I spent the weekend at the Pikes Peak Writer's Conference. It's always my favorite event of the year. I get to see old friends, meet new ones, and learn tons from the amazing speakers.

This year I actually got to be faculty and teach a couple classes like writing disability in fiction, and a comparison of story structure. I got a lot of requests for the notes, so if you were in either of those classes, or if you're listening to the recordings, I'll post those here. If you're really ambitious and you'd like the transcript I used, feel free to email me and I'll send you a copy.

Walking on Eggshells: Writing Disability Without Offending the Disabled

The Story on Story Structure: A Comparison of Save the Cat, Story Engineering, The Snowflake Method, and The Hero's Journey

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.

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.

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.

 

 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.

 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.

Well you don't know what we can find,

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

On a magic carpet ride.

I 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.

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.

It’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.

Freak 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.

When Dillon Richard helps build a quantum computer that can crack any and all code, he gets way more than the better-privacy-for-everyone that he counted on. Now he’s stuck between those who want to use him and those who want to kill him, and the woman who makes his heart pound and the woman who could give him a future.  

I really enjoyed this book. When I read the cover copy, I thought this would be a spy novel. Warning: It’s not. It’s more of a cross between Frank Peretti and Michael Crichton. Lucky for Mr. Ingermanson, I love both. The thriller with a Christian/romantic vibe really worked for me, and I’ll admit, I kind of have a thing for nerds (being a huge one myself) and Dillon made a seriously cute nerd. Now, I don’t have Asperger’s, so I can’t really analyze Dillon’s character for accuracy or that gut feeling I get with other books that are closer to my experience, but there were some things that bothered me and some things I thought Ingermanson did well.

Dillon referred to the people around him as “Normals” and to himself as “not-Normal”, recognizing there was something significantly different about him. I don’t know how people with Asperger’s think or feel about themselves vs society, but I do know some people with Autism and they don’t necessarily think in terms of us and them. Accuracy aside, I think this is a dangerous idea for an author to perpetrate. It encourages readers to think of Dillon as “other” which will eventually translate into real life. I felt like that could have been handled a bit better.

I liked watching Dillon try to figure out social cues, fitting them to formulas he can solve. This expression plus these words usually equals this, therefore I should respond thus. His logic and thought process were also well represented in the stripped prose. Dillon’s point of view was clearly different than the others, not just in word choice and backstory, but in the way he viewed the world, and it’s always really interesting to see the world through someone else’s eyes.

There was way too much quantum mechanics for me. I did not sign up for a lecture, and I thought the writing was a bit repetitive in places. Some things were said several times the same way and all I could think was, “Thanks for the recap but I got it the first time.” Also, some of the conversations and character interactions felt forced and unlikely. I’m aware that I’m emotionally reserved when it comes to talking with people, but I’m pretty sure very few others would have been that blunt and candid at such an emotional climax. “Pick me, Dillon.” “No, pick me.” I kept expecting him to wake up from the dream.

With that said, a book is the sum of its parts and this one came out way in the positive on my scale. I’m so sick of love triangles, but I picked it up anyway because Dillon seemed like a great character. I was impressed by the way the women treated him throughout the book. There was some recognition of Dillon’s “weirdness” at the beginning but mostly they treated him like any other character with some specific quirks and pet peeves they can work around. And I’m just glad he picked the right girl in the end. “Roses are red, the multiverse is blue.” Be still my heart.

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

I 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?

One 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 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 change 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.

So 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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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.

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.

When 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

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.

Out 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.

Izzy, 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.

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?

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?

Breath 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.

Embattled 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.

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!