Category Archives: Disability

“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?

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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

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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.

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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

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Joy for the Heart that Hurts

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

 

Broken World

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

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

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

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

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Imperfect Specimens

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

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

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

Floating legs

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

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

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

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

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

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

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Hard Beauty

Out of My mindOut of My Mind by Sharon M Draper

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

 

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

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

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

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

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

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Living as an Imposition

Cynthia VoigtIzzy, willy-nilly by Cynthia Voigt

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

 

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

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

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

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

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

 

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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

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