Tag 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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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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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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Ingermanson’s Double Vision

Randy IngermansonWhen 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.

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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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“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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