morally wrong to segregate and separate people with disabilities from the rest of society, what is “equal” in their case? Can they ever be expected to be equal, or is that unrealistic, or even cruel? And if they can be expected to be equal, then how?

I would challenge you all to remember back to your American history classes in school, including college. If you have a basic knowledge of history and the Civil Rights Movement, you know that in circa 1896, America accepted Plessy v. Ferguson, the Supreme Court ruling stating that the segregation of African-Americans was fine as long as African-American schools, transportation, bathrooms, and other facilities were “equal” to white ones. But they never were; they were always substandard or worse. Even after the victory of Brown in Brown v. Board of Education, 1954, African-Americans continued to have to struggle for every civil right they should have possessed by virtue of their status as human beings.

Most of us would say that what African-Americans had to go through to obtain basic rights to an education, adequate housing, and even adequate toilets, among other things, was a blight on our history for the white majority. In these politically correct times, we all hate to admit that we or our ancestors would ever have a part in willfully excluding someone. And we deny doing it to people with disabilities all the time because we have the “time-honored tradition–help the handicapped,” according to Mary Johnson. But we continue to separate them. Or, if we don’t separate them, we do not treat them as equals. And we use what we think of as a valid excuse.

“You can’t expect people with disabilities to be equal all the time,” we say. “They have special needs. Their bodies and brains just don’t work the way ours do. No matter what laws you pass, you’ll never change the fact that their bodies and minds are not equal. And trying to make them equal can even be cruel. Would you expect a little boy or girl in a wheelchair to perform to the same standards as others in a sports event? Would you expect someone with a mental disability to perform just like everybody else on a standardized test? No–so they can’t possibly be equal. Because of this, sometimes separating them out is the best thing for them.”

Baloney.

To those of you questioning that, ahem, “extreme” response (I know some of you are thinking it), let me clear up the first fallacy in this argument: that because people with disabilities’ bodies and brains may function differently, they cannot be equal. I say, that is a lie. They are still human beings, aren’t they? They have the same goals, dreams, desires, hearts, and minds as you do; those hearts and minds may just function a bit differently in terms of the organ, as everyone’s does. I am a personality quiz fanatic, and one of my favorite quiz sites, blogthings.com, has two quizzes where one can find out what color his or her heart and brain is. You fill out a quick personality-based quiz, and you get a result at the end telling you your colors and what they mean (for example, I apparently have a purple brain, which means I am both intellectual and creative. My heart is apparently green, which means I am most concerned with balance in a romantic relationship). If you accept the theory that, for fun, people can be different at their inner cores, what is so hard about accepting less light-hearted forms of the same things?

“But Chick,” you say, “maybe those people are right. You can’t expect somebody with Down’s Syndrome or Fragile X Syndrome to do the same standardized test as kids without disabilities, right? And wheelchair basketball is different from the ‘regular’ kind.”

Yes on both counts–they are different. But only in the sense that the sport uses chairs, not legs, and the tests may need to be altered. Keep in mind: the question at the root of equality is whether or not the child or adult with disabilities deserves to be treated first as a person–and we all do. So at times, yes, the playing field needs to be leveled. But it would be leveled only so that the child or adult with the disability (ies) could perform the same task as those without disabilities do, as much as possible. Giving a person who is blind a Braille writer does not make him or her unequal to you, nor does it make his or her tasks unequal to yours. The modification makes equality possible, because then that person can write, just like you can. Allowing a person with OCD or bipolar time off for counseling, or allowing them to reasonably adjust the work environment to what they need (i.e., cleaning off a desk), does not make that person unequal. It makes equality possible, because with that counseling and those modifications, that person can do what he or she needs to do without constantly worrying about the disabilities involved.

It doesn’t seem like a difficult concept. I would say that if more people understood it, they would be more willing to see the needs, hopes, dreams, and goals of people with disabilities as equal. And it is true–the disability-related Civil Rights Movement sometimes seems to live underground. But it needs to be brought to light, because people everywhere, like Julie Shaw Cole, Kathie Snow, and others, are seeing the ugly truth. Even though her book is fiction, Ms. Cole bases it on realistic, true events that can and do happen to people with disabilities. In one scene of her novel, Emily, the protagonist, overhears aides at her “home” complaining she is “getting too self-determined.” What a horror! They also call her “uppity.”

Hmmm. “Uppity.” An adjective used to describe a lot of “bad cripples” who dared ask for better lives, for new choices for themselves.

“Uppity” is what white men in Mississippi called Emmett Till when he dared acknowledge a white woman.

In another scene, Emily joins a group outside the nursing home as they protest their substandard care. Some drivers roll by and show their support. But one yells, “Parasites!” out his window.

“Parasites.” As in, bloodsucking, life-stealing creatures that need to be squashed. I think I need an antacid.

In many situations, real and fictional, people with disabilities are referred to as “incompetent” to do certain things. Let’s take a look at what “incompetent” really means, shall we? My computer’s thesaurus gives me synonyms such as:

Inept

Useless

Bungling

Unskilled

Stupid

Hopeless

Unable

Incapable

And my favorite: the definition used in medicine, as given by my computer’s dictionary:

“Incompetent”: adj. In medicine, this means a body part, such as a muscle, that does not function properly

Okay, we’re back to the medical model. What you’re telling me with this definition, medical community, is that the safest thing for you to do might be to define a person with a disability only by what doesn’t “work properly?” How un-equalizing can you be? And to think, doctors take oaths to “first do no harm” to patients. Well, no offense to the many, many good doctors out there, but that sounds like a lot of harm to me.

Think about it. If anyone dared call you, without a disability, stupid, useless, inept, or hopeless, you’d fight them with everything you had. But when it comes to people with disabilities, why does “incompetent” roll off our tongues?

I recently watched an episode of Dr. Quinn, Medicine Woman where the main plot involved African-American characters Robert E. and Grace experiencing harassment from the KKK for buying a home. The KKK leader, one Jedidiah Bancroft (George Furth) had these lines:

“It wasn’t enough that the [Civil War] set them free…now they want it all! They want what’s ours!”

“Bigot!” we scream at the screen. “Narrow-minded jerk!”

Ah, but then we turn around and say that people with disabilities just can’t be satisfied with laws like ADA and IDEA–that they want what’s ours, and they’re being foolish because they’ll never be equal.

Really?

Think about it.

Demystifying the Marketplace: Making the World Accessible for those with Disabilities

Hello, readers,

Long time no see, and whew, has it been a busy week. I have been walking my little feet off in order to satisfy my love-hate relationship with my pedometer, reading, writing essays and reviews, doing devotionals, and trying to squeeze in time to eat. But now I’m back with a new topic.

First of all, in personal news: I have finally been able to dig deep into Julie Shaw Cole’s Getting Life. It is a fascinating, heartbreaking, wrenching, thought-provoking read that actually made me cry once, and it was the impetus for this post. You see, many times–more times than any of us likes to admit–we accept, perpetuate, or even reveal within ourselves an attitude that Emily Mason’s friend George takes in the book: “It’s their world, the non-crips.” And as for people with disabilities, they can do the same thing. As Emily says later on, “Maybe it is their world, and I have no rights to it.”

Well, besides the obvious–the use of the slur “crip,” especially by a person with a disability, and the assumption that the world is only meant for certain groups, there’s a lot wrong with those statements. First and foremost, nobody earns the “right” to live in our world today. Being born into it means that ideally, as much as possible, you should get a fair chance to experience it. (And yes, I know life isn’t fair–we’re speaking in terms of ideals here, okay?) Secondly, such statements and attitudes perpetuate powerlessness, especially in the community of people with disabilities. So the question becomes, what can be done to give the power back?

I’ve touched on a few issues, such as paratransit and people who are labeled “selfish” for wanting to use public transportation, but I actually haven’t spent a lot of time on physical accessibility yet in this blog. Well, today is accessibility day. We have in fact come a very long way with this one, but we aren’t “there” yet. For instance, I read a few weeks ago in a Twitter post from Accessibility or Bust that in Canada, one has to pay extra for accessible seating at a Cannucks hockey game. And recently, when I checked the showtimes at my local movie theater, I noticed only one movie, at one time slot, carried the option of closed-captioning and/or descriptive video for people who are blind. (Too bad; I’ve kind of always wanted to try those DV headsets. And though I’m not deaf, I have used captions on my TV, just to see what it’s like).

In Getting Life, published in 2001, other accessibility issues are raised, such as a complete lack of curb cuts in Emily’s neighborhood, unaccessible entrances at places like the library, and a van with a wheelchair lift that had been broken for quite awhile, with the added bonus of a crotchety driver who proceeded to wreck the thing with Emily, who uses a wheelchair, on board.

For crying out loud.

Now, as a person who can walk, talk, use stairs, and open doors just fine most of the time, I admit, physical accessibility is not something I let stop me most of the time, and it’s not something I used to think about much–until those scattered incidents where I couldn’t get where I wanted to go because it wasn’t accessible. I’m talking about steep stairs with no railings. I’m talking about big hills, sidewalks full of cracks, holes, and water hazards, high curbs, and other assorted obstacles. And these things, of course, make me think of other accessibility issues, like lack of ramps, lack of ways for people who are deaf or blind to enjoy visual or auditory entertainment, libraries that don’t carry books on tape or other options for people with dyslexia…I could go on and on. The accessibility issues in this country have gotten so bad that some people end up chaining themselves to public buses without access to get their point across (Memo to you guys: rock on!)

And yet, the U.S.–land of the free, land of opportunity for all–and boy, is that a laugh–still doesn’t listen. Not to mention countries like England and France, where ADA-type laws are unheard of, as evidenced by lack of accessibility on stairs, in subways, and so forth. (I know because I’ve visited both countries). But even Europe is further ahead of the curve in some areas. For instance, at least they have the decency to use tons of curb cuts, which is huge for a gal like me with zip depth perception.

Don’t get me wrong, here. I understand the old argument most people make when this subject arises: access costs money. And I understand that some countries, such as Third World nations, may just not have it (although those of us more fortunate could do a lot about that, and should). But in response, I will tell you three things:

1. In most cases, access does not have to mean a huge, elaborate deal. Putting in a ramp costs a lot less than many other endeavors a business might undertake in a given fiscal year.

2. When a business of any kind puts in something that people with disabilities need, such as an automatic door–yet does not call it an accessibility modification–people without disabilities use it and love it. (For another example, take the electric toothbrush).

3. A world without accessibility clearly sends the unspoken message: We do not want people with disabilities here. It also scares people with disabilities away from being out in the world.

You see, I think helping people with disabilities get out of the timid, scared mentality that the world will only hurt them will help tremendously with physical and other accessibility issues. I’m not for one minute suggesting that people with disabilities are contributing to negative messages about whose world it is–no, far from it. But if we all–including me–stopped capitulating to what Emily in Getting Life called the “it’s a jungle out there” attitude, the rest of the world might be more willing to see people with disabilities as regular Joes and Janes who yes, need access, but so what? That’s not such a big deal, right? After all, more people means more of a chance to get to know new faces and names. A chance to meet new customers and patrons. A chance to learn new facts and hear new stories.

So what does the “jungle” mentality look like? Well, it basically stems from a few things that keep their grips on people with and without disabilities all the time: discouragement, fear, timidity, and even anger. We live in a culture where, from the time we are young, the cold, hard facts of “the real world” inundate us. Rapists and murderers roam the streets–and most of them look as harmless as your beloved uncle, aunt, or grandparent. Thieves lurk in doorways with con artists, all waiting to see who they can take. Homeless people are not to be trusted or shown compassion because they’ll just spend what you give them on alcohol and drugs. Food from vendors carries diseases, parasites, chemicals, and nitrates. The slightest change in the weather could be catastrophic. Your boss will fire you if you show up late for work one measley time. Bills must be paid the minute they are picked up, or else you face foreclosure and worse (which also goes to prove you’re “not ready” to live in the real world). Curbs and hills and stairs are bad, bad, bad–bruises, cuts, scrapes, and broken or sprained bones waiting to happen.

If you ask me, this kind of thinking makes the entire world sound like George Bailey’s version of the world without him in It’s a Wonderful Life, or one of those dangerous ancient civilization marketplaces where they chopped your hand off if it even looked like you were going to steal something. Through that lens, the world looks crowded, noisy, cold, dirty, and hostile. (Cue Claude Frollo singing “In Here” in The Hunchback of Notre Dame).

Being fallen, our world and our public will never, ever be perfect this side of Heaven. But the truth is, the scarier we make the outside world seem, the less people with disabilities will want to experience it. They will therefore be giving up any dreams they may have had, and kowtowing to the ableist attitude that says, “Fine, we didn’t want you out here anyway.” Think about it, parents, colleagues, friends, relatives, and others. If your loved one didn’t have a disabiltiy, would you constantly throw negative aspects of public life, and the accompanying horror stories, at them?

But you say, “They have to know this stuff so they can live independently,” or “They have to know this stuff so they can make a choice.” True, but what kind of choice is it when everything you present is negative? And why can’t we add the positive side of independent living to that equation? (While we’re at it, what is independent living, anyway–is it a myth? More on that in a future post). Of course, I don’t mean to suggest that living on one’s own is what everyone will choose. But I think that choice–and the most positive version of all choices–should be open to anyone and everyone with a disability, so they can see how possible it is to live their best, least restricted lives. Because sometimes, the alternatives can be downright nasty. For instance, in the book I’m reading, Emily wrestles with the question of whether a woman “like her,” with severe disabilities, can make it “out there.” But I’m rooting for her to (haven’t finished the book yet) in large part because, in the nursing home where she lives, she is manhandled, verbally and physically abused, unnecessarily drugged, locked in closets, and even raped. An extreme example, perhaps, but I challenge you–which environment is more protected?

Now, which one is safer for Emily?

That’s what I thought. So I implore all of you: take a lesson. Instead of crying out to people with disabilities, “Stay inside; you can get hurt out here!” start extolling the virtues of our world. And while you’re at it, for the love of Mike, open the doors of all that world’s pieces. Make it as physically, mentally, emotionally, and spiritually accessible as it needs to be for others–not what’s convenient for you.

A Break from the Bad and the Ugly: Can there be “Good” Group Homes?

Hi, readers,

I have some good news, to start with. I was able to go to Barnes & Noble last weekend, and flip through the American Girl: McKenna books to investigate the portrayal of Josie. To my utter relief, her wheelchair is not the main point of her characterization. She is characterized instead as confident and smart, adjectives McKenna herself uses. Josie has named her wheelchair Lightning (after the horse she hasn’t ridden yet, but has in her imagination), and handles disability with gentle, yet true humor. (The specific disability given, if I remember correctly, is in fact cerebral palsy). And even though McKenna does react by not wanting to work with someone who is “different,” it’s largely because she’s never been close to anyone with a disability before. The book infers Josie will help change this. So–great news! 🙂

Also, a slight correction: In an earlier post, I mentioned that Addy Walker was American Girl’s first and so far only African-American heroine. Recently, though, Addy was joined by Cecile Rey, an African-American girl from 1850s New Orleans, whose family is not only free, but wealthy. How refreshing.

As you can see, I’m focusing on some good news I’ve found recently in the disability world. But there is one part of that world I have never seen as potentially “good,” and that is the phenomenon of the group home. My disability’s mildness is such that the possibility of being put in such a place was and is my worst nightmare. But as it has been pointed out, some group homes are real homes, and some people with disabilities–ones who truly need their services–enjoy living in them. So this week, I began to do research with this question in mind: Do good group homes or assisted living placements exist?

My research indicates that yes, good group homes and assisted living does exist. By no means does sending an adult with a disability to a group home automatically mean he or she will be isolated and abused, although that certainly does happen, and we will examine that later in the post. Group homes are–as unfortunate as this sometimes seems–good places for certain people, who actually need, and more importantly, want them.

Some of the best examples I have seen are the Aspire program of Illinois and the Spectrum for Living program of New Jersey. Aspire works with children and adults with disabilities and their families, and their services do include residential choices for adults. These range from apartment living for those with the mildest disabilities, with help from staff as needed, to a group house of two to seven people, to cottages for people with the most severe disabilities, where twenty-four-hour care is provided. These choices, of course, mean that no one is “dumped” into one particular place and forced to stay there, getting care or supervision he or she does not want or need. Aspire also includes vocational and employment programs, recreation, and access to certain activities, like music and computer training, that many people with disabilities would not get in such a setting.

Aspire has a photo gallery of its many group homes; I have to say I was impressed. They are in fact actual houses, not blocks of institution-like buildings, around western Chicago.

Spectrum for Living of New Jersey is quite similar, although their housing options are only described as “barrier free” and not as specific as Aspire’s. Their website includes a recreation calendar for residents and a photo gallery, as well. Residents are allowed to set up and decorate their own space as they see fit, and twenty-four-hour care is provided “to the most medically intensive residents.”

So, “group home” doesn’t have to mean “isolating institution.” In fact, as an online article from the Jewish Daily Forward says, “Parents of adults with disabilities increasingly turn to group homes” because otherwise, they may end up caring for their child with a disability well into the parents’ own old age, which can be detrimental for all involved. In fact, the same article mentions an adult man with a disability who was left alone in his parents’ home after their deaths, water and electricity turned off for lack of payment. Another parent describes her twenty-two-year-old son’s experience in a group home in Boca Raton: “He loves it…he was a different kid when he was home…he’d get frustrated and bored.”

So if a group home provides a sense of community and real activities for a person with a disability, then that’s positive. But for anyone reading this considering group home placement for a person with a disability, I urge you to watch for these red flags:

  • “Kid.” The mother I just quoted referred to her son as a “kid.” Twenty-two is not a kid, nor is it appropriate to refer to someone of that age as one, especially someone with a disability. If the staff refers to your loved one with a disability in childlike or condescending terms, or acts in such a way, get out of there.
  • Take a very close look at any employment opportunities offered. Are they real jobs, or simply menial? Aspire, for instance, mentions a “sheltered workshop” as an employment option for those with severe disabilities. Let the buyer beware. Sheltered workshops are often quite isolating, and as I covered in a post last month, some of these workshops only pay people with disabilities sub-minimum, “compensatory” wages.
  • Activities: Do you have a choice in what to participate in? I could not tell from the Spectrum for Living’s recreational calendar if this was in fact the case. But if you see that the whole group is expected to act in lockstep all the time, do a double take. Disability does not equal “no individuality,” and supervision does not mean telling someone exactly what he or she can and cannot do with his or her own time.
  • Independence and interdependence levels: Are there opportunities within the group placement for someone to become more independent and interdependent, but naturally, rather than through regimented therapies? Or are the residents expected to be as needy as possible, in the name of the staff having control?
  • Abuse: Yes, it does happen, such as in several state-sponsored institutions in Texas, with names like Mexia State Supported Living Center, Corpus Christi State Supported Living Center…are we seeing a pattern here? If any reference to the state or government is anywhere in the group home’s name: buyer beware. Do your homework; check for any and all allegations of physical, verbal, mental, psychological, or other abuse. Also watch for suspicious rules, like no visitors,  or visitors only on certain days and at certain times.

Finally, remember: Group home placement is an option. It is not THE option, and for many people with disabilities, it is or would be inappropriate. It is the equivalent of a sequestered special ed classroom–as in, not the least restrictive environment. So, be sure you really need one before you go down that road. And if you have to go down said road, make sure you check out the “accommodations” on your mental car’s route first.

Pomp and Special Ed: An Exclusive College Education

I’ve heard some people tell rising college students, “College will be the best time of your life.” Well, I don’t know about best time of one’s whole life, but college certainly is a great experience and, I think, should rank right up there. But too often, for students with disabilities, that doesn’t happen. Sometimes, it’s because parents and teachers mistakenly think students with disabilities, intellectual disabilities especially, cannot benefit from college, or can’t handle it. This, however, just perpetuates the view of people with disabilities as permanent children whose purpose is to be cared for more than contribute.

But what about the parents and teachers who do believe students with disabilities can attend college? They’re right, and those students should have a college experience, just as their peers without disabilities do. The sad reality, however, is that even though many universities now admit students with significant disabilities, they don’t allow those students to have a real college experience. Instead, they are placed in programs similar to the special education ones they just left in public school. They are largely segregated from other students, and the environments in which they move have an artificial, childish, condescending tone and feel.

I have mentioned college and special ed (as if they should really go together!) in other posts, but now it’s time for us to get specific, down and dirty. We’re going to put these “inclusive” programs under the microscope, and then really meditate on what we see and how to react to it. Ready? Let’s go.

First, the obvious question: where do these programs exist? According to thinkcollege.net, a site dedicated to students with intellectual disabilities (those who are often caught and placed in these programs in colleges’  figurative nets), and their families who are considering colleges, several states and universities employ the programs. These include Vanderbilt University of Tennessee, UCLA (ironic, isn’t it, considering California’s open, liberal reputation), and the College Connections program of Louisville, Kentucky. More exist, but we’ll just focus on these for now.

Second: what’s so bad about these programs? Ah, so glad you asked. As I have mentioned, according to the articles of disability advocate Kathie Snow and other activisits, a few negative aspects are:

  1. Students are generally required to sign up for SSI, yet turn over all their funds to a mentor or aide who is paid to live with them, help them, and in essence, be their friend. And what does that say? The unspoken message is, even in college, people with disabilities are incapable of making friends or socializing “appropriately,” so they must be given friends–indeed, must earn them by paying for them! Think about it, parents. What would you do if that happened to your son or daughter without a disability? If someone spread a vicious rumor around school that your son or daughter had to pay a date to go out with him or her? You’d be livid. So why do so many parents consider this “mentoring” arrangement acceptable?
  2. Students are required to “earn” free time. I’m not saying anything else about this one. If you read yesterday’s post, you know exactly how I feel about the phenomenon that says, “people with disabilities have to earn everything they get.”
  3. Students are required to spend a set number of hours per semester in “required voluntary” activities, such as job training–for menial jobs–or learning how to use public transportation. How can it be voluntary if it’s required?
  4. Some programs, such as Kentucky’s College Connections program, do not allow students with intellectual disabilities to take classes for real credit. In other words, “You have to earn the grade, but it won’t count because poor thing, you’re too dumb.”

Let’s dig deeper, shall we? We’ve hit the muck–ready for the big nasties? Take a deep breath of fresh air, tighten up your rubber gloves, turn on your headlamps, and pull your boots up as high as they’ll get. Ready?

Okay. I did some research on these programs last night. I found such nuggets of caca as:

LOUISVILLE, KY:

A recently written article about College Connections (2010), describes a class this way: “But the six students in this class are not typical college students. They have Down’s Syndrome.” The article also quotes the teacher, who begins her class by holding up a piece of paper and asking: “Who remembers what this is?”

“A syllabus,” a student says.

“Right. This is what you have to use so you can get another A.” (Yeah–but that A won’t even count!)

Down’sSyndromeofLouisville.org’s webpage states of their college program for students with Down’s Syndrome: “A certificate path is currently being developed for this program.” Okay, so in the meantime, what do these students get?

The same website claims part of its mission is to help people with DS “reach their full potential.” Yeah, keep working on that, folks. You haven’t met your goal yet. No grants, money, or chocolate cupcakes for you!

Jefferson Community and Technical College (the one the article was about): Classes have names such as “Employment Readiness.” The teacher suggests “good” employment opportunities. For example, she says, “You may say, ‘I don’t want to be a janitor,’ but if I could do work at the baseball stadium, I’d do anything.'” In other words, as long as it’s at a venue the student with Down’s Syndrome likes, sweeping up after “regular” people is still “good enough.”

Back to the syllabus discussion: Amber, a 24-year-old student with DS, is quoted as, after the teacher’s “get an A” comment, “[giggling and looking] at her paper, [saying] ‘This is cool.'” I suppose it’s cool if you’ve never had the opportunity to get an A, or even any real grade, but…oh, wait a minute…

In her Employment Readiness class, the teacher at JCTC plays games with students, role-playing or pantomiming a specific skill they can do, like sweeping. Excuse me? I wasn’t aware this was Theater 101. To quote Tom Hanks: “You’re role-playing? You’re role-playing? There is no role-playing in college!” In Kathie Snow’s words, “Life is not a dress rehearsal.”

A spokesperson for JCTC says of these classes, “The goal is not to get an A…the goal is to be included….” Okay, so where are the students without disabilities. Just in case you’re confused: Inclusion does NOT mean putting a person with a disability into a separate class or program and then essentially saying, “Okay, we put you in here, you’re included, we’re done.”

The student I mentioned earlier, Amber, is described in the article as having placed her bus pass on the corner of her desk the first day, which I took to mean she then forgot it. What happens now? Her mother comes every day to pick her up. (????!!!!)

BECKER COLLEGE, NEW YORK:

A New York Times article describes Katie Apostolides, a 23-year-old college woman with Down’s Syndrome, as she begins another day of her “inclusive” college education. She is described as “peppering” a professor with questions before class, such as whether she will have to take notes and whether there will be homework. The unwritten message? “Kate is not smart enough to understand homework and notes are an everyday part of college.” The article also makes a point of Katie’s not remembering her SAT score (unspoken message: “She’s too dumb”), and quotes the professor as “kindly” explaining, “Katie really is a devoted student.” Unspoken message: “Even though she asks me repetitive questions and takes up my time.” (This professor was also described as encouraging Katie “not to spend all her time waiting with her” (the prof).

In the article, students with disabilities like Down’s are described as “more challenging…colleges must not only deal with how students learn, but the limit on what they can absorb.”

In this article, it is admitted that most of these programs “do not have a residential component”–how, then, are these students supposed to have a “normal” college experience? Also note the unspoken message: “We’re not sure yet how to make our residential aspects workable for these people.”

MERCER COUNTY COMMUNITY COLLEGE, TRENTON, NJ:

This program is a little better. It appears to be inclusive, according to the same article, because students with intellectual disabilities participate in classes with peers without disabilities, are required to read, write critiques, watch films, and other standard college activities, and can work toward a real associate’s degree in 66 fields. But “they must first pass so-called foundation courses in reading, math, and writing.” There’s that earning thing again: Prove to us you really are literate and able to do math, or you can’t be here. The program at MCCC is also called the Dream Program, which is somewhat demeaning.

The NY Times article also points out the “struggles” of 24-year-old John McCormack, a student with DS who goes to MCCC. The writer points out that among students without disabilities, John “needed help spelling ‘orange’ on a form…got confused by a copier machine sign, thinking it read $1 instead of 10 cents…and was afraid to ask for help ordering a cheeseburger.” But, the writer says, “A get-to-know-you session with just the Dream group went much better.” The writer seems to be pointing out a still-existent line between “us” and “them” where John is concerned, and points out many of his weaknesses unfairly.

VANDERBILT UNIVERSITY, TN:

Vanderbilt’s “Next Steps” program for students with intellectual disabilities costs $10,000 a year for two years, but only admits six to eight students a year. Can we say “disproportionate?” Plus all the other crap I have described in the above numbered list. Students are also required to sign an Independent Learning Contract (I don’t see students without disabilities required to sign contracts, do you?)

UCLA, CALIFORNIA:

UCLA’s Pathway Program for students with intellectual disabilities features a Web page. “Student Stories” is one of its links, but only one student story is featured. The student, Lauren, has a disability, although it is not visible and not specified in her video presentation. Her presentation includes slides captioned with, “I learned about riding the bus” or “living in my own apartment and doing chores.” One slide also has a caption: “At first I had issues with my roommates and getting upset.” The unspoken message: “Of coruse she got upset at roommates; she has a disability!” I also noted that Lauren herself does not talk to viewers at all in the presentation. Riding the bus, learning to do chores, and menial jobs such as filing are painted as major accomplishments, whereas a student without a disability would naturally learn to use public transit on his or her own, not be “coached” on “not getting upset,” and would consider chores a natural part of the day.

One program (may not be UCLA), allows viewers of its Web pages to see a student’s schedule. It includes transportation via paratransit (no need to say more).

The College Connections website gives tips to students with disabilities such as:

  • Behavior problems will NOT be tolerated
  • Try not to fall behind on your assignments (unspoken message: We know you will because you’re disabled and incapable, but do us a favor and don’t act like it)
  • Budget your time (2 hours a day for TV) Yes, all students need to learn time management, but nobody ever told me when I could and could not watch TV.

Now, I’m not saying that all these programs are 100% bad. As noted, some of them do allow students with disabilities to get real degrees. And my research shows that students with intellectual disabilities who do go to college can earn 1.7% more money than those who don’t. (But then again, considering the kinds of jobs they’re often still pushed into–one college programs requires training at an on-site campus food-packing facility, for instance), is that a real accomplishment?

We can do better. In the movie Mona Lisa Smile, Wellsley was described as “a finishing school disguised as a college.” Well, these programs are holding pens disguised as colleges, people.

Thank God, literally, I never had to go through the indignities of these programs, although mild disabilities have indignities of their own, which I will explore later. But just because I never went through them doesn’t mean I don’t care. I care. STOP THE POMP AND SPECIAL ED. Let’s get really inclusive–even if it gets our hands dirty. Parents: if you have a young adult at home approaching college age, don’t be fooled by what these programs promise. Unless your young adult really wants to be in them, don’t just dump them there. Do your homework, and push for real inclusion and real educations.

Give us all a real college experience! Then, you will have truly graduated from the school of inclusion.

Scaring the Crip out of You: Using Scare Tactics on People with Disabilities

Yesterday, I wrote about the phenomenon of letting children with disabilities get into trouble, or do something other than what they’re told (or forced to do, in some cases). I also wrote about the difference between appropriate and inappropriate discipline for children and young adults with disabilities. Today, I’m going to focus on one of the most inappropriate ones: scare tactics.

“You’d better cooperate at therapy, or I’ll spank you when we get home.”

“If you don’t do your exercises, you’ll never be able to walk.”

“You better start saving money for a wheelchair if you’re not going to exercise.”

“If you don’t work on your independent living skills, you will end up in a nursing home.”

“You need to practice brushing your teeth (or combing your hair, or whatever). Do you want people to laugh at you/say your teeth are rotten/say your hair is messy?”

“If you don’t meet your IEP goals this year, you won’t be able to be in class with your friends.”

Show of hands from any readers with disabilities–how many of you have heard these statements?

Show of hands from parents, guardians, educators, and others–how many of you have said them or others like them?

First of all, let me assure you: if you have said them, it’s okay. I have very loving parents, and sometimes, they used scare tactic statements like these (not in those exact words, but close). I know it was because they loved me and because of their own fear of what might happen if I didn’t do whatever it was they were pushing me to do. And I understand that, when your kid isn’t cooperating or behaving badly, you can get frustrated enough to use these tactics. Maybe, like my mom used to say, you think, “It’s the only way they’ll listen!” Maybe you’re just too shocked at your kid’s behavior to think through what you say. And yes, I did put my parents in this position as a little kid. My mother tells me that at age three, during occupational therapy, I started saying the D word out of frustration).  It doesn’t mean you’re abusive or don’t love your kid (or student, or whatever relation the child or young adult is to you). In fact, in a way, it shows your love. But these words hurt. And they’re the wrong way to show love or support to a child of any age with a disability.

Why? Well, let’s look at the first, and I think, most important reason. I’m sort of an amateur psychologist. People, their emotions, words, and actions, fascinate me. And it occurs to me that when authority figures use scare tactics, they’re really voicing their own fears. As in, “What if my kid does end up in a nursing home? What if he or she never walks, never talks, never ___? What will we–what will I–do then?” Fear is a natural emotion, and I condemn no one for it. But to project your own fears onto your child is counter-productive. It teaches them to be just as scared as you are–I feared nursing and group homes with a sick dread for years. And it paints you into a box. Who’s to say what will “never” happen? Who’s to say where your kid will or won’t end up–doesn’t your child get to make that choice, with your help when needed? And so what if your child or teen doesn’t walk or talk the “regular” way? Not everyone does, and we have assistive technology for that.

Reason two: Scare tactics are often anger-driven, negative, and therefore counter-productive, just as other forms of discipline such as spanking are. (To those of you who employ corporal punishment, now you know where I stand. We can argue in the comments section if you like). Now, my parents, and theirs before them, spanked, and probably used scare tactics, and none of us are horribly scarred. But the world is changing, and we’re all learning. And what we’ve learned is, anger-driven discipline begets more anger. It also begets hurt and resentment. As forgiving as I endeavor to be, my chest still burns when I think about my mom telling me about having to save up wheelchair money. Such an attitude may also cause your child to think, “My parents don’t care about the whole me. They care about my feet, my hands, my whatever. And whether they love me depends on how I act in therapy.” Failing that, the child may certainly think, whether you smile at them, do fun things with them, and so forth depends on their “cooperation.” It’s conditional love, and it’s the emotional equivalent of a loaded gun.

Reason three: Scare tactics may inspire one-way thinking from your child or young adult with a disability. As in, they’ll think, the one and only way they’ll get a home of their own is to learn X number of skills to others’ satisfaction. The only way they’ll walk “better” is to do these specific exercises (instead of, say, playing real games or sports, or coming up with their own fitness goals).

Reason four: Scare tactics place people with disabilities, of any age, in a position of powerlessness. Take, for example, the teacher who says his or her student can’t stay in the general education classroom unless he or she meets specific IEP goals. The real message there is: “You earn the right to be in my classroom, and if you don’t cooperate, you lose that right.”

I remember this happening to me once. I was in sophomore algebra, and my regular scribe threw her back out early in the semester. Instead of hiring a scribe with real training, the special ed program began sending in random students or Joe Schmos off the street, basically, out of an assumption that scribing just meant taking notes. One day, because of this, I got a horrific grade on a test. I began to cry uncontrollably. I was discovered in the restroom, taken to the special ed room, and left in the special ed kitchen to calm down. The message? “You’re hysterical. That behavior will not be tolerated, so until you can calm down, you stay here. Segregated.”

My chest is burning again. I’m going to yell, so bear with me. I am SICK AND TIRED OF BEING TOLD THAT PEOPLE WITH DISABILITIES HAVE TO EARN THE RIGHT TO NORMAL THINGS THAT OTHER PEOPLE GET BY VIRTUE OF BEING PEOPLE. PEOPLE WITH DISABILITIES ARE NOT PETS, PRISONERS, OR OBJECTS. THEY HAVE NOT DONE ANYTHING OTHER THAN UPSET YOUR PRECIOUS NOTION OF WHAT’S NORMAL AND ACCEPTABLE. JUST BECAUSE THEY CRY, YELL, MAKE BAD GRADES, OR ANYTHING ELSE DOES NOT MEAN THEY HAVE TO “EARN” YOUR RESPECT, PRAISE, OR LOVE. THAT LINE OF THINKING IS OLDER THAN MY GRANDMA! @!%#*#!

Whew. Better now. But I hope you got the message. We often treat people with disabilities as perpetual children, with an attitude of, “You can’t have what you like or want unless you earn it.” Let me ask: would you like it if you had to earn every shopping spree, dessert, or other way you treat yourself, by meeting a goal someone else wrote for you? Would you like to be punished with separation from the people you want to be around if you didn’t meet that goal? Would you like people holding those goals over your head?

No. Didn’t think so.

Reason five: Scare tactics have a sweeter, but just as dangerous side: rewards. As in, “If you don’t cooperate, X bad thing will happen (spanking, never walk, never talk, nursing home, get laughed at, etc.) But if you do, we’ll do something fun/you can have ice cream, etc.”

Now, at times, rewards can be appropriate. For example, I used to have to get BoTox shots, and I hate needles. So as a kid, my reward for getting through BoTox was a trip to the bookstore. If my parents had said, “It’s okay, honey, we’ll do something fun after this. Want to go to the bookstore?” that would’ve been fine. But what they said was, “We’ll only go if you don’t scream.”

Yes, I screamed the first time I had the treatments. But I never did it again.

So, you say, it worked. Yeah–but the unspoken message was, “It’s okay to cry, but not to scream. This expression of your emotions is okay. That one isn’t.” And, barring the fact that ten years old might seem old to scream: (1) When you’re phobic, what happens, happens. And (2), I felt censored. A reward should not be a carrot you dangle in order to censor a person with a disability in any way. Too often, I think, we approach people with disabilities like the rats in B.F. Skinner’s behaviorist lab–we pet them when they’re good, shock them when they’re bad. Or we say, “This cheese is based on your ability NOT to be bad” rather than, “This is your reward for doing something I know was hard and that you didn’t want to do.”

Stop the scare tactics. Stop treating your child or young adult with a disability as a “crip” whose behavior must be “fixed” along with the disability (which as we know, often can’t be “fixed.”) Stop the conditional love.

I hope this post encouraged you–even if it was a little scary.

Here Comes Trouble–and that May be Good: Discipline and Disability

Show of hands, readers. How many of you have ever, at any time in your lifetime, but particularly childhood for some of these:

  • Run away from your parent in a store or other public place?
  • Gone outside without parental permission?
  • Run with scissors–and lived?
  • Lied?
  • Back-talked a parent or authority figure?
  • Thrown food or an object, screamed, cried, or cursed, out of frustration, anger, sadness, or pain?
  • Made a huge mess with toys, fingerpaints, cooking ingredients, or other such things?
  • Gotten in a physical or verbal (or both) fight at school?
  • Run in the halls, slammed lockers, or otherwise acted loud and rowdy?

We all did–and I’m pretty sure it’s a safe bet that some of you are laughing as you read this list. Just in case you’re wondering, yes, I have done a few of these items too, as a kid and as an adult. Of course, most of us also faced the consequences. And unless you came from an abusive family–in which case you have my sympathies–then those consequences were probably appropriate. Let’s add another dimension to this, though. Would the same have been true for a person with a disability who did these things?

I’m going to make another radical statement: discipline and disability don’t go together well, and it’s not for the reason you’re thinking. No, I am definitely not saying that a child with a disability should never be disciplined, or that a disability is an excuse to engage in negative behavior. What I am saying is, for many reasons, children, teens, and young adults with disabilities often don’t experience discipline the same way people without disabilities do. Either they haven’t been allowed to push their limits, or when they do, it’s handled inappropriately.

I would hope you know me better than to think I’m telling you that bad behavior–sin, in my book–is okay. Lying, cheating, stealing, disrespecting parents, all of that–it’s not cool, with or without disability. But we all do it, and we all learn from it, unless we have disabilities. Take, for example, the hypothetical example of three-year-old Charity. Without a disability, Charity, a curious toddler, could easily run away from Mommy or Daddy when she shouldn’t, or go outside without permission. But if we put Charity in a manual wheelchair? Suddenly, that possibility is taken from her. She can’t get away from anybody. This means, of course, she can’t run out into the street and get hurt, or cause Mommy to have a heart attack when she loses Charity in Wal-Mart or the mall. But it also means, if Charity wants to explore her world without Mommy or Daddy right there? If she wants to get away from the playground bully pinching her or taking her toys, but can’t push her manual wheelchair fast enough? Well then, tough cookies.

Or, let’s pick another example, an older kid this time. Let’s say we have a student with a disability named Gabriel. Gabriel has an IEP stating he must reach a certain fitness goal by the end of the school year. Hmmmm…let’s call it a cardio goal, say, running a mile in 20 minutes (long time limit due to leg braces or any other walking issues). But suppose Gabe doesn’t feel like working on his goal that day? Or suppose the gym teacher says something like, “Go faster, Gabe!”, or his peers tease him. Gabe turns around and back-talks the teacher. Or he defends himself against the teasers by yelling at them or even getting physical.

If Gabe didn’t have a disability, most likely, he would be written up for back-talk and given a detention. He might be sent to the principal’s office for fighting, but ideally, the principal would understand it was self-defense and mitigate the consequences based on that. At least, I would if I were the principal. Yet because Gabe has a disability, he gets taken aside and scolded in this way: “Now, Gabe, you know better than that. You need to work on this goal so you can walk better and you should be respectful to the people trying to help you.” And the bullies? As Kathie Snow wrote in her recent brilliant article, “A Human Being Issue” (from which I got the major idea for this post), Gabe’s behavior would be blamed on his disability. As in: “Of course he hits and acts out. All kids with X disability do.”

What a flipping crock.

In addition, I believe children and young adults with disabilities are not given the option to get into trouble if they want to because of the “good little cripple” paradigm. That is, people without disabilities assume that a disability is some sort of permanent safeguard against negative or sinful behavior. Let me assure you from personal experience, it’s not. And although we would prefer that no one behave badly, it’s somewhat demeaning when we assume, “Belle would never be RUDE. The poor thing has autism,” or “Hannah can’t be loud and rowdy. She has spina bifida.” It’s just as bad, if not worse, than looking at a person with a disability and automatically assuming he or she will protest everything you do, angle for money or special privileges, or cause you trouble.

In changing the paradigm of discipline and disability, I think we need to do a few key things. First, we must understand children and young adults with disabilities are going to push their limits. It’s part of human nature. Of course little Johnny is going to run away from his mom. That’s a risk Mommy runs if she allows him to be mobile by giving him a power wheelchair or other freeing mobility device. But is it a better idea to confine him, so that he can’t get away, even if he wants or needs to? Of course Monica might lash out and say she hates her menial job, or back-talk an authority figure. But in that case, aren’t we somewhat glad that her disability doesn’t preclude her ability to stand up for herself, even if she may need to be reprimanded for the behavior itself? I underline, NOT the disability, as if it caused the behavior–only the behavior. The authors of Shut Up about your Perfect Kid mentioned that it can be considered a milestone if a child with autism tells a lie. Why? Because it means he or she has learned to view the different perspectives of different people–the perspective it takes to make up the story, tell it, and react to how it makes oneself or others feel. No, lying is not acceptable in 99.99999% of cases. Yet, we can say to the child with autism, “I’m unhappy that you lied, and there will be consequences. But I’m happy that you’re thinking about other perspectives” (or something like that).

Second, we must remember: if you wouldn’t discipline a child without a disability in X way, don’t do it to a child who has one. The extreme example, of course, would be smacking the kid or yelling at him or her to “quit whining.” But more commonly, when parents or other authority figures discipline people with disabilities, they do so with patronizing, patient-impatient reprimands, blather about goals the child or young adult is “breaking,” or other such nonsense. If you would put your young child without a disability in time-out? Do that for your child with a disability. The same is true for confiscating a teenager’s television time or phone time.

Finally, and most importantly: Don’t assume people with disabilities are out to cause trouble or break rules. But if they do, react just as you would to a person without a disability, within reason (for example, if a person with a disability ever got into serious trouble with the police, I would expect the police to be understanding and flexible with modifications needed, such as understanding that a person with autism may not make eye contact because he or she never has–not out of guilt). And where appropriate, when they do, chalk it up to experience. As the mother in the classic movie The Sandlot would have said:

“Let them climb trees, hop fences…get into trouble, for crying out loud!”

Get a Life: The Tricky, Sticky Phenomenon of the “Life Skills” Curriculum

Hello, readers,

Life skills in school or no life skills in school, that is the question. Whether ’tis nobler for students with disabilities to spend most of their time in school learning to dress, feed, and wash themselves, the denominations of coins, and how to speak on a telephone–or whether they, and we, should oppose this construct, and by opposing, end it.

With apologies to Shakespeare, I think Hamlet got it right: that is the question. What is the life skills curriculum, and is it as necessary as we think it is? To push further, why do we think it’s necessary? And if it is, how can we make that curriculum more respectful, more geared toward the dignity, of the student taking it?

Okay, first: the “life skills curriculum,” often also known as the “functional” or “occupational” curriculum, is a series of skills taught to students with disabilities in special education settings (including segregated classrooms or “special” schools). Skills may include shopping, cooking, doing laundry, making one’s bed, and handling money. For those students with “severe” disabilities, life skills may include the basic basics–feeding, washing, dressing, grooming, and cleaning up after oneself. I saw examples of these skill classes in my own high school–and yes, they took place in a segregated classroom. And even then, I thought: Okay. These students have severe disabilities. Maybe they can’t move around well, or maybe they’re low-functioning, so maybe they need these classes. But something’s wrong here, even if I don’t know what it is.

As my high school career continued, I got an idea of what was wrong. The “special” students were almost never seen outside their wing. But more than that, the school seemed to draw a thick, heavy line between “us” and “them” based on curriculum. My English classes consisted of World, American, or British literature, advanced grammar, and reading novels and poetry. The “special” students had Occupational English, where they learned to talk on the telephone, write basic information, and do other activities that would’ve bored me to tears, literally. My math classes were algebra and geometry. Theirs involved learning the denominations of and counting money. Although I admit, on days when I’d had it up to here with math, that sounded pretty good to me! 🙂 Occupational social studies must’ve been more of the same, though I don’t remember, and the same goes for science. Outside of class, these students’ “life skills” involved baking cupcakes or cookies, or going to the gym to practice for Special Olympics or–get this–wash athletes’ jerseys and jock straps. Memo to all male athletes: unless you’re my husband or my son, I am NOT touching your jock strap!

When I was a senior, the school yearbook dedicated two whole pages to “special ed,” which they titled “Simple Skills.” Looking back, I find the title demeaning. But that’s because the skills themselves are demeaning. Lately, I’ve been asking myself this question: no matter what your IQ or disability is, should you spend your school time learning the difference between a quarter and a nickel? How to have a phone conversation? Or–oh, Lord, help us all–how to use the bathroom or use your “indoor voice” and manners? Yes, they teach “special” students this–kindergarten skills–in middle and high school.

And folks, it BURNS ME UP.

Teachers, administrators, aides–the “experts”–all have excuses for this. “They’re very low-functioning,” they say of their students. “They’ll never learn otherwise,” they say. “They can’t understand,” they say of their students in relation to “real” classes. And for awhile, I bought these excuses. As a student in public school, it seemed to me that if your mental age was four, even if your body was ten, it would be unfair and cruel to expect you to do things a ten-year-old did. Thank goodness, now I know better. And the experts should, too.

I’ve already touched on the “mental age” issue. I’m not so sure I buy it anymore. After all, if a student with a disability is sixteen, what good will it do to place her in a class where kids act like six-year-olds or eight-year-olds, and then scold her for not “acting right?” Don’t you think that if you let her be with other sixteen-year-olds, with and without disabilities, she’d learn to be sixteen? Maybe she wouldn’t act exactly like your definition of a typical sixteen-year-old, but it would be a heck of a lot better than treating her like a kindergartner. The chronological age is how the child or young adult should be treated first, because the chronological age has nothing to do with the disability. And the non-disability traits are the ones that deserve consideration first.

That brings me to the “basic basics” issue. Why, oh, why, are we teaching middle- and high school, or even elementary school kids past kindergarten, how to use the bathroom and clean themselves? Why, oh, why are we teaching adults with disabilities how to brush their teeth, wash their hair, and dress themselves? And if you think this doesn’t happen in public schools, here’s a reality check. On my campus’ library shelves, there sits a book called Life Skills for Special Children. It is meant as a textbook for special education teachers, and pictures silouettes of several children on the cover–but the one child–that’s singular–with a disability is in a wheelchair. (So, all people with disabilities need wheelchairs?) And if the cover’s a little disturbing, the inside is more so. Each activity–including the basic basics–is broken down into a worksheet with illustrations, much like you’d give a first-grader. For example, let’s take the worksheet on washing one’s hair:

First, it’s broken down into steps: (1. Rinse hair (2. Shampoo (3. Get soap out (4. Dry (5. Comb. One per line, double-spaced, with a corresponding illustration of how to do these things. On the opposite page is an exercise: who is done grooming their hair? A girl is shown with shampoo still in her hair, saying, “I’m done!” Another shows a girl with dry, but tangled hair. A third shows a boy with dripping wet hair. And they all say they’re done washing and combing. The “right” answer, of course, is the person whose hair is BOTH combed and dry.

The textbook has no specific grade level listed, so I suppose it could be used with little kids. But whether it is or not: what was up with that activity? I’m sure the textbook writers meant well (see previous post). But in crafting that page, and the accompanying exercise, what they’re really saying is that children with disabilities (a) must be taught a basic skill in several small steps, one at a time and (b) children with disabilities aren’t smart enough to know when they’ve completed the skill, even after they’ve been taught.

But the problem doesn’t end with the fact that high school students are spending their days in classes learning what they could and should have learned at home. Let’s take, for instance, exercises like:

  • A page instructing readers on how to have a phone conversation and what to say in each
  • A page that asks readers, “Which one is an emergency?” Examples include a small cut, a small scrape, a headache, a broken leg, or falling from a high place. What does this exercise really say? “People with disabilities are so dumb, they’d call 911 if they cut their fingers.”
  • A page on which to write one’s name, birthday, and favorite things (kindergarten-level exercise)
  • A page identifying different monetary denominations (please write the correct money value in the blank. Wait–didn’t we learn this in first and second grade?)
  • A page explaining how to keep out of dangerous situations such as drug use or getting into a car with someone you don’t know. Now, I agree: everyone needs to learn this one. And I agree: people with disabilities can be vulnerable to unscrupulous people. But so can we all. And it doesn’t help the situation when, instead of explaining things as you would to a young adult without a disability, you go up to an 18- 20- or 30-year-old and say things like, “This is what a bad guy is. Now, practice saying ‘leave me alone.'” Of course, I’m not advocating the use of graphic detail, either, but you get the picture.

So, what often happens in these “life skills” classes? Several negative outcomes have the potential to happen. For example, because many school districts don’t “age out” students in special ed until age 22, many of these students spend years learning the same life skills over and over. (And why do they do that? Uh, maybe because they’re BORED? Or maybe they’d rather be doing something else, with other kids their own age who learn real material appropriate to their age?) Or, for example, a student whose life skills class goes to a Wal-Mart Supercenter to learn to shop for groceries, may be continually considered “not ready” to check that goal off a list. So what happens? They go back to gravitating toward toys, games, and DVDs in the store the next year, because they weren’t really taught about shopping for other items. They were just given that as an IEP or other goal. I should add, too, that oftentimes, parents who raise children with disabilities with an attitude of “can’t”, perpetuate this idea that, “We go to the store for toys,” no matter how old the kid really is. My aunt is a special education teacher and has seen it happen. So really, the parents are also underlining the idea that their children need “life skills,” but not really giving them any.

So, what should we do instead? This is, as you might have guessed, my favorite part of any post. I have a few ideas. Instead:

  1. Remember that kindergarten is for kindergarten. If you want children with disabilities to learn sharing, manners, or the difference between indoor and outdoor voices, teach them at young ages–the age you would for a child with or without a disability. If they forget, do what you’d do for any other kid–remind them. Don’t call an emergency IEP meeting and slap them in a life skills class.
  2. The basic basics–showering, brushing teeth, going to the bathroom? If at all possible, these can and should be learned at home, with the help of parents, not therapists or aides, the way everyone learns them. If therapists absolutely must be involved, have them teach the skills in a natural way that doesn’t demean the person learning them. And if a young adult’s hair is messy? If they don’t brush their teeth three times a day? Oh, yeah, like we all really brush our teeth that much–and have never, ever had a bad hair day? I think not. (Messy hair is actually fashionable).
  3. Skills like talking on the phone? Counting money? Stranger danger? As with #1, teach them, as much as you can, at the time you would appropriately do so for students without disabilities. Let students with disabilities, particularly older ones, learn from peers and real friends. For example, if a student with a disability hugs too hard, too much, don’t take them aside and in a patient-impatient voice, say, “What did we learn about hugs?” Let their peers say something kind, but directive, like, “I know you’re glad to see me, but don’t hug so hard,” or, “Thanks, but I don’t feel like a hug right now.”
  4. Especially for middle- and high-schoolers, consider the idea of auditing. Of course, my preference would be that students take the same classes as peers without disabilities as much as possible. But even if the disability is so “severe” that parents, the school–and the student herself–doesn’t know if she can handle “regular” high school English or math, don’t kick her out of the class. Let her audit–listen. Take in the “real” class. Be with her friends. Remember, IDEA (the Individuals with Disabilities Education Act) entitles everyone to a free, public, and appropriate education. And I personally don’t see how it could be inappropriate to let students have as much time in a general ed classroom as they can. They might just–gasp–learn something!
  5. For skills such as shopping, cooking, or laundry: Keep it real. Remember that people without disabilities still nuke frozen dinners, cook with Hamburger Helper, or leave the laundry in the hamper for more than one day. As much as is possible, let the student lead skill lessons by doing what they’re interested in first. Let the skills unfold naturally–at home, with a friend, or yes, in therapy, but not in an artificial environment. (For example, a real kitchen, instead of a small “play” kitchen or cooking area in a hospital or therapeutic facility). And if the student messes up a few times? C’mon, don’t tell me all your laundry never came out pink. It’s no reason to say “you’re not ready” and then “demote” them into an unnatural, artificial life skills class.

Let’s get radical, people. Instead of jabbering about life skills, let’s do what we can to give students with disabilities a LIFE.