Tag Archives: disability

We Can Make Him Faster, Stronger, Better

So Josh sent me this article the other day (I’ve noticed all my cool news stuff seems to come from him) and I thought I’d share. Go ahead and click, I’ll be here when you get back.

http://gizmodo.com/i-wore-a-bionic-leg-and-i-never-wanted-to-take-it-off-726536822

Isn’t that cool? It’s a bionic leg. First thing I said when I saw it is that I want one. Unfortunately it’s not really designed for my level of function. I don’t think I can provide even 20% of the power to go up stairs and curbs and stuff. And I’m not sure I have the control in my feet and ankles to really use it properly. But I was intrigued by the way it reads your intentions to give you support (so your knee doesn’t give out unexpectedly) and flexibility (so you can continue to walk and live even while your strength is impaired).

Back in rehab I had these knee-foot-orthotics called a UTX that kept my knee braced while my weight was on it and bent at the knee when I was ready to swing my leg forward. The idea was amazing, especially at the time, and after a lot of practice, the execution was pretty good. Those also “read” your intention from ankle movement. The Bionic Leg seems like the next step up, providing not only bracing but leveled assistance. I can’t wait to see these used in therapy.

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Joy for the Heart that Hurts

I was kind of at a loss for what to post about today. So I thought I’d introduce you guys to another project I’m working on. This is still in its very early stages, but it’s something I feel very strongly about. Joy for the Heart that Hurts will be a devotional for those struggling with pain and hardship, but my plan is to write and present it to the world as a blog. Every week day for a year there will be a post about finding joy in a world full of pain and suffering. Maybe one day it will also be published as a book. Who knows. For now, this is the first post/entry in that journey.

 

Broken World

It’s a little cliché to blame it all on Adam and Eve (not just Eve, people, Adam was standing right there), but the truth is, we live in a broken world. There’s no escaping the fact that we live alongside violence, ignorance, carelessness and misunderstanding. We are now separated from God in his holiness. The fall not only gave us toil and hardship and death, it also broke our relationship with God. He’s over there and we’re over here and ne’er the twain shall meet. No matter how much he loves us, no matter how much he grieves for the separation, he can’t just bridge the gap. His holiness and his perfection will not tolerate us in his presence. As a result we get to fight through pain and suffering. No one is immune. The completely idyllic, happy life, untouched by any sort of ugliness does not exist.

But when God found our screwed up fore-father and mother in the garden, hiding because they were naked, he didn’t say “Well, that was a bust. Guess I’ll just sit back and watch the world go to crap.” He solved the problem of our separation. He gave us a mediator. Someone to speak to him on our behalf. Someone who died for our sins and made us clean so we can stand before our heavenly father again without shame. If you don’t know Jesus Christ already, here’s your chance to snag an introduction. Jesus, meet my friend, a sinner but trying so hard to overcome their nature. Friend, meet Jesus, your Lord and Savior.

I’m saved. Jesus Christ died on the cross for my sins and made me white as snow. But I’m still in pain. My heart hurts. Why? Because I am a new creation still living in a broken world. And until Christ returns, that’s the way it is. But we’re not just lumbering along, surviving until we get to a better place. God has a plan for our time here on Earth. And we need to push past the pain, the hurt, the anger, the bitterness and the suffering, in order to see joy, and love, and hope, and his glory reflected in the lives around us. Again, God didn’t say “Good luck”, and stroll off to play a round of cloud golf. He’s given us tools. He’s given us the Holy Spirit, the wisdom of our friends and teachers, and scripture.

So don’t be afraid to hope, my friend. You’re well equipped. And you’re not fighting alone.

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Imperfect Specimens

Flying wheelchair manWhen I think of space, I think of Ender’s Game where Ender’s greatest strength was that he could see all the possibilities of zero gravity. He looked at space and realized there is no “up”. Recently, I’ve been following Commander Chris Hadfield’s journey, and I’ve been looking at space, wondering if there is no disability. This is way oversimplified and the answer is yes, there is still disability, but like everything else in space, it’s different.

Legs are for walking. Or running, jumping, climbing. Locomotion. But the thing is, legs evolved on a world with gravity. So when you get into orbit, legs, while not exactly useless, are certainly not going to be fulfilling their original job description. Hence the reason Lois McMaster Bujold introduced the concept of “quaddies”, genetically constructed humans with four arms, who were designed specifically to live and work in zero gravity. Because an extra pair of arms seems a lot more useful in space than legs.

Now, Bujold writes science fiction, so I couldn’t trade my legs in for another set of arms even if I wanted to, but it does make me think

Floating legs

I never thought I’d thank my dad for taking this picture.

of zero gravity as an equalizer for paraplegics. It won’t matter if our legs don’t work because we wouldn’t need them all that much anyway. The only problem I can see is floating legs. I don’t have the muscles that keep my legs straight and together, so when I swim, they float every which way. Kind of amusing to watch, kind of annoying to swim with. And I imagine the same problem of weightless, uncontrolled limbs would crop up in zero gravity. I can just see myself typing away at some console and finding my foot brushing my ear. Though that’s easily fixed with a stick and some duct tape.

This is all a moot point because only the healthiest go to space right now, but we’re looking at a future where space travel will be as common as flights between continents are here on Earth. One day, people with disabilities could be astronauts.

And one of the things I find interesting is that the human body is not made for zero gravity, so even the most perfect specimens of humanity are at a disadvantage in space. They have to learn new movement patterns and develop different reflexes to cope and adapt to their new environment. Just like someone facing a disability for the first time. Maybe space programs should already be drawing from those of us with disabilities because we’re used to adapting to new circumstances and new ability.

I realize I’ve only explored a very narrow view of disability, namely lower body weakness, because that is what I’m most familiar with and what I’ve spent the most time speculating on. But there are hundreds of different disabilities out there that could also benefit from space travel, or be even more hindered by it. Let’s face it, quadriplegia is going to suck no matter what planet you’re on. Unless you find one where you can plug your brain into some kind of virtual reality. And I could see things like OCD or depression getting worse by being trapped in a box for six months.

Either way, I thought the concept was interesting and I’d love to explore more aspects of it. And now I think I’m going to have to write about a space cowboy with paraplegia because that is just too awesome to pass up.

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Hard Beauty

Out of My mindOut of My Mind by Sharon M Draper

Eleven year old Melody has never spoken a word. She has never been able to walk or dress or feed herself. But Melody has something to say and with the help of some loyal friends she’s finally going to say it.

 

This book was beautiful. And so so hard. Thanks go to my mom and my little sister for the recommendation. I really admire an author that can keep me that close to laughter or tears for page after page. Maybe if I keep reading books like this some of that perfection will rub off on me and infuse my own words.

I started this with the impression that it was going to be a happy story. I’ll warn you, it’s not. But it is real. I try not to spoil endings in my reviews, but I want to say that bad things happen. Humans can be awful. And sometimes we have to make our own sort of happy ending through all the crap. Sharon Draper recognizes this and doesn’t try to dip it in honey.

I did feel like the story started off slow. It took about ninety pages to establish Melody’s “ordinary world” before things started changing and she could start growing. Still, I was caught by Melody’s voice from her first words. She was brilliant and funny and courageous, and I even found myself wanting to be her at times. Every witty observation, every sharp retort made me appreciate the irony: I loved the voice of a character who couldn’t actually talk.

The same irony was woven through most of Melody’s struggles. She wants to be normal. She doesn’t want to be one of the “special ed” kids. But she also doesn’t want to be the star. She wants to fit in. She doesn’t want to look stupid. She wants the other kids to like her. What “normal” eleven year old hasn’t wished for all of these things? Melody had no idea just how relatable she really was.

My favorite aspect of this book was Melody’s role as an observer and how that changed through the story. She was the ultimate anthropologist, seeing and cataloging the people around her until she finally found the means to affect the world she had been studying. We watched her reach out to change the way people saw her, watched her learn there were some things she’d probably never be able to change. And in the end we watched her decide which was more important.

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Living as an Imposition

Cynthia VoigtIzzy, willy-nilly by Cynthia Voigt

When Izzy loses her leg in a car accident with a drunk driver, she feels like she’s lost her whole life. Her friends can’t relate to her, and her family doesn’t understand what she’s going through. But when another outcast reaches out in friendship, Izzy learns that, despite everything, she hasn’t lost herself.

 

Plot wise this book was a little slow. Not a lot happened. And yet, I loved it. I loved Izzy’s journey, her realizations. I loved the way she learned more about herself and her relationships with her family and friends through her trials than she ever had before. Sometimes it’s only through struggle that we can really know ourselves.

Cynthia Voigt did a fantastic job portraying Izzy. So many of her feelings and her reactions echoed my own. And Izzy is a teenager, only fifteen, so she’s already a mess of uncertainties and crises. She’s still trying to learn who she is and who she wants to be when the process is interrupted by tragedy.

That was one of the things that made Izzy feel so real. Her emotions were not simple or straightforward. Most of the time, she didn’t know what she felt or thought, and that’s so true of life. What goes on in our heads is not black and white. I loved the line: “I was wishing I could leave the table, because – because my being there, in the family, was making demands, and they were acting like I wanted to make them or had no right to make them.” Voigt puts words to a feeling I’ve never been able to properly express. How do I give voice to such a confusing mix of emotions? Even when people try to anticipate your needs and accommodate them, or try to do something nice for you, you still feel like you’re in the way. Even when they’re nice about it and you know it’s no trouble to them, you still feel like you’re an imposition. And being an imposition is not a comfortable feeling.

Although, Izzy was really good at hiding what was going on inside. When someone asks “How are you?”, it’s so much easier to say “I’m fine”, even when you’re breaking up inside and absolutely nothing is right. And that’s where someone like fellow outcast, Rosamunde, makes all the difference. You need someone to counteract both extremes. Someone who won’t pretend that nothing has changed but also won’t coddle you. My someone wasn’t as perfectly tactless as Rosamunde, but he was a lifeline. He knew and acknowledged that my life had changed, and at the same time, he was there beside me the whole way.

Also, I thought Voigt had some interesting things to say on how disability can change the nature of friendships. In reality, disability makes most people uncomfortable on some level. I know. I used to be one of them. Being uncomfortable isn’t a crime, but the real friends are the ones who stick around despite the awkwardness. The ones who try to make the effort, and who occasionally screw up and say the wrong thing. I’ve realized how blessed I was during my recovery to have the friends I did. And do. Thanks guys.

 

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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?

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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?

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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.

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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!

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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.

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