Category Archives: Disability

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.

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.

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.

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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?

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.

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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.

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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).

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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.

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The Michael J Fox Show

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.

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.

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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.

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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.

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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.

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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

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