Whoa, Baby: A Disability Double Standard you Have to See to Believe

Hello, readers,

To start today’s post, I’d like to introduce a term that may be new to most of you: paraphilic infantilism. If we translate that from medical-speak, paraphilic infantilism bascially means being an adult baby. That’s right–I’m talking about fully grown men and women who do not choose to live as adults. They choose, instead, to live as perpetual infants or toddlers. I’m talking cribs, bottles, baby food, infant and toddler toys, the whole bit. Many of these adult babies even wear and use diapers. “I love the feel of a warm, wet diaper,” a twenty-six-year-old adult baby named Riley, featured on TLC’s My Strange Addiction, said in the half-episode dedicated to her lifestyle. (And by the way, she used to be a he–Riley is transgender).

Another adult baby, Stanley, who was thirty at the time, was recently featured on the new TLC show My Crazy Obsession. I could spend a whole new post delving into what draws television to these bizarre addictions, obsessions, and over-the-top collections. After all, I am a bit of an armchair psychologist. But one, that would be off topic, and as a teacher, I know better than to go off topic. 🙂 Two, it’s more important, I think, that we focus not on why network TV is drawn to these stories, but the fact that it is drawn to them at all.

I know the “Sunday school answer” to why the world is drawn to such situations: the world is fallen, flawed, and fascinated with what the Judeo-Christian tradition–among other traditions–calls sin, overindulgence, self-centeredness, and greed. But Christians are drawn to these situations, too; I know because I used to be one of them. Do we tune in because we want to see if people truly act that bizarre in real life? Because we want to see what the next addiction or obsession is? Or–and this one, you won’t like–because some of us need these stories to validate the increasingly relativist thinking of our world?

Let me explain that last one, and to do so, let me use the example of Stanley. This is where the “double standard” part of the post comes in. We’ve established Stanley is an adult baby, content to spend large portions of his days “playacting,” as he calls it, as a two-year-old. What I didn’t say is, Stanley is also a very skilled man. Adult baby websites that sell adult-size cribs, changing tables, and other such furniture exist. But buying these things online can quickly get expensive. So Stanley builds his own furniture.

Did you catch that? A man whose lifestyle revolves around acting like a baby, can build quality furniture.

If the story ended there, I might be inclined to accept Stanley’s lifestyle. A fairly recent online news story reveals this man had been through “childhood abuse” and “trauma,” so maybe the adult baby thing is his coping mechanism. And Riley, the woman I mentioned earlier, also endured bullying and abuse throughout her/his life for being transgender, among other things. I don’t judge these adults based on lifestyle alone. I believe they are in rough situations, are choosing unhealthy ways to cope, and need gentle, understanding, and intensive psychological and emotional help. What I condemn about the adult baby lifestyle is this:

Stanley can build quality furniture. He could make a very decent living doing so. Yet:

This man receives $800 disability checks every month!

And I’m betting he’s not the only adult baby to draw SSI funds, either. For what? A disability? I. Don’t. Think. So!

“But Chick,” you tell me, “you just said these people need intense psychological help. Doesn’t that mean they’re disabled?”

No.

Why, you ask? A number of reasons:

1. It may be a coping mechanism, but at its core, the adult baby lifestyle is something that is chosen, of the adult’s free will, and enjoyed. I have yet to meet a person with a real disability–physical, cognitive, or yes, psychological, like bipolar disorder, PTSD, or OCD–who enjoyed having it. I certainly don’t enjoy cerebral palsy. I cope, but I’d be the first to admit, if I didn’t have to live with it, I wouldn’t.

2. Let’s look at the definition of “disability,” shall we? I’m partially quoting from Heward, the author of my special education text. A disability is an impairment significant enough to interfere with daily life and/or impede physical, mental, or other skills. (And no, “disability” and “impairment” are not interchangeable). “Impairment” would be something like, poor vision that needs glasses. If you can get glasses and never have another problem living daily life, then needing glasses does not necessarily constitute disability). But I don’t see these adult babies leading impeded lives. They’re able to function as adults, when and if they choose. Their physical, mental, emotional and other skills are not impaired in any way. Psychologically, they may be living unhealthfully, but they don’t exhibit symptoms such as phobias, depression, mania, and so forth–psychological conditions that are truly disruptive to daily life. Therefore, by definition alone, I refuse to say these people have disabilities.

3. If they chose, these adult babies could get help, and perhaps change their lifestyles. I’m not saying they should be forced to do so–it’s a free country. And I don’t know what it’s like to choose this coping mechanism, so I’m not going to say Riley, Stanley, and others could just “get over it, already.” But the key is, the adult baby lifestyle can be changed. Many disabilities can be improved, but they can’t be cured. They can’t be gotten rid of or “gotten over.” They are permanent.

Senator Tom Coburn (R-OK), questioned Stanley’s right to $800 disability funds, based at least in part on the rationale I just gave you. And well he should. Coburn lost the battle; Stanley still receives those checks. But I’m glad he questioned that judgment, because if we allow that kind of capitulation to the adult baby lifestyle, we’re also committing a major double standard.

What do I mean? I’ll put it as plainly as I can. In this country–in this world–some people with disabilities live who cannot function above the level of a two-year-old. They didn’t choose that; they were born with or acquired severe disabilities that resulted in major implications for their lives. But when we see them–the grown man or woman who needs to be fed, dressed, and wiped in the bathroom–we often react with pity. We say, “Thank God that isn’t me!” Or we respond with resentment: “Why are my tax dollars going to care for people who contribute nothing to society?” For heaven’s sakes, we even choose to abort babies, if we know they’ll be born with those kinds of disabilities ahead of time!

But when we see an adult baby, who chooses to live as if he or she cannot function? Who wants to be fed, dressed, and tucked in? Who–Lord help us all–WANTS to urinate and defecate in his or her pants? We say, “That’s their choice”, or “They’re only doing it because they were bullied; it’s not all their fault.” We even–I need an antacid–SAY THEY SHOULD BE GIVEN MONEY TO KEEP UP THE LIFESTYLE.

Again, I don’t condemn the lifestyle itself, if for no other reason than I don’t know what it’s like to walk in those shoes. But such federally mandated, widely accepted capitulation? Glorification of that choice on television, when people with real disabilities have to live like that (they didn’t get to choose?) When people with real disabilities are unjustly stigmatized, punished, or shuttled out of “normal society” because we don’t want to cope with what they need, want, or think?

That, my friends, needs to go the way of dirty diapers.

Advertisements

The Survivors’ Club: A New Way to Elevate the Esteem of People with Disabilities

Hello, readers,

I’m still working my way through a graduate-level class on special education and including students with all kinds of disabilities in the general education classroom. This week’s chapter concerned people with multiple/severe/profound disabilities, including those who have experienced a traumatic brain injury, hereafter known as TBI. My professor likes to post articles related to the disabilities in the chapter of our text, and then ask everyone to pick an article and reflect on it. I chose to read a PDF version of a booklet called “Is This Normal?” written for survivors of TBI and their families. And the more I read, the more I zeroed in on that all-important word: survivor.

I love that word.

First of all, it’s one of the only positive generalizations for people with disabilities I’ve come across in quite awhile. You already know some of the others–“incompetent,” “low-functioning,” “patient,” or “client.” Words that diminish the person with a disability so that he or she becomes, at best, a helpless being in need of perpetual care, and at worst, a commodity. So imagine my pleasure when I saw people with TBIs referred to as “survivors.” That brings up a whole new connotation, doesn’t it? An overcomer. Somebody who’s strong. Tough. Tenacious. Brave. Resourceful.

Now, I know in the throes of a TBI, a survivor might not think of him or herself in those terms. Often, I’d argue, they don’t have time to do so. TBIs often occur in a blink, as a result of an auto accident, a bike accident, a fall, or an illness. I actually go to church with a woman whose sister recently suffered such an injury. She’s recovering very well, but as I said, I doubt she thought of herself as a survivor right away, if she’s gotten to that point yet. But whether or not the survivor of a TBI thinks along those lines, that is what they are. Why? Because they made it through something that’s often fatal–as in, others die from it, people–to millions of others.

So, after our word study, let’s bring ourselves back around to the main point. People whose disability (ies) come from a TBI are called “survivors,” as well they should be. They have quite literally survived. Their disabilities are not congenital, or even acquired in the same way other acquired disabilities come about. No, theirs came most often after significant physical trauma. So we call them “survivors.” But other people with other disabilities? We call them “patients.” “Clients.” “Special.” “Low-functioning.” We judge them by “mental age” and “functional analysis” tests.

Yes, people with TBIs can be, and are, judged this way too, and given the same negative labels. And they shouldn’t have to take that off the able-bodied world anymore than the rest of us do. But what I’m getting at here is, they have an alternative–a distinction that can be positive if the people around them allow it to be. Sure, living with a TBI–or caring for or teaching a person who has one–can be extremely difficult. I can’t even begin to imagine how painful, especially for the person with a TBI, who knows on some level that her life has changed, often irreversibly, and people are reacting negatively to her “new normal.” But if we treated them as people first–and more important, people who survive and thrive–how much easier would that new normal become?

And then I thought, why can’t we do that for every disability, not just TBI?

In case you’re confused, let me explain what I mean. I am well aware that life with a disability “is not a brave struggle,” as someone once said. No one with a disability, myself included, wants to be called “brave” unless he or she truly feels courageous, and we don’t want to be seen as perpetually suffering or struggling. I am also well aware that because many disabilities are congenital or not acquired through trauma, a lot of people with disabilities have not literally “survived.” I do not, in any way, mean to take the distinction of literal physical survival from anyone. But think of it this way:

Whether or not we’re aware of it, disability or not, we all get up every morning having survived. We get the gift of another day, even if all we “survived” yesterday was a bad day at work, a towed car, a screaming kid…whew, I’m starting to think those things aren’t so insignificant after all.

Now, look at the people with disabilities in your life, or the ones you’ve met, seen, thought of, or heard of. What have they survived? As a “veteran,” I can give you a small glimpse.

We’ve survived being teased, misjudged, and underestimated.

We’ve survived comments like, “Don’t expect too much of her.”

We’ve survived misdiagnoses and getting the brush-off from the medical community.

We’ve survived–and survive every day–knowing that there are some things we might never get to do. And knowing that sometimes, such knowledge will hurt.

We’ve survived being dependent on others, some of whom would rather not have to deal with us. We’ve survived patronization, exploitation, and downright cruelty from some of these people.

We’ve survived the stereotypes–“All people with CP have mental retardation.” “All people with autism cannot speak.” You fill in your own.

We’ve survived years of the waiting game–waiting for services, waiting for legitimate help–for crying out loud, waiting for real lives!

And that’s just a few of the items on the list, folks.

The Bible says that each heart knows its own pain. So, no matter what your disability, I believe you can consider yourself an intrepid, resourceful survivor who, in that respect, deserves the adjective “brave.” And if you don’t have a disability? You’ve survived something, too. Your heart knows what it is, because this human life is tough, baby. No wonder Christians compare it to a race–the Boston Marathon times infinity, more like!

So today, whatever you’ve survived, whether or not it involves physical trauma, celebrate your status as a member of one Survivors’ Club or another. And instead of minimizing the lives and experiences of people with disabilities? Welcome them into the Survivors’ Club, too.

Whatcha in For?: The Disturbing Parallels Between Disability and Prison

Hello, readers,

I love theater in all its forms, particularly Broadway. I grew up singing Disney songs like a diva and quoting Mary Poppins and The Sound of Music line by line–with the British accent. Among the accents I can imitate are (in no particular order):

-British (King’s English and Cockney)

-Southern (redneck and Steel Magnolias genteel)

-Australian

-Transylvanian

-French

-Spanish

-German

-New Jersey

-Brooklyn

-Long Island

Plus a passable Irish, a somewhat muddled “Jewish mama,” and a couple others I’m working on. Because of this, and my penchant for creative writing, I used to get called “dramatic” as a kid. And I freely admit, when I’m passionate about something, I can overshoot or exaggerate. But I don’t think it’s exaggerating at all to say that for many people with disabilities, life can and sometimes does closely resemble prison. At the very least, it resembles the “holding pattern” in which prison often puts people. And most often, these people with disabilities have committed no crime other than flaunting society’s idea of “normal.” (No, I am not speaking of the person with a disability who has actually broken the law. And yes, I realize the attitudes of police, the conditions of jails, and other aspects of penal life can be especially difficult for those who do. But that’s a separate topic).

What makes me think having a disability can be similar to living the life of an inmate? Well, first, let’s take a look at the language involved.

In my Special Education textbook, there is a cartoon in one of the early chapters, where IEPs, special ed teams, and other “services” of the educational system are discussed. The cartoon shows two kids in jail–striped suits and all. One is in a wheelchair. The kid without the wheelchair looks at the other kid and says, “What are you in for?” The kid with the wheelchair says, “Cerebral palsy, but they say with good behavior, I could be out in 3-5 years.”

Out of what? Special education. An exaggeration, you say? Not exactly. As we’ve already discussed, nothing in Disability Land is a permanent placement, and sometimes, kids get special ed hung over their heads as a threat–spoken or unspoken, conscious or unconscious–if they do not behave the exact way the “system” wants them to. So the cartoon, while mildly funny, can actually be seen as too true to be funny.

Let’s go deeper. A common word used in connection with therapy and other services for children or adults with disabilities is “released.” As in, “released from therapy,” most frequently, but sometimes, “released” from special ed or other services such as Vocational Rehab.

But we also talk about prisoners getting released. And just like with prisoners, we see release as a good thing for people with disabilities. As in, “This is great, sweetie; you got released from therapy.” Or sometimes, “She’s been released from our services” (unspoken message: We don’t have to deal with her anymore–whew!) Or even, “There’s nothing more we can do, so we’re releasing your child from therapy.” (Unspoken message: We’ve used up our resources. And sometimes, that comes with the other message: We’re not willing to dig any deeper for solutions.)

Another disability-related cartoon that can be found if you search Google Images shows several people with disabilities in a daycare center. The caption reads something like, “We now have basket-weaving!” And a sign on the wall reads, “Keeping the Handicapped off the Streets.” A satire of the fact that we don’t want people with disabilities on our streets, out in public–just like we want to keep criminals “off the streets.”

If the language and cartoonish, too-true-for-humor plays on words don’t convince you, let’s delve deeper into the disability-related environment. Think it through, here. For too many people with disabilities, this is reality:

  • The person with a disability is at the mercy of the caregiver or aide’s schedule. In other words, that “helper,” that “able” person, gets to decide when the person with a disability goes out into the real world. Rather like the prison guards supervising inmates in an enclosed yard or recreation room or area. Especially since sometimes, the necessity of calling ahead for paratransit rides and aide assistance means there are only certain places the person with a disability can go.
  • As mentioned, in many places, especially schools and colleges, children and young adults with disabilities have sanctions leveled against them for “bad” behavior that, outside of Disability World, would be considered normal behavior (i.e., a college student skipping class–and no, I am not saying that’s acceptable, but it is NORMAL.) Rather like prisoners being placed in solitary or otherwise punished for what often is unacceptable behavior, but sometimes wouldn’t be in the outside world.
  • Most people with disabilities have, at one time or another, lived on SSI funds–sometimes not by their own choice. This reminds me too much of prisoners being given a limited account, and a limited number of items they can actually purchase.
  • Many people with disabilities are limited to menial or “sheltered” jobs for which they are paid compensatory wages–rather like prisoners who may or may not be paid to do laundry, kitchen work, and other unskilled labor.
  • Stereotypes of people with disabilities may state that, like prisoners, people with disabilities are limited as to what media they can watch and understand (i.e., a couple of cartoon stations on TV) what they can read, and what they can wear
  • Some people with disabilities actually do reside in group homes, shelters, or other places that do strongly resemble prisons, with all the physical, verbal, emotional, and even spiritual abuse that entails for them (including rape or being locked in closets).

Like prisoners, some people with disabilities also use particular slang, often to define their own culture or groups. I couldn’t find many slang terms, but did find a few:

TAB: Temporarily able-bodied (also MAB, for “momentarily”)

Walkie-talkie: A person with a disability who can walk and talk

Bowling pin: Couldn’t find a definition, but may be a slang term for the cane a person who is blind may use

Sped or sped lite: Special education or a “lite” form where the student has more opportunities for inclusion

Reg: A person without disabilities (for “regular”)

Wheelie: A person who uses a wheelchair

I also looked up some prison slang, just for fun. Some of these, you may be familiar with, such as the use of “screw” for “guard” or “cop.” Others include (apologies if I get some wrong):

-Beef: What you’re in for

-Bum beef: You’re in, but innocent

-George: An inmate whose word is good, who won’t squeal to cops

-Lifer: A person serving a life sentence

-Tom: An inmate who will squeal to cops, whose word is bad

-Fish: New prisoner, doesn’t know the ropes

-Job: Sentence length

-Bit: A short sentence

-In the car: In on a deal, especially a drug deal

-Catch a ride: You ask a fellow prisoner to “catch a ride” if you want to get high from their drugs/if you know they know where to get drugs, and want any

Oh, this is my favorite:

CONTRACT: A written agreement between a prisoner and administration which allows a prisoner to leave a detention unit under probation-like conditions (sounds an awful lot like a behavior or work contract to stay out of special ed or leave the group home!)

My thanks to the author of the Web page, prisontalk.com

 

I’m feeling creative today, so I’d like to add some originals–what “Disability Slang” might look like with a prison spin. Remember, I live with a lifelong disability, so I’ve seen or been around some of this. Here we go:

-Shackles: Leg braces

-Short shackles: Leg braces that end at the ankle

-GLG: Stands for “good little gimp.” My personal slang for someone who kisses up to special ed, service, or other staff (note: this does NOT mean being courteous. It literally means being a sycophant). In “bird-related” slang (see below) I might also call this person a Turkey (could fly, but chooses not to/allows self to be “eaten”)

-Pedigree: My personal slang for your papers–your IEP, your IHP, etc. Because sometimes, the able-bodied treat us like animals.

-Dork slayer: Crutch (or any other walking assitance like a cane. Borrowed from police slang. People who use these have the fortunate advantage of smacking idiots with something that leaves a mark, if they want to. Not suggesting for one minute that you should, but…)

-Hard Egg:  Personal slang for a person with a disability who, no matter what, refuses any modifications or help (not the best idea, although I can sympathize)

-Soft Boiled: Exact opposite. Someone who accepts modifications to the point of taking services they don’t need or, more importantly, don’t want.

-Tiger: Personal slang for any person, especially a parent or caregiver, who truly wants what is best for the person with a disability, cares about what that person thinks, and will make what needs to happen, happen. In honor of my mom, the ultimate Tiger Lady.

-Kitten: To go along with above–personal word for a “newbie”; a parent or caregiver who’s new to the school system or other systems, and might get talked into services or treatment that would demean or hurt the person with a disability. These people need to be looked out for and shown the ropes, not ridiculed. May need help from a Pointer (see below).

-Pointer: Good companion for a Kitten. Knows the system, knows who to trust or not trust, looking out for the person with a disability’s good.

-Put bull: Contrast. This is the person who takes the easy way out, talks down to parents or caregivers, and generally acts like a jerk.

-Veteran: Person with a disability who was born with it/will have it for life

-Rookie/Probie: (Borrowed from police and firefighters): A person whose disability is new. Example: Wounded solider, someone who’s suffered an injury or illness, amputee, newly blind or deaf. Veterans, stick with these people. Show ’em the ropes.

-Hawk: Borrowed from peace/war terminology. This is a person with a disability who’s not taking crap from able-bodied Pit Bulls or their methods, and can be a Mama Bird (see below) for other persons who want to be Hawks, too.

-Dove/Chick: Contrast–A person with a disability who is not a GLG, but is scared to buck the system. May want to be a Hawk, but needs an extra push.

-Full Flyer: In “bird-related” disability slang, this would be a TAB (person without a disability).

-Bad nest: Abusive or condescending group home, job situation, etc.

-Good nest: A job or home situation that the person with a disability actually wants/is their choice/is best for them on their terms

-Blue Jay: A person with a disability who “squawks” a lot about how modifications, freedom for people with disabilities, etc, is a bunch of bunk. May be cynical/had too many run-ins with Pit Bulls or Dark Falconers

-Cardinal: An advocate, either with or without a disability, who is so into it she’d do something like chain herself to an inaccessible bus (as in, bright red, hothead)

-Mama Bird: Somebody like me, actually. Protective of both Doves and Hawks, wants to advocate for everyone, tries to help out the Doves as much as he or she can (for males, this could be a Papa Bird).

-Falconer, Dark: A therapist or doctor who is condescending, gets mad if you ask for modifications, and in general, acts like a jerk.

-Falconer, Light: A therapist or doctor who is an ally (yes, they’re out there. And in case anybody wanted to ask, NO, these have NOTHING to do with race or color).

-Falconer, Pink: A therapist, doctor, or service provider who isn’t a Dark, but acts like such an idiot around people with disabilities (i.e., talking to us like we’re two-year-olds because they know no better) that you want to gag. So named for soft, pink, unfeathered flesh.

(Note: The term “falconer” would not normally be used in front of these. For example, back in public school, I might’ve said: “Yeah, most of my teachers have been Lights–real good people. But I had a scribe for math one time who was a total Pink.”)

-Chariot: Wheelchair (need I say more?)

Understand, I don’t go around tossing this terminology out. I just made it up for fun. But if you want to borrow, go to it. I won’t mind at all.

Also understand: This post was not written to say all people with disabilities are treated like prisoners, or that people who break the law don’t deserve to go to jail/pay the consequences (although abuse is NEVER acceptable, even then). This post is a somewhat light, I hope, way to raise awareness that often, life as a person with a disability is way too much like jail. We can do something about it. And we should.

So what do you say? Wanna go free some birds?

 

Grow Up!: Giving People with Disabilities Adult Status

Top o’ the afternoon, readers!

Yeah, I know it’s cheesy. But I am at least 1/4 Irish, thanks to my maternal grandma. And no matter how much actual blood of the Land of Ever Young runs through my veins, Ireland is in my soul. So humor a lady who embraces the Christ of St. Patrick and, deep down, is still a friend o’ the little people in the pointy shoes, all right? Thank ye kindly–now, grab a cup o’ tea and let’s get down to work on our next post.

I intended to make this a post about how people with disabilities can “feel lucky” in the job market of this economy–as in, shoring up their hopes that yes, they can get real jobs and lead real lives, thereby finding their own “pots of gold.” But then I realized, I had a more pressing topic in mind, and one that actually incorporates the job issue somewhat. So I’m writing this instead. I’m going to give you another of my radical statements: I believe that, if those who love and support them are not careful, people with disabilities, even over the age of 18, are vulnerable to insecurities about their adult status.

Now, some of this, we’ve already covered. We already know, for instance, that pinning certain negative prophecies on people with disabilities, such as, “He/she can’t have sex” “She can’t have children” “He/she can’t live independently” places the person with a disability in a powerless, perpetually childlike position. But this kind of insecurity has a deeper root, and can crop up far more insidiously. How do I know? I’m in the throes of all-out war with it right now.

I am an avid Bible study participant, and one of my very favorite teachers is Mrs. Beth Moore. I have completed at least seven of her insightful, knowledge-packed studies, and am in the middle of her newest. It’s called Mercy Triumphs and is a study on the Book of James. James did say “Mercy triumphs over judgment,” but let me tell you–James also steps on the reader’s toes more often than a first-timer trying to do an Irish reel. His words, through the inspiration of his half-brother, Jesus, will challenge you to do some spiritual housecleaning. And you may find the house is dustier than you thought. You may even discover that living in your spiritual house has made you sick.

As painful as this is, that’s what I’ve discovered. I have spiritual cancer, readers. It accounts for the “heaviness of spirit” (Beth’s words, not mine) that I feel if I’m not careful. It accounts for the time I spent seeking help from my graduate school’s counseling service (and the temptation I sometimes feel to return to said service, even though I fear that decision would be negative). And–here’s the biggie–insecurities have given me spiritual cancer.

I’d never be this open with you, except I need you to know this stuff. Maybe you don’t believe as I do, and that’s okay. But even if not, you need to know what my insecurities are, and that they can give inner cancer of some sort to those around you if left untreated.

I suppose if I were going to keep it simple, gloss over things, I could say all my insecurities stem from CP, and that would be true. CP is my disability, as you know, and as you also know, a disability of any kind can do a lot of damage. It can make you feel different, as if you’ll never be equal to peers who don’t have disabilities. It can make you vulnerable to external and internal bullies, as well as the “culture of caring” (check out January’s archives for more on that). And it can make you feel as if you will never, ever be an adult.

Let me show you what I mean. If this were a classroom, I would ask for volunteers to tell me some of the physical symbols that make someone an adult. But since this is just me, I’ll write the ones that come to mind:

  • A driver’s license. This is given to the young adult (16 or older) who has–often for no reason other than virtue of age–proven he or she can handle the freedom and responsibility that comes with the ownership and operation of a moving vehicle with the capacity to injure, disable, and kill people. (Whew–now that I think of it, WHAT is America thinking, letting high school sophomores on the road?)
  • A job. This usually starts with the relatively unskilled after-school positions kids get in, say, the food industry or retail. But it’s assumed that will morph into the coveted Real Job eventually, because that young adult is allowed to network, transport herself to interviews, relocate, and do everything possible to get that Real Job.
  • An education, preferably one from a university, but trade schools count, too. Although considering the partying that some “adults” choose to do–resulting in academic probation and worse–I wonder, should this one make the list?
  • A home of one’s own, to paraphrase the lovely Virginia Woolf. Again, normally begins as an apartment or home shared with roommates, but eventually morphs into an actual house, house for most people.
  • A spouse and children, although with the way relationships are viewed in our society, this can and does take many forms and may be the source of tons of drama and heartache.

These are just a few, but I think they’re the biggies. If any of you ever played The Game of Life as kids–or adults–you probably also recognize the loose order (any errors or additions are my own).

Now, this post is not about how we should give people with disabilities these things; we’ve covered much of that ground already. No–this is about the fact that, whether people with disabilities do or don’t have these things, they are generally not regarded as adults. I’m serious, folks. It doesn’t matter how many of these things the person with the disability achieves–certain others will always see her as helpless, needy, and/or childlike. And the person with the disability who does not have these things–like me–may start to wonder, “I might be 18, or in my 20’s or 30’s, but do others see me as a grownup? And if not, what will it take?”

Ah–there’s the sticking point: what will it take? And, is our view of adult status correct? I’m not saying everyone shares this view, but the markers I just wrote about are a huge part of “adulthood” as most automatically think of it. Yet:

  • Adults with driver’s licenses have accidents, drive drunk or under drugs’ influence, and injure or kill others
  • Some adults choose not to attend college or throw their educations away
  • Getting a job is tough right now–and is generally tough no matter what the economy looks like. Some adults don’t even have one. And some adults choose jobs that others wrongly disparage, such as being a stay-at-home parent.
  • Home ownership? Wow–you wanna talk tough. The financial stress and upkeep are huge. Some adults choose to stay in apartments or condos, where management takes care of things like yardwork and repairs. Some adults choose to travel, living out of vehicles like RVs. And because of this economy, adults my age and older, by choice or otherwise, do still live with their folks.
  • Spouses and children? Please–do not get me started on the divorce rate, people going on shows like Springer and Maury to prove who the “baby daddy” is, and the unjust flak you get if you actually choose to stay single or marry, but not have kids.

Here’s the thing: I’d venture to say, if an adult without a disability took any of the above “alternative” options, we wouldn’t mind. We’d say they’re adults; they can do what they darn well want to. But if a person with a disability can’t meet these expectations? Or doesn’t want to? Too often, it’s their disability’s fault. They have “proven,” once again, that they are “failed normals” and “naturally deficient” (Mary Johnson). And so they don’t deserve the dignity to be treated and trusted as adults. So what happens? You got it, hon–insecurity, loss of confidence, and spiritual or emotional cancer.

There goes my Irish!

I’m still working through my own insecurities–undergoing therapy with Dr. Jesus, if you like. But, who better than the patient–the “wounded healer,” as C.S. Lewis wrote–to encourage others? So, person with a disability: I don’t care whose expectations you have and have not met, what interests you do or don’t have, or what your “mental age” is.If you are 18 or older, you are a legal adult and deserve adult treatment and responsibility, as much as you can get.And that goes for family members, coworkers, friends, and others in that person’s life, too.

So take this message to heart, and go raise a toast–alcoholic or non–to the amazing, ever-growing ADULTS in your life today.

“It’s too Hard”: The Excuse Everyone–Except People with Disabilities–Gets to Use

Yes, readers, it’s true. “It’s too hard” is a rampant excuse, especially in Disability World. Yet, the people with disabilities themselves are often chastised, looked down upon, and penalized for using it. Don’t believe me? Well then, let’s get out our magnifying glasses and take a close look at our next disability-related issue.

On the surface, “it’s too hard,” and its cousins, such as “this is inconvenient,” “it costs too much,” and my favorite, “it’s unrealistic”–look harmless. They might even look true. After all, Chick, you might say, how realistic is it for a kid who’s blind to want to drive? How realistic is it for a para- or quadriplegic to want to skydive? Okay, I admit, that might not be possible–YET. I believe these things are indeed possible, but we just haven’t developed the technology, common sense, and other factors needed to make them happen. And why is that, you ask? Choral response, people–because:

“IT’S TOO HARD!”

Okay, so let’s take this down a level. What about the kid who uses a wheelchair, but wants to play in Little League, tap dance, or do ballet? What about the kid with a learning disability who wants to try to get into an advanced reading or math class? The adult with a disability who wants a Real Job, who wants to have children biologically, or who wants to–deep, heavy gasp–go on a foreign missions or service trip? The answer to those desires has consistently been “no,” because of the aforementioned excuses. So, what say we take those excuses apart? Yeah, I knew you’d like that idea.

Let’s start with the kids’ desires, and then move up. Kathie Snow wrote quite eloquently about the modifications a skeptical coach was able to make when her son Benjamin, who has cerebral palsy and uses a wheelchair, wanted to play T-ball. In the spirit of her example, let’s make up our own.

Tess wants to learn how to do Irish dance (a tribute to the fact that I have Irish heritage, and St. Patrick’s Day is fast approaching). But, Tess has a physical disability (could be CP, could be something else, you fill in the blank). Let’s say that she wears leg braces part of the time, and uses a wheelchair at times when walking becomes difficult or painful. So naturally, the dance teacher in her town or city wonders if Tess should be allowed to learn Irish dance, or how that could even be possible. But instead of sticking with “it’s too hard,” the teacher begins to think outside the box. She allows Tess to modify dance steps on her own when needed, or may help to modify the steps if asked. As for the ones Tess is able to do on her own without modification, the teacher encourages those, and may decide to use routines that rely heavily on those steps, or the modified ones, or a combination of them. If Tess needs to sit out for awhile, she is encouraged and allowed to do so, but she gets to decide herself when she’s ready to participate again. The teacher may even figure out ways to incorporate wheelchairs into dance routines (yes, I believe it can be done). And most importantly, the teacher does everything possible to make Tess feel a real part of the dance class, not the “different kid” everyone has to slow down for.

Now, doesn’t that sound better than “it’s too hard?”

Next scenario. Daniel is a high school freshman with excellent history and English grades, and would like to participate in his school’s debate and speech club. But Daniel has a speech disorder that makes some of his words unintelligible. Daniel knows he could write down his thoughts during competition, or substitute different words for the ones he has trouble saying. If the debate coach says, “Yes, Daniel, but it’s inconvenient–the modifications would slow you and the team down, and I don’t want you to feel embarrassed,” then that coach has pulled a cop-out. Not only that, but the coach has also placed Daniel’s disability first, as in, “The most important thing is what you can’t do, not what you can do”–and gently insinuated that Daniel’s speech is an embarrassment. Yeah, I’d get mad, too.

But if the debate coach instead says, “Okay, talk to me. Let’s see how we can make your ideas work, or come up with new ones,” then Daniel wins–and so does the coach and the team, because a valuable player has not been sidelined due to a disability that shouldn’t have been a big deal in the first place.

Scenario number three. Colleen is a grown woman in her twenties. She wants to move into her own apartment, just as her friends from school have done. But Colleen also has mild to moderate Down’s Syndrome. Some people in her life have already said it would be unrealistic for her to live on her own because “you can’t do…” “You can’t remember…” or “You don’t know how…” Never mind that Colleen has been fortunate enough to learn plenty of “life skills” in a natural environment (instead of a segregated classroom). Never mind that she’s been allowed to attend general education classes, make friends, and participate in after-school activities. Suddenly, her dream is unrealistic.

Unless…

Unless someone says, “Okay, what does Colleen have trouble with, and how can or should we modify it?” For example, perhaps Colleen has trouble with grocery shopping because she gets overwhelmed by crowds and the amount of items on her grocery list. Perhaps she could have her groceries delivered–like many people without disabilities do every day. Or perhaps she can write a shopping list that puts different foods under separate headings–e.g., keeping all the dairy under one heading, fruit under another, grains under the next–thereby making it easier to follow the list. (And whether or not you have a disability, show of hands–anybody out there done that before?) Perhaps Colleen doesn’t like to go out to certain places, like restaurants or the movies, because people stare at her. Perhaps, then, she could go to assertiveness training classes, so that she sees it’s okay to say, “Please do not stare at me” or even more forceful things. Notice, however–these are natural responses to real-world problems. They are NOT “goals” written out without Colleen’s input, and she is NOT being told she can only move into her own place IF she meets those goals. On the contrary, she moves into her own place as soon as possible, and the modifications are put in place naturally.

Last scenario. Mark is in his thirties. He has physical disabilities–he uses a wheelchair, has trouble speaking, and has trouble using his hands. Because of this, he was placed in a segregated classroom during school, and was later “allowed” to work in a sheltered workshop, because this was seen as his only “realistic” option (I’m beginning to hate that word, aren’t you?) He’s tired of the sheltered workshop and compensatory pay, and wants to get a Real Job. He has the skills needed for the job he wants, but his disabilities mean his workplace needs to make modifications, such as ramps or an automatic door, or letting him use assistive voice technology. Should the company say, “Sorry, Mark. We’d love to hire you, but the modifications will cost too much?”

Of course not–but how many companies would do exactly that?

In reality, the ramp or automatic door probably wouldn’t cost nearly as much as the company’s administration fears. And once again, let me remind all of you: If those things were put in place as a “convenience,” not as “special” things for Mark, everyone would probably love the idea. As far as the assistive voice technology–how many computers are coming equipped with that right away these days? How many people without disabilities use speech-to-text programs, such as Dragon, because it’s an “inconvenience” to type?

Right.

It’s becoming increasingly clear, I hope, that even when faced with the most “severe” disabilities, “it’s too hard” is a flimsy, if not outright untrue, excuse. But here’s the other side of that coin–the one we should all be even more aware of.

People without disabilities toss around these excuses like so many footballs all the time. But what happens when a person with a disability says the same thing? For example: seven-year-old Josh has a learning disability. He’s been working hard to improve his reading and writing skills, but occasionally becomes frustrated and tells his parents or teachers he doesn’t want to do these things. “It’s hard,” he says.

And what do the adults do? Best-case scenario, they encourage him not to give up, and to take a break for awhile. But worst-case scenario–and I’ve seen this happen, as you can read more about in my post on scare tactics–the adults scold,

“Josh, stop whining and do your work” or,

“Do you want to be in special ed/fail this assignment?”

They may not even consider what modifications may be needed to make Josh’s work more bearable, because to them, that would be letting Josh “take the easy way out.” (Well, as many disability advocates have said, isn’t using the dishwasher instead of washing dishes by hand taking the easy way out?)

Next scenario. Kathleen is a very good student. But she has eye problems, including a lack of depth perception, that makes the required math in her high school, such as algebra and geometry, quite difficult. She might shut down, refusing to do math homework or purposely getting answers wrong because she knows she’ll fail anyway. She may spend twice as much time as her classmates do on homework, taking hours to complete just a few problems. And she’s told to work harder. To stop being difficult and noncompliant. Scolded because she’s not meeting her “math goals.” Hello–what’s wrong with reducing her problem load? Thinking up new modifications if the old ones aren’t working well? Focusing on what Kathleen can do well, to raise her self-esteem? (For example, allowing her to do something she enjoys if she tests out of a unit in another class, rather than making her use the free time to work on math?)

It may seem simple. But readers, so many teachers, administrators, therapists, and others don’t use these solutions. Instead, they place all the responsibility, all the blame, on the person with a disability. Psychologically speaking, there’s a term for that: blaming the victim. And the attitudes of others, not the disability itself, is what makes that person the victim. Meanwhile, the rest of us take the easy way out all the time, because we feel entitled to it. We don’t have disabilities, we tell ourselves. Therefore, we don’t need to work hard like “they” do. We shouldn’t have to, because we weren’t stupid enough to have “natural deficiencies” in our brains and bodies.

GAG.

Let’s rethink our attitudes, people. It’s not that hard.

Testing, Testing, 1, 2, 3…A Million: Melting Down the Idol of the “Almighty” Test Score

Good evening, readers,

I am mad. I am incensed. I am boiling. My chest squeezes whenever I think about this next topic. And this next topic inherently has nothing to do with people who have disabilities–which is why I am incensed. What’s the topic, you ask? Test scores, particularly those in public schools.

As an informal teacher (tutor, community “editor” for high school term papers, one stint of teaching freshman composition in grad school, and a couple stints as an elementary school-level reading coach), and a full-fledged teacher-to-be, I get angry with the idea of high-stakes testing on principle. As I wrote in a novel I recently finished, which starred an elementary school teacher, these bubble sheet tests graded on a machine teach the kids nothing except regurgitation, and teachers don’t get to teach anything meaningful because they must stick to the test. From the spring of third grade through high school, “This will be on the test” constantly came out of my teachers’ mouths. I felt intense pressure, especially in regards to the math exams, and actually failed two of those exams, necessitating remediation. Picture the anger, shame, and disbelief that goes with that, and you’ll have more of an inkling of where my opposition comes from.

And what happens when the school as a whole presents with low test scores? They are sanctioned, which is a fancy word for “punished,” and blacklisted as what Diane Ravitch calls a “school in need of improvement” (SINI). Under No Child Left Behind, these schools essentially have five years to clean up their acts, or they face “restructuring,” which could, and often does, mean giving up and handing the school over to state control.

So of course, if you are a teacher or principal, you try to do everything you can to prevent these consequences. You do everything in your power to make sure your students and school make adequate yearly progress (AYP) according to the definition in NCLB. (I’m beginning to see something the government has in common with Disability Land–lots and lots of acronyms. Anybody else feel unnerved and annoyed? Yeah, me, too). In theory, that’s the right thing to do. Protecting your school often means toeing the line, as tough and unfair as that is. But toeing the line also means doing some nasty stuff, including the exclusion, belittiling, ignoring, and disenfranchising of children with disabilities.

Yes, it’s true. According to Ravitch, children with disabilities are one group that is constantly considered a drain on test scores. In Chapter 8 of her book The Death and Life of the American School System, Ravitch explains that often, the fewer minority students–or students with disabilities–a school has, the better the test scores are or will become (Ravitch 2010 p. 154). Notice that disability is perceived as separate, different–therefore inherently unequal–from African-American, Hispanic, Jewish, Asian, Native American, or other minorities according to testing industry bigwigs. Ravitch also states, around page 156, that sometimes minority children, including English language learners, are placed in special education even though they don’t need it, so they won’t drive down the test scores of their minority “subgroup.” Translation? “It’s okay if they drive down the ‘crip’ scores–those kids can’t do anything anyway. But we can’t make kids of different races or religions look bad. After all, those things are natural and normal. Disability is not.”

Need an antacid yet? Honey, it gets worse. According to Ravitch, sometimes, children with disabilities who are eligible to take state tests with accommodations are given more accommodations than they actually need. Why? So they will be more likely to reach that elusive goal of “proficiency” as defined by NCLB. Translation? “Let’s give them everything we can so they’ll pass and make the school look good, and so if they fail, we can blame them and their ‘deficiencies.’ Plus, it’s great PR.”

Right. And I’m a slice of Swiss cheese.

Do you see what’s happening here? Children with disabilities are either being told they’re incapable–again–or they’re treated as commodities–what Kathie Snow bluntly calls “cash cows.” And as for the modification construct, it looks good on paper, but what it really serves to do is make the child with a disability look weaker and more dependent. As in, “Look how much they need, poor things,” so that eventually, teachers, administrators, and others can start saying, “Are disabled kids really worth it?” And the answer will always be no. So the cycle of giving these children sub-standard educations, then shuffling them into menial jobs and “placements” in sheltered programs continues. And when they fail, we blame them for being “drains on society”–when, way back when those adults with disabilities were kids, WE STARTED IT! We set them up to fail!

“But Chick,” you say, “suppose a child really is incapable of taking a standard state test?”

So, then, you modify the test, as much as is reasonable (defined by the child’s needs, not your definition of “reasonable.”) Or you give a different test that does not condescend to that child, and shows the extent of their strengths and capabilities in the best way possible. If it takes time? Well, you’d want the same thing done for your own kid, I’ll bet. If it costs money? Come on–you funnel enough money into these gosh-awful segregated programs and classrooms. Why not funnel it somewhere it could do some good? And why not help children with disabilities, and their families, realize the truth that they too, can accomplish something? They too, can be “proficient” or even “advanced?”

Think it through, guys–especially those parents whose children don’t have disabilities. Would you want your kid treated like this? Seen as the one kid who ought to just stay home, or go in a separate room and do babyish activities, on test day? Or worse, seen as a cash cow (which is what they will become, if we continue to give in to the vicious cycle I have described?)

Then get in the schools. Get on the phone and into your email accounts, and propose a new way to your school: real partnerships. If kids really do need to take these high-stakes tests (which in itself is debatable), let’s work to make them truly fair, available, and positive for every child involved.

“Make Yourself Useful”: People with Disabilities and the Right to Rest

Hello, readers,

I’ve sensed a disturbing pattern in our world lately, particularly since the economic collapse of 2008. An event like that is bound to make people take more notice of money issues, credit scores, prices, and yes, the all-important pastime, the thing that encompasses our day, the thing that assures we have the money we need to deal with the other issues I mentioned: the JOB. Even in this economy, the job continues to be a huge part of the American Dream. If you have one, the world says, “Great. Hang on to it for dear life.” If you don’t, well, you’re entitled to benefits and sympathy to a point, but then, in an unfortunate downside of our otherwise positive free-market enterprise, it becomes your fault that you are jobless. You get stereotyped as a bum or bum-ette, and told to stop whining, get off your butt, and go back to work. Never mind extenuating circumstances.

And yes, one of those extenuating circumstances is disability. Now, I could spend this post talking about what constitutes a disability severe enough to keep one out of work, the people who take unfair advantage of disability benefits, and the fact that many employers would rather downsize half their company than hire an employee with any kind or degree of disability. But that’s another post. This one’s about the other side of the job coin: REST.

I don’t know about you, but in my humble opinion, the world seems to have a real problem with resting beyond one’s normal 8-10 hours of sleep. No wonder Jesus made a point to encourage the weary and burdened to come to Him for rest (Matt. 11:28). He must’ve been hanging around some seriously physically, mentally, emotionally, and spiritually tired people. And I agree with him: readers, we are tired. And people with disabilities are no exception, but sometimes, ableist attitudes want to make them the exception.

“What do they have to be tired about?” ableist people might ask. “They don’t DO anything–they just live off the government. My tax money goes to take care of them.” Some people, like the moron who wrote the “Why Beer is Better than Retarded People” list I lambasted in December, might even say people with disabilities have it too easy to be tired, because allegedly, all they do is watch cartoons and play all day. Yeesh!

The truth is, people with disabilities are tired. We’re tired of being denied the right to work, and then being punished for not working, via other people’s attitudes or actual sanctions (i.e., those “special” programs where “voluntary required” job training earns you the right to do what you want). But we’re also tired of feeling guilty for resting, and I speak from personal experience. A major reason I am currently working on my second Master’s degree is because the first one didn’t net me a stable job. Meanwhile, I’m receiving SSI while in school. I can’t go be a waitress or a Whopper flopper somewhere. And for years, I have swallowed the bitter guilt that comes with that. It’s hard not to look at able-bodied people and wonder if they’re thinking I’m living off them, and disparagingly asking themselves, “Can’t she do anything?”

Trust me–I can. If you still doubt that, you need to go back and read through the blog. But this is not about my “doing” anything. One of the things I’m currently doing with Jesus is spiritually cleaning house as I study the book of James via Beth Moore (a phenomenal Christian lady, teacher, and speaker, if you’re interested in her writing). And as I clean house, I realize, as hard as it is, the guilt over resting has got to go. So I wrote this post to encourage both my readers with disabilities and the able-bodied: If you’re in a position where you’re being asked to rest or wait, it doesn’t mean you have to twiddle your thumbs. But you don’t have to feel guilty, either. I would say you shouldn’t, but as I’m still working on that particular lesson, I won’t.

Think about it. Resting gives you time to:

  • Improve your spiritual life
  • Spend time with your kids’
  • Work on hobbies
  • Take a few well-deserved naps
  • Walk around the house barefoot
  • Listen to the birds
  • Play games
  • Call a friend or three
  • Call your mom or dad (believe me, they start to miss you when you don’t)
  • Make a great meal
  • Learn something new
  • Help other people
  • Breathe

So, the next time somebody says, “Make yourself useful,” or starts harping on you about work, remember that. And have a blessed, restful day.