Christyna Hunter: Define Me … If You Dare!

Despite being born with a disability, Christyna Hunter has surpassed all perilous predictions. She graduated from college where a friend introduced her to romance novels, started a freelance writing career, self-published two romance novels, and worked at a non-profit organization. Currently she works as a library associate with Loudoun County Public Libraries in Virginia, reads romance novels in her free time, and prays often to her writing muse. You can find more pieces by Christyna Hunter at Public Libraries Online.

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“So, do you have MS or Parkinson’s?”

I glance over at the woman who I am helping. I straighten up from bending over a change machine, trying to coax a stubborn, bedraggled dollar bill into the feeder for the fifth time. My hands slightly tremble from frustration and my disability. There are happy, chatting children around us so I raise my voice just a bit to answer, “No. I have a mild form of cerebral palsy.”

She smiles. “Oh, and what do you contribute to the fact that you are doing so well?”

What a pleasant question. Folks often don’t ask questions of me and my disability. I am sure there are several reasons why. But I honestly don’t mind talking about it. The disability has shaped my life just the way being an only child has or being a writer.

“Well, I did have lots of physical therapy as a child.” In addition, I was taught to type on a big, fat, electronic blue typewriter—before there were computers— when I was nine years old. I was also in Special Olympics, Special Education for both second and third grades and adaptive P.E. But I don’t give all of those details. TMI for a stranger.

The woman, probably in her 60s with obviously colored hair and an angelic face, responds, “I hope you know God can save you.”

Angelic, my ass.

As I helped her complete her transaction, I just nodded and “hmmm”ed a lot as she continued to tell me that God could save me and that she would pray for me. I don’t ever recall the need throughout my life to be “saved.”

After this incident, I recalled one many years ago, probably in my early 20s, where I was explaining to a new acquaintance about my disability. She told me, point blank, “You’re not disabled. You’re not in a wheelchair.” So I had no right to use such a word as disability to talk about myself.

Another incident. Also in my 20s. I went to a non-profit organization to get career assessment guidance. The career guidance counselor’s stellar advice? Tell any prospective employers that I had a disability as soon as I talked to them because my voice “made me sound retarded.” (Note, I learned later on as I was researching a college paper about the Americans with Disabilities Act that the counselor’s advice was pretty much the wrong thing to do.)

Finally, I was doing group work in college and one day the group members started talking about life goals, desires, wishes, etc. I shared that at a young age I really wanted to be a dancer. It took many years and some hard knocks, but I accepted that I would never be a dancer. The CP disturbs my balance and muscle control thereby interrupting any graceful pirouette or a quick two-step. When a girl in the group who happened to be in a wheelchair shared her life dreams, she was sure to look directly at me when she said, “And I can do anything I want to. Nothing stops me!”

What, is this a competition?

After college graduation, I decided I was going to write a romance novel. A friend of mine got me hooked on reading the genre and she later commented that I should write one. Sure! Why not? Piece of cake…

Not!

My heroine had a spinal cord injury and so I spent years doing research, asking questions, fine tuning her background. I also researched the genre and writing itself. In the process, an early draft was sent to an editor who had a very interesting response.

I’m truly sorry to disagree. But no one mocks people in wheelchairs. My sister contracted polio at the age of 5. She went from a wheelchair to crutches to leg braces. No one mocked her, especially her classmates.

Great. That is a lovely story and it’s great to know bullying and harassment was not a factor in this person’s life. But that does not cover every person’s life. It was a factor in my character’s life—and mine—so to downplay it, to define it by someone else’s life, is wrong. In 2005 I published The Butterfly’s Dance, bullying teens and all!

After almost 40 years and many more stories like the ones above, I have learned that I have to make my own definition. I live in this body; I know when I have good days and bad days. A task can be easy for me one day and difficult the next. I have learned there are just some things I have to ask help with to do. And my dreams have morphed into others. I have been to college, had a couple of jobs, been a supervisor, written dozens of freelance articles and a couple of self-published novels. I have to accumulate all the data from these varying experiences and use them to define myself. Otherwise, others will do it for me.

All you writers out there, keep this in mind. Disability can be defined by a quick search on Google. There can be a number of websites that give definitions and examples of a myriad of disabilities and medical issues. And after finding all that data, mostly forget it. Because creating a character with a disability begins with the person. Define your character first. I dare ya!

Bethany Hagen: The Real Narcolepsy

Bethany Hagen has been diagnosed with narcolepsy since she was sixteen. Her young adult novel, Landry Park, debuts 2.4.2014. She lives in Kansas City with her husband and two children. Find her on Twitter and Tumblr.

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I was officially diagnosed with narcolepsy after I was sixteen, having done a full-night sleep study and a multiple sleep latency test (MSLT.)  When we’d first approached a doctor about my sleeping issues–insomnia, terrifying periods of sleep paralysis, falling asleep in class–my dad and I scoffed at the suggested diagnosis of narcolepsy.  We both figured that all of these problems stemmed from my insomnia and nothing else.  But in retrospect, the diagnosis fit like a glove.  Since I was a girl, I suffered from waking hallucinations, vivid dreams, a constant urge to nap, the ability to sleep twenty or more hours in a single day.  It turned out that I had (and still have) a fairly severe manifestation of the disease.  In fact, my new sleep doctor (sigh) laughed when he read the results of my most recent MSLT, because in his words, he’s “never seen a sleepier person.”

Narcolepsy is serious disease that–undiagnosed or untreated–can lead to unemployment, fractured relationships and, probably most importantly, injury or death.  I’ve fallen asleep while driving and crashed into a pasture fence; in college, I once had a sleep attack while walking down a set of campus stairs, slipped and tumbled unconscious to the stone landing.  I say this to illustrate that while narcolepsy is principally portrayed in pop culture for its power to amuse, it also needs to be taken seriously.  Movies like Rat Race and Deuce Bigalow not only perpetuate an unrealistic depiction of narcolepsy (which is a very nuanced disease with degrees of severity) but they also add to the idea that narcolepsy is not a “real” disease.  It’s something funny, something played for laughs, or it’s a plot device in books like Sleeper Code.  And if something’s not real then it can be controlled, right?  And if it can be controlled, then people with N are just choosing to be sleepy all the time…then they can help it and they should know better.

Bad depictions in popular culture foster the narrative of the lazy narcoleptic: Sleepy people are just lazy people who need more discipline.  Their torpor is a bad habit.  They are late/unproductive/lethargic employees.  They are uncaring lovers.  They are absent friends.  And so on and so on.  But actually, no one with narcolepsy wants to be late to work or to nap through a date.  Our brains are cannibalizing the protein hypocretin that makes our sleep centers function, and no treatment, no matter how effective, can stop that.  It’s a miserable disorder that robs you of energy and opportunity.

But I don’t mean to be all negative.  There have been some very good works of art featuring narcolepsy; books like Pete Hautman’s Godless (where the character suffers from possibly undiagnosed narcolepsy or idiopathic hypersomnia,) The Mysterious Benedict Society, and movies like My Own Private Idaho either approach narcolepsy in a gentle, but accurate way, or in Idaho’s case, in a painfully compelling way.  And in a world where an adult man can seriously ask me if narcoleptics are like fainting goats (true story,) I’m thinking we need more books and movies that approach the illness as it truly is–something layered, something difficult, and yes, sometimes funny too.

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Madeline Landry is born into a world of influence and luxury, a world of estates and gardens fueled by nuclear power and maintained by a caste of people called the Rootless. When a Gentry girl is attacked, it is the Rootless who are blamed, even though Madeline knows better.

As she searches for the truth, she can’t escape the rumors of revolution and retribution circulating through the ballrooms, and neither can she escape the city’s new golden boy, Captain David Dana, who has secrets of his own. Soon, she finds herself forced to choose between her duty and her desires, her ancestral destiny and her conscience, and her choice will shake the very foundations of the world she was born to rule.

J.B. Redmond: What You See … And What You Don’t See

JB Redmond lives on a farm in western Kentucky, happily inhabiting his man-cave. The cave is filled with Harry Potter memorabilia, along with posters, models, and even costumes from Highlander (all movies, all show years), Lord of the Rings, Star Wars, Star Trek, and Twilight.  A full-sized suit of armour stands next to his water cooler, and it absolutely will freak you out if you walk through the cave late at night. His movie collection is at 600 and counting, never mind the endless audiobooks on his iPod. He spends most of his time writing, listening to music, watching movies and series he enjoys, listening to books, dreaming up new story ideas, chasing dogs and cats out of the cave, drinking coffee, and listening to the parrot whistle Andy Griffith. Being a published author was his lifelong dream, fulfilled in 2009. He looks forward to more successes in his bright future.

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My name is JB Redmond.

Look for me in my man-cave, way out in the countryside of Kentucky.

I’m 29 years old. I was born about 60 days before I was due, and the fourth day I was alive, I suffered a massive stroke. No one knew if I would walk or talk, or be able to do anything for myself at all. I was diagnosed with Cerebral Palsy, and then with autistic features, and when I was four years old, I could only say seven words. I was scheduled to start school in a self-contained special education classroom designed for children who would likely be fully dependent for the rest of their lives.

Then, a lot of things changed. I learned to talk. I learned to talk so much that my mom threatened to sue the hospital that told her I would be non-verbal, so they would have to take out my vocal cords before her ears fell off. I didn’t talk very plainly, and still don’t, due to dysarthria–­but I would hold my own in an Olympic chattering event.

I have never able to walk, my muscles are weak, I have rods in my back, I have wounds on my feet that won’t heal, I have seizures, and I’m legally blind. I’m telling you this because if you meet me, these are the first things you’ll see. You won’t be able to help it, and I won’t get mad at you for that. I’ll roll up to you in an electric chair, extend a hand that won’t hold itself quite straight, and say hello with slightly slurred speech. I might be looking a little to your left, too, because my eyes don’t always cooperate. We’ll be polite to each other. If you can’t speak a few phrases in Klingon, have never tried to cast one of the spells in the Harry Potter books, and haven’t wondered at least once what it would be like to be a vampire or a dragon, then we might not have much in common. If, however, you can point to the desert world of Arrakis on a map of the universe, confidently sketch a photon torpedo (dorsal view), or prove fluency in Elvish, Entish, or the tongues of Men, we might be headed to lunch. If you spell Neil Gaiman’s name correctly, and you can do a dramatic reenactment of any chapter in Bram Stoker’s Dracula, I’ll even buy. “I’m a hard nut to crack, and I take it standing up,” or at least sitting straight and rolling fast.

What you won’t be able to see when you first meet me is this: I’m a published author. I read all the time­–though in my case, the proper term would be “listen” since I read by audiobook–­and I write all the time, too. I dictate, using an old-fashioned cassette recorder, and my mother types up my finished drafts.

Obviously, I most enjoy science fiction and fantasy, but I’ve never found too many disabled characters in the books I enjoy, unless they’re villains or buffoons. In fantasy, disability tends to equate with evil or sainthood, and that gets seriously old, very quickly. In science fiction, disability usually gets cured by technology, genetic manipulation, robotic implants or exoskeletons, or advanced surgical techniques and medicines. Disability never seems to be okay, or allowed to exist in futuristic worlds, unless they’re dystopian. Recently, I was thrilled to see the movie Battleship, in which the character Lieutenant Colonel Mick Canales (an Army veteran and double amputee), played by Gregory Gadson, has a realistic disability. The solution is equally real-life, his prosthetic legs, and his struggles felt both very real and very personal to me. Best of all, he wasn’t a character to be pitied, and he didn’t see himself as weak or ineffectual. Neither do I. And I hope to see more characters like this in both books and film, played by people who face the challenges in real life (don’t get me started on using able-bodied actors to play people with disabilities).

As for me and my writing, I began telling stories just as soon as I learned to talk (please reference the bit about my mother’s ears falling off). My body couldn’t play, so I focused on creating worlds and universes and characters and stories, and that was how I coped with not being able to do things like other people my age could do. I remember telling stories to my family and friends on long trips, and I particularly loved entertaining much older relatives like my great uncle. They seemed to listen better, and to enjoy the stories even more. When I got older, I began using a cassette recorder to dictate, and that’s how I wrote my portions of Oathbreaker: Assassin’s Apprentice and Oathbreaker, Prince Among Killers (Bloomsbury, 2009).

Co-authoring these books with my mother Susan Vaught was one of the greatest achievements of my life. Having novels published built my confidence, and I’m working on several more fantasy tales–­this time solo! I still use cassette dictation, because voice recognition software can’t yet handle my dysarthria. Also, I can’t edit the text myself, due to my visual and motor problems. Dictating works better, but it’s getting harder and harder to find traditional cassette recorders and microphones. I may have to learn digital dictation soon (Boo! Hiss!). We could do a whole topic on BETTER ADAPTIVE TECHNOLOGY PLEASE, and while I’m at it, why can’t all stories automatically get audio versions? Because I’m totally sick of getting into a series, then having the last few books be print only.

The most wonderful thing about words and writing and stories is, there are no limits. I don’t plan to limit myself in any way with what I write, or how high I reach in my goals.

My name is JB Redmond.

Look for me in the hinterlands of Kentucky–­or on the shelves of your local bookstores, all over this country, and all over this world, and out of it, too.

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An assassin legally kidnaps a terrified boy.

A ruling lord orders an atrocity so devastating it changes the course of history.

So begins this epic tale of love, trust, and betrayal, in which two boys must put aside their childhood understanding of their treacherous world and accept their own incredible power to make a difference.

“A complex and original fantasy…” – Kirkus Reviews

“Excellent piece of high fantasy… None of the characters are cardboard cutouts of fantasy archetypes; they are richly drawn, compelling, and unique…” – VOYA

“This novel is best suited to voracious fantasy readers eager to devour another story of an unlikely hero caught up in an epic adventure.” – School Library Journal

Kody Keplinger: The Trope of Faking It

Kody Keplinger is the author of three books for teens: The DUFF (Designated Ugly Fat Friend), Shut Out, and A Midsummer’s Nightmare. Her first middle grade novel will be released by Scholastic next year. Currently, Kody lives in New York City with her guide dog, a very upbeat German Shepherd named Corey. When she isn’t writing, Kody spends a lot of time eating Thai food, marathoning Joss Whedon’s TV shows, and studying improv at the Upright Citizens Brigade. You can find her on Twitter as well as her her website.

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Recently, there has been a lot of talk about service dogs – particularly, fake service dogs. Some of you may have seen the articles and news reports, awful stories of people who pretend to be disabled in order to take their dogs into stores and restaurants. If the media is right, it’s practically an epidemic.

With that said, I guess it’s not surprising that I get accused of “faking” my disability pretty often. I’ve been yelled at my strangers, I’ve had business owners question my need for a guide dog, I’ve been told over and over again that I “don’t look blind.” This happened even before I got a guide dog. People saw me with my cane and because I didn’t seem disabled by their standards, it was assumed that I must be lying, trying to cheat the system in order to get perks.

It’s not just me these accusations fall upon. I’ve seen it happen to others. I’ve heard people comment on how someone parked in a handicapped spot was “an awful person” because “they can clearly walk.” But never did those people consider the unseen – things that might cause pain or difficulty walking or other reasons a closer parking spot would be needed. I know people who need handicapped parking and regularly receive hateful notes on their car for using it. Then there are people who gossip to me about so-and-so who isn’t really disabled like I am, and don’t i just hate when people take advantage of the system like that?

I’ve been baffled by this for most of my life. Why would anyone fake a disability for a few small perks? And why would it be such a threat to abled people, who always seem so outraged by it? More outraged, sometimes, than actual disabled people.

I have some answers to both questions, but they’re just guesses, really. I can’t really imagine either side. I can’t imagine faking a disability just for the small benefits liking parking closer or taking a dog to restaurants, and I can’t imagine being so angry about it, either. I’m not angry about people getting those benefits. The only thing I’m angry about is how it indirectly affects me: more people assuming I’m faking my real disability.

But I’m getting off topic.

The notion of people faking disabilities is not at all new or novel. In fact, it’s been a trope in fiction for a while. In TV, movies, books, etc, it’s not at all uncommon to come across a villian who pretends to have a disability for one reason or another. And, like many, many disability tropes, it’s a harmful one.

I see the “fake disability” trope as potentially harmful. It can bring suspicion on people with real disabilities. If so many pieces of fiction present a world in which people faking disabilities is common, then why wouldn’t consumers of that fiction start to suspect this behavior in reality? Especially when those same pieces of fiction only portray the extreme versions of real disabilities (complete blindness vs. legal blindness, etc).

Obviously not everyone who consumes fiction assumes these realities. But when these stereotypes are portrayed so often, it’s hard for me to believe that it doesn’t have some impact.

I understand that faking disabilities isn’t just a fictional thing – it does happen in reality. But does it happen as often as fiction portrays? Or as often as the news portrays? I don’t know, but I like to think not. And I’d rather the attention be on people with real disabilities than people faking them.

But what about you? How do you feel about the “fake disability” narrative? Do you think it’s harmful? Do you think it’s as common in reality as the media portrays it to be? I’d really like your thoughts because this is an issue that i’ms still struggling with. So let’s discuss!