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When Healing Hurts

Or:

Why I Hate Have Extremely Mixed Feelings About Avatar

I’ve put off writing this post because I wasn’t sure I could put my thoughts (and my knee-jerk reactions) into words. But it’s been years now, and I still haven’t managed to sort it all out. So I’m going to go with what I have and see if I can’t find some clarity by the time we come out the other side. This post will contain spoilers for Avatar and The King’s Speech, so if you don’t know how those two movies end and the title of this post hasn’t already given the game away, then stop reading.

Characters need flaws in order to be interesting. They need challenges to face and overcome. This is a very basic concept of fiction and most authors who don’t get this usually don’t get past the submission process. Some have taken it to the next level and given their characters staggering physical challenges. But if that character is suddenly healed by the end of the story, somehow it feels like cheating. It feels like the author is saying, “You’ve got the strength and the skill to make it through, but if you want to stand on this pedestal and be called a hero, you have to look the part.”

I recognize this is not what they want to say or what most people see when they finish the book. I recognize some of my disgust comes from my own hang ups and insecurities. But that doesn’t change the fact that I finished watching Avatar and felt like James Cameron was telling me I couldn’t be a hero because I use a wheelchair. Jake chose the healthy, studly body over the broken one, and it made sense from a practical standpoint. But that put a twist on the ending. Jake ran away from harsh reality and was rewarded by getting to live a fantasy, and that left a sour taste in my mouth.

So my problem might have something to do with the way the healing is treated in the story. For example, there was no sour taste at the end of The King’s Speech. The whole movie was about King George fighting against and eventually managing his speech impediment. The resolution was triumphant instead of disappointing. I think it’s because he wasn’t “healed”. The problem or flaw didn’t go away entirely. He learned to work with it, speak around it. His reward was self-confidence and respect. Whereas in Avatar, Jake’s healing was more like a prize. “Yay, you saved the day! Here have this body. It’s bigger and better than the old one!”

Healing offered as a reward for a job well done seems like a slap in the face. As if all the growth and challenges the character went through don’t mean anything unless there’s a really spectacular prize at the end. Like legs that work. I guess that was the point I was looking for. Does the healing add breadth and depth to a character or is it more a convenience? You can tell which I prefer.

 

I wrote this to start a discussion because I feel like there could be a lot more sides to the issue. So what do you think about healing characters with disabilities?

Rolling as an Extreme Sport

One of my favorite things about using a wheelchair is flying down ramps, but I think I can safely say I will never be as brave as this guy. Aaron Fotheringham might be one of my new heroes. He's a 21 year-old wheelchair moto-cross athlete with spina bifida. I love the way he's made his own hybrid sport out of his disability. Aaron is known for landing the first wheelchair backflip and the first double backflip and now he tours the world, performing his gravity defying tricks and showing kids with disabilities that wheelchairs aren't limiting in the least.

He makes me feel less guilty about zipping around Costco as fast as I can and testing my braking distance around their corners. Note: super slick floors plus nice high pressure wheels equals lots of exciting sliding. I really liked what he had to say about changing the way people see wheelchairs. And how a wheelchair isn't part of you, it's just something you're riding. Like a bike. And bikes are fun, right?

The Blurred Line

BreathBreath by Donna Jo Napoli

In a time of superstition, before modern medicine, Salz struggles to breathe. A strange disease leaves him weak and marked for death. Except… he hasn’t died. And when a plague of madness strikes his town, Salz is the only one left unscathed. But is this a blessing or a curse? Because with the reprieve comes suspicion. Is Salz the source of the plague? Or will he be the salvation of them all?

 

A good book makes me feel the whole gamut of emotions: joy, sorrow, anger, frustration, and shock. A great book does all that, but it also keeps me thinking long after I’ve turned the last past. Breath didn’t have the most engaging plotline or amazing characters, but it had some fascinating things to say about health and illness, disability and heroism, faith and hypocrisy.

I know Donna Jo Napoli for her fairytale re-tellings. I really liked Beast and I've got Sirena waiting on my to-read shelf. I'm a huge sucker for fairytales, so when I realized Breath was a retelling of The Pied Piper of Hamelin (one of the more chilling fairytales) and might possibly have something to do with the plague (a subject I find morbidly riveting), I grabbed it without a second thought. Then I realized I had a disability topic in my hands.

Salz suffered from Cystic Fibrosis, something that should have killed him long before, but among the medieval remedies his grandmother dosed him with were some potent pieces of wisdom which kept him alive. Someone suffering from Cystic Fibrosis today wouldn’t necessarily do a hand stand every time they start coughing, but the acrobatics helped Salz clear his lungs and breathe easier.

I loved how intertwined the perceptions of health and illness were in this book. Salz is sick. Really sick. Sick enough that everyone’s surprised he’s still alive and Salz himself hesitates to make plans for his future. His illness is met with derogatory reactions not unexpected in this time period. His family thinks he’s useless, his grandmother is the only one who shows any affection toward him, and when it comes down to a choice between Salz’s life or his older brother’s, his family chooses to throw him under the metaphorical bus without a second thought.

But in the end the Cystic Fibrosis protects him from the disease that ravages the rest of the town. It saves his life even as it threatens to kill him. And of course, being “healthy” puts him at risk again when the townspeople accuse him of being the source of the disease through witchcraft.

There was such an interesting give and take between being healthy and being sick. Salz’s weakness is what keeps him from leaving with the children when the piper demands his due, but it is what leaves him healthy enough to go after them. So the invalid becomes the hero. The line between disabled and enabled blurs.

I read this with the disability and illness themes in mind, but already, I know that it deserves a re-read. I want to go back and look at how Napoli handled faith and hypocrisy as well. I caught a glimpse of them out of the corner of my eye as I barreled through and I can't wait to revisit them.

Meeting the Challenge

I don't play sports and I'm not usually a fan of soccer, but I might become one now after watching this guy. Nico Calabria was born with one leg but that hasn't kept him from doing some amazing things. Things like climbing Mount Kilimanjaro when he was 13, talking about the experience on the Ellen DeGeneres Show, and having his incredible soccer goal go viral on youtube.com. Calabria plays on Concord-Carlisle High School's varsity team and it's a testament to his strength, determination, and skill that he holds his own side by side with able-bodied teammates. In an interview with CBS, Calabria talked about how he doesn't see himself as having a disability, only a challenge. And who doesn't face challenges in their life?

I think this attitude serves him well. Calabria sees himself clearly and isn't afraid to show it to the world. In grade school he left behind his prosthetic and went for the crutches instead. Not only was the prosthetic holding him back athletically, it also felt too much like trying to be normal, when Calabria knew he was anything but. That's a sentiment I can admire as an adult, but I know I didn't have that kind of strength and maturity at that age, so I'll just say "wow". I hope to see more of this kid in the future.

Another article on Calabria, if you're interested.

DisabilityKendra
A Sexy Soldier

Embattled HeartsEmbattled Hearts by J.M. Madden After returning from Iraq in a wheelchair, John is having trouble accepting his new limitations, especially since he has his eye on Shannon, the new receptionist at the agency. He suffers in silence, knowing he’s lost too much to be attractive to her. But John doesn’t know that Shannon has eyes of her own and is determined to prove he’s exactly the man she wants.

Embattled Road

I came across The Embattled Road, prequel to Embattled Hearts, a couple weeks ago and fell in love with the premise. Unfortunately, I was disappointed by its execution. The novella felt like it had been slapped together and could have used a lot more editing before hitting shelves, but – and it’s a big but – it included the first chapter of Embattled Hearts. That one chapter convinced me I needed to give Madden one more chance.

In the end, I was glad I did.

I had a couple big problems with this book and by all rights they should have been big enough to ruin it for me. For example, I was really dissatisfied with John’s growth. I’m not a fan of characters who remain static through a book until three pages from the back cover they have some kind of huge turn around and suddenly they’ve solved their particular problem. I want to see change, I want to see them learning from their mistakes and maturing through the story. John just went in circles. One very, very, small circle.

Also, John’s emotional struggle with his disability seemed obvious and a little shallow. He worried about not being man enough for the woman he loved, not being able to come to her rescue. Completely understandable. These are feelings every disabled man would struggle with, I imagine. I’m not upset that Madden’s character felt something so cliché, I’m disappointed she didn’t explore anything deeper or more specific to John as a disabled veteran and the hero of the novel.

And yet…I loved this book. I really can’t explain it. I don’t know if it was the characters or the plot or even the writing. Maybe I fell in love with John despite his merry-go-round character arc. Maybe it was Shannon’s snark and the way she looked past John’s wheelchair to the man. I felt like the sex was more graphic than it needed to be, but I really liked that John’s sexuality was addressed and explored.

I guess I can’t figure out whether to recommend this one or not. I enjoyed it, but I recognize it had some issues. So, I don’t know. Don’t ask me!

Star Trek Got It Right

Breaking News: The Cyborgs Snatched Another One Seriously, maybe I should make a series out of this. At about the same time I posted Resistance is Futile, my husband sent me this article about a guy with what looks suspiciously like a Borg ocular implant. Built around the same concept as a hearing aid, it adds heat and distance perception to an eye that lacks most of its normal function. Kind of like the heads up display for pilots. And if that’s not cool enough, he designed and built it himself, teaching himself the electrical magic he needed to create something perfectly attuned to his needs.

The guy put some serious brain power into this project. If you click over to the original article you can see all his work and his thoughts on further uses for it. I love that he didn’t just stop with what worked for him. He extended it through its natural progression. He gave some thought to further applications for both the abled and the disabled.

No disrespect to the lady with the robot arm. That kind of therapy, dedication and determination are not easy. Believe me, I know. But there’s something powerful about being the patient, the bioengineer, and the manufacturer all rolled into one.

At First Sight

In the spirit of the holiday I have a special post for y'all. This is a short story I wrote back in September as a response to a prompt that said "write something that takes place in a public restroom". I'm not sure how a romance fell out but it did. I think it could use a couple more drafts but the foundation is there. I hope y'all enjoy, and happy valentine's day.  

The door of the restroom swung open. A young woman limped in, her flats shuffling across the tiles and her crutch clicking with each uneven step. She stopped and leaned against the cool wall, looked down at the bridesmaid's dress she wore, and burst into tears.

She should never have introduced them. Kara sniffled and reached into her purse to grab some more tissues. The wads in her fist which she'd been using all night were too soggy with tears and snot to do her any good now. Her fingers found some loose change, a tube of chapstick, and four pens, but no Kleenex.

Dammit. Her nose was leaking like that stupid kitchen faucet she still hadn't fixed. She ducked down to make sure the stalls were empty and limped across to the counter. She winced when she saw her blotchy face reflected in the mirror. That shade of red definitely clashed with the coral of her dress. She turned from the horrifying visage and propped her crutch against the counter so she could snatch up a few paper towels.

Really, this was her fault. She shouldn't have introduced them, she thought again. Or at least she should have refused the dubious honor of standing next to them as they tied the knot. Then she wouldn't have had to come at all and wouldn't have had to watch her best friend marry the only guy who had ever looked past Kara's crutch to see her.

Kara froze as the door to the reception hall swung open, letting in a burst of sound from the party. Oh God, if it was Emily, she'd just go ahead and die on the spot, public restroom or not.

But it wasn't Emily. Her gaze met startled gray eyes in a distinctly masculine face.

Kara squeaked and darted into the back stall, but her drooping foot caught the edge of a tile and she stumbled. Ready to start crying again, this time with frustration, she slammed the door shut and collapsed onto the toilet.

“Oh crap, I'm sorry.” His voice came over the stall door.

“What are you doing in the women's restroom?” she said. Her voice sounded too high, and she concentrated on bringing it back into a register discernible to humans.

“I didn't notice the sign,” he said.

“It's a chick in a dress. How could you not see it?”

“I just didn't.” He paused. “Are you okay?”

She blew out her breath. “I'm fine. Go away.”

“Your face is all red.”

“Gee thanks.”

He didn't apologize but there was an awkward silence where it kind of felt like he wanted to. “I have a confession,” he finally said. “I didn't come in here by accident.”

“You didn't,” Kara said, her voice flat.

“No.”

There was another pause. This one went on a bit longer. “Are you still there?” he said.

“I'm trying to decide if you're some creepy pervert.”

He laughed. She liked the sound of it ringing off the walls of the restroom. “Not a creepy pervert,” he said. “I swear.” She imagined him holding up his hand as if swearing on a Bible. “I'm Paul. Emily's brother.”

That's right. She'd met him last night at the dress rehearsal, but she'd been so worried about not being bitter and not ruining Emily's wedding that all she remembered of him was a brief impression of light eyes and dark hair. But wait, if he was her brother...

Kara groaned. “Emily sent you in here, didn't she?”

“Yeah.” He sounded kind of resentful and weary at the same time. Guess he didn't like being sent to comfort the third wheel any more than she liked being recognized as the third wheel.

“Well, you can tell her I'm fine. I'm not angry, or upset, or-or anything, all right?”

She heard him shift and it sounded like he was leaning against the counter. “I don't think she expected you to be in here crying,” he said.

“Why else would she send you?”

“Maybe because she thought you could help me.” His voice was quiet.

Kara closed her eyes and pounded her forehead with her fist. Not everything's about you, stupid. Well, maybe if she helped him with whatever problem he had, he would go away and leave her alone. “Why do you need my help?” she said.

“I don't.” His response was too quick and too loud. “I'm fine. Emily's just overprotective, and she thought since we both have disabilities... you know, instant connection.”

Kara sighed. “Why does everyone think that crippled people are automatically attracted to other crippled people?”

“I don't know. It's insulting really.”

“It is.” Kara narrowed her eyes and thought back. She didn't have a great memory of him from the night before, but she knew she would have noticed if he'd been in a wheelchair or had crutches like hers. “Wait,” she said. “I don't remember you having a disability.”

“You're assuming you can see it.”

“So, you mean like vertigo?”

“I mean like PTSD.”

“Oh. Were you in the military?”

“Nothing so heroic,” he said. “I was a hostage in that bank robbery last year.”

“The one on 6th street? Geez, I remember that.”

“Yeah, nothing like being in combat or anything, but it kind of messed me up.”

She was getting better at reading his voice. He sounded embarrassed with something deeper underneath. Shame? “Paul, they kept those hostages locked up in that safe for three nights. And a couple people were shot, weren't they.”

She heard him swallow. “Yeah.”

“I'm not trying to remind you or anything, I'm just saying, that would mess anyone up.”

“Yeah, well, I'm better now I've got Warden. He keeps me sane. I'm usually too worried about him sticking his nose up women's skirts to be worried about myself.”

“Who is Warden and why hasn't he been arrested?” she asked.

“He's my service dog. And most of the girls forgive him once he looks up at them with those big brown eyes.”

“You have a service dog? Why didn't you bring him?”

He paused. “I did.”

She leaned over and looked under the stalls and saw Paul's feet in his dress shoes. Right next to him were four paws and the tip of a wagging tail.

“Sorry, I didn't see him.”

“He's big and slobbery and wears a bright red vest. How could you miss him?”

She heard the smile in his voice and couldn't help smiling in return. “I just did. Besides you startled me.”

“Yeah, sorry about that. So why are you in here instead of out there eating cake?”

Her smile disappeared at the reminder. “I'm being pathetic,” she said, going for a light-hearted tone. “I didn't want to ruin Emily's wedding by bursting into tears during their first dance.”

“You don't approve of the groom?”

“Oh no. I know he's a really great guy. That's the problem.”

“So you're in love with him,” Paul said.

“No.” The stall door made the perfect barrier to hide behind, so she found it easier to say, “I just thought he might be the kind of person who could love me. And those are hard to find.”

“Well, now it just sounds like you're fishing for compliments.”

Kara knew he was trying to lighten her mood, but she'd had a rough couple days and just wanted a moment of self-indulgence. “Oh, that's what it sounds like to you? Well, that's the reality I live with. Every guy I meet I have to wonder if he's going to be one of the ones who only sees my disability. Half of them have a hero complex and the other half get that glazed look right before they run away because I'd be too much work.”

“At least you can leave your house without having some kind of breakdown. Every day I wonder if I'll actually be able to step out the door. At every store I have an argument with myself about whether there are enough exits or too many people inside.”

“But no one knows what's going on in your head,” Kara said. “You can smile and nod at people and they won't be able to tell you have problems. I get judged before I even open my mouth. Everyone can see my weakness as I step out of a car or stand up from a chair.”

“And that's a bad thing? Do you know how long it took me to realize that I actually had a serious condition? This is something treatable, but only if you recognize that it's there. Once I finally acknowledged that I needed help, I had to convince the rest of the world there really was something wrong with me and it wasn't all in my head. You don't have to convince anyone.”

Suddenly, Kara was laughing, the tension and the anger spilling out until she felt loose and free. “Are we arguing about who's disability is more disabling?” she said.

His chuckle was warm. “I guess so. Is it weird that I kind of feel better?”

“Not really. I feel better, too. Maybe Emily knew what she was doing.”

He was quiet while she fished in the toilet paper dispenser for something to wipe her nose. The plastic rattled.

“Drat,” she said.

“What?”

“It's empty, and I'm out of tissues.”

A package sailed over the stall door, and she reached up to grab it just to keep it from hitting her in the face.  It was one of those pocket size packets of Kleenex.

“Really?” she said, her breath huffing out on a laugh.

“Brother of the bride, you know. I have another confession,” he said. “Emily might have asked me to talk to you, but that's not why I came in here. I've been trying to get up the nerve to ask you to dance all night.”

“So you followed me into the bathroom?”

“I didn't want to lose my chance. I guess I got a little carried away when I realized you were alone and no one would overhear my awkward attempt to ask you out to dinner tomorrow.”

“First it was just a dance, now you want a date too?”

“I wanted a dance cause you're pretty. I want a date because you're interesting and I'm really enjoying our conversation.”

“Hmm. Are you sure you're not one of those guys that only sees the disability.”

“I don't know. It's hard to tell since I haven't actually seen you in a while. Why don't you come out and you can judge?”

“My face might still be splotchy.”

“Warden doesn't mind, do you? He says he doesn't.”

Kara suppressed a giggle and levered herself to her feet. She took a moment to smooth her dress and make sure her mascara hadn't run before she opened the stall door and stepped outside. Paul leaned against the counter, his lips curving up in a smile, a German shepherd grinning at his feet.

“Well?” she said. She turned like a model on a runway, hanging onto the stalls for support. Where had she left her crutch?

He shook his head. “No disabilities. I just see a beautiful woman.” He cocked his head. “Is there hope for me?”

Kara pretended to consider. “What do you think, Warden?”

The dog's tail thumped against the tiles.

“I agree.” She spotted her crutch propped on the counter opposite Paul, and she limped to grab it. Something cold and wet touched the back of her knee, and she felt the back of her skirt lift. She jumped, slipped, and caught herself against the counter with her hand in the sink.

“Warden! Sorry, sorry.” Paul was yanking the shepherd's harness.

Kara laughed. “I suppose you did warn me.”

“What did you agree with?” he asked the dog and then looked up at Kara. “Do I get a dance and a date?”

Kara opened her mouth just as the door opened and an older woman wearing a burnt orange sweater and a lime green skirt swarmed into the restroom.

Paul started guiltily when her eyes widened and she stopped short.

“Paul Jay Sherman. What do you think you're doing in the ladies room?”

“Aunt Phyllis. I was just-”

“You were just leaving, is what. Stop bothering this young woman and get marching.” She pointed to the door, and Kara had to cover her smile.

Warden stepped in front of Paul and leaned against his legs. Paul seemed to soak in the dog's strength and stood up straighter. “Not until I've heard her answer.” He turned to her and held out his hand. “So, what will it be Kara?”

His eyes stayed locked on hers. They didn't stray toward her crutch or her legs.

She placed her hand in his. “A dance then,” she said.

“And dinner?”

She smiled. “And dinner.”

They walked out of the women's restroom, letting Aunt Phyllis seek out a stall in peace.

The restroom door swung open. A young woman limped in, the clicking of her crutch muffled by the fabric of her wedding dress. She stopped by the mirror and took a moment to check her makeup. Out of the corner of her eye she saw a plastic package of Kleenex propped up by the sink. She smiled as she reached for it.

“Kara?” A girl poked her head around the door. “Paul says hurry. Emily's about to start her toast, and he says he can't live through it without moral support.”

Kara curled her fingers around the tissues. “I'm coming,” she said.

“Okay. Oh geez! Warden, no.”

Kara laughed and left the restroom.

Get Out of Your Mind

Last week I talked about The Secret Garden and how Colin’s entire disability was a product of misconception and rumor. However, my mind didn’t stop there. I was struck by how many of Colin’s problems could have been and/or were fixed by just giving him something to think about besides everything that could go wrong in his life. One of the most common reactions to disability in life, as well as other media, is the thought “my life is over”, or “they’ll never do anything for themselves again”. Even if the reaction isn’t as strong as that, it’s an insidious little thought that can find its way into the most rugged of souls. “Why do I push myself so hard?” “Is it really worth all this pain?” Sometimes we do need to step back and re-evaluate where we’re putting all our energy. But I also think it’s really important not to let pain, fatigue, fear, and complacency take away our passion or drive us into damaging introspection.

Self-awareness is usually a pretty good thing, but I know for me personally, I have a tendency to think too much, to worry and second guess, to live in my own head. That’s where the depression starts; it’s where I lose my passion and the will to push through – in my head. Sometimes the answer is just finding something that distracts me from worry and second guessing. The less I think about it, the smaller it gets until suddenly the problem is bite-sized; not this looming, all-powerful thought chasing me around the inside of my skull.

If we let the fear and complacency win, we all become Colin, lying in bed waiting for the end so we can finally escape the misery and boredom. That’s where we need a challenge, something to inspire us and work towards. Without it our own thoughts get the better of us. Without it we become more disabled.

And our challenges don’t have to be earth shattering. Colin lacked even the motivation to get out of bed in the morning because everyone told him he couldn’t. Standing up can be a challenge. Taking a step. Just sitting up and thinking about something other than pain and fatigue instead of rolling over, back into that familiar, wasting mindset.

Find a hobby. Find a friend. Find a goal that takes you out of yourself and away from your fears and your doubts. Strength is elusive if you’re not searching for it.

Consider Yourself At Home

I've mentioned PHAMALY before, but this came up in my inbox and I had to share. I find these men and women so encouraging. I watch them perform and think, "what amazing things could I do?" But I hadn't considered it from the actors' perspective before. Some of them were pursuing careers in acting before they became disabled. Now they encounter prejudice and discrimination based not on their acting ability, but just on how they would look in a part. I was not particularly athletic before my injury. As a student, a writer, and a gamer I didn't feel like I'd really lost the ability to do something I loved. But three years after my injury I started Physical Therapy school. Here was a career I was passionate about, and one I'd be really good at. Two semesters in I was asked to withdraw because the school would not modify the program to accommodate my disability. I don't believe it was the right choice but I understand that they felt like it was. This isn't meant to bash my school or the professors and colleagues I respect. I'm just saying that I know what it's like to be barred from something so important.

I love that PHAMALY provides a place for these actors to feel safe and strong. They don't have to hide their struggles, and when they're performing you look past their disabilities to see what's really important: their passion and their talent. And PHAMALY is doing more than just providing a home for disabled actors. It is changing the way we view, understand, and treat those who are different. As an organization, PHAMALY is as much an inspiration as the men and women who are up on the stage.

Living, Not Waiting

I recently finished the book Where Is God When It Hurts? by Philip Yancey. I tried to read this back in college just after my injury, but pesky things like school and life got in the way and I had to put it down before finding the answers I was looking for. Funny that I decided to pick it up again now after I’ve found those answers for myself. I didn’t need Yancey’s words to guide me through my pain, but I did notice that a lot of my struggles and growth were reflected in the pages. Yancey talked to two people with quadriplegia. Brian Sternberg and Joni Eareckson Tada. About Brian he said: “Although he recognizes that God has providentially used his pain to bring good, he rejects the notion that God might allow such a condition to continue for the rest of his life. He has gambled his faith, and almost his theology, on the hope for healing.”

I have to admit, I found Brian’s story rather bleak, whereas, Joni’s words might as well have been my own. Yancey says, “She had to accept herself as a quadriplegic and search for new ways of coping. The process was painful. When her boyfriend would put his arm around her and squeeze, she felt nothing. At these times and others she kept fighting a temptation to close her eyes and fantasize, imagining what it would be like if she were well again. A fiancé, a sports car, long hikes in the woods, a place on a college lacrosse team – the possibilities were endless. But they were also worthless, and Joni realized that dwelling on them did not relieve her suffering and only delayed the process of self-acceptance.”

I believe in miracles. Whether that’s experimental therapy or something more along the lines of Jesus heals the paralytic. But I know that if I put all my hope and faith, time and energy into waiting for my miracle, I’ll miss something more important. My life.

I know God will heal me in His own time. He’s got it covered, which means I can put that particular worry in a box and pack it away in the crawl space next to the knick knacks I no longer want but can’t quite bring myself to throw away.

Joni felt the same. “I now realize that I will be healed,” she said. “I haven’t been cheated out of being a complete person – I’m just going through a forty- or fifty-year delay, and God stays with me even through that. I now know the meaning of being “glorified.” It’s the time, after my death here, when I’ll be on my feet dancing.”

I’m content. I’m happy. Which means that when my personal miracle shows up I’ll be pleasantly surprised, instead of looking at my watch and saying, “You’re seventy years late”.

Resistance is Futile

When technology and humanity collide, one woman’s life is changed forever… Woman Gains Full Mind Control of Robotic Arm

How amazing is it that this quadriplegic can pick up a pencil again. Or brush her hair. Or pet her dog. Or do any of the millions of things that we take for granted every day. I’m constantly floored by the incredible leaps and bounds being made in fields like physical therapy and bioengineering.

I can’t help but think what the implications could be for me. I mean, I can walk just fine, and I only use the char when I’m tired or I’ve got a pressure sore. But the implications… I’m imagining a chair with legs. Wheels are great but they can’t climb stairs, hills and curbs are a pain, and grass and underbrush are nearly impossible. With my striding chair I’d be able to hike through the wilderness, climb to the top of a lighthouse, and navigate the rubble at the end of the world (by the way, I’m still here, how about y’all?).

Also, the article mentioned how her reaction speed and strength were equal to normal reflexes, but one of the common thoughts for robotic prostheses is that one day they’ll be better than what the rest of us have. Better, stronger, faster…and all that. So how long will it be before people are voluntarily chopping off limbs to replace them with shiny titanium or carbon fiber bits and bobs? The article mentioned Luke Skywalker but what about the Borg? We're no longer limited to what we can just strap on our bodies. These prostheses are actually integrated into human flesh, using the framework and electrical signals our bodies provide. Why would I need a striding chair when I could replace my faulty legs with awesome walking machines?

Don’t worry, I’m not ready to lop off bits of me yet. But I will definitely be interested to see what the future holds.

Obsessive Wounds

Bent Not Broken by William R. Potter is a contemporary romance about a man with OCD finding the girl of his dreams and the struggles he faces, both in the world and in his own head, as he courts her. I picked this book up as part of the research I was doing for my latest project since I have no experience with OCD, and my main character has a pretty severe case. But I picked it up as a reader as well as a writer. The premise was so intriguing. I love romances of all flavors, but I also love wounded or flawed characters. A character that has to fight against himself in order to win a chance at love? Let me at him.

As I’ve said before, I think an important aspect of portraying disabilities is the details an author gives. And there were plenty of details in this book. I was never in doubt of what Dwayne was feeling. His mental state was laid bare for the reader to see no matter how hard he tried to hide it from the rest of the characters. In fact, I almost feel like there might have been too many details. It read like a report with the author listing everything that Dwayne was thinking and feeling. I guess I would have liked more showing and less telling. This could have been a deliberate choice on the author’s part – a way to illustrate Dwayne’s state of mind. Unfortunately, I couldn’t tell. And if I can’t tell, then that choice hasn’t really been made clear.

There were also quite a few loose ends that seemed to blow in the breeze and their flapping was very distracting. Things that were mentioned that I assumed would be important ended up being left forgotten by the end of the book. Little things and big things alike. For example, the girlfriend’s cats. Dwayne is supposed to take care of them while Dee-Dee’s gone, but he falls into a drunken stupor for four days, forgetting about the cats. Dwayne and Dee-Dee fight, she comes home, they make up – but the cats are never mentioned. Not even so much as a “Hey, I’m sorry I killed your pets.”

And in the end I was disappointed with the depth of the story. There were so many places where the story could have been more vibrant, but instead of pulling out the shovel and digging into the things that made the book unique, Potter merely skimmed the surface. For instance, I wanted some discussion about the fact that Dwayne refused to treat his OCD, instead self-medicating with alcohol. This could have been a really interesting flaw, providing room for character growth. But it was a depth left unplumbed.

Overall, I did like the story. I thought the relationship was cute, and I was left wanting to know what happened next, which is mostly a good thing. I found myself really sympathizing with Dwayne; I felt his panic and his frustration with himself until he finally wanted to change so much that he sought the help he needed to become the man he wanted to be. And the descriptions of his OCD were so vivid that I wanted to reach in and cuddle him and intervene for him with the other characters. “Look what he’s going through. Can’t you see how hard it is?” But I was left with mixed feelings. I think this novella could have used a couple more drafts before hitting the press.

A New Kind of Romeo

A few weeks ago I caught this stand-up routine on Conan O’Brien. Samuel Comroe is a brilliant comedian and actor with Tourette’s Syndrome (I freely admit, I had to look up how to spell it). I thought his act was amazing and wonderfully done. I’ve always been drawn to comedians with self-deprecating humor, but I think there’s something particularly courageous about not only using your disability as comedic material but standing up in front of complete strangers and drawing attention to your differences. Too often we’re ashamed by our differences; we either try to cover them up or ignore them. Comroe actually highlights them and makes us laugh along with him.

As y’all know, I’m all about finding humor in crappy circumstances, so it’s no wonder this guy caught my eye. But what made me sit up and watch was that Comroe isn’t just laughing off his struggles the way you laugh off the twisted ankle you got tripping over the dog on your way to the bathroom in the middle of the night. He uses his disability to his advantage. Check out how he works with the ticks and pauses to effect his own comedic timing. The Tourette’s becomes a part of his style of humor.

So all in all I was really impressed with this guy. And impressed with Ricky Gervais and Conan O’ Brien for recognizing his talent and giving him an opportunity to showcase it. I’ll definitely be looking forward to more of Samuel Comroe.

DisabilityKendradisability
Not a Damsel in Distress

Girl Stolen by April Henry Griffin just wants to steal a few Christmas presents and pawn them for some quick money to get his dad off his case, but when he sees a brand new SUV with the keys hanging invitingly from the ignition, he’s sure his luck’s finally changed. Snatching the car is a breeze. He doesn’t realize that he’s also snatching a girl.

Huddled under a blanket in the backseat, Cheyenne plots her escape. But how can she run when she’s blind? And what happens when her kidnapper becomes her protector?

 

I think I read this book in one sitting. It’s short, to the point, and easy to read, but it’s also packed with emotion, great characters, and great plot. I loved Cheyenne who right off the bat is working out how to use her weaknesses as her strengths. Yes, she’s scared, she’s blind, and she has a severe case of pneumonia, but that doesn’t stop her from luring her captors into underestimating her. She’s not a damsel in distress, waiting for her prince (or her father) to come bash the bad guy over the head. She does her own bashing, thank you very much.

There appears to be an art to portraying characters with disabilities well. I’m defining well as believable and intriguing, where the disability adds something to the story rather than taking something away, like just cutting out sight or the ability to walk. I’m thinking the key is in the details. It’s the details that make an impairment real. Details like Cheyenne orienting herself by sound, or how she explains the little difficulties of eating. They meld together over the course of a book to create a superb image and character in our minds.

And it wasn’t just Cheyenne. I loved how real Griffin’s reactions to her were. Forgetting to point out steps and asking if he can use the word ‘see’ around her. It was a great mix of experiencing how someone lives with a disability and how those around them respond.

I was also really drawn into Cheyenne’s emotional journey. It was taking place in flashbacks, not in the present story, yet it felt so real and immediate. Her initial reaction to her blindness seemed like a fairly typical response, especially for a teenager, but again, it was the details that really pulled her out of cliché and gave her life. She mentioned that she hoped when people saw her they’d think she was normal. She hid her cane under her seat so they wouldn’t see her disability. I used to do that. Play a little game in my head. If I put my crutches over here, and stand like this, and avoid walking, maybe I’ll look normal. Parallels like that aren’t necessary for me to like a character, but I’ll tell you, they don’t hurt.

Oh, and she has a service dog! I was disappointed he was absent for most of the book, but I got my fix through flashbacks and interior monologue. Dogs are always awesome. Always. Period.

One of the things that made this such a page turner was the blurred line between good guy and bad guy. A little gray can be a great thing. In this case Griffin is more of an accidental villain. He makes a mistake and it just keeps getting worse and worse. We feel bad for him, and by the end of the book, we’re rooting for him. What a great turn around.

All in all, a great book. I felt like it could have been longer and deeper but that’s probably because I was enjoying it so much that I wanted more. Usually a good thing. This is going on my recommended list.

A Step Back to Roll Forward

Our new houseOver the last few months I've felt myself slowing down. I'm only 27, but ADLs (activities of daily living) seem to take a lot more work, chores are anticipated with a physical kind of dread, and at the end of the day, I'm exhausted after doing nothing more than living. After six years, I think my body is finally tired of yelling at me and has decided to strike until I agree to more reasonable working conditions. I'm not a weakling, but I'm also not a hoss. No extreme sports for this bookworm, please. But when a spinal cord injury laid me out three months before my wedding, I worked my butt off in order to walk down the aisle. And after that, I just sort of kept going on the same way. I stuck my chair in the basement, determined never to pull it out again. That lasted for a couple years until I got pressure sores on my feet. The only way to get rid of a pressure sore is to stay off of it and give it time to heal. Well, it's pretty hard to walk and stay off your feet at the same time, so I caved and brought out the chair.

It felt like a cop out. I mean, I'd spent all this time and energy getting out of the chair and there I was plopping back down at the first little setback. This was totally not true – just another lie I believed. I really did need to get off my feet to heal, but it felt like a step back. What I didn't tell anyone was that under the frustration and depression was a profound relief. Suddenly my feet didn't hurt, my knees didn't crackle and my back didn't ache.

So I started to use my chair for getting around large places like airports and zoos. But it still went in the basement when we got home. After all, I only needed it for long walks, right? There's nothing shameful about that. Except there shouldn't be anything shameful about using my chair at all. Looking at it now, I can't figure out what I was fighting against. Was I trying to prove something? I think I was trying to show myself that I wasn't less than I had been. And now that I've done that maybe I can focus on what's best for me.

The chair makes my life easier. Why would I balk at using just another kind of tool? I buy Pampered Chef stuff all the time because it makes my life easier. I don't say “well, I'm not going to use a knife to cut my vegetables because I want to prove I can do it without”. And then what? I gnaw an onion into submission? See how silly that is? Now that we have a new house with wide doorways and wood floors, I can get around without a moment's hesitation. I don't have to struggle up a flight of stairs to get to my books (halleluliah!). And guess what? I have a lot more energy throughout the day. I can get chores done and still have the umph to sit down and write. I'm not giving anything up. In fact, I'm gaining something. It's called freedom.

It's taken me six years to admit it, but I don't want to walk everywhere. I get around my house with a weird mix of walking, rolling, and crawling. I know it looks odd but it works for me. Y'all are probably thinking “Why was this so hard to admit?” Well, I'm pretty stubborn by nature and sometimes you have to beat me over the head with an idea a couple times before I'll even consider it. This was one of those times. And I find clarity when I write my thought process down, so you get to experience the inner workings of my mind. Lucky you. But in writing this post I realized I'm not trying to justify my choice to you. I'm trying to convince the girl I used to be that it's all going to be okay. That poor young woman who ached to be up and walking for no other reason than to say she could. This is for her.

 

I promised y'all an update on the new project I'm working on, but after starting it I realized it's going to take a lot more work than I originally thought. Research! And interviews! So I'm postponing the announcement until I've got a better grasp on my timeline. I know, you're sooo disappointed, but I'll have to make it up to you later.

 

Blind But Unbroken

The Broken Kingdoms is the second in N.K. Jemisin's The Inheritance Trilogy. I found the first one, The Hundred Thousand Kingdoms, well-written and intriguing, so I went ahead and picked up the sequel, and lo and behold, I found another disabled character to talk about. I've got a whole list of books to read because someone somewhere has said they have something to do with disabilities, but I really love discovering them on my own. It's like turning over rocks to find bugs, only a lot less squirmy and squishy. Oree Shoth, the protagonist, has been blind since birth. She can “see” magic, but that doesn't really help her on a day-to-day basis. To me, it didn't feel like Jemisin had an agenda for writing a character who's blind. The disability was just a part of the whole, something that added another dimension to who Oree was. I really admire an author who can take an impairment that affects all aspects of life and treat it as just another character trait. It makes disabilities feel a lot more normal – see, I'm really not all that different from everyone else – and it helps everyone else see disabilities in a different, more intimate way.

Now, I'm not blind, so I don't have any experience to compare Oree with, but from my limited perspective, the details Jemisin provided seemed pretty consistent and thought-provoking. Oree always recognized people by scent or sound rather than physical characteristics she couldn't see. She could tell plants and pigments apart just by touch or smell. And Jemisin did something really cool to highlight Oree's different perspective. There were moments in the book where there was so much magic around her that Oree could actually see, and she marvels at the experience. Things that never would have crossed my mind became the defining details of her narrative. She wonders at things like depth perception, the way her eyes try to focus, and how her hands look. She did do the stereotypical face feeling, and I've heard several people who are blind scoff at this, saying, “No, I don't want to feel your face. Do you want to feel mine?” Oree does it more to tell what emotions people are feeling, but I still wasn't buying it.

Oree really values her freedom and independence. She uses tools and has a routine that allows her to live and work independently. She fights for her freedom and chafes when it's taken away. However, she recognizes that it's okay to need help occasionally. I loved watching as Oree struggled to teach this balance to another character. Maybe because I was almost as stubborn as he was about accepting this simple life lesson. No one can do everything, except maybe Superman, and who wants to be him? Have you ever tried changing in a phone booth? Though I'll admit the flying thing is certainly tempting. Whatever, my point is that I can ask for help without sacrificing anything of myself or my pride.

And Oree had a really subtle strength. There were plenty of moments where she seemed weak, where she accepts all she can do is run away, but when it finally came down to the line there was no one else to pick up the slack, she stepped up and saved the day. There's something about that kind of hero that appeals to everyone, I think. Not all of us are capable of being the big, blond guy with the stainless armor and sword, and the smile that goes ting. Some of us are more like Oree, bruised and bowed, but unbroken, with a subtle heroism if you're willing to look beneath the surface.

Yeine and Oree's stories might be done, but the trilogy concludes with The Kingdom of Gods.

Finding Freedom in Disability

There is something very important about being able to do things for yourself. We as humans strive for a certain independence and strength, and the more limited we are, the more important our independence becomes. Those of us with disabilities fight for freedom daily, and when we've won it, we guard it closely. I remember when I was first cleared to go to the bathroom by myself in rehab. Before I realized this was something I'd been able to do for years before my injury, I was so proud of myself. I felt like a person again, not that I wasn't before that, but I had regained some of my humanity. With every little task we learn or recover, every little thing we can claim as our own, we collect another piece of our self-respect. So how do we gain our freedom when our very bodies and minds seek to keep us enslaved? There are hundreds, maybe thousands, of tools that help us find our independence, and since every disability is different, the possibilities are limitless with just a little ingenuity. Wheelchairs give us the ability to get out of the house, sliding boards help us transfer, crutches help us walk. Therapists teach us how to use what we have and regain what we've lost. Service dogs give us more freedom and companionship.

But these tools really only cover physical independence. What about the self-enslavement of our thoughts, the murky doubts that wrap us so tight in lies we can no longer reach for the truth? The lies I struggle with are huge, oppressive ropes that bind and choke me. I'm weak. I'm worthless. I can't walk so I might as well give up. But by dwelling on the doubts - no, the lies - by letting them become the biggest things about me, I'm letting them win. I'm letting my disability define me and my relationships and my life.

The thing is, I recognize that there are things I can't do, I'm not trying to deny that. But I refuse to let the things I can't do control who I am and how I behave. It sounds cheesy to say I have to accept myself, but in the end, that's what it comes down to: knowing there will always be things that I can't do, and choosing to concentrate on the things I can. It's a choice, one that I have to make every day, and believe me, it's not an easy one.

I choose to take pride in the small accomplishments of a day done right. I choose not to get angry when I run up against something that trips me (sometimes quite literally). I choose to ask for help when I need it and not be ashamed of those moments. And sometimes I choose to let the day overwhelm me because I'm human, and I occasionally screw up.

It took me a long time and a lot of heartache to get to this point. It took me even longer to learn that my experience is not the ultimate authority. I can talk to other people with disabilities and learn that they have very different ideas of how to get along. Just because I have reached this conclusion does not mean that it is the end result for every one else struggling in this world. I don't want my words to be read as “Kendra's amazing cure for what ails you”, but I do hope that my journey can be helpful to others who carry around lies. You're not alone. You're not beyond hope. You're strong enough to win. Choose freedom.

The Handiness in Being Handicapped

For those who don't know, I live with a disability. I'm used to it, but occasionally I come across something that reminds me of all the things I can't do, and I have to make a choice not to let it get to me. So I try to find joy in the little things. I try to recognize those moments when I realize I have an advantage. Every now and then there are some things that make all this worthwhile, things that make me smile. Wheelchairs. Who hasn't thought it would be fun to tool around in one? You can admit it. Wheelchairs are awesome. And it's not like you can just rent one. You kind of have to have a legitimate reason for one, otherwise it's awkward. Zipping around in my small, fast TiLite is pretty fun. It's the only time I can actually go faster than everyone else in the world. The big open floors at Sam's Club and Ikea are perfect racing grounds (although, you want to go with an able-bodied hubby or friend because what you make up for in speed, you lose in being able to maneuver those big carts around, yeah, picture it in your mind, and now go ahead and laugh, it's okay, I promise). And for me, the chair lets me do more for longer than if I was just walking. A few summers ago we went to Yellowstone National Park, which was amazingly accessible. There were boardwalks everywhere so even in the wheelchair I could get up close and see the paint pots and the pools full of cyanobacteria. I'd never have been able to keep up if I was walking.

Parking. That's the one advantage everyone thinks of. I have a handy-dandy placard in my car that lets me park in those big spots right up close to the stores. Very nice (until they're all taken and I have to park forever away and walk, but that's a soap box for another day). What most people don't realize is that there are several advantages to handicapped parking that those of us with disabilities need. I use all of them at various points. Yes, the location is a big one. If I'm walking then the last thing I want to do before hours of shopping (I hate shopping) is hike a million miles before I even get to the store. But if I'm in my chair then distance is nothing. It becomes an issue of space. Even my little custom-fitted TiLite is too big to get between the cars in the rest of the lot. That's what those hash marks are for (not grocery carts). Oh, and when I'm in the chair, I'm short. Cars driving through the parking lot can't see me, so getting a spot up close keeps me from getting run over. Always a good thing.

Airports. There really isn't anything good about airports, but the wheelchair makes it bearable. Security sees me coming and a special line magically opens just for me. Sure I have to live through a patdown, (chair can't go through a metal detector) but what's getting to second base with a complete stranger in latex gloves compared to skipping that hellish line? I'll take second base, please (even if they don't buy me dinner first). And sometimes Josh can play up my disability and fanagle us bulkhead seats. Seriously, his height should be considered a disability when we're flying anyway.

I'm sure there are other advantages. These are the ones that come to mind immediately. Maybe I'll share them with y'all as I come up with them. Can anyone think of any more? Come on. There are so many crappy things. Let's revel in the good for once.

Bookworm Blues

Today you can find me over at Bookworm Blues talking about disabilities in science fiction and fantasy. This series Sarah is hosting is an amazing opportunity to promote the idea of disabled fantasy heroes and help people understand those of us with disabilities better. Robert Jackson Bennett opened the discussion yesterday and Carol Berg will be weighing in on Thursday, and I'm really looking forward to seeing what the rest of the month holds. Take a minute to check it out. You won't be disappointed.

One of the Phamaly

Every year, I wait impatiently for a certain musical production done by an incredible group of people here in Denver. I buy my tickets months in advance, I plan other events around it, and then finally, I drive downtown and sit in a darkened theater waiting for the curtain to rise. Maybe that paints a melodramatic picture of a sad, obsessed woman who really should take up knitting or something, but that's how much I look forward to seeing PHAMALY. The Physically Handicapped Actors and Musical Artists League has been amazingly inspirational to me. PHAMALY was formed in 1989 in response to a distressing lack of theatrical opportunities for physically disabled actors. Every actor in the company has a disability, whether it's physical, emotional, or cognitive. Some are blind, some are hearing-impaired, some have anxiety or personality disorders. Some are even in wheelchairs. Let me tell you, you haven't seen a sword fight until you've seen someone wield a blade from a wheelchair. PHAMALY provides a place for disabled actors to hone and spotlight their skills. And these people are good. The shows are produced professionally and the actors really know what they're doing.

The first show I saw was “Man of La Mancha”. I still have the program gathering dust down in my sewing room (see, I sew, I don't need to take up knitting) because I can't bear to throw it away. Watching these actors – some with disabilities much more severe than mine – sing “The Impossible Dream” filled me with a sense of awe and pride in myself. I left the theater that night feeling more empowered than I've felt in the six years since my injury.

Something about that show struck a deep and resonant cord in me. I once was a little girl who dreamed of being a Broadway star along with being a Disney princess. Alas, that dream will never be realized since I have a voice like a hyena and the sense of pitch of a house with old plumbing (that might be an exaggeration, but it sounded so good, didn't it?). But seeing a girl with paraplegia drag herself across the floor, singing “Aldonza”, in a scene rife with anguish and regret made me look at myself in a new light. I, crippled little Kendra, can do anything. I can be anything. If you've seen “Man of La Mancha”, you know this is the theme of the whole show, but PHAMALY's performance lent it something more, something amazing and all-encompassing. I thought to myself, if she could do that, what could I do? And I'm sure I wasn't the only one in the audience that felt that sense of community and competence.

PHAMALY puts on one musical and one stage play per year. Also they put on original sketch comedy shows periodically. Arielle, Josh, and I went to one of these last week. “DisLabeled” is the new series they are doing out of Boulder, written by the handi-capable actors who perform in it. It was, in a word, hysterical, featuring sketches like “You might be disabled,” (in the style of Jeff Foxworthy) and a sing-along of “Your, your, your row boat. Dyslexia have we”. I particularly liked the blind date between two people with TBI's (traumatic brain injury), neither of which could remember why they were there.

Their purpose is not just to give theatrical opportunities to people with disabilities. They also strive to promote understanding, showing that we aren't unapproachable, we just do things a little differently. At the end of the show, the actors all sat down and answered questions about how they came up with their material and their lives in general. You'd be amazed how easy it can be to find the ridiculous in the mundane.

PHAMALY has come up with what they call Phampathy Cards with sentiments like “I'd have gotten you a prettier card but you're blind so...” and “Have you ever thought of yourself as half NOT deaf?” and, my favorite, “Thinking of you and all that awesome free parking.” PHAMALY treats living with a disability with irreverent laughter that shows it's okay to have a sense of humor, it's okay to look past the big crappy things and find joy in the little quirks of life. This is something I believe is so important to maintain mental health in everyone, not just those of us with more problems than most. We can't pretend we're not different, we can't pretend we don't have a hard time occasionally, but we can reach out to find our similarities and we can smile when something's funny.

On a side note, I've added some things over in the sidebar. If you want to receive updates whenever there's a new post, just click to subscribe.