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Archive for November, 2016

Blog Bonus: You Might Live With a Disability If…

That’s right. It’s been a while since the last bonus round, so today you get one.

You might remember that way, way back when this blog was new, I did a post called “Disability Humor: What Are We Really Laughing At?” I took a close look at what passes for disability-related humor in today’s world to find out if it was really funny. Some of it is, and some encourages us to laugh at PWDs, not with them. For example, you might remember some horribly offensive nuggets of humor like, “Why Beer is Better than R-Word People” or “You might have a disability if you get excited over a gadget that lets you wipe your own bum/spend all your time in the hospital/are glad Grandma understands when you wet your pants.”

This type of “humor” perpetuates stereotypes of persons with disabilities as ill, stupid, incontinent, and unpleasant to be around. Just rewriting and revisiting it makes me cringe. However, we could all use humor in our lives, and sometimes living with a disability is funny. Sometimes that’s because the temporarily able-bodied world doesn’t “get it,” or because, as happens for everyone else, things don’t go the way we plan.

So I thought today, I would share with you a list called You Might Live with a Disability If. I have tried to represent several different disabilities and speak to relatable experiences. Some tidbits come from my own experience as well. Here we go:

You Might Live with a Disability If:

  1. You can rattle off the full names for IHP, IEP, and IFSP, and know the differences between them.
  2. You know the difference between an IEP and a 504 Plan, and which one you need/want.
  3. You regularly fight with elderly, yet able-bodied people over parking spaces.
  4. You are tired of explaining to people why they cannot pet your guide dog/service animal.
  5. If you use a laser-guided head mouse or other tech, you have fantasized about setting the laser to “stun.”
  6. Your wheelchair, braces, walker, or cane could be considered weapons of mass destruction.
  7. You regularly pray against the temptation to roll over someone with your wheelchair.
  8. If Deaf, you have ever turned your back or taken out your aid/implant just so that obnoxious person will shut up.
  9. You love cursing at non sign-language speakers, esp. when they think you’re being complimentary.
  10. When you say to a TAB person, “I can’t use a pencil,” you have been asked if you’d like a pen.
  11. You have popped a wheelie while going up or down a curb.
  12. You can spot inspiration porn 5 miles away (your radar is set to “high” from December 1-25).
  13. You love the look people give you when you say you don’t want a cure.
  14. If you hear, “You are such an inspiration” one more time, you are going to scream/potentially maim somebody.
  15. Somebody says, “But you don’t look disabled” and you say, “You’ll blow my cover!”
  16. You know more about universal design than the average architect.
  17. You have used Tourette’s tics for the express purpose of scaring obnoxious people who make fun of/ignore you.
  18. When someone speaks to you verrry slooowlly and LOUDLY or calls you “honey” or “sweetie,” you love to shock them with your knowledge of quantum physics/British Lit/Euclidean geometry.
  19. You tell your VR representative you want to be a professor; he chokes on his coffee.
  20. You say things like, “It’s an autism thing” or “I only look neurotypical.”
  21. You have watched, or participated in, disability simulations and laughed at what the poor TAB suckers got wrong.
  22. You would like to personally punch Dustin Hoffman in the face.
  23. That goes for Clint Eastwood, too.
  24. You own T-shirts with sayings like, “Keep staring, I might do a trick” or “If I throw a stick, will you leave?”
  25. You know those TAB people are underestimating you. It’s okay. They don’t yet know your plans for world domination. (Cue Pinky and the Brain theme music).

I’m open to suggestions for others, so feel free to post them in the comments.

Accepting Exceptions: Why Can’t We Do It for PWDs?

Hello readers,

I hope everyone had a marvelous Thanksgiving. If you are sufficiently awake from your turkey and pie comas, I have a new post for you.

I got the idea for this post while watching a Hallmark Christmas movie (yes, I’m a sucker for them). This one’s called A Christmas Melody and features a single mom and her nine-year-old daughter Emily. They’ve just moved from Los Angeles to Silver Falls, Ohio, in time for Silver Falls Elementary School’s annual Snowflake Pageant (kind of a Christmas-themed talent show). Emily loves to sing, so Mom asks if she can audition even though the family had not moved until after tryouts. The head of the PTA, a grown-up “mean girl,” is unsympathetic. “If I make an exception for your child, I have to make an exception for every child,” she says with a self-satisfied little grin.

As with so many of these situations, I understand her logic. There are situations in which it holds up. For example, if a child in Emily’s school who had known about the auditions but chose not to try out at the appointed time suddenly wanted to do so, yes. I could see saying “no exceptions.” If Little League is only for kids ages 6-12, it would be unfair to make an exception for a 13-year-old who was twice the size of the other kids and whose birth certificate clearly stated he was 13. If a school chooses to go peanut free because a high percentage of the kids have allergies, I could see saying, “All snacks/desserts absolutely must be peanut free.”

However, I question this idea we have that exceptions are always a bad thing, or always mean the person requesting them is an entitled little snot. For example, Emily didn’t know about the pageant, and it’s not like Mom could’ve called the school and made arrangements ahead of time–would it kill the PTA to let her try out, even if she didn’t get a part? If a child’s family does not celebrate Christmas, is it such an “exception” to acknowledge his or her holiday?

This is a particular conundrum for people with disabilities and their loved ones. It often starts in childhood. Let’s say Max is in the second grade, the year when handwriting starts becoming a major focus. Max has cerebral palsy, or another disability which makes his handwriting illegible and makes writing painful for him. However, he can type on the computer. Yet his teacher insists to Max’s parents that,

“Every child in my class must complete handwriting assignments. If I make an exception for your child, I have to make an exception for every child.” Meanwhile, Max’s classmates are expected to learn to type as well as write, because it’s part of technology. His classmates are rewarded with computer time, but Max is exempt because, “We don’t want him taking the easy way out.”

Another example: Ashlyn is in middle school. She has a sensory processing disorder (SPD) that makes eating certain foods unbearable. Her parents are not able to pack Ashlyn’s lunches, so Ashlyn must eat in the cafeteria. Her school follows a program that says children must eat X number of calories and X types of food each day. Leaving aside how ridiculous I think that is, these programs do exist.¬†Ashlyn has tried to explain her SPD, as have her parents. The response they get is,

“If we make exceptions for your child…” You get it. “Plus, Ashlyn is too old to be a picky eater.” (By the way, I know a little girl with an SPD like this. It is far more than picky eating, just as other SPDs are far more than itchy clothing or other troubles. But SPDs continue to be highly misunderstood).

Last example. This one is partially ripped from the headlines of Disability Scoop. Sabine is a middle school student with Down Syndrome. Per IDEA and laws regarding least restrictive environment, Sabine is entitled to an education in a general ed classroom alongside peers without disabilities. Despite the family’s objections, the school continually pulls her out of general ed classes for several hours a week in a segregated classroom. The rationale given is, “This is how we educate students with needs like Sabine’s. If we make an exception…” Along with phrases like, “This is what is best” or “This is what Sabine’s evaluations indicate she will benefit from.” Never mind what Sabine or anybody else thinks.

This whole “exception” thing really burns me up, for a couple of reasons. One, exceptions are made all the time, for people without disabilities, for a number of reasons. The Jewish child in your kid’s class is allowed to go to recess with other kids instead of watching a Christmas movie, if he or she wants. A black high school student is given an alternate English assignment because he or she legitimately feels a book that uses the N word and other slurs is offensive. An adult invited to a wedding at which no vegetarian dishes are served is allowed to make an exception for him or herself by bringing food from home or speaking to the chefs ahead of time.

Yet, people with disabilities are “entitled” if they ask for exceptions. I’m not talking about reasonable modifications here, although those often get shot down, too. I’m talking more about alternatives that could be presented when reasonable modifications aren’t available. I’m talking about exceptions that can and should be made to ensure people with disabilities are afforded dignity, respect, and a level playing field.

In many cases, these exceptions don’t exist or are not allowed. The TAB world rationalizes, “We can’t make exceptions because it encourages entitlement/is the easy way out/is too hard.” They say people with disabilities cannot do the same things everyone else can–but in the same breath, they expect PWDs to do things one way, or not at all. Let’s return to the example of Max and the computer. His teacher could, and should, allow him to use the computer because it is his one means of legible handwriting and possibly passing that part of the curriculum. Yet he or she decides, “Well, majority rules, so like everyone else, Max should only get computer time when he has earned it.”

It’s yet another of the double standards PWDs confront and fight every day of their lives. Often, as is the case with families like Sabine’s, they lose the fight. Why? Because “the system,” whether that be the school, the college, the court, whatever, persists in thinking “fair” and “equal” means “everybody gets the same thing.” No–I cannot say this enough. Fair and equal only happen when everyone gets what they need to level the playing field. It’s common sense, so why don’t we use it?

Besides that, when the TAB world continually refuses to make exceptions for PWDs, they label them with more negative stereotypes. As in, “People with disabilities are lazy because they’d rather use the dishwasher than wash dishes/eat out than cook/type than write. They are entitled and spoiled because all they do is ask for modifications and exceptions. They will never be like us, so it’s better if we segregate them.”

Wow. It blows my mind that people would rather do that to their fellow human beings, than make slight exceptions that could level the playing field. Think about it. If we made exceptions when we needed to, what might we learn about PWDs?

Perhaps we’d finally see the truth about them–that they are capable, can learn, can function, and can contribute. Perhaps we’d learn these people are exceptional, not because of disabilities but because they are humans with whom we share our world.

Where Is the Love: Why are We Teaching PWDs to Hate Themselves?

Hello readers,

I really hesitated to write this post. After last week’s election, there is already so much ugliness and hate in the country, on both sides. Who needs more discussion about hate? I sure don’t. But sometimes it takes identifying the problem and admitting it exists before we can fix it.

Quick disclaimer: This post is not political in any form, nor will I take sides. The only thing I am going to say is, the inclusion of persons with disabilities and the fact that the world teaches them to hate themselves, is not a political issue. Yes, some candidates are better at representing PWDs than others. But changing how disability is viewed in America and around the world is not the President’s responsibility. He or she can sign laws that help, yes. But if individuals do nothing, the face of disability will not change.

Ahem. So, on to the meat of the post.

It may seem “radical” or “extreme” to say the world teaches people with disabilities to hate themselves. Most of you might say something like, “Chick, I know/work with/have a child or loved one with disabilities. I love and respect them and that’s all I’ve ever shown them.” If so, that’s good. You can be proud of taking your own stand. But the truth is, people with disabilities are taught to see themselves as inferior in a variety of ways.

One way is in the words we use. No, I’m not talking about people-first language or words like the R word, although those play into it. I’m not even talking about the clinical terms doctors use. For the purpose of this post, I mean words like:

-Deficiency

-“He doesn’t do X like a ‘normal’ child”

-Deficit

-Below average

-“I am a ____ (fill in disability) parent” (before or instead of, “I am a parent.”)

-“No, Ben, don’t sit that way. Don’t walk that way. Write, don’t rely on the computer.” Sometimes these particular phrases get downright nasty. For example, my first-grade teacher once came up to me in the cafeteria while I was eating a sloppy joe and said, “You are eating like a baby!” Another time, my second grade teacher decided that because it was Christmas, the class would eat lunch in our room while watching a movie (How the Grinch Stole Christmas–the real version, not that Hollywood remake travesty). Because she felt I made a mess spreading my lunch on my desk, she told me to sit away from everyone at a back table.

I also mean the way we approach, or do not approach, persons with disabilities and their lives. I got the idea from this post after hearing a rather disturbing sermon at church. My pastor spoke about racism, inside and outside the context of the election. His point was, go across the street and love your neighbor as Jesus said to, no matter what side they took. Reflect on how those neighbors’ lives might be impacted because of race, national origin, whatever. Essentially, check your privilege at the door.

He even rolled a clip from Remember the Titans. If you’ve seen the movie, it’s the clip that starts seconds before a thug throws a brick through Denzel Washington’s character’s window. Later on, the white football coach essentially tells this character he brought it on himself. Denzel responds with an impassioned speech that drives home the point that this white guy doesn’t know what it’s like to live in his shoes. “Welcome to my life, Yost,” he concludes.

I don’t disagree with my pastor’s overall point, and I don’t disagree with that clip’s message. But all I remember thinking the whole time was, “Okay, so if you’re standing up for blacks, Hispanics, Asians, people of other national origins…where do I fit in?” My pastor also mentioned other prejudices, such as generational prejudice (against the young or elderly) and political prejudice. Guess what was never brought up?

Right. Disability.

Now, am I upset that I personally did not get mentioned in that sermon? No way. In fact, had my pastor singled me out I’d have sent him a strongly worded email Monday morning. Here’s my point: disability is not treated as part of diversity. It is not celebrated like skin color, age difference, national origin, orientation, or religion. Yes, that last one can be a little tricky when you have to promote your own religion as a pastor or teacher, but it can and should be done.

Instead, people with disabilities are seen as inferior or “broken.” They are “special friends” or “inspiration porn,” not real people. Persons without disabilities might even say things to them like,

“Have you considered this may have happened/be happening because of sin in your life?”

“Maybe if you weren’t so selfish/vocal/angry, people would be more inclined to listen to you/give you access/modify stuff.”

“You know, [insert deity of choice here] can heal you if you believe.”

“Maybe if you stopped complaining about what you don’t have, your life would be better.”

And all I can say to that is: really? What the freakity freak? Back off, bucko. Stop telling me to check my privilege because I’m white, straight, female, Christian, whatever–unless you are just as willing to check yours. There’s the door; don’t let it hit you in the butt.

When did we decide this, though? When did we, as a society, make up our minds that persons with disabilities were not “diverse,” were not meant to be celebrated, were “less than” because of what they could not do? Sadly, some of it comes from our own churches or perceptions of God. People often twist Scripture, particularly verses about God’s instructions for sacrifice, to mean that He hates PWDs.

Now, does God hate persons with disabilities? No, I do not believe so. But is the world responding to them in a godly way? No again.

It’s not just the church, either, or even the words we use. Next time you go out, look around you. How many persons with disabilities do you see, and what do they look like? How many PWDs are:

-Teaching your children?

-Recommending a popular retail item to you (instead of simply wrapping/bagging it)?

-Serving your food (not just washing your dishes)?

-Coaching your rec league team, or playing on it?

-Dressed in fashionable clothing, with a well-groomed body? (I was out shopping yesterday and saw a young man with Down Syndrome whose hair was a wreck. Maybe he liked it that way, but what if somebody just said, “Screw it; go out that way?”)

-Oh, this one was and is a biggie: voting in the booth next to yours?

Nine times out of ten, when I go out I am the only person in the environment who needs assistance or has a visible disability, unless you count significantly aged folks using walkers, canes, etc. Does that cause self-hatred? No, not always. But it does drive home the reality that I am not the majority. Most people are not like me and most people wouldn’t want to be.

Now, I’m not saying, “O, woe is me, I hate myself and everybody like me hates themselves, too. Why don’t we just go eat worms?” No. What I am saying to you though, is that PWDs struggle harder than most to deal with negative self-concept. If I wanted to, I could make an argument that it’s somewhat inborn.

I know what you’re going to say: black kids, Asian kids, Buddhist kids in predominantly Christian countries–they all have that, too. Yes they do, and it’s something we should continually work to deal with. But those children grow up hearing that there are positive things about being X (whatever their differences are). They grow up hearing, “You can do/be anything you want.” While PWDs grow up hearing,

“When you grow up, Mom and Dad will make sure you’re safe/have what you need.”

“You’re 14 now, so it’s time to start working at job sites, so maybe VR can get you a job someday.”

“You can do the things other people approve of you doing.”

I mean, really. Who wants a life like that?

It’s even hard when your friends try to refute those negative messages. I know, because I have friends who do. They say things like, “You’re an inspiration to me not because you’re disabled, but because you’re smart/eloquent/whatever.” “I don’t see you as disabled.” A particular woman with whom I share a Bible study group loves to say, “We all have disabilities.”

Without going into the fallacy of that statement (because sometimes you wanna slap people but you’re trying to stay on track with Jesus), what do you do with that? Those statements are well-intentioned, but I’m not completely convinced of their value. That is, sometimes they make me feel better and sometimes they don’t. Sometimes they’re not even compliments (like the “we all have” thing. That’s not a compliment, and it doesn’t make me feel better. More than anything, it denies my experience and my right to express that experience).

People with disabilities can and do develop positive self-concepts. They can and do legitimately inspire people. Too often though, their inspiration and potential is reduced to sentimentality. Too often–as in my experience–they’re given a few hours of time each week, and people leave, thinking they’ve done their good deed for now. PWDs routinely battle loneliness, depression, and anger, some of which lead to negative behavior. And then they are blamed for having “bad” emotions. The self-medication, addiction, and suicide rates for PWDs–I do not even want to go there.

I’ve said it before but I can’t say it enough. People with disabilities are people. We are not objects. We are not good deeds. We are not something to use, to make yourself feel better (that’s why exercise, pizza, chocolate, dogs, Netflix, and romance novels were created). But the way we’re being treated right now? The way we’ve been treated since time immemorial?

It’s reinforcing that we are “less.” I speak from experience–on a bad day, it has caused me to literally look in the mirror and scream, “I hate you” at the woman looking back.

Jesus said love your neighbor, yes. But He didn’t specify that neighbor’s ability level. He also said “Love your neighbor as yourself.” And my question is, why does the world expect PWDs to love and serve their neighbors, but hate themselves? That, not disability, is the real tragedy.

Disability does not = inferior, broken, less, or any of that. Disability = natural diversity, talent, strength, love, and opportunity. Let’s change our equations, shall we?

Poor Parental Me: Why Are We Martyring the Parents of PWDs?

Hello readers,

Parenting a person with a disability is a unique experience. These parents need understanding, compassion, support, and healthy outlets for their emotions. I am not for one moment disputing this. However, I’ve noticed a disturbing trend when it comes to parents of PWDs.

Much of the narrative surrounding these parents focuses on how hard it is to raise, nurture, and care for a child with a disability and especially an adult with one. A lot of the acceptance rhetoric you see, focusing on accepting the emotions of the parent (s) rather than the persons with disabilities in their lives. Humorous blurbs say things like, “Oh, you’ve met one child with X disability? Please excuse me while I take notes, because clearly you’re an expert on my child.”

Again, disability is hard sometimes, for everyone involved. What I think the TAB world forgets though, is that at the end of the day, only the person with the disability knows what it’s like to live with it. Yes, that person’s family members need support, but where is similar support for the PWDs themselves?

You might remember that awhile back, we talked about how vital it is to respect the experiences of PWDs as their own experiences, not someone else’s. That’s still vital, but sometimes family members appropriate the experience, intentionally or not, because they’re so close. Parents, as the closest and most loving family members, are often the most guilty.

I’ve seen plenty of stories, articles, posts, and memes around the Internet that let parents of PWDs know, “We’re with you. We know how you feel” (even if the writers technically don’t because well, nobody can know how another person *really* feels until they’ve been there). These articles, stories, posts, and memes say things like:

-That face you make when somebody says they’re “sorry” your kid has autism.

-How you feel when your kid got through therapy without a meltdown (somebody jumping up and down cheering, dancing in the rain, whatever).

-It does not take a special person to raise a special needs child. Having a special needs child makes you special. (Not going into the flaws of this one; we’ve discussed the implications of “special” enough).

-My child with X disability taught me Y, Z, and A things about life/what life is all about.

 

I cannot emphasize enough, there is nothing wrong with any of this (except if you continue to refer to your child in ways that paint him or her as “less.”) But why is there a dearth of voices saying:

-I have a disability, and it teaches me X, Y, and Z–even when I don’t want to learn the lesson? (And on those days, I sometimes find the lesson is even more precious).

-That face you make when yet another person greets you with, “What’s wrong/what happened?”

-How you feel when your therapist/medical expert actually listens to you.

-It doesn’t take anything special to raise me. Just love me.

 

Thankfully, increasing numbers of parents and family members see disability as natural and beneficial to the world. For example, there are now “autism positive” communities throughout the Internet and the real world. Bravo for them, because they are speaking to PWDs’ experiences. They’re saying things like, “My child is different, not less. My disabled child grew up to be a disabled adult and should not be dismissed/forgotten. I am my child’s advocate/voice.”

Yet these communities are still speaking primarily with the voices of parents, and that is potentially harmful. Why? For a couple of reasons. One, when you constantly send the message, “The parent is the primary advocate for a child with a disability,” you may stunt self-advocacy. Parents are wonderful, but they are not always around. Disability or not, there comes a point when we all have to advocate for ourselves, and we need to be confident enough to do it.

Two, when disability-positive messages are focused solely on parents, they paint the parents as saints, heroes, and potential heroic martyrs. That cheats the parents out of being human, and it teaches children and adults with disabilities to regard themselves as “less.” As in, “I’m not the important one in this picture; my mom is. I don’t do important things, my dad does. My aunt and uncle have given up their whole lives to raise and nurture me. It’s hard, and I feel guilty that it’s hard.” That particular message often morphs into, “Why can’t I do more/be more? What can I do to fix myself? What can I do to make it up to my family, for having someone like me?” Over time, PWDs can learn to hate themselves (more on ther this month).

Finally, whether positive or negative, focusing all disability awareness/acceptance on parents silences PWDs’ voices. Therapists, teachers, and other “experts” do this all the time, but it’s potentially more harmful when a parent does it because he or she is the person’s first nurturer, supporter, and advocate.

I’ll give you an example. Let’s say Catherine and Raymond have raised Sawyer, a son with a disability (any disability; for our purposes let’s say it’s autism/ADD). Sawyer’s sister Jenna, who does not have disabilities, grew up watching her brother receive services, extra attention, and what have you. All three know the joys of having Sawyer in their lives, but they also know the hardships. So Catherine and Raymond decide to write a book about their experiences, consulting Jenna and/or Sawyer as needed.

On the surface, this is a good idea. The more voices that speak to the disability experience, the better. It could be a memorable family project that strengthens bonds. But there are three ways this book could go horribly wrong:

-The book leans too negative. Catherine and Raymond write constantly about their negative experiences, which may make Sawyer feel lousy. However, because those negative experiences are “truth,” the public may applaud the book, even if it paints disability in a negative light. Sawyer’s parents may hear things like, “You’re so brave! I could never do what you do. I’d tear my hair out if I had to live like that.”

This particular problem comes with a double standard. That is, let’s say the book leans negative. Sawyer knows only half (and maybe not even half) of the truth of his experience has been told, so he decides to write his own book. In it, he talks about the hardships he experienced as his family struggled with his autism/ADD. The public may accept that–or they may say things like, “How ungrateful! Your family took care of you when no one else would’ve. Why are you so mean?”

Yes, this happens. Parents and family members are allowed to say whatever they want about disability–but when PWDs express their feelings, it’s somehow “mean” or “unthankful.” (What? Double standard much)?

As for the other two ways this book could go wrong:

-It leans too positive/toward inspiration porn. The focus is not on family ties, Sawyer and Jenna growing up to be healthy people, or even Sawyer doing wonderful things on his own merit. Instead, the focus is on, “Look what a good job Raymond and Catherine did raising their special son.” Worst-case scenario, the parents may appropriate credit for everything positive Sawyer does, because after all he never would’ve been able to do them otherwise. (Yes, parental support is important, but we need to give our kids their own credit, disability or not).

-The book focuses more on Catherine, Raymond, and Jenna, as the “normal” people living with the disability, than Sawyer himself, who actually lives with it. Self-explanatory; once again the TAB family is presented as heroic, while Sawyer is presented as a “special gift” at best and a burden at worst.

Most parents love and nurture us the best they can. The Bible and other holy books command that they be honored. But in the case of PWDs, parents are often not honored–they are martyred. This cheats everybody, and keeps PWDs from being seen as real people. If you are a parent of a PWD, yes, share your experience. But do it respectfully, and point people to the real source of knowledge. Let’s start communicating–and living out–the truth that nobody knows disability quite like the person who has it.