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Magic Carpet Ride (or How I Learned to Mono-ski)

So I decided to learn to ski. I grew up in New York and took skiing lessons when I was seven, and I went a couple times in high school and later. But it's been over seven years since my injury, and in the meantime, I hadn't really thought about it much. But over New Year's we had some friends in town and while we were driving them around Winter Park, I realized how much I missed it. And how silly it was that I hadn't tried out the alternative.

Mono-ski

The National Sports Center for the Disabled is located in Winter Park and offers lessons and programs for all kinds of disabilities for all kinds of sports, not just skiing. Jim, Bethany, and David were my super awesome sidekicks for the day (or the pick-kendra-up-after-she-falls-down team). Let's just say it's a lot harder than it looks when you're staring up at the mountain all starry-eyed saying "I could be a paralympian!" First, they fitted me for a mono-ski, basically a chair on a ski as seen below in the very blurry picture.

fitting a mono-ski

Then we went out to the bunny slope where I learned how to glide, turn, and turn to a stop. Theoretically. I still think the best way to stop is to fall over but my back disagrees, so I guess more practice is in my future.

 

 mono-ski bunny hill

mono-ski bunny hill

 And can I just say kudos to David for running around in his ski boots up and down a hill all day?

After I could stop reliably, and you know, not ski off a cliff, I took the plunge and actually went up the mountain to find a nice easy green run. Getting the mono-ski up on a chair lift is interesting -- or terrifying, considering you can't see the lift underneath you, just your legs dangling over the abyss. Not sure the chair lift ride is my favorite part of skiing anymore. But you just sit there and the lift literally scoops you up. Pretty cool.

http://www.youtube.com/watch?v=EwVO3EhW2Ps&feature=youtu.be

Once at the top, I had a lot more fun on the green run than I did on the bunny slope. Mostly because I could go longer between falls. It's funny though, to watch the video. It did not feel that excruciatingly slow at the time. I could have sworn I was about to break the sound barrier.

http://www.youtube.com/watch?v=Bd-gkvEeB24&feature=youtu.be

By the end of the day I felt like it was all starting to click, though at that point the exhaustion had kicked in. I went home and got some therapy from the best source possible.

Therapy Jonas

 I want to thank my instructors for being so patient and flexible. These guys really know what they're doing. And I can't be the easiest person to teach with my do-it-wrong-million-ways-before-I-do-it-right kind of learning. I wasn't ready to race Picabo Street by the end of the day, but I will definitely be heading back to get it right before the end of winter.

 

mono-ski magic carpet

Well you don't know what we can find,

Why don't you come with me, little girl,

On a magic carpet ride.

So This Guy's Still Doing Awesome Things

I was out till three in the morning last night with some friends at The Hobbit double feature (great movies by the way),  so today is a slacking off kind of day. I figured I'd share something cool with y'all then head back to bed. Remember this guy?

https://www.youtube.com/watch?v=AUUVfPy0UgI

I love that Aaron teamed up with Devin because he does some really gorgeous short films and music videos. I can always tell a Devin Graham piece by about two seconds in.

DisabilityKendra
Did You Really Just Say That?

CrutchI guess I should start a series of these and call it “Did you really just say that?” Sometimes I feel like people don’t really think before they speak. I was walking through the grocery store the other day when a lady stepped out in front of me with her cart. We did the awkward dance before I stepped around her. I laughed and said “Sorry, it’s hard to change directions.” It was supposed to be a joke because that’s how I relieve tension. The appropriate response would have been to laugh with me and walk away. Instead she stopped and looked like she was working up to something. So I waited politely, mentally tapping my foot because this was supposed to be a quick stop with my husband waiting outside.

Finally, she came up with, “I’m sorry. About…” She gestured to my feet and back up to my head. “It’s just so terrible.”

I said, “It’s okay,” because what the hell else am I supposed to say? I get this one a lot, this and the “When are you getting better?” This lady basically stopped me in the grocery store to tell me she felt sorry for me. At least that’s the interpretation I’m going with. I guess her gesture could have meant “It’s just so terrible you’re alive.”

I’ll give her the benefit of the doubt and say it was the first one, because, you know, everyone wants to know they inspire pity in the rest of the human race. In what world is that encouraging? In what world is it accurate? My life isn’t exactly the mire of aborted dreams and hopelessness she seems to think it is. Oh, I’m just hanging in there until I die. Given how many kids (and adults, though they won’t admit it) want to play with my crutches and my wheelchair, I must have it pretty good.

And it’s funny because I get the complete opposite occasionally, too. The “you’re so inspiring” or “brave”. Now, I wonder how many people are thinking the “I’m sorry for her” while pasting the “inspiration” thing on it to make it more palatable.

Either way, I wonder if people really realize what they’re saying or if they need it played back to thm.

DisabilityKendradisability
Loving the Small Things

The Blade ItselfThe Blade Itself by Joe Abercrombie Look I’m having a really hard time writing a summary for this and it’s Nanowrimo, so give me a break and if you want to know what the book is about, go here.

 

Joe Abercrombie does not write my favorite books, but he certainly writes some of the most fascinating. I actually read this for the first time while Justin Landon was doing his re-read over at Tor.com. A happy coincidence. And it was a great way to read such a layered and complex work. I could read it for myself, draw my own conclusions and then hop over to see what Justin had to say about this or that chapter. I’m not an avidly analytical reader so I was surprised and proud to see I actually picked up on a lot of the same themes he was so excited about.

Of those themes, one of my favorites was that of heroism. Abercrombie presents us with three possible heroes: the noble swordsman – literally, not morally; the barbarian – not as popular an archetype as the swordsman but still widely recognized; and the crippled torturer – who’s not on any list as far as I can tell. With two much celebrated archetypes readily available, why would we even notice the third? Well, the swordsman is a self-obsessed bastard, and the barbarian is practical, and well, let’s be honest, just a little boring. So the one we’re drawn to is the third. And despite the fact that he tortures people for a living and all his bitching and moaning (or maybe because of it, he does it so well, after all), Glokta is surprisingly sympathetic.

I’m having a hard time cataloguing Glokta’s disabilities because they’re so creative and so many. He was once a brilliant, arrogant swordsman himself. Then he went to war. The enemy’s torturers left him a different man. Now, I usually associate torture with excruciating pain that lasts as long as it takes to get someone to say what you want them to say. But Glokta’s torturers made sure that the pain they inflicted would last for the rest of his life. He’s missing half his teeth, he barely walks, he’s got some pretty significant nerve damage, and I’m not sure what’s wrong with his back, but let’s just say it’s worse than mine.

And despite all this he is competent. That’s Glokta’s superpower and it’s what makes him one of my favorite characters written. He falls perilously close to the Curmudgeon stereotype, bitterness infusing everything he thinks and says, but he still manages to be the best at what he does. And isn’t that just a fascinating twist. He’s good at inflicting pain because he knows it so well. He hates his own pain, hates the man he is, but he’s excellent at his job, and frankly, no one else will have him, so he keeps going. He’s stuck in this wonderfully perpetual cycle of self-loathing.

Which would be horrible and depressing if not for his inner commentary. Which is hysterical and pointed and can’t be described any better than that.

And here’s the sugar coated knife Abercrombie sticks us with (as if it’s not already buried deep). Glokta is feared by all. Granted some of that is probably similar to The Princess Bride’s “Dear God, what is that thing?” reaction. But most of it is due to the position Glokta holds. This ruined man, the cripple who can’t eat solid food or get out of bed without help, holds power that makes common men tremble. We’ll have to see what he does with it in the rest of the series.

So far this book sounds truly dark, but scattered amongst the grit there are gems like this: “You have to learn to love the small things in life, like a hot bath. You have to love the small things, when you’ve nothing else.” On the surface, just as depressing as the rest, but really, this is how I live my life. This ray of hope in a genre known as grim or dark fantasy (or as Justin says, Grimdark).

The Saint and The Curmudgeon

Blank pageThere really aren’t enough disabilities represented in fiction, especially when the ones that are there tend to fall into unflattering stereotypes. This is damaging to both abled and disabled people; those of us with disabilities are baffled and even insulted by these depictions. And those who are “normal” assume these portrayals are accurate and try to treat us like the poor souls they read about in their books. Bad news all around. The first stereotype I see the most often is The Saint. This character has been disabled all their life. They don’t know what they’re missing so of course they can put on a brave smile and greet the world with that unique strength that comes from obliviousness. They just keep swimming, unaware of the countless millions their story inspires, amazing their readers with their ability to get out of bed in the morning and face life. You can recognize this character by the adjectives used to describe them. Words like brave, undaunted, inspiring, or my personal favorite, stoic. Watch for these characters in minor roles, quietly compelling the hero to bigger and better deeds, because if she can sit in that chair all day without complaining, well, then, gosh darn, I can save the world.

Walking hand in hand with The Saint is The Curmudgeon. This character has only been disabled a short time, a few years at most, which means they remember what it was like to run free. So their bitterness is understandable. Look at all they’ve lost. What’s the point of moving on? they moan. Their pain is cathartic because things can’t possibly get any worse for them, and we’re reminded that our lot isn’t really that bad. This character doesn’t get nice round adjectives, just a dark, foul living space and the occasional caustic remark. You can find them occupying secondary roles, providing a foil for the bright, hopeful hero, because we can’t recognize the light without the miserable reminder of what they might become.

Now, I’ve written this with tongue firmly in cheek, but the thing is, stereotypes exist for a reason. There is a grain of truth in both the Saint and the Curmudgeon. Heck, I’ve represented both in the same day before. That “just keep going” attitude and the bitterness come from very real reactions to disability. But people (all people) are so much more that the 2D façade these stereotypes perpetuate, and the same goes for characters. I want to see the crumbling worldview behind the stoic smile and the steely strength masked by the caustic comments.

Disability, WritingKendra
The Michael J Fox Show

http://www.youtube.com/watch?v=-5T5M1iW1WY I grew up with Back to the Future, Doc Hollywood, and Homeward Bound, so I’ve always been a fan of Michael J. Fox. I even love Atlantis, despite the gaping plot holes that threaten to swallow someone. But Fox slowed down a little in 1998 after he announced he’d been diagnosed with Parkinson’s.  Completely understandable, but here’s what I like best about this story. There’s another chapter.

Fox didn’t fall off the face of the Earth after his diagnosis. He did some guest spots, a few voices, and now he’s doing The Michael J Fox Show. In the interview above, Fox talked about doing his guest appearances and realizing that acting is what he loves. And thank goodness, because the man is a brilliant actor and he’s just getting better. The guest part he played on Scrubs is probably one of my favorites. Take a look.

http://www.youtube.com/watch?v=oW8QRcU6GnU&feature=youtu.be

Who knew you could channel Parkinson’s to bring OCD to life? I really nerd out over actors and comedians using their disabilities as an advantage. Phamaly for example. And Samuel J. Comroe. And now Michael J. Fox. He even talked about finding new depths in his work while dealing with his disease.

I’ve seen the first couple episodes of the new show and I’m really excited. I’m totally on board with the whole comedy is tragedy plus time thing. Sometimes it just has to be funny, and humor can be the best way to bridge the gap between people. Again, Phamaly and Samuel J. Comroe come to mind.

So far The Michael J. Fox Show avoids the “inspiration porn” trap, even going so far as to make fun of it. It’s great to see a work of fiction on TV that portrays someone with a disability just getting on with their life, with the same joys and fears and family drama everyone else has.

Changing Perceptions

CrutchIt’s funny how perceptions change over time. Priorities shift as experience affects your perception of life. For years after my injury, I hated being offered help, especially for something that I only had a little trouble with. I was fighting for my freedom, and it was really important for me to do things for myself. Things like opening doors and going up ramps. I recognize that those are the ones that look extra hard, but they’re really not, and I resented the people who were just trying to help.

After a while I realized it wasn’t really the people I hated. It was the fact that I needed the help in the first place, and those thoughtful bystanders were just the physical representation of my disability. Of course, knowing that didn’t change those feelings. At least not overnight.

But the other day I was in Noodles & Co, and a nice guy jumped up to grab the door for me as I walked out. Funny. No resentment. No self-loathing. Just gratefulness. And a lot of relief. I even joked with him. “These doors are so heavy. Who are they trying to keep out?”

So what’s changed? Did I grow up? Or did I grow out of it? I think I’ve just realized I have nothing to prove – to the world or to myself. And the fight isn’t worth it when the prize is sore legs and a sour expression.

I had a similar revelation last year about using my chair more often. And to be fair, I haven’t resented anyone who’s opened a door for me in a while, but every now and then I’m struck with a then-and-now moment like that.

The way I thought before wasn’t exactly wrong (I’m not sure it was healthy for me but it wasn’t wrong). I needed those moments of self-sufficiency. Independence was important to me at that point in my life. But I’ve lived longer now, I’ve done things I hadn’t then. Different fights are important to me now. This is one I can leave in the past.

So next time you see me, feel free to run ahead and open that door. I promise not to bite your head off.

The Knight's Champion

Freak the MightyFreak the Mighty by Rodman Philbrick  

“I never had a brain until Freak came along…”

12-year-old Max is used to having no friends. He’s used to the whispers about his size, about his intelligence. About his father. But when Freak moves into his neighborhood, small and smart as an encyclopedia, the two of them find they are stronger together. For together they are Freak the Mighty.

 

I can’t believe I waited till I was twenty-eight to read this book. I have kind of a thing for big softies and their genius counterparts, like Fezzik and Inigo (The Princess Bride by William Goldman), and Grunthor and Achmed (Rhapsody by Elizabeth Haydon). Their trust and partnerships always make for compelling reading. And Max’s background made him all the more sympathetic. I loved that Freak was never frightened of Max, even when all the adults were nervous. Freak understood him and reached out to him from the moment they met.

As for Freak’s disability, I don’t know much about Moquio Syndrome, but I loved Philbrick’s portrayal of him. We saw Freak through Max’s eyes, and to Max, he was a genius and a hero. Unlike the adults in their lives, we don’t pity Freak because Max doesn’t see anything to pity. Any time someone refers to him as “that poor boy”, Max is there to disabuse them of that notion. If Freak is a brave knight, then Max is his noble champion.

Freak also had an amazing ability to take himself out of his situation into something more exciting. I can totally relate to imagining a future outside of what is possible. It would depress the hell out of me, but I can see how it would give a kid like Freak a way to cope.

And in a way, Max has his own disabilities. The way people judge him based on his looks and family and his performance in school limits him in his day to day life. It’s only Freak who looks beyond the surface and sees Max. And in the end, it’s Freak who changes the way Max sees himself.

Kinect Concerns

I am a gamer. I log far too many hours playing Minecraft, The Elder Scrolls, and Halo. Gaming accessibility has never really been an issue since I’m perfectly capable of sitting on the couch, smashing buttons. But when Xbox announced the Kinect a few years ago, I had serious concerns. A couple friends I considered knowledgeable brushed them off saying it wasn’t really an issue. How can it not be an issue when all the promos look like this?

Kinect promo

If this is the future of gaming, I’m going to be relegated to the position of party-pooper. Not an entirely unfamiliar feeling and an extremely unwelcome one.

Now, the Xbox One is on its way, which includes the Kinect as part of its hardware, meaning game producers can use its capabilities whether you want to use the Kinect itself or not. Part of me sees how cool this could be: zipping through menus with my hands, voice recognition during movies, wielding a sword in an RPG. But if I have to stand up and balance while wielding said sword…Game Over.

I’ve done a little researching and found some promising information. Gaming accessibility for people who are blind is something I never really thought about until reading The Fault in Our Stars, but there are developers out there working on it. Pricing is still the biggest limitation but it’s a start. As for the Kinect, it looks like there are those who share my concerns and are working toward accessibility for all users. “Seated users can enjoy several features and games developed for Kinect for Xbox 360. Currently, the ability for Kinect to work with seated users is largely dependent on the actual game itself. Some games are more accommodating of seated users than others. Game developers do have the ability to design their games in such a way that activities that some users have trouble with can be skipped or completed in a different way.”

“Some features and games” and “Skipped or completed in a different way” doesn’t sound particularly ideal to me, but at least I won’t always be stuck in the corner. And I’m happy to see Fable: The Journey, Skyrim, and Mass Effect 3 on the list of “seated friendly” games.

I just hope Microsoft will continue to educate game producers and challenge them to create versions of their games that are just as enjoyable sitting down, or with prosthetic limbs, or limited vision. Hopefully a controller will always remain an option. It just seems a little counter-intuitive to some of us that you now have to be physically capable to play a video game.

DisabilityKendra
Is Merry a Person First?

Once Upon a Time Last week, I talked about writing characters with disabilities and finding a balance between the two extremes. Because it would be easy to overplay your hand so a character is nothing except their wheelchair, or treat it with kid gloves so the disability is just another window dressing that fades into the background. Then I posed some questions for writers to really dig in and examine their characters and their motivations for writing them in the first place.

And I’m going to share a secret with you guys. Lean closer. Closer. Okay, you can’t tell anyone…I…write…characters with disabilities. Shocking, I know. So I decided to put my money where my mouth is and ask myself these same questions about Merry, the heroine of my young adult fantasy, By Wingéd Chair. So let’s see if she’s a person first.

Merry is a seventeen year old student who suffered a spinal cord injury three years prior to By Wingéd Chair. She uses a manual wheelchair that her father built.

  • Is she more than her disability? A lot of Merry’s flaws come from her experience in the wheelchair. She is defensive to the point of hostility. She does not accept help gracefully, and she hides her vulnerability behind layer of snark and self-sufficiency. But there are other things that define Merry that have nothing to do with her disability. She is goal-oriented and persistent. She is courageous and funny. And her knowledge of the OtherRealms is second only to her father’s, which is what leads her to team up with Robyn Hode eventually. All of these things are affected by her disability, but they aren’t a result of it. They’d define her even if she was able-bodied.
  • Is she more than one detail deep? Since I’m writing from personal experience, I tried to give readers many things that would ground them in Merry’s situation as well as her head. And I tried to stay away from stereotypes and tropes that are damaging to the character and reader alike. I did touch on going to the bathroom but that was more a nod to the time period and setting, not the stereotype. Movement is a huge consideration for Merry, and as a result, for me as the author. For instance, how do you navigate a fight in a wheelchair? And what happens when you’re kidnapped or stranded without your primary means of locomotion? Merry is faced with these questions and many more. And I consider her fears another detail that help round her out. There are the expected ones: who does she ask for help? Will anyone ever find her attractive? But there are others buried deeper. Merry is afraid of new situations. She’s afraid of losing what little control over her life she has. There are plenty more details, if you’re interested, over in the Accessible Excerpts series.
  • Do they have heroic qualities above and beyond their ability to adapt? One of the things I love about Merry is that her strengths keep moving her forward despite the obstacles I throw at her. She doesn’t take no for an answer. Whether this entails dealing with her disability or not, Merry goes for what she wants. And she runs toward danger – well, rolls toward danger – disregarding the consequences. And she is loyal, even when presented with a temptation most in her situation would have to seriously think about.
  • Is she healed at the end of the book? Hell no. Just as in real life, Merry will have to deal with her disability for the rest of her life. She is in a much better place emotionally at the end of the book, but physically she is the same. Even in fantasy reality has its limits.

So, all in all, I think Merry is a person first. Her disability plays a large role in her growth as a character because that was the story I wanted to write. But she is so much more than the sum of her physical abilities and by the end of the book she’s confident in who she is.

Person First: Just Happen to Be Disabled

"Just Happen to be Disabled"

Disabilities in SF/FI see requests all the time for books about characters with disabilities where the disability is not the main conflict, characters that “just happen to be disabled”. The thing is, I understand where this is coming from. I talked about it last week. People with disabilities are first and foremost just people. Our struggles are not the most important – and certainly not the only – things about us. But we still want them acknowledged. We want to be “normal” and normal requires representation, doesn’t it? No one will recognize us as normal without first recognizing us. But to be completely honest with ourselves, disability tends to be pervasive. I mean, it’s exceptionally hard to define, but I believe a major part of disability is it changes your life. As okay as I am, as much as I’ve accepted my limitations, the truth is, I would live differently if I could walk better. No chair, no crutches. Those are obvious, but there are others, too. No constant low-level anxiety about how I’m going to get out of this folding chair. No putting my back to a wall so I don’t have to worry about being jostled from behind. No blog about disabilities in fiction, and no writing fairytale heroes in wheelchairs. Life would be different.

Then what’s the difference? Why do we read about certain characters and cringe at their portrayal? What does it mean that they “just happen to be disabled?” If it means that a character should be a person first, then I agree. But if they’re saying they want to see a character that’s in a wheelchair and the chair doesn’t play any part in the main conflict or the character’s arc, then I feel like that’s unrealistic.

A disability is going to affect the way a character thinks, feels, and reacts. The same way their race or socioeconomic class would. We’re taught to take these things into account about the characters we create so why would one who’s disabled be any different. It may not be the main conflict (and honestly, I’m struggling to figure out exactly what that means), but it’s going to affect it. Just as much as it will affect the character’s arc. No matter how hard you try to write the book so it’s “not a big deal”, if you’ve done it right and the disability feels real, then it’s still going to feel like a big deal because it’s always there.

So in the end, it’s a balancing act. How do you recognize the life changes and still write a character who is a person first and disabled second? Especially when that second begins to feel like a pretty big first.

The questions I’m starting to ask myself while I write are:

  • Are they more than their disability? Disabled characters are going to have quirks and flaws and strengths unrelated to their disability, just like every other character in the book.
  • Are they more than one detail deep? No character should be limited to one characteristic, just as no disability is defined as one trope or stereotype. An author loses a lot of points by repeating the same detail over and over again as if that makes the disability more real. We got it, she needs help going to bathroom. You’ve beat that dead horse to death.
  • Do they have heroic qualities above and beyond their ability to adapt? Yeah, sure being adaptable is a good thing, but when left with no other options, most people will bend before they break. I want to see the heroic qualities of Aragorn or Luke Skywalker in a character with a disability.
  • And my least favorite, are they healed at the end of the book? This is just plain insulting and unrealistic and damaging to all people with disabilities everywhere. By healing a character of their disability, an author is saying, “There’s something wrong with you that needs fixing.”

These are my questions. What are yours? I’m realizing that everyone is going to read my books differently. I cannot please everyone, but I can’t enrage everyone either. All I can do is write my characters with as much reality as possible. They will have strengths, and flaws, and they will have disabilities.

Person First                                                     Person First: Is Merry A Person First?

Person First

Me and my booksOne of the hard things about always talking about disabilities is that it begins to feel like that’s the only thing that’s important about me or that it’s the only thing I care about. Sometimes I worry it’s the only thing in me that anyone would find interesting. I feel like you guys get a very skewed picture of me, like the reflection in a circus mirror, all bulbous and distorted with my nose way bigger than my face. Looking at that Kendra you’d think, “Boy, that nose is really important. She must spend a lot of time taking care of it.” But really my disability – and my interest in disabilities – is only a part of the whole.

In PT school we were taught “person first” language. It’s the concept that anyone, no matter their ability or functionality, is a person way before all the other labels are applied. In practice it means that I’m a woman with a disability. Not a disabled woman. Tricky, right? Even I’ve had trouble weeding out the language that reduces me to a statistic.

But here’s where I struggle. I’m this awkward mix of idealistic and pragmatic. I want to believe I’m a person first and everything else is just a high-priced add on I can compartmentalize, but I recognize that my injury has changed me. Invaded me. The little box that says “Disability” has leaked into the box that says “Wife” and the one that says “Sister.” The one that says “Daughter.” That one hurts.

Yet even with the smudged lines, the disability doesn’t overwhelm the other pieces of me. It is not the most important thing about my life or my experience.

I want there to be a formula, something I can plug bits of my life into that will tell me, “Yes, you’re doing it right.” But person first is not clear cut. It’s not a matter of just changing the way you think about yourself. It’s messy. It’s life. Funny how that works. And still after years of hard work and growth, I struggle to remember I’m more than my disability.

I’m a gamer. I’m a sailor. I’m a deacon and a quilter. I like fantasy and fairytales. I love to eat and hate to cook. I write among hundreds of books and it’s awesome. All of which I can do and be with or without a disability.

Person First: Just Happen to Be Disabled

What's Your Normal?

Dad's quiltWhat is normal? Is it the median or the average? Do we take the sum of all existence and divide by the number of lives to come up with our expectations? It’s one of the ultimate ironies that we celebrate superheroes with one hand and strive for normalcy with the other. This is a Blog Hop. So, hoppers: What do you think? What are the ups and downs of normal? What’s normal anyway? Do you wish for it or abhor it?

With every expression of a gene, every formative experience creating a different person, normal becomes a meaningless word. Each individual has their own boundaries and parameters. That’s why I hate questions like “When are you getting better?” Or “How long do you have to use the crutch?” I’m not getting better. I will always need the crutch (and sometimes a wheelchair). This is my normal. And my normal isn’t any less than yours. It’s just different.

It goes the other way, too. Michael Phelps is probably the ideal of human physicality but I don’t expect everyone I meet on the street to swim like he does. That’s his normal. Not mine. And not yours either. Unless, of course, you’re sitting pretty on 22 Olympic gold medals, in which case I’ll shut up.

I think we ache for the status quo so much because we want to fit in, to be accepted for who we are. So much so that we’re willing to Monochrome Blockchange who we are. We’re pack animals. We have a herd mentality; we form family groups – however you want to look at it. There’s strength in numbers but also obscurity. I quilt. I work with colors and patterns. If you put too many pieces of the same color next to each other, you lose the point of patchwork. The pieces all fit together, but the pattern disappears. It’s only by contrasting and complementing the different fabrics that you see the whole.

Lonestar QuiltSo I’m going to stick with my normal and I hope y’all stick with yours. Maybe together we’ll make a nice wall hanging.

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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.

Detour

Today we're taking a small detour over to Bookworm Blues where I'm a guest author. I loved Sarah's Special Needs in Strange Worlds series last year and was really excited to see it revisited. She hosted some great new voices this year and some old favorites. Take a stroll back through the month because the whole series is really worth it. And be sure to come back here next week when I'll be reviewing Sir Thomas the Hesitant and the Table of Less Valued Knights by Liam Perrin, another guest in Sarah's series.

A Different Kind of Hero

DisabilityKendra
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.

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

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.

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.

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.

 

On and On

When shadows creep and fall

Walk on, walk on

Against the wind and tide

Trudge on, trudge on

If you’re ever weak and lonely

Limp on, limp on

When darkness hides the light

Crawl on, crawl on

And the glow of hope is dim

Hold on, hold onCrutch