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Archive for May, 2015

Blog Bonus: What PWDs Can Learn From The Hunchback of Notre Dame

Ding-ding-ding! Welcome to the bonus round!

As you guys know, I love Disney. I loved it as a kid and now as a grown woman, I appreciate it in a very adult way. For example, I now analyze movies and characters with other fans on Disney blogs. I look forward to sharing the classics with my kids, and I think through the traits of the characters I’d want my children to emulate as role models. Some movies and characters, I love. Some I can do without, and some are in the middle.

The Hunchback of Notre Dame is one of those middle ones. I enjoy the movie very much, but it is definitely not one I’d let children see. Its villain Frollo is not just dark and power-hungry–he is a city official gone mad, a hypocritical religious zealot who commits horrible acts in the name of God. There are sexual overtones, racial and ethnic slurs, and very negative treatment of deformity/disability. Our hero, Quasimodo, has a hunched back and a swollen eye, and is considered hideous. Worst of all, his guardian perpetuates this idea and isolates him in the bell tower. Quasimodo has no independence and no concept of the world beyond his cathedral home. That is not the kind of life I want any PWD to live, and the way others view Quasi is cruel and narrow-minded.

Yet, I believe older PWDs can learn a few things from Quasimodo–not because he “overcomes” his disabilities in the classic sense, but because he learns to live with them and retain dignity and goodness. So let’s take a look at a few of those lessons, shall we?

Never be afraid to get out there–and disobey if you have to. I don’t advocate disobedience for its own sake. Yet in Quasi’s case, had he not disobeyed Frollo’s command, he’d have stayed isolated and cut off from good experiences forever. The argument there is, “Yeah–he also wouldn’t have been humiliated.” Good point. But at the same time, he met truly kind people–Esmeralda and Phoebus. He learned the truth about Paris and about people. You’ll never know the truth about the world–the good and the bad–unless you experience it. Sometimes, that means breaking the rules: entering general education instead of special ed, asking the vocational rehab coach to back off so you can find your own job, asking for less time in therapy and more time with friends, you name it. Which leads me to…

Be careful who you listen to. Quasi was vulnerable to Frollo’s cruelty and bigotry because his was the only consistent voice Quasi heard for 20 years. I would hope not many PWDs are in a similar position, but the lesson still stands. PWDs are vulnerable to hearing the wrong messages: You can’t. You won’t. You’re ugly and worth nothing. You are a burden. Refuse to listen to those messages, even if they’re inside your own head. Surround yourself with positive messages and influences instead. Capitalize on your strengths as a reminder that you can do things. Develop positive character traits to remind yourself of your intrinsic value. Which brings me to…

Have courage and be kind. Yes, I’m borrowing from the recent Cinderella remake (a good movie as well, by the way). But I think if Cinderella or her mother could’ve spoken to Quasimodo, they’d have said this to him. Quasimodo is lovable because he’s kind (not so much in the book version of his story, but certainly the movie, which is what we’re focused on). He has to muster up courage, but shows plenty of it to rescue Esmeralda and Phoebus, and call out Frollo on his crap. These traits, not some hackneyed inspirational ending, are what make him commendable and yes, inspirational. And one of the things Quasi was inspired to do was…

Stand up for those who cannot do it themselves. Esmeralda, not Quasimodo, is actually the first character to do this. She does a bang-up job of it, as you know if you’ve seen the movie. Yet her willingness to fight for justice in the face of arrest and certain death is what later inspires Quasimodo to stand up for himself, a mortally injured friend, and indirectly, Paris itself. As a PWD, you may think you’re the most vulnerable person on the planet. Sometimes you will be vulnerable. Sometimes you might even be bullied. That’s life. But for every person who gets stepped on, there’s a person who can stand up and say, “This is wrong.” Be that person just as someone else was or is for you. And finally…

Nurture a bright, creative spirit. For much of his movie, Quasi’s world is dark and narrow. His friends are stone gargoyles (whether they’re actually alive is a topic of great debate among adult Disney fans). But, Quasi is a gifted artist. He makes wonderful wooden figurines and gorgeous stained glass prisms. He appreciates–even names–the bells and loves their sound. He knows and loves every inch of his home. These things help keep him positive. If you have a disability, you have things like that, too–strengths, your own areas of creativity, the capacity to see the world in new ways. Use them to lift your spirits to cathedral heights.

Weasel Words: How “Disability Vocabulary” is Sneaking into Our Language

Hello again, readers,

I have a new post based on my recent trip to a writer’s conference, and this one is centered on words.

Writers have a fairly unique vocabulary–it’s not exactly workplace jargon, but if you don’t hang around writers much you might not know what we’re talking about. We regularly use our own acronyms and phrases like:
-POV (Point of View)
-Limited/omniscient (this refers to third-person point of view but we usually just use one of those two words)
-Pubbed (short for “published”)
-Crit (short for “critique”)
-Sensory words (felt, saw, heard, and so on)
-Head-hopping (jumping between POV characters in the same scene–it’s a big no-no)
-Weasel words

This last one has nothing to do with rodents. Weasel words are words you put into a manuscript that you don’t need. They’re the ones you cut when your word count is too high or you need to clean up a draft. Some guilty words are “just,” “really,” and “that,” to name a few. There are other types of weasel words too, though–words that creep into our vocabulary without conscious knowledge. No, I’m not talking about cuss words or jargon. I’m talking about disability-related words, used outside the context of disability, that may be undermining the community of PWDs.

I’ll give you an example. One day at my conference I was walking from dinner to our evening group session when I heard another attendee say, “My husband is a high-functioning introvert. He can function around people really well but needs to recharge.” I understood what she meant and knew she wasn’t poking fun at disability in any way, but it occurred to me: that’s a weird way to say someone’s an introvert.

Another example: I took a class based on “writing acoustically”, or writing so your readers can hear different cadences in your words. For example, you write differently during a fast-paced action scene than you would a scene where a romantic waltz takes place. The instructor asked how many of us were musical in some way–how many of us chose the class because the title referenced acoustics. Most of us raised our hands, including me since I’m a singer. One of the few who didn’t joked, “I’m musically retarded.”

Now, you all know how I feel about that word (hereafter and forever known as the R word just because I hate even thinking it). Yet it is a word that has crept into our vocabulary. We use it without thinking, but it is a slur against PWDs, whether or not they have intellectual disabilities.

Now, is “high-functioning introvert” also a slur? No. The trouble is, it’s not the best way to get your point across. Why? Because when you start categorizing people as high- or low-functioning, you’re using disability vocabulary and unconsciously sending the message that
(A. It is okay to define people this way, especially PWDs
(B. Disability vocabulary can be applied to anyone in any situation, even where it may be inappropriate
(C. “High-functioning” people are better than “low-functioning” people
(D. It’s better to have some traits and not others (extraversion privileged over introversion, for instance). The degree to which you can or will exhibit the desired traits indicates how well you “function,” therefore how well you “deserve” to be accepted in circles of those who naturally have the desired traits.

Sometimes, disability vocabulary can be downright weird when used the wrong way. For example, let’s say you have a TAB person who happens to be a bit of a neatnik and is particular about how her clothes are folded. She doesn’t have intrusive thoughts or compulsions–yet her friends and family say, “Oh, Scarlet is just OCD.” No, Scarlet is not OCD. No one *is* obsessive compulsive disorder. They *have* obsessive compulsive disorder. Big difference. And, just because you have 1-2 traits of OCD or any other disability does not mean you have the diagnosis or should be classified as such. That’s not because OCD or any other disability is bad; they shouldn’t be taken lightly, is all.

I’m not saying we can never joke about disability. I do it all the time–in reference to myself. But it is a tricky and often offensive subject because to poke fun at someone else’s disability, or use disability vocabulary inappropriately, carries negative results. The problem is, disability vocabulary is so accepted these days, it’s weaseled its way into our everyday language, in ways that it shouldn’t.

I personally wish we didn’t have this kind of vocabulary–high- and low-functioning, special needs, what have you. For now we do because we are imperfect and because these words can be helpful if used correctly. Yet I caution everyone–please, please be careful how you use them, and always do so with respect.

The Forest and the Trees: Where are PWDs Really Failing and Succeeding?

Hello readers,

I returned from an uplifting and educational writer’s conference about 90 minutes from my home on Wednesday night. I was blessed to have my fiction critiqued by two respected authors and meet others who encouraged me. In particular, the keynote speakers in our morning and evening group sessions had plenty of positive and thought-provoking insights into the writer’s life. Insights like, writers are individuals and have specific purposes but are also interdependent. When one writes a bestselling book, we should all rejoice, and when one gets rejected for the two hundredth time, we should all hurt. Things like, out of your brokenness can come some of your best stories, and what you consider a failure in a specific realm may actually lead to a success in life.

In other words, not every writer will pen a bestseller. We can’t all win the big contest, get the coveted agent, and pull in money the likes of which would make Stephen King jealous. But if we reach even a small number of people, if we listen and learn, if we mentor others, we have succeeded as writers.

It occurred to me (of course) that the same might be said for persons with disabilities. I didn’t make this connection until I was on my way home, but here it is. I stopped in at this little thrift shop to look around (and bought a pair of ceramic cats; the poor things looked like they’d been waiting for a home forever. Please excuse my personifying writer’s brain). At the checkout counter, I happened to see a local family magazine and flipped through it. One article was about counseling, and how the goal of counseling is to get the client out of therapy so he or she can function more effectively and live a better life.

I thought, what a contrast that is. Let me repeat: in psychological or psychiatric counseling, the idea is to get the patient out of therapy. As in, there is a specific goal to be worked toward and ideally, specific strategies to accomplish it. Contrast that with other therapies that PWDs often undergo–physical, occupational, speech, and so on. Is the goal ever to stop therapy or to get the person to reach his or her goals and lead a productive life?

Ideally, yes, absolutely. Having been in OT and PT from age two to about fourteen, I can attest to the good intentions of some compassionate therapists who did see me as a whole person. Too often though, therapy is seen as a permanent fixture in the life of the PWD. Therapists and experts may say the goal is permanent discharge–but how often does that happen? How often do children with disabilities grow up to be teens and adults with disabilities–still working on the same goals, still being told their progress is not adequate, and still spending much of their time in therapy settings? It gets to the point where some PWDs accept therapy–treatment, being “worked on,”–as normal and expected, as acceptable for them because their bodies and minds are “different,” and because they are somehow “failing” to meet others’ standards. Standards of how their hands and feet should work. How they should speak and eat and use the bathroom. How many times they should be able to catch a ball in 60 seconds.

Seriously, guys? What are we doing to our fellow humans, here? Again, therapy can be beneficial, and therapists are often well-trained and compassionate people. But what are the real motivations here, and in what ways are we measuring failure and success?

You see, failure keeps you stuck. It keeps you pressed down–that’s where we get the word “oppressed.” In 1 and 2 Thessalonians, St. Paul used words that refer to oppression as being crowded in, pushed into a metaphorical box, like a helpless little sardine. Even though many people who interact with PWDs don’t mean to do this, they certainly send a message of failure. “You didn’t meet this goal–or didn’t meet it to our satisfaction–so you must stay at this stage in the game.” If that was your life, why would you even play the game? Everyone fails sometimes because that’s life. Yet nobody wants to stay in a situation where they perpetually fail and lose.

By contrast, success means you win. It helps you lift up–physically, emotionally, mentally, and spiritually. It affirms that your life has value, and I think we need to stop using therapy and goals as our only measures of success for PWDs. Instead of saying, “Rana needs to keep working to tie her shoes because she’s eight and she can’t do it,” why don’t we focus on the fact that Rana loves school and has friends? Will tying her own shoes really help her get a job someday? Maintain a social network?

Instead of saying, “Bryce has failed to meet his reading goals again this year,” why don’t we reexamine those goals? How about asking Bryce what kind of books he likes, and focusing on his successes in understanding and appreciating those stories? (No, understanding and appreciation aren’t measurable IEP goals and shouldn’t be used as such, but they are intangible measures of success and self-esteem). How about focusing on the fact that Bryce succeeded because he played a key role in a school carpentry project?

Instead of saying, “Michaela continues to exhibit severe autistic behaviors and continues to have sensory-related meltdowns,” how about trying to understand and fix her sensory discomforts? How about applauding her because she was able to tolerate itchy clothes–not for a whole day like you wanted, but maybe just for thirty minutes? How about applauding her because she created beautiful artwork today?

I think in the lives of PWDs, we’re too busy looking at the trees to see the forest. If we stepped back and looked at the forest instead, I think we might see the chance to nurture some beautiful, strong plants.

Walking in the Shadow of the Cross: Being a PWD and a Christian at the Same Time

Yeah, you read that right. It is possible, though some would probably challenge me on that. To those who would, I hear you loud and clear. Some days, I wonder what on Earth I’m doing. Some days, having a disability and being a Christian feels like spinning plates–delicate, blown crystal plates that shatter if you tap them funny. Sometimes it even sucks. For example, this is my first free day to write a blog post in a couple of weeks due to a busy freelance job. If I weren’t a Christian, I probably could’ve blown off work to write whatever I wanted for two weeks without feeling guilty. But I am, so I didn’t. In fact, let’s keep going with that. If I weren’t a Christian with a disability, I could:

-Call the pathetic excuse for a location where I did that awful teaching internship and rip them all a new one, four-letter words included
-Quit going to church because I don’t feel included and represented all the time (we’ll get to that)
-Harbor unforgiveness toward everybody who’s ever treated me like dirt (okay, sometimes I kinda do that one. Forgiveness is an ongoing process for everybody).

And on and on it goes. Yet, I remain a Christian with a disability. I don’t have to; I have a choice. But the choices I make, the debates I have with myself, always lead me back to Jesus Christ. Some people might say I’m brainwashed. Others might say, “You have the luxury of religion because you’re high-functioning.” They might say, “You wouldn’t think that if you’d been able-bodied once.” Well, I can’t answer those statements, but I can say this: I understand where they come from. See, being a Christian and having a disability is a tough gig. It requires fitting together two major pieces of your identity, and the pieces don’t always click. But there are a few things the church says and does that make the task harder. I think we need to examine these things and talk about what the church could do instead. So here we go.

The Church Still Sees Disability as Fixable

In 99% of cases, there are no cures for disabilities. That’s part of why I think we need to get rid of the medical model that treats disability as a problem to be treated and controlled with therapies, surgeries, and meds. Cerebral palsy is not a cold. Deafness is not the flu. Intellectual disability is not a bad back. It doesn’t work that way. Yet, the church continues to behave as if it does. When a black or Hispanic person walks into a church, you don’t see people saying things to him or her like,
-“I’ll pray for your healing.”
-“God can use you anyway.”
-“God’s power is made perfect in weakness.”
-“You’re here to inspire us.”

So why do we say it to PWDs? Maybe it’s because Jesus performed so many miracles in the lives of PWDs. But as wonderful as those miracles are, maybe we need to step back from them. Those miracles were performed in first-century Israel, in a society that saw disability as a defect and often a divine punishment. This is twenty-first century America, folks (or whatever country you live in). Yes, Jesus does miracles and should be praised for that. Yet He also teaches us to treat everyone as equals, and to let them utilize their gifts. Isn’t it time we moved beyond healing to see what those gifts are?

The Church Doesn’t Know How to Interpret Biblical Disability Images.

I’ll admit, I have a tough time with this one, too. The Bible uses words for disabilities that we would consider outdated or offensive, including:
-Crippled
-Lame
-Dumb

Not all translations do, but many still have these. More to the point–I’ve studied the Bible. At least in the translations I’ve read several times, the word “disability” doesn’t come up, not even once. That’s fine because most translators are concerned about the integrity of the text. Ancient Hebrew, Greek, and Aramaic didn’t have “people-first language” in that context. But here’s the problem. Christians and other Bible readers look at the stories of PWDs and see words like the ones above, stories of people denied temple access because of imperfections, God insisting on unblemished sacrifices–and they don’t know what to do with it. At times, Christians take this as permission to continue working on (not with, on) PWDs using the medical model. Because if even God admits PWDs are imperfect, why shouldn’t we? What’s the deal?

Actually, Jesus never called PWDs imperfect and neither did the God of the Old Testament (one and the same, but if you get me going on the Trinity, we’ll be here until Doomsday). I don’t believe God wanted to exclude PWDs, either. If you study your Bible, you’ll find that God originally wanted the Israelites to trust Him for their needs. They insisted on rules. They insisted on kings. And so, because of free will, God allowed it just as He allowed sin and destruction. He said, “Okay, because we’re under the covenant that you asked for, I will make these rules. But that does not give you a license to exclude anyone.” Note that within the Ten Commandments, four–less than half–deal with how to treat God. Six out of ten deal with how we treat people. They don’t reference PWDs, but neither do they say PWDs should be treated any differently than any other human.

We do not kill them.
We do not steal from them.
We honor them, if they are parents, and as people in general.
We do not cheat on them, lie about them, or covet their things.

The Bible also admonishes us to treat all members of our body–i.e., the church–with respect. Paul tells us that the body parts we don’t display, we treat with special honor. Now, that doesn’t mean PWDs should never be seen. But it also means that when we see them in the church or in our Sunday school rooms, we interact with them and show them love. We also don’t go out of our way not to see them.

The Church’s Positive Opinion of Disability Has Holes.

This goes back to that whole “inspiration” thing. Often, PWDs who attend church are told they’ve been singled out for “special kingdom work.” In the eyes of the temporarily able-bodied, that usually amounts to spouting off nuggets of wisdom or being sweet and cute and saintly (the Magical Disabled Person trope). Even if it doesn’t–well, there are holes. Let me clear up something. If you are a Christian, then according to the New Testament you have “special kingdom work” to do. You may not know what that is yet, and it may not be the flashy thing we sometimes imagine, such as full-time missionary work in the Amazon jungle or running a halfway house for addicts and prostitutes (both noble pursuits, but often mistaken for the only “real” ministries there are). Having a disability doesn’t exempt you. Still, neither should it be a license for the rest of the church to set you aside and tell yourself that your special kingdom work is just to–well, sit and be disabled.

The Church Holds Up Disability as a Trial to Be Overcome and Little Else.

I’ve been a Christian a long time, and so I’ve read and heard of my share of Christian role models. Some of these are ancient Catholic saints. Some are deceased contemporary people like Amy Carmichael, George Muller, or William Tyndale. Others are more modern saints I want to be like and learn from–Beth Moore, Priscilla Shirer, Greg Laurie, Todd Starnes, you get the picture. But without fail, whenever I express that I’m having a hard time with my dual identity, someone will suggest:
-“Read/listen to Joni Eareckson Tada.”
-“Have you read Nic Vuicjick’s book yet?”
-“You remind me of Fanny Crosby.”
-“Do you know about Jennifer Rothschild?”

I’m not bashing any of these PWDs. I’ve read most of them and in the case of Crosby, sung her hymns. They are wonderful people and the church needs to know more about them.

Here’s the thing. When I say, “more,” I really mean “more.” Most of the time, the church holds up these and other PWDs as people who have “overcome” their disabilities, and the lesson they teach as, “Don’t acknowledge obstacles or complain about them/acknowledging limitations means you’re held down.”

Does the church at large mean to do this? No, I don’t think so. But let’s be real here.

I get tired of hearing the phrase “overcome (s) my/your/her disability.” Why? Because it’s as if people in the temporarily able-bodied world think we’ll be more desirable if we’re “less disabled.” Disabilityinkidlit.com has a whole article on this; it focuses on autism but the message is applicable across the board. You can read it right here.

Now, am I saying PWDs can’t and shouldn’t be overcomers? No. As an author friend of mine, M.H., says, every temple needs routine maintenance or even major renovations from time to time. But if the message you send to PWDs all the time is, “Overcome, overcome, work harder, practice more, overcome,” then what are you really saying?

Being a Christian who has a disability doesn’t have to be that hard. Sometimes it will be, just because disability itself is a tough gig. Yet I think we, especially us Christians, could make it a lot easier if we changed our thoughts and attitudes some more.