Monthly Archives: December 2011

Making it Happen: A New Year’s Letter to Rally the Troops

Dearest readers,

I admit, sometimes when I look at our world, and my own dreams as a person with a disability, I feel pretty hopeless. The economy remains stranded in the kitchen sink, and even if I get that elusive Real Job after this second round of grad school, I can’t firmly say when I will have a home of my own. I’ve been single for years, with only one real dating experience that came to nothing. And if “trusting God” means continuing to sit on my hands and wait, well, like so many before me (Sarah, Leah, Rachel, and Rebecca, I’m looking at you, Bible girls), then…

Fighting for my own dreams, and those of others, is no walk through Central Park. It’s tough. But if I–if we–give up, then where will we be? We will have let segregation win. We will have admitted that the only places we “belong” are “special” places–special classes, special housing, even special amusement parks, for crying out loud. And even if some of us do not consider ourselves “advocates,” or like me, are new at it, we cannot allow this to happen.

I own a series of devotional books by the lovely Sheri Rose Shepherd, in which Jesus writes to the female reader as His chosen princess. One of these, His Princess Warrior, is based heavily upon spiritual warfare, but I like to think it’s also based on showing women–and men, too–how to successfully, cleverly, and gracefully fight other battles in their lives. Pages 64-65 contains one of my favorite devotionals, based around my “life verse,” Jer. 29:11. It is titled “Hopelessness is an Illusion.”

The trouble with illusions, I think, is they so often look true. Think about it. For those of you who have attended a magic show of any kind, it looked real when that person disappeared or that magician drank hydrochloride acid, didn’t it? Even if you knew it wasn’t? Hopelessness works like that. And it gains casualties–yours truly included–every day. But we don’t have to stay down.

What about you? If you’re a person with a disability reading this–child, teen, adult, senior–is hopelessness stealthily creeping its way in? Are your teachers, coworkers, therapists, counselors, or others underestimating you? Are you being told what’s good for you and expected to swallow it, even if you don’t want to? You can stop. You can make them stop. And it starts with saying no.

Are you a parent or guardian of a child or young adult with a disability? Do you believe what the experts are telling you? Do the IEP and IHP goals seem meaningful, or do they read like gibberish? Is what’s written being ignored, and not done? Do you know your loved one is capable of more than what They (the “experts”) claim? If so, you can say no, too.

Civil Rights leaders got somewhere because they said “no.” No, we’re tired of hearing “not ready” and “stay in your ‘God-given’ place.” Women’s Rights leaders got somewhere because they said “no.” So did the righteous Gentiles and Resistance workers whose efforts saved Jews and other persecuted people from Nazi atrocities. So do the teachers, parents, and social workers who speak out against child abuse and neglect. Join them. This year, let’s stick it to hopelessness, who births so many other possibility murderers. Let’s make an effort to get people with disabilities real, accessible homes and jobs. Let’s stop paying people without disabilities to be “friends” with a person who has a disability. (Yes, it happens). Let’s stop telling people with disabilities that their diets need to be restricted, their every activities supervised, and their free time earned. (Yes, it happens). Let’s treat people with disabilities as though their differences can, and do, blend into real society as seamlessly as do differences such as skin color, religious preferences, and so forth. No, it won’t be perfect. But let’s do what we’re constantly telling people with disabilities to do:

WORK ON IT.

Signed,

Your Captain

HOO-RAH! (With a salute to the U.S. Marines and other branches of military service for letting me–and us–borrow your terminology).

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Cleaning House: Where Does the Disability Go?

Okay, so I’m not a typical neatnik. Not to the extent of Adrian Monk, anyway. But I do like things to be in their proper places, and in the right mood, I enjoy organizing. I particularly enjoy organizing my books and bookcases (yes, I’m a nerd). In fact, that’s something I’ve been doing lately, considering the books I received as gifts. My motto is, the addition of new books means letting go of some of the old ones and letting others enjoy them (such as libraries, charities, jail ministries, friends, and so forth). And as I was doing my organizing, it occurred to me: as we with disabilities try to organize our lives (not that we as humans can, in my view, but we try), where do our disabilities need to go?

Confused? That’s okay; it happens to writers sometimes. What makes sense in our heads doesn’t always look perfect on paper (or a blog post). So allow me to explain. For a long time, I’ve wondered where exactly in my life my disability is supposed to “go.” Where does it fit? How much space should it take up for me, physically, mentally, emotionally, and spiritually? How much spotlight is it worth? And it’s occurred to me that I’m not the only one asking such a question. Other people with disabilities–if you’ve been reading this blog and even if this is your first time–probably are, too.

I think we can agree on what the answer to this question is not. Whether you are the person with the disability, the parent or guardian, the colleague, or the friend, I think we can all agree that one’s disability doesn’t merit a starring role in anyone’s life. (And don’t give me the severity argument again; I don’t feel like re-explaining the “degree” of disability is largely and perhaps completely irrelevant, okay?) So, what does the “starring role syndrome” (SRS) look like? Pretty simple–it’s what happens when a parent overprotects his or her child with a disability, or a colleague, friend, or other person babies that person. Kind of like the way my maternal grandmother (the one with the wheelchair-using dog) used to be petrified that I’d fall just walking through her yard. Or the time my father, in the process of helping me set up my dorm room for Grad School Round 1, sat me down in front of my fridge and asked if I knew what the freezer was for. I’ll hold for the disbelieving remarks and assorted laughter.

Then there’s the I Can’t, I’m Special Syndrome (ICISS). Does anyone else hear the “ick” in that acronym? That occurs when the person with the disability purposely or subconsciously plays it up, usually in order to get sympathy, get out of doing something, or in the saddest cases, because they have been taught to think in “can’t” terms courtesy of the people without disabilities in their world. For me–and I would venture to say, for other people with disabilities out there–ICISS tends to happen in early childhood. It happened with me around first and second grade, when I had somewhat strict teachers I didn’t like, had an in-school physical therapist I also didn’t like, and felt that I was constantly being forced to do things (a. I didn’t want to do and (b. nobody else had to. So, the birth of ICISS. When I particularly wanted to push buttons, this was accompanied with the made-up singsong of, “I can’t do it, can’t you see? I have cerebral pal-sy!” (Ugh; flinching just thinking about it). Although I did become legitimately musical in later years, so…nah. My point is, this makes for a rather obnoxious kid if it happens in early childhood–and an adult who will not only get on everyone’s nerves, but also succeed in convincing everyone he or she truly is unable and incapable.

The third “diagnosis” in this list is what I will call the Don’t Mind Her Syndrome, or DMHS. This occurs when either the person herself, or the people surrounding her, believe and act as though the best way to deal with the disability in question is to ignore or conceal it as best they can. I myself have been in DMHS mode for years. I suppose after meeting a ton of people afflicted with SRS, and suffering from ICISS (and not the subconscious kind, either), this was inevitable. I used to fantasize about going away somewhere–like, say, summer camp–and successfully hiding my CP from everyone else, so that when and if they found out, they would honestly say that (a. they didn’t know (b. they never would’ve guessed and (c. what did it matter, anyway? I think I got this idea from one of Melody Carlson’s books aimed at teenage girls. The Allison O’Brien series–great quartet of books, by the way–featured a secondary character named Heather, a talented, beautiful, and blind English girl. When she and Allison go to camp, Heather becomes worried that if the directors discover her handicap, she’ll be sent home (actually a legitimate worry, I believe, as this book was set in about 1948). And I thought: if Heather can do it, why can’t I do it? It’s not like I need help feeding myself or cleaning myself or any of that big stuff. (Remember, this was BPS, when people with severe disabilities, who did need help with “the big stuff”, intimidated me).

Well, my mom put a cork in that plan. First of all, I was dumb enough at 13 to share that ambition with her. And she was right; you can hide blindness if you’re really careful, but eventually, it will pop out, as will CP. So I didn’t hide my disability, although I did go to Camp Carefree, which was a camp especially for kids with disabilities and illnesses. But over the next decade or more, I guess I kind of woke up. I had a disability, it was not going away, no one was gonna give me sympathy or special treatment because of it, and in fact, some people might find me pitiful, repulsive, or annoying because of it. I mean, look at the way kids at my school laughed at or otherwise negatively treated the “special” kids. Look at the way my teachers blamed me every time my computer or printer malfunctioned, or seemed reluctant to modify certain assignments. I had some so-called “friends” who dumped me when it was convenient, and wondered if my friendship had been convenient because it made them look good. And although I read tons of Chrisitan romance novels (many in historical eras) and thought about love, I never got asked on a date. Couple that with the stereotyped, pitiable images of the disabled on television or in books, and the jokes made about them (i.e., we’re apparently unable to do anything physical in relationships), and you can see how I got comfortable with DMHS.

And then, I went to college. Now, college can have its own highly detrimental form of “special ed” (more on that in a future post). But in my experience, college and grad school were the first times CP took a real backseat. Instead of sitting through IEP meetings with the refrain of “she can’t” ringing through the room, I went to the disability services office, got modification letters, handed them off to the profs, talked about specifics if necessary, and boom, we were done. I couldn’t believe it. The whole thing was surreal–and yes, a little scary, because all of a sudden, nobody would be there saying, “You have to do this; she paid to go to school here.” Nobody except me, that is.

I got used to it. I’m slowly becoming a better self-advocate, and thus, a better advocate for others. But it wasn’t always easy, especially in class, and especially in writing class. As a writer, I took a lot of those–Intro to Creative Writing, Fiction, Poetry, and Creative Nonfiction. Creative Nonfiction was the biggie, because there, we wrote about ourselves. And both my professors (I took the undergrad and grad versions) cautioned us not to harp on certain things too much, such as our bad breakups, or awful parents, our ___ (fill in). And let me tell ya, I saw a lot of harping, and some downright weird–though compelling–stuff. But, in the true spirit of DMHS, I thought if I ever mentioned CP, I’d be harping.

That lasted about half a semester.

Creative writing classes of any kind are therapeutic. Fortunately or unfortunately, depending on how you look at it, this causes students to, sometimes, discuss problems in a workshop session as if it were a therapy session (the psych kind, not the PT and OT kind). This is what happened during the workshopping of my first long piece. Disability made it into the piece in a bigger way than I thought it should’ve, and when allowed to speak at the end, I apologized to my classmates for that. Well, there was an older guy in my class–married, a kid, gone back to school after a few years off (this was grad). I don’t know exactly what he said, but the bottom line was, I had to make up my mind about whether to “own it” (the CP) or “ignore it.’ And the way he said it, ignoring wasn’t the good option.

So, what does “owning” a disability mean, exactly? I’m not sure. I think it’s different for every person, but I do know it involves accepting the disability as part of oneself, and knowing it’s not a bad thing–such as a “syndrome” that makes you ill, bad, or undesirable. And, as I’m not very good at this yet, I’m sure this post will come back to bite me. But I certainly hope it helps and encourages all my readers out there. 🙂

To Truly Know

Hello, readers. Yesterday (even though the post says Dec. 27; not sure what calendar the program’s using), I wrote about trying new things in the new year, in the interest of taking down the Possibility Murderer. But how about knowing new things, as well?

If you’ve been reading my posts, you know I’ve talked about this a lot. We could all stand to know some new things: the shifting therapy paradigm, how to communicate with people who seem incapable of it, and other such things. But how about knowing new people? Knowing yourself?

You’re probably wondering what I’m talking about. Well, I’ll tell you. I’m dropping most of the rhetoric for the moment and getting intensely personal. In my journey through the new world of advocacy, I’ve been praying a lot. I’ve prayed for God to let me listen to His voice over the voices of others–including disability rights activists or “gurus,” as it were, who I might think know everything, but don’t, because they’re human. I’ve prayed for Him to keep me from painting doctors, therapists, and other such people as antagonists toward people with disabilities, even though the medical model of disability–and the people who perpetuate it–have the ability to make me angry enough to throw a hairbrush into my window blinds (yeah, I did that once). I’ve prayed He would show me how to use my new knowledge, and give people with disabilities what they truly need.

When I prayed this last one, I got the answer: “People with disabilities need to know Me.” It’s the standard Christian answer, in a way. My faith–and my church–will tell you that God’s will for any person is a personal relationship with Him, rather than doing specific things for Him. But–confession time–up until recently, that answer got on my nerves. That’s right–Christianity’s answer really bugged me. I agreed with it, but it did.

Confession time part two: I’m an ever-recovering legalist. I used to think that to have a relationship with God, one followed a specific recipe, as it were:

1. Read Bible daily

2. Pray daily, for others above self, and don’t waste too much time talking about what you want or how you feel

3. Attend church

4. Perform Christian service

Mix well. This will help you know God and keep doubts about your salvation (and thus eternal destiny) away. I say this as someone who became a Christian at age 9–then again at 11, then again at 12. The idea of hell–ahem–scared the hell out of me. So to combat Satan’s games of mental chess, I buckled down and got legalistic. The best way to know God was to follow the recipe.

Not that prayer and the Bible and church aren’t important parts of this. They are, and I’d never say differently. But after awhile–my Bible got boring. I got tired of praying for the latest list of cancers, kidney stones, mysterious illnesses the doctors couldn’t diagnose, accidents, etc. It felt like a checklist. And I got tired of my question: “What’s God’s will?” being answered: “To know Jesus.” Okay–but what ELSE? Work with me!

Funny thing about Jesus. He works with me–but not the way I expect.

So, you know I was praying recently and got the same answer, right? So I said, “Okay, I get that. Your will is for them to become Christians.”

And He said,

“No. Not to become Christians in the sense that you’re thinking. To know me as a Person–just like you’d get to know any other Person.”

Whoa. Back up this bus (the perfectly accessible bus, thanks). You mean, I can think of Jesus Christ–God Himself–as a person? I can read His Word, but get a fresh “word” from talking to Him? And He’ll talk to me about this advocacy thing? I’ll know what to do as I go, without the ritualized stuff? (Which I should’ve realized earlier, considering how I feel about other ritualized stuff like therapy, IEP or IHP “goals,” and the like).

Yeah.

Know how I know? Because I was writing another post, and I felt like I should write this one instead. Obeying a nudge, as it were.

Am I saying all of you should become Christians? Even believe in Jesus? I’ll be honest: I do want that. Jesus is pretty cool, and through His Word, he asks–commands–that I witness for Him, so it is a responsibility for me. But if you don’t choose my path, that’s fine. I’ll still love and like you. I’ll still listen to your POV and think you’re cool. Heck, I’ll like you and think you’re cool even if you think I’m a radical, over-intellectual, doctor-and-therapy-bashing, Jesus freak nut job. Actually, I’d be flattered. But don’t believe in my Jesus. I’m human. And as my journey through legalism can tell you, I often get Jesus “wrong.” I’m human, so all I can do is the best I can–through Him, who says I’m perfect. (For a perfectionist like me, how cool is that?) Get to know Him yourself, if you choose. And as you truly know Him, may you reach out to truly know others–even and especially those with disabilities. And people with disabilities, may you reach out and truly know yourselves–not the person everybody else, especially those in Disabilityland has defined for you.

Okay, I think I’m done here. I just wanted you guys to know where the root of my advocacy and new journey comes from. Blessings and peace.

I am Not a Cake!: Independence Chick and the Possibility Murderer

Hello, readers. It’s the day after Christmas, and I admit to being a little sad (and a wee bit jealous of those celebrating Kwanzaa, who have reason to look forward to the 26th). 🙂 But the end of the holidays, for me, always means a new, clean year and a chance to do new things. A chance for things to change.

For almost eight years now, since age 18 (I will be 26 in just a few weeks), I have begun the new year wanting something specific to change by the end of said year. More than almost anything (except maybe a writing career) I want my own home. A place where the space is all mine, a place I decorated myself, and a haven in which I can do things my way, on my time, without input from other people (at least unless I met someone). You’re getting the idea of why I chose the Independence Chick handle, aren’t you?

Now, I realize I’ll have to wait for this dream to come true, because I’m in grad school now and will be living in a dorm for another year. And I firmly believe those closest to me want this dream for me, too. But in my lifetime, especially when I first became a legal adult, the idea of “not ready” hovered around me. In fact, it had hovered at other times, too, for other reasons. As in, “You’re not ready to go to an overnight camp because you can’t style your hair.” Or, “You’re not ready to live by yourself because you can’t cook or make a bed.”

I’ll tell you something now. Because my CP is so mild, I think I always wanted to be “like everyone else.” But also because of its mildness, I think I subconsciously felt there was no reason not to be able to do certain things. I was ashamed not to be able to do them. And so when someone–especially well-intentioned someones like therapists, or even loving someones like parents–used “not ready,” I believed them. I bought the idea that what I wanted was unrealistic.

This, however, is PSE (Paradigm Shift Era). And PSE, I ask myself: “What’s ‘ready’ anyway?”

Of course, in some situations, we can say we know. A cake isn’t ready to eat until a broom straw poked into it comes out clean (bakers out there: do you guys still do that?) A small child is “ready” to be potty-trained when she asks for a wet or soiled diaper to be changed, instead of not noticing it isn’t clean. An adult is “ready” for a certain job when he or she successfully completes the classes or training it involves.

But in these situations–except maybe for the cake–is readiness relative? Sure, that kid may be successful at potty-training. An adult might be able to do that job in theory. But are these people nervous or scared? Sure. Will they fail sometimes–anger the supervisor or have an accident? Of course. But does that mean we say, “Oops, you’re not ready, go back?” Not if we have common sense, we don’t.

I’m not just talking about people with disabilities here. For years, I listened, read, and watched as the public education system handed down new benchmarks to determine who was “ready” for what classes or activities or grade levels. And I watched my school board chairman mother help parents who disagreed fight for what they thought was right for their kids. I listened to my mother speculate about if she sent my little brother to kindergarten at the right time. If she pushed me into something I wasn’t prepared for, or didn’t push me when she should’ve. And though my father wasn’t as expressive with these questions, I’m sure he had them, too.

Yet, we do this to people with disabilities, I propose, more than any other group of people. “Laura will not be ready to live by herself unless she can wash the dishes within 20 minutes of eating.” (Who does that? Don’t we just put them in the dishwasher these days and let it run?) “Jacob will not be ready for third grade work until he can write legibly.” (By whose standards?) “Kathleen cannot participate in horseback riding unless she meets the goal of staying balanced during X physical therapy activity.” (Okay, so define “balanced”. If you can’t–or you have unrealistic expectations for what success looks like–then you’ve got a problem).

One of my Christmas gifts was the first season of Monk on DVD. I love Monk; his attention to detail is something I can only dream of possessing. Seriously. I’d love to be able to look at a crime scene and say something like, “Okay, our guy is 5’10”, a truck driver, and wears a size 11 shoe. And his alibi doesn’t stand up–he wasn’t at Longhorn Steakhouse Friday night. See that rosary? It’s well-worn; the beads are cracked. That makes him a devout Catholic. He wouldn’t be eating meat on Fridays.”

In addition, Monk is almost adorably human. I mean, who else stops in the middle of a crime scene to straighten a pillow? You want to choke the guy, and yet…he always gets his man. Not in spite of his disability–a severe case of OCD–but with it! How cool is that?

Yet, as I was watching the pilot this afternoon, I noticed something–how often Capt. Stottlemeyer told Monk–yelled at him, actually–that he wasn’t “ready” to come back to the force because of his OCD. Now, of course, I see the good captain’s point. “If you’re gonna carry a gun and have other cops depend on you…the bad guy can’t get away because you got dizzy.” But about the fourth time Lt. Randy Disher made a lame joke about Monk’s “weirdness,” as it were, I started to get ticked. Okay, so the guy’s afraid of everything known to humanity, including milk. But Stottlemeyer, if you expect the department’s uniform to accommodate your weight, why can’t you get off the fact that Monk is “not ready?” Consulting for you, working with other cops–that’s what makes the OCD less of a big deal. And may I remind you, Captain S, you regularly tolerate Disher’s flagrant-but-funny idiocy, such as spelling something by beginning, “T as in ‘tsunami?'” Please.

And while we’re on the subject of TV characters with disabilities: what about Sue Thomas? In her pilot, the FBI stuck her in “special projects” (there’s that word again)–analyzing fingerprints. I’m holding in yawns just thinking about it. Why? Because she was Deaf. And Jack Hudson, bless his adorable, stupid, misguided male heart, overprotected Sue at first because she “wasn’t ready” to go out there and take down the bad guys with the big boys.

Well, excuse me. What would’ve made her ready, then? Sitting there watching you do it for three seasons? Uh-huh. I think not.

In no way am I saying people with disabilities should be put in danger on purpose (or accidentally, for that matter). What I am saying is, stop making our judgments for us. We know when we’re “ready,” and if you let us, we can articulate that to you. And if we fail? Mess up? Don’t sideline us. Do what you’d do for someone without a disability–chalk it up to experience and give us real help improving. And as for your “goals” about making a bed or washing dishes within 20 minutes, or cooking pheasant under glass? Do you make your bed every day? Do you leave your dishes in the sink? And weren’t you the one bringing home takeout last night?

Yeah–so stuff it.

“Ready” is a possibility murderer. And just like Monk, this year, I want to take it down. I may not get my own home (although I hope so and would appreciate all you readers out there rooting for me). But there are other things I could do. Like Monk, the idea of some of them scare me to death. Want an example? Socializing has always been difficult for me (more on why later). It would take a lot for me to stay out late on a weeknight and just–have fun with people. I’ve always wanted to try Irish dance, but felt my body would never be “ready.” I love theater, but after being turned down so much, I’m not sure I’m “ready” to try it again.

And yet, I’m a woman. Not a cake.

Readers, what do you think? Should I go out on a limb and try some new things–and then write about them?

I could definitely use a push from a virtual Sharona.

Your Christmas Bonus: A List of Thought-Provoking Books from the Independence Zone!

Hello, readers. Independence Chick here again with a Christmas bonus for each of you (which is more than most of us are getting in this economy, eh?)

As you know, I love to read. My favorite Christmas gifts have almost always been books. And so, I’d like to provide you with a list of several books, fiction and nonfiction, that promote new and enlightening understandings of disability. In other words, these books come straight from THE INDEPENDENCE ZONE. And here they are:

Getting Life (fiction, author Julie Shaw Cole, adults only)–Thirty-two-year-old Emily has sat like a lump, unable to communicate or truly live, in a nursing home for most of her life, due to severe disabilities. In the nursing home, she is abused, and her thoughts, needs, and wants are dismissed as unimportant or nonexistent. But when the abuse goes too far and Emily ends up in the hopsital, her life takes a drastic turn. An astute physician works to liberate her from the home. Meanwhile, Emily starts her journey toward a real, fulfilling life.

Why I Burned my Book and Other Essays on Disability (nonfiction, author Paul Longmore, adults only)–Paul Longmore gives readers food for thought in this collection of disability-related essays on topics such as why the ADA was not the benchmark movement some thought it was, disability stereotypes in film and other media, and the criminally low expectations of people with disabilities in society.

Rules (fiction, author Cynthia Lord, grades 6-8)–Thirteen-year-old Catherine wants nothing more than a normal life, where her severely autistic brother David’s disability can’t wreck everything, even her relationship with her parents. So she gives him a list of rules to follow, such as “a peach is not a funny-looking apple,” and “keep your pants on in public.” But when Catherine meets a boy with a disability at David’s therapy clinic, she begins to change her behavior and perceptions of “normal.”

Make Them Go Away: Clint Eastwood, Christopher Reeve, and the Case Against Disability Rights (nonfiction, author Mary Johnson, adults only)–A landmark book exploring the truth behind the ADA, the case against disability rights, the case for disability rights, and the fact that our society, though “enlightened” in many other ways, consistently still fails to see disability as deserving of real civil rights legislation and attitudes.

Gathering Blue (fiction, author Lois Lowry, grades 6-9)–Kira grows up in a fictitious futuristic society, where people with disabilities are not allowed to live. Kira, born with a physical disability, was saved due to her grandfather’s status as a community elder and allowed to stay with her mother. But when Kira’s mother dies, she must defend her right to live–and does so successfully, with the help of her artistic gift.

Crashing Through: The True Story of the Man who Dared to See (nonfiction, author Robert Knutson, adults only)–Knutson chronicles the true story of Mike May, a man blinded in an accident in 1999, his wife and family, and their efforts to show that life without vision can be just as good, and worth living, as life with it.

Highland Sanctuary (fiction, Christian-based, author Jennifer Hudson Taylor, teens and adults)–Serena Boyd, born with epilepsy, was spirited away to the Village of Outcasts in the Scottish Highlands when her ruthless father tried to kill her for being “demon-possessed.” In Medieval Scotland, this is an all too common attitude toward epilepsy, and so Serena, her mother, and her old nursemaid must live in obscurity to ensure their safety. But when Serena meets and falls in love with Gavin, a Scottish nobleman, her life is about to change, and only her faith will keep her afloat.

Disability is Natural (nonfiction, author Kathie Snow, general audiences)–The book containing all the information found on the disabilityisnatural.com website, and more, as author and mother Kathie Snow chronicles the real, natural, fulfilling life of herself, her husband, and her son Benjamin, who has CP.

Handle with Care (fiction, author Jodi Picoult, adults and very mature teens, due to language and controversial court issues)–Five-year-old Willow is brilliantly gifted, and she and her family are happy and close-knit, if financially strapped. But Willow’s brittle bone disease, or osteogenesis imperfecta, is taking a real toll on the family. When Willow’s parents are presented with the option of suing their OB-GYN and family friend for “wrongful birth” to secure Willow’s future, they face a heart-wrenching decision.

Raymond’s Room: Ending the Segregation of People with Disabilities (nonfiction, author Dale DiLeo, adults only)–DiLeo writes a real, raw account of meeting Raymond, an “inmate” of an institution, whose disabilities have kept him from a real life. Using the story of Raymond and his “hot, smelly bedroom”, his own experience as a worker with people with autism, research, and other stories, DiLeo shoots a hole in the idea of segregation.

The Absolutely True Diary of a Part-Time Indian (fiction, author Sherman Alexie, grades 7-10)–Arnold “Junior” Spirit was born with water on the brain, and so must deal with constant flak from bullies and other people without disabilities. But his talent for drawing, and his gradual closesness to his tribe, make him, and his story, truly enduring.

Just Give Him the Whale!: 20 Ways to Use Fascinations, Areas of Expertise, and Strengths to Support Students with Autism (nonfiction, authors Paula Kluth and Patrick Schwartz, adults only)–A book, indeed a manual, filled with “easy tips and strategies” to help educators focus on students with autism, their strengths instead of their weaknesses, and giving them a real education.

House Rules (fiction, author Jodi Picoult, adults and very mature teens due to language, courtroom drama, and murder descriptions)–Jacob Hunt is a forensics science genius. He finds evidence at crime scenes the police often miss. His idol is forensic scientist Dr. Henry Lee. But Jacob also has Asperger’s Syndrome. When the hallmarks his AS displays–such as not making eye contact or quoting movie lines–gets Jacob framed for murder, his family is thrown into a maelstorm. What will this mean for his family? How will Jacob cope? And who’s the real killer? Readers–no one was more pleasantly surprised than me.

Inside Deaf Culture (nonfiction, authors Carol Padden and Thomas Humphries, general audiences)–A book chronicling the rich Deaf Culture, and the efforts of remarkable Deaf people (capitalized because they consider it an honor to be referred to as such in many, though not all cases), to make deafness a “normal” part of our world.

Accidents of Nature (fiction, author Harriet McBryde Johnson, grades 6-10)–In 1970, Jean, who has cerebral palsy, is sent to Camp Courage, a camp for people with disabilities. Jean has always only seen herself as a “crip” (caution on the outdated ’70s language). But her brilliant, sarcastic bunkmate Sarah, who also has CP, has other ideas. Jean’s world is about to be turned upside down–and Camp Courage is about to get a wake-up call.

Widening the Circle: The Power of Inclusive Classrooms (nonfiction, author Mara Shepin, adults, especially recommended for educators and other school personnel)–A book on what the inclusive classroom is, strategies for real inclusion, and how to make it happen in your school.

Out of my Mind (fiction, author Sharon Draper, grades 5-8)–Melody has a photographic memory and is the smartest kid in her school, but nobody knows it because she’s also unable to talk. Faced with special ed and other injustices, Melody works to–and succeeds in–finding her own voice.

Saving Sammy: Curing the Boy who Caught OCD (nonfiction, author Beth Maloney, adults and teens–In this memoir, mother Beth Maloney chronicles how she suddenly “lost” her gifted–nay, brilliant–son Sammy to a host of OCD and Tourette’s symptoms that seemed to come out of nowhere. Beth’s fight for a correct diagnosis, and her family’s journey, make for a fantastic, enlightening read.

The Language of Goldfish (fiction, author Zibby O’Neal, grades 6-9)–Carrie is a gifted artist, but new symptoms are taking her down the slippery slope to the world of mental illness. Through her own grit, and with the help of an understanding psychologist, Carrie successfully learns to navigate her new world.

The Center Cannot Hold: My Journey Through Madness (nonfiction, author Elyn Saks, adults only)–From age eight, Elyn Saks exhibited symptoms of schizophrenia, meaning that her gifts for law and other academics were often understated. As a Harvard law student, she suffered a breakdown and taken to a hospital where she was tied to a bed and otherwise maltreated. Elyn’s journey out of the dark side of mental illness is a heartbreaking, yet optimistic memoir.

Finding Alice (fiction, Christian-based, author Melody Carlson, adults and mature teens)–Once she enters college, Alice is faced with a new life and strange new developments, such as seeing and hearing people who aren’t there. Diagnosed with schizophrenia, Alice is thrust into a mental hospital, and must find her way out of the rabbit hole.

The Way I See It (nonfiction, author Temple Grandin, adults and teens)–This is just one of Temple Grandin’s great books. Born with Asperger’s in a time when autism was unknown and cruelly misunderstood, Temple became not only a spokeswoman for disability, but a gifted, caring, and inventive woman in her own right. The movie’s great, too. 🙂

The Curious Incident of the Dog in the Nighttime (fiction, author Mark Haddon, grades 9-12)–Christopher Boone loves to draw, loves books, is a mathematical genius, and among other things, can’t stand the color yellow. Christopher has Asperger’s, so many people underestimate or bully him. His own father is unsure how to interact with his son. But when Chris is accused of murdering his neighbor’s poodle and sets out to solve the case himself, Chris and his world are in for some major changes and surprises.

Silent Night (nonfiction, author Sue Thomas, general audiences–out-of-print but can be bought used, adults and teens)–I am a huge fan of the show Sue Thomas, F.B. Eye, which is based on a real Deaf FBI agent’s career. This is her memoir.

The Short Bus: A Journey Beyond Normal (nonfiction, author Jonathan Mooney, adults and teens)–As a student who was “labeled dyslexic and profoundly learning disabled,” Jonathan Mooney spent his public school days riding the “short bus” for “special kids” (a bus most kids with disabilities would rather hide from than ride on, according to my recent research). This is the story of how Mooney bought a “short bus” and drove it cross-country, finding people with disabilities living real lives–without derogatory terms.

 

This is not (or at least shouldn’t be) an exhaustive list. Come on–grab a book and dive in. The water’s delicious. 🙂

An Ambitious Christmas Wish

Merry early Christmas, readers! (And a merry Christmas to those readers who are on the other side of the International Date Line, where it’s already December 25th). And, to add: just because Christmas is my holiday, I haven’t forgotten my other readers. A happy Hanukkah and Kwanzaa to all you guys; I think both your holidays rock.

Since it is the holiday season, I’m sure most of us have spent at least some time thinking about gifts we will give or hope to receive. To go along with that, I’ve been thinking about gifts–tangible and otherwise–that we can give to those people in our lives with disabilities. Kathie Snow of disabilityisnatural.com already wrote a great article on this for her site. I’d like to add to it now.

On the 22nd, I found myself Christmas shopping. Perhaps because I’ve had a significant paradigm shift, perhaps because I’m thinking about disability more these days, I noticed three children with disabilities on my trip. Two, I saw in my nearest mall: a boy in a manual wheelchair, and a school-age girl in a stroller (strapped in, as well. I assume mobility issues were one culprit). The other child, I saw in a restaurant. I heard her voice, and also heard what sounded like a significant speech-related disability.

But, unlike I would have BPS (Before Paradigm Shift), I didn’t just see these children. I saw what they were going through, and what they could use. I wondered: was the boy content with a manual wheelchair? I had no doubt he could push himself just fine–if given the chance. And I know there are some great opportunities for wheelchair racing and wheelchair-utilizing sports out there, where manual chairs are used. But I wondered, too: has he ever had the opportunity to use an electric wheelchair? Those tend to give the user more mobility. I’ve looked at them online; true, the cheapest ones cost about $1,000. But in our developed nation, for a lot of people, that’s pocket change. And there are also plenty of charities, like Samaritan’s Purse (quick shout-out to you guys; you rock!) who are more than willing to give these chairs–and the gift of independence–to people in Third World or developing nations, or to those who need finanical help here.

I wondered: did that school-age girl want to be in a stroller? (Personally, I wouldn’t want to be). What other options had her family explored? And even if they had a reason for the stroller–i.e., “She’s combative,” what other options had they explored for that issue? Had the girl with the speech-related disability ever had, or been allowed to try, a communication device? And not just an alphabet board or cards with limited words or pictures, but a device that provided real, complete communication?

So, item one on my Christmas list for people with disabilities: Devices that open the possibility of wider, more adventurous, more normal lives. They’re out there. Stop saying, “It costs too much. They’re not ready. They can’t.” You’d be surprised.

Item two. You might remember, I’m a teacher-in-training. I have three degrees. And BPS, you couldn’t pay me to become a “special education” teacher. I’d seen special ed in my high school and other schools, and it was pathetic. Let me yell that: PATHETIC. Students were isolated in a set of rooms away from the rest of the school, rarely seen in the cafeteria or other social structures, and given “life skills activities” like baking cupcakes or cookies, or washing athletes’ jerseys and jock straps. (Nothing against cupcakes and cookies, but most of us don’t live on them).

But then I found out about this thing called the “inclusive school.” In these schools, “special” rooms–and the concept of “special”–doesn’t exist. Sure, students with disabilities get the accommodations they need. But they’re not over-accommodated, treated like pets, or isolated. And they learn right along with peers who don’t have disabilities. Plus, when I say “learn,” I mean “LEARN.” A disability does not relegate these kids to a day of fill-in-the-blank worksheets. I’m making it a personal goal to learn more about inclusive education. I still want to work with “regular” or “honors” curriculums, because those are the classrooms I know best. But wherever students with disabilities need or want a real education, I’m gonna be there.

Item two: Learning opportunities for myself about real inclusion, and REAL educations for all students.

Item three: Gifts and experiences that people with disabilities really want. I’ll give you one of my famous examples. During college, a friend of mine from church taught me to cook. I still need help with some cooking things for now; for instance, I don’t trust myself yet around heavy cooking materials and a stove. Bad combination. But for Christmas that year, one of my smaller gifts was an apron–because my family respected my cooking experience.

The same is true for the person with dyslexia who really wants an opportunity to read or listen to real books (not those “easy readers” special ed often relies on). The person in a wheelchair who really wants a soccer or basketball, or other sports or physical equipment–so he or she can play real sports. The person with a mental disability or illness who wants a gift that makes him or her feel just as intellectually or emotionally capable as anyone else–and speaks to his or her real age, not “mental age.”

And item four. This is my favorite. I want educators, administrators, parents, guardians, and others without disabilities to learn to think outside their comfortable “disability box.” Let me show you what happens when they don’t–and what could happen if they really, honestly would.

I hated physical education in school. Absolutely despised it. Why?

Because in elementary school, the teacher either let me just stand there during games or urged me to, “Go faster, speed up, do better.” The one time I tried to tell her I was doing the best I could, she said, “That is disrespectful.”

I’ll hold for the sardonic laugh.

Because in middle school, our PE curriculum often revolved around “mass activities” or sports. For those, I was usually sent out in the hall with another kid (usually a kid labeled “special”), to do babyish “skill” activities like hitting a ball off a cone, or balancing a tennis ball on an oversized net. Failing that, I was asked to be the scorekeeper or referee. (Translation: “Just stand there; you can’t do anything.”) In addition, this message of learned helplessness–of “can’t”–got into my head so that even if I was asked to play something for real, I didn’t want to. I knew I’d do it wrong and be embarrassed.

High school was more of the same. So as you can imagine, when I got to college and heard there was a PE requirement for all students, my first thought was, “Oh, CRAP.”

But then I learned I had options. I could sign up for Personal Fitness–which meant I chose my own physical activities and set my own pace. I was able to use my own treadmill and other equipment at home, or in the school gym. I learned to enjoy fitness, and added to the already over-3o-pound weight loss I began the summer before college. I was also able to take–and do well in–a college aerobics class. I could do a lot of the moves, and those I couldn’t, I modified for myself–without a teacher standing next to me and trying to correct me.

I did yoga, Pilates, and took cardio classes in grad school. I go to the gym every day and use the equipment I can well (such as an indoor track). I’m at an ideal weight and enjoy fitness now.

Now, what would’ve happened if my PE teachers had thought outside their box? If they’d said, “What do you like to do with your body?” If they’d asked for my input when writing “fitness goals?”

They might have discovered I love moving to music. They might have discovered I like dancing of any kind, and can do a mean version of modified jump rope. (Sure, it involves placing the rope on the ground and jumping over it, but I can clear that thing). They might have discovered I wanted to learn more about cultural movement, like salsa or ballet or samba. They might have suggested the school invest in gym equipment that didn’t scare the heck out of me because of a lack of depth perception. They might have discovered that, without their learned helplessness, reprimands, and “goals,” I might’ve wanted to try real athlecticism.

So, PE teachers–and other teachers–next time you see that student with a disability and turn to a solution that smacks of, “We’ve always done it like this” or “The school doesn’t have this, so unless the parents provide it, we won’t do it,” step back and reconsider how disabling those attitudes are.

You just might make someone’s day.

 

Good Intentions, Bad Results

Hi, readers. Yesterday, we sort of played “What’s Wrong with this Picture” with the links I gave you. Since the holiday season tends to make all kinds of games popular, I thought we’d play a different one today. I’ve heard it called Hinky Pinky or “spoonerisms,” where the answer consists of two rhyming terms with the same number of syllables. For those of you who have played, indulge me. For those of you who haven’t, have fun with these, taken from a book of word games a friend gave me several years ago. I’ll start with one-syllable answers and then move up. Here we go:

  1. Stupid finger
  2. Inebriated animal
  3. Dock for little people
  4. unreliable dill
  5. fishy operating room doctor
  6. careful pupil
  7. yearly handbook
  8. ominous clergyman
  9. tantrum Cleopatra throws
  10. display of sweets
  11. bubbly teenager
  12. meatless lover of old things

If you didn’t get them all, don’t worry; I’ll supply the answers at the end of the post. But just for fun, let’s see if you can get this five-syllable one. (Hint: it has to do with perception of disability).

Warm, fuzzy feelings that cause unfair treatment

Okay, so I’m not as good at making these up as answering them. But the answer is: inspiration discrimination.

You may have never heard of it, but you’ve probably seen it. It’s what happens when a high school boy with autism who’s never been allowed to play–or even wear a jersey–on his school’s basketball team before, is allowed to play in the last game of the season, when the team is already kicking its opponent’s butt halfway to Canada, and scores twenty points. The crowd goes wild, the newspaper has a great human-interest story, and the boy is put on a plane to meet the President of the United States.

To this, you’re probably saying one of two things. Either, “that’s weird,” or “what’s wrong with that?”

Or how about this one? A college student with a severe disability, who has entered a program that ends with a certificate, is not allowed to walk across the stage at graduation–because no one in his or her certificate-based program walks across the stage, disability or not. But several people in the university, including the entire student government, are pushing for the student with the severe disability to be allowed to walk the stage (unlike everyone else in the program).

Are you saying, “that’s weird” or “what’s wrong with that?”

If you said “that’s weird” to these examples–you’re right. Both are examples of inspiration discrimination.

So, what exactly is inspiration discrimination? Simply put, it is what occurs when a person with a disability’s accomplishments are made much of, or played up, when, if that person DID NOT have a disability, those same accomplishments would be either ignored or not given more attention than they are actually due. In other words, let’s go back to the basketball player with autism. Scoring twenty points on your own in a basketball game, especially the last of the season, when your team has already kicked booty halfway to Canada, is a big deal. But it’s probably not a big enough deal to bring the President into it, right?

Right–unless you have autism.

If that boy did not have autism, his twenty points in a basketball game would be just that. But because he does have autism, they’re a huge deal. The thing is, the huge deal is being made of the autism, not the person himself or the accomplishment. As in, “Who knew someone with a tragic diagnosis of autism could do something so good?”

Okay, let’s return to the student with a severe disability at the university (which actually happened at my university). Students, with and without disabilities, raised absolute heck when this student’s right to walk across the stage was questioned. And yes, it is true that having a severe disability and earning a degree or certificate of any kind is an accomplishment. But the question remains: if no one in your program, disability or not, is allowed to walk across the stage (because that is reserved for students who earn degrees, not certificates), should you be allowed to walk the stage only because of a disability?

If the disability did not exist, would there still be a story? Would there still be a reason to be inspired?

Maybe–but maybe not. For example, my local newspaper did a story on me when I earned my first Master’s degree–because it was the latest in a string of three degrees. And yes, CP was a big part of that story. But the thing is–disability or not, I would venture to say not a lot of people earn three college degrees in a row. If you take the disability away, there’s still a story. And–heres the kicker–said story is not based on inspiration–as in, “handicapped woman makes good.” It’s based on the real accomplishment of earning three degrees. And I propose that stories based on their own, merit-worthy accomplishments are all people with disabilities–or any of us–really want.

Think about it. How many feel-good newspaper stories, tearjerker books, or sappy movies have you seen where the character with a disability (if there even is one in a starring role) is basically there only to inspire others? “Sure, little Danny couldn’t walk or talk. But he taught me how to love?” Or, “Sure, little Sarah’s IQ hovered at 35. But she was smarter than us all, because she knew the truth–that we shouldn’t be selfish and greedy?”

Now, I’m not knocking people with disabilities’ ability to teach or do these things. If you’re the parent, guardian, friend, or other loved one of a person with a disability, you probably know this firsthand. What I’m proposing here is that it’s wrong to make a person with a disability into a martyr or a novelty–a person whose only purpose is to inspire others and take away vices and avarice from his or her corner of the world. It cheats them out of a real, normal life. And when we make much of them for doing something that, had there not been a disability in the equation, wouldn’t be a big deal–say, sitting on the couch–it cheats them even more. Plus, it puts them in a box: “The only thing we can really be proud of Sarah for is her ability to button a button, after months and months of therapy.” And it makes those of us without disabilities seem or feel incapable of being inspiring–when we truly can, and truly are, every day.

Let’s get them out of the box. Let’s replace inspiration discrimination with real inspiration–for all, disability or not.

 

Answers:

1. Dumb thumb

2. Drunk skunk

3. Dwarf wharf

4. Fickle pickle

5. Sturgeon surgeon

6. Prudent student

7. Annual manual

8. Sinister minister

9. Egyptian conniption

10. Confection collection

11. Effervescent adolescent

12. Vegetarian antiquarian

What’s Wrong with this Picture?

I remember playing that game, either in school, in therapy (to improve my depth perception, with mixed results), or in waiting rooms, in those old Highlights magazines. You know the one: there’s a big picture of a room–say, a kitchen or a library–filled with items that don’t belong there. Your job becomes finding the items that don’t belong, circling them, and in most cases, crossing them off from a list at the bottom of the sheet or page. It’s a fun game.

But for people with disabilities, “what’s wrong with this picture” isn’t a game. It’s real, it’s raw, and it’s ugly. To show you what I mean, I’ve added a link to a video from Allison A. Hillman. Ms. Hillman works for Mental Disability Rights International (MDRI), and has seen things most of us have only seen in movies, on TV, or in nightmares. Click the link and take a look:

http://www.youtube.com/watch?v=JfPrfRQ9d4U

(Or, just go to youtube.com and type in Allison A. Hillman; the video is the first hit).

See what I mean?

Now, you may say, Chick, you’ve really gone off the deep end this time. That’s happening in Third World countries, not here in America. Americans know better. But do we? You guys know what time it is, right? Right–Example Time. Reality Check. Take a look at these videos: one from the ASPCA, and the other, a trailer for the movie hDolphin Tale.

http://youtube.com/watch?v=9gspElv1yvc (or type in “ASPCA Infomercial” and click on “Sarah McLaughlin Animal Cruelty Video.”)

http://www.youtube.com/watch?v=V82taXARXhs (or click on “Dolphin Tale Trailer.”)

Do I believe we should be cruel to animals? Absolutely not. Abusing God’s creation = abusing the power He gave us to make sure they’re provided for and well-loved. Do I believe animals are unimportant? No. However, I do see massive, unacceptable irony in these clips, in that people will do everything they can to make life better for an animal. But when it comes to a person–a person–with a disability? Not so much.

You’ve heard it or seen it. When a parking space or automatic door, electric toothbrush or some other technological tool, is earmarked as “special for the handicapped,” it “costs too much” or “is too much trouble.” (Yet, when a store puts in automatic doors just to make an “upgrade,” people love it). If a teacher or administrator told you that your child without a disability had significant trouble with reading and math, and would never master either, you’d tell said teacher or administrator to take a long hike, and get your child the help they truly needed (not “special” help in a closed-off room). But when this happens to a child with a disability, they’re placed in the “special room” (which kids without disabilities often call the “retard room”), and placed on a service list so they can be “assured” of “proper placement” when they age out of special ed at age 22. If someone grabbed hold of your non-disabled child by the leg and pulled or yanked until he or she screamed and cried, you’d turn that scumbag in for child abuse. But when a therapist does it to a child with a disability, it’s considered acceptable. In fact, Kathie Snow writes that when she saw this happen to a two-year-old, the little boy’s mother snapped, “You better cooperate or I’ll spank you when we get home!”

Yet, when an animal is injured or “disabled,” we do everything we can to make sure that animal has “the best life possible”–sometimes at the animal’s expense. To get personal for a second, I’ve seen it up close. My grandmother has a dog, Cuddles, that is unfortunately paralyzed. This poor animal cannot move or even go to the bathroom without human assistance, and is clearly suffering. Yet, instead of “put it to sleep” (which was often the solution for PEOPLE with disabilities way back when), this dog has been provided with expensive physical therapies and its own wheelchair. (Yes, they make wheelchairs for dogs). ???????!!!!!!!?????

Thomas Aquinas explained this a lot better than I can. He (or maybe it was Augustine; can’t remember right now), said there was a natural order of things–a chain, if you will. The chain works like this:

God–Angels–Humans–Animals–Plants–Rocks/other matter

Notice where humans are. “Created a little lower than angels” (Hebrews 1). That means, as beings with souls and the ability to reason, humans need “the best life possible” even more than animals do. Now, again, that doesn’t mean you should take your dog or cat and throw them against a wall. That would be cruel and ungodly. But it’s even more so when we, literally or figuratively, take humans–of any ability level–and throw them against a wall.

So, let’s find what’s wrong with the picture of the way we think, and make it right.

 

“Make Them Whole”–The Controversial Cure Post

You knew it was coming.

Okay, so maybe you didn’t. But since this blog is dedicated to the real lives and experiences of people with disabilities, I think it would be negligent not to address the phenomenon of “cure.” For so many people without disabilities, cure represents everyone’s fondest hopes. If disabilities could be cured, they say, people with disabilities would be “normal.” We wouldn’t have to worry about, accomodate, provide for, care for, or pay for them, because they could care for themselves. The Cure, elusive though it may be, is the best thing for all society, and so those who can–which conveniently excludes the “poor disabled person”–should work to find it. Meanwhile, we can continue to hold out hope for The Cure by splashing it all over the media. I’m talking about books, movies, television, televangelists, and research foundations whose sole purpose is finding The Cure.

You do know what I’m gonna say to that attitude, don’t you?

Right. It’s baloney.

Please understand what I am not saying. I am not saying searching for The Cure is in itself bad. Science, technology, and the medical field has made some huge strides in the past century or so, and if they can use those strides to prevent or cure disabilities, that’s fine–as long as the cure is something the person with a disability actually wants. That is, if a person who’s deaf actually wants a cochlear implant (which, by the way, does not “cure” deafness as many people believe), then he or she should get one. But–but, but, BUT–he or she should not be coerced or coaxed into getting the implant because deafness is “wrong” or a “defect.”

Therein, I think, lies one central problem with The Cure. So often, people without disabilities see the cure as a solution to what is “wrong” with a person who has a disability. Yet, what would that solution ultimately do? That’s right–it would ultimately make that person just like everyone else–as in, acceptable to us. Such an attitude perpetuates the idea there is a line between “us” and “them” (“them” being those who have disabilities), and that they must change for us in order to be accepted.

For example: let’s say you have a child with cerebral palsy. It could be mild or severe–doesn’t matter. Your child is still very young–say, newborn to three or so. But you’ve already been told, courtesy of “the experts,” what he or she will never be able to do (instead of the myriad of things he or she probably WILL be able to do, which is a bad construct in itself). Your dreams of seeing him throw a football, of seeing her star in her ballet recital, are dashed. But, but, BUT.

What if someone offered you The Cure?

You might take it. And if you did, I would be the last to judge you. Remember, I have CP too, and I freely admit that I have prayed for a cure on more than one occasion, facedown with my nose in the carpet. And I’d venture to say, you might be right to take it, considering how society still views people with disabilities (as covered in other posts). What parent would want his or her child to go through that?

But think of it this way. What if The Cure presented very high, very real risks to your child? What if it backfired, and your child ended up “worse” than before (a construct we have thanks to a disability hierarchy that also needs to go out the window). And what if–as often happens–“the experts”–the doctor, the therapists, whoever–pushed you to take The Cure because of a bleak prognosis? What if their pervading attitude was, “you must accept our cure because otherwise, your child will be considered abnormal and wrong?”

Not so easy a choice, is it? And the fact is, we as a society–myself included becuase, remember, I used to think like this–only make it harder. Don’t believe me? Okay. Let’s take a look at a few of my famous examples.

  • Children’s Books and Films. I’m talking about The Secret Garden, Heidi, What Katie Did, Pollyanna, and so many others. True, these were written and filmed centuries ago, and yes, thankfully,our perception of disability has undergone major change since then. The problem is, these stories are classics, and so they endure. That in itself is a good thing; I loved these stories as a kid, as would many other kids, I’m sure. Yet, what endures with this “classic” label is the disability construct the authors wrote about. Think about it. Klara, with Heidi’s help, works long and hard, and is rewarded by being able to walk again. Colin, too, walks again, and becomes far less spoiled. Katie and Pollyanna end their books with paralysis, but they are given the promise of a miracle–paralysis-reversing operations. Fine for the era in which these stories were written and/or filmed–but what do they truly teach? They appear to teach that (1. If you work hard enough, your disability will be cured/go away, and (2. Disability, and the subsequent cure, is the only way an unlikeable character can become less self-absorbed or spoiled, and thus a likeable person.

I. Don’t. Think. So.

Think about it. What would’ve happened if, instead of pinning all their hopes on cures, the families and friends of Klara and Colin, and many others, had looked beyond the disability? Pushed them to do whatever they could, as well as they could, instead of spoiling and pampering them? Opened the real world to them?

Yeah–I like that better, too. The truth is, no matter how hard the person with a disability works or wishes on a star, a cure may not be there (heck, we can’t even cure the common cold yet). Plus, there’s always the impossible question: which disability would you cure first? How can you choose? Then again, there are those who claim all disabilities can be cured, like:

  • Televangelists. I’m going to say something some of you won’t like: in general, I have no use for televangelism. And yes, that includes the 700 Club and all its relatives. Why? Not because of theological differences. At our core, I think we can all agree Jesus is the one and only Savior. No–I dislike televangelism because of the manmade “cures” it promotes. As in, “Donate X amount of money, and all your problems will disappear. Pray hard enough, and the chains of abuse and addiction will permanently fall off, never to be felt again. Come to us, and your disability will be healed.” Are there authentic faith healers? Yes, probably. Are there authentic healings within the church? Yes again. But on the other hand, why does the church perpetuate The Cure as the only solution to disability, instead of accepting and opening real-life possibilities to its congregants with disabilities? (For more on this, see my post on disability and the church).
  • Language. Speaking directly to those with disabilities, and their families, friends, and colleagues for a moment: how many times have you heard pitying remarks about your disability? How many times have you heard “I’m praying/raising money for a cure? Hang in there; you’ll walk again soon (a la Christopher Reeve)?” “If only something could make them whole…”

This last one actually happened to me when I was ten. I was extremely upset because I had to get another round of Bo-Tox shots (a temporary “cure” that only works for a few months at a time). My grandmother was along for the trip, and she said: “If I could, I would make you whole and take your place.”

Now of course, at ten years old, I didn’t know why this bothered me. But it did, and still does. Why? Because the remark, though well-intentioned, insinuated I was not whole. Broken. “Wrong.”

So no–don’t give up looking for cures, because they may be out there. But in the meantime, instead of treating the person with a disability in your life as someone whose only hope is The Cure, make some changes. Instead of asking him or her to change for you (walk, talk, and act the way “normal” people do), become open to accommodation and new ways of doing ordinary things. Ways that will include people with disabilities–as whole, functioning people filled with potential–in real, natural lives.

It’s Official: I am Insane

Hello, readers! It’s nice to be back with you after a two-day break from blogging. I’ve been busy Christmas shopping and dealing with a slight body-ache/sore-throat bug, so I wasn’t able to correspond with you yesterday. But here I am, and we have plenty to talk about. First, a couple of housekeeping issues:

For those of you who read the “Good Cripple, Bad Cripple” post, you may have noticed “bad” cripples (those who don’t play the disability game as the world would have them play it, which I applaud) described as “achieving independence in a ritualized way and never asking society to change for them.” This was a slight mistake; I meant to say that “good” people with disabilities are the ones who act this way. Forgive the syntactical error. 🙂

For those of you who have read posts in which I wrote I had never met any people with disabilities content with what we would call simple jobs, I am proud to revise this. I have “met” some wonderful people with Down’s Syndrome, over the Internet, through a positive Down’s site. One, Bobby, is 17, works at Chick-Fil-A, and loves it–because there, he is treated like a person. The same is true for Heather, a 32-year-old woman with Down’s who works as a laundress at a nursing home (oh, the pleasant, rich irony!), and says she likes it so much she plans to work there until retirement. 🙂 Brava, and thank you, Bobby and Heather, for showing me this brand-new truth–satisfying work for people with disabilities can truly be found anywhere. Also: brava to Miranda and Jennifer, two women with Down’s who, respectively, have started their own business and are living on their own. The inclusion of people with disabilities grows daily, and I am thrilled to be able to learn about and help with it.

Now, on to the next part: why am I insane? Well, there’s a two-part answer to that question. First, I want you as my readers to understand, advocacy is a brand new journey for me. Never in a million years did I expect to be doing this, because disability has always been the last thing I ever wanted to talk about with people who did not know me. So, it’s insane for me to be going down such a path. And I admit, along the way, I may have made some “insane” claims or mistakes. For example, if you are a doctor, special education teacher, group home worker, or other special services provider, I realize I may have unintentionally smeared you. I am still learning how to balance my passion to see that all people with disabilities have a chance at real lives, with the reality that some disabilities are so severe, extra caregivers or other services are legitimately needed and can be performed the right way, without abuse. I am still learning that, done the right way, therapy can be useful, beneficial, and even fun. So, this is quite the insane journey for me. But if you are a person with a disability–or the parent, guardian, sibling, friend, or spouse of one–hang on. I am here primarily to advocate for you and yours, and we’ll learn together.

Secondly: I am insane because I will still push for people with disabilities to have the best, most normal, and most adventurous lives they can. And I realized this week that sometimes, this means believing in the impossible–or what we think is impossible. You may have noticed that the picture this program calls a “gravatar” has been changed to a red high heel, for two reasons. One, I adore red shoes, and I believe every woman needs at least one pair of sparkling, attention-grabbing, kick-butt red shoes. Two, I don’t own any–yet, because most of them are high heels, or are wide, flat shoes that slip up and down on one’s feet. I cannot walk in shoes like that; I literally fall over. But in wonderful insanity, I am choosing to believe in a world of mounting assistive technology use, they will one day invent a way for me to wear real heels.

Another example: yesterday, I went to church with a friend from out of town. Afterward, we had a long and beautiful conversation, during which she told me about a neighbor of hers with two autistic children. The son has a milder form of autism, but the daughter is combative at therapy, is in second grade and still learning to clean herself, and would legitimately need to be placed in a caring group home if something happened to her parents, because there are no relatives willing or able to care for her. I can understand that predicament. I am learning to accept that not all people with disabilities can be placed in a “box” that says all institutions or group homes are the bad guys. Yet, I cannot help believing the impossible. What about communication devices for this girl? New therapies? A way to reach out to her? I believe it can be found, and will be, someday, group home or not.

It’s Christmas, readers. It’s the season of impossible and beautiful insanity. Will you believe with me? Can we learn together?