Corinne Duyvis: The Mystical Disability Trope

Corinne DuyvisA lifelong Amsterdammer, Corinne Duyvis spends her days writing speculative young adult and middle grade novels. She enjoys brutal martial arts and gets her geek on whenever possible. Find her on Twitter or Tumblr. Her YA fantasy debut Otherbound released from Amulet Books/ABRAMS in the summer of 2014. It has received four starred reviews and is a Junior Library Guild selection. Kirkus Reviews called it “original and compelling; a stunning debut,” while the Bulletin praised its “subtle, nuanced examinations of power dynamics and privilege.”


The trope of the mystical disabled person is varied, flexible, and very common.

At its core, it’s about a disabled character—frequently mentally ill, developmentally disabled, and/or blind—with some sort of unusual ability. While this trope is related to that of the “disability superpower” and often overlaps, I feel like it has a unique status of its own. Rather than just any superpower, these abilities are often unexplained and mysterious; the characters either hold or are the clue to saving the day, giving them a unique, mystical role in the plot.

A blind girl who’s the only one to see the ghosts haunting the main characters.

A little kid with Down’s syndrome who solves the riddle everyone is struggling with.

A schizophrenic person whose seemingly nonsensical ramblings hold the clue to the mystery.

An autistic boy with world-altering powers beyond anyone’s comprehension.

(And on and on.)

All of these characters are ridiculously easy to imagine because we see them so often. They’re most common in SFF settings, where either they’ll be the only person with a magical ability, or—in a world where these abilities are commonplace—theirs will be the rarest, strongest, or most important. They also appear in settings without any supernatural aspects, in which case the character often has savant-like abilities or unusual insight.

One of the typical things about this trope—although not essential—is that the characters usually aren’t well-rounded, realistic, grounded characters. They’re Othered. They’re ooh-ed and aah-ed over, feared or worshiped, set apart. They’re unusual. They’re mystical. They’re mysterious. They’re different. They’re unexplained.

They’re rarely just a regular person dealing with their own crap alongside the rest of the cast. Instead, their disability and their ability—and the seeming contradiction thereof—are defining aspects of their characters.

Dinah Bellman from The Langoliers.

Little Pete from Gone.

Kazan from The Cube.

Gabriel from FlashForward.

Kevin Blake from Eureka.

(And on and on.)

Writers are often intrigued by the unusual. We see something interesting and our mind starts working overtime, thinking of how to integrate this into a story. This results in seeing a disabled person and thinking of how differently that person must perceive the world, and how that could be used for plot purposes. Or we’ll need a character to perform a certain task, but putting that ability in the hands of a non-disabled character would ruin the plot. Instead, we hand that ability to a disabled character. That way we have a great excuse to only trot out the ability when it’s convenient to the plot. Or maybe we don’t want to explain the reason for the ability, so we just give it to a disabled person. They’re different as is! It’ll be all mysterious and creepy!

There are all kinds of reasons for writers to fall back on this trope, but that doesn’t make it OK. It’s based on existing prejudices and misinformation. Just give disabled characters roles like any other character in the book rather than setting us apart.

John Coffey from The Green Mile.

Jake Bohm from Touch.

Lil’ Bro from NYX.

Duddits from Dreamcatcher.

River Tam from Firefly.

(And on and on.)

I want to encourage writers to start recognizing these characters when they occur, and to steer clear from them in their own fiction. We don’t need some mystical ability to make up for our disabilities. We should not only exist to impart meaningful advice. And we’re not prophets or plot devices.


Otherbound Amara is never alone. Not when she’s protecting the cursed princess she unwillingly serves. Not when they’re fleeing across dunes and islands and seas to stay alive. Not when she’s punished, ordered around, or neglected.

She can’t be alone, because a boy from another world experiences all that alongside her, looking through her eyes.

Nolan longs for a life uninterrupted. Every time he blinks, he’s yanked from his Arizona town into Amara’s mind, a world away, which makes even simple things like hobbies and homework impossible. He’s spent years as a powerless observer of Amara’s life. Amara has no idea … until he learns to control her, and they communicate for the first time. Amara is terrified. Then, she’s furious.

All Amara and Nolan want is to be free of each other. But Nolan’s breakthrough has dangerous consequences. Now, they’ll have to work together to survive–and discover the truth about their connection.

Discussion #7: Warning Flags and Turn-Offs

For our first anniversary, we’re bringing back the discussion post format! In these posts, we ask our contributors for their thoughts on various topics. We’ll post one every Friday this month. Today, we asked:

What kinds of words, phrases, or situations used in book or character descriptions send up warning flags for you? We’re thinking of clichés, ableist language–anything related to disability that may be a turn-off.

Our contributors sent the following responses:


Natalie Monroe: What I hate is when books try to ‘beautify’ disabilities. For example, the character has a limp, but we don’t know the ugly and gritty, like maybe his/her one hip is higher than the other; or he/she lurches forward with every step; or he/she walks bowlegged or duck-footed. It may be that to make the character seem attractive (I have never read a book in which the character in a wheelchair doesn’t have a nice, straight back. My back is as curved as a waterslide), but the point is to make the character’s personality eclipse their physical appearance.

Tyrion from A Song of Ice & Fire by George R.R. Martin is a good example: he’s described as hideous in text, but fans still go wild over him because they find him funny, clever and honorable.


Sara Polsky: I get frustrated by any reference to a character “overcoming” disability or anything that sets a character with a disability up as an inspiration.


s.e. smith: Well, magical cure narratives, obviously. But if I’m casually looking at jacket copy, things I tend to look out for are ‘despite her disability’ or ‘overcoming adversity’ or ‘brilliant but [disabled]’ or something along those lines, where characters are separated out from their disabilities. I’m also leery of anything that talks about disabled characters as inspirational, courageous, or amazing just because they’re disabled. Language like ‘wheelchair bound’ also makes me very uncomfortable, as it suggests the publisher isn’t in tune with disabled people, and that the target market for the book is nondisabled people, not people like me.

I think this is one area where authors are really in a bind, because many don’t have control over their cover copy, and the flap copy may have nothing to do with the book. Those who are in a position to advocate definitely should, both to send a message to the publishing community and to ensure that their books get to people who need to read them. If I was buying a book for a recently-disabled teen, for example, I wouldn’t get something with a cover that described people like her as ‘wheelchair bound’ or ‘overcoming adversity,’ because that’s not language she needs to hear ever, but especially in the early stages of adapting to disability.


Marieke Nijkamp: I’m seconding that completely; the adversity narrative makes me feel incredibly uncomfortable. It’s so inherently othering–people with disabilities may be lesser, but look at what they can still achieve! Aw, yay! /sarcasm

Closely related are those instances when books and/or blurbs talk about disabilities in terms of inspiring other characters. We’ve talked about inspiration porn before, so I will not say too much about it, but I’d like to think it’s not my only purpose in life to be an inspiration to able-bodied people.


Lyn Miller-Lachmann: I think the protagonist with Asperger’s who solves a mystery a la Sherlock Holmes is overdone. It feeds into the same kind of compensatory superpower cliché that has characters with hearing impairments read lips perfectly from across the room. You don’t do justice to a person with a disability by portraying characters with disabilities as superhuman, because most of us aren’t superhuman and are doing the best we can. I understand that the cliché is well meaning in that it acknowledges that persons with disabilities can and do make contributions to society.

And my own character with Asperger’s, Kiara, dreams of being one of the mutant superheroes of the X-Men. In fact, though, she helps not by being extraordinary, but by being present.


Corinne Duyvis: In addition to the excellent examples already listed, I tend to get turned off “autism books” when the flap copy references the character’s “unique worldview” or starts out listing all the character’s peculiarities. I’d rather know what actually happens in the book. Something like this is usually a good indicator that the MC is seen as quirky and special and otherworldly and, well, is written with a neurotypical audience in mind. Also: “doesn’t let disability define him/her.” Gag.

Oh, and plots about how difficult it is having a disabled sibling or parent. While it may be true in many cases, it’s an overwhelmingly common narrative, and it contributes to a really problematic idea of disability.


Kody Keplinger: The “inspirational” thing is an immediate turn off for me, too. Blindness specific, though, any time a character is introduced in a way that shows us how advanced their other senses are (this is a myth, people. When one sense is cut off the others don’t get better, you just get better at using them).

Furthermore, whenever a blind character is introduced who needs help with the most mundane of things (cutting vegetables, for instance) and they spend a lot of time bemoaning how difficult it is to do things when you can’t see. I’ll shut a book pretty fast for those offenses.


Any additions, beloved readers? Share them in the comments!

Kody Keplinger interviews April Henry about GIRL, STOLEN

As a blind woman (and formerly a blind teenager), I’ve found it very difficult – damn near impossible – to find books that accurately portray blind characters. This is why April Henry’s Girl, Stolen was such a pleasant surprise for me. The main character, Cheyenne, is a teenager who lost most of her sight a few years prior to the events of the story. One day she is in the backseat of her stepmother’s car when it is stolen by a teenage boy named Griffin, who might be in just as much danger as Cheyenne when they return to his father’s house.

Cheyenne is a well-researched, well-written example of blindness. It’s not her whole life, though it is a part of it. She’s not always bitter and angry about her disability, but she’s not constantly cheerful either. She uses what little vision she has in a way that felt very real to me. And, as a guide dog user myself, her anxiety over not having her guide dog with her during these horrifying events felt very authentic. I was so impressed that I had interview April Henry–New York Times-bestselling author of nearly 20 mysteries and thrillers for teens and adults!–about creating Cheyenne and the story of Girl, Stolen.

Take it away …


Cover for GIRL, STOLENKody Keplinger: What made you want to write about a blind character?

April Henry: Girl, Stolen began with a story I saw in the local news. A blind teenager was with her mom and step dad.  They went out to dinner and then they wanted to go Christmas shopping.  Heather decided to stay in the car.  Her mom left the keys in the ignition in case Heather got cold. A man came along, saw the keys, jumped into the car, drove off – and then realized there was a girl in the back seat. She eventually talked him into letting her go. But I thought, “What if he had kept her?”

Eventually I asked myself more questions:  “And what if the thief was a teenager too? And what if his dad was running a chop shop for stolen cars? And what if they thought about letting her go – until they learned she was the daughter of Nike’s president?”

Kody: Writing about blindness isn’t easy. I’ll be honest and say that nearly all the portrayals I’ve read have been woefully inaccurate – which was why GIRL, STOLEN was a pleasant surprise to me. How did you go about researching and writing such an accurate portrayal?

April: I started by reading.  I read a lot of autobiographies written by people who had gone blind or were born with little sight, such as Cockeyed, Follow My Leader, Planet of the Blind, Touching the Rock, and more. If I could figure out how to contact the author, I did, and then asked questions. I also emailed and talked on the phone with a girl in high school who was blind and went to a mainstream school.  For example, I asked her what might be a distinctive smell Cheyenne could recognize someone by, and she suggested a couple of things, including mint-flavored chewing tobacco.

And I interviewed two people I knew who did podcasts or radio shows about books and who happened to be blind. One woman in Austin had strong feelings about how blind people are portrayed in the media. She had her computer read it to her and caught some typos. So Girl, Stolen was actually proofread by a blind person!

Kody: One of my biggest complaints about blind characters is that, too often, they are completely blind with no vision at all while, in reality, 90% of legally blind people have some vision. Cheyenne actually does retain a bit of vision, which I found refreshing. Why did you choose to give her some vision? What difficulties did you come across in trying to write from Cheyenne’s perspective? April Henry

April: I decided I couldn’t imagine what it was like to be blind from birth, like Heather.  (I’m pretty sure Heather doesn’t see, or sees only shadows).  Because Cheyenne had seen once, I could have her imagine how things would look. As for how she went blind, I remembered how my daughter and had been walking on an unlit road and a car came up behind us and did something cool with our shadows (as the car got closer, it looked like our shadows were walking backward).  I decided to use that scene, only to have a car careen out of control, killing Cheyenne’s mom and throwing Cheyenne into a sign. I interviewed an ophthalmologist about what would happen to her and why head injuries cause blindness. He’s the one who told me about how many people in that situation still retain a little sliver of vision, but it’s out of focus. I then spent several hours wandering around my house with my hands almost all the way over my eyes. I also bought a cane and learned how to (sort of) use it.

And I guess I just used my imagination.  Without glasses or contacts, I am legally blind.  My “best” eye is 20/275.  I can see that people have a flesh-colored smudge for a face, but I can’t see expressions.

Kody: While Cheyenne’s guide dog isn’t around to be much help in the story, we do get a lot of insight into her life with a guide dog. As a guide dog owner, I found these little tidbits to be really, really true and honest – at least to my experience. Did you do any specific research on this, despite Cheyenne being without her dog for most of the story?

April: The more I researched, the more I learned how important guide dogs are to many blind people, so I decided to give her one.  I figured Cheyenne would think about him a lot even if he wasn’t there. I spent a day at Guide Dogs for the Blind in Boring, Oregon. They even put a blindfold on me and brought out a dog for me to harness and walk. It’s very hard to do that if you have never seen the dog or the harness, but I finally managed. Then I tried to pat the dog on the head – and realized I had harnessed the tail end. The head trainer, Malinda Carlson, reviewed the manuscript for me, answered lots of questions, and helped me figure out whether an untrained dog might be able to briefly be a guide dog. I actually had to do a lot of research into what it’s like to own a dog, because I have never lived with one, and am somewhat afraid of them (got bitten when I was five).


Thanks so much, April!

In addition to answering a few of our questions, April was kind enough to donate a signed copy of Girl, Stolen to giveaway to one of our awesome readers! To enter, leave a comment here and/or reblog our Tumblr post.  Yes, doing both increases your chances of winning. In one week, we’ll select a single winner from one of these locations to win the book. This giveaway is limited to US addresses.

The giveaway over, and the winner has been notified. Thanks to everyone who entered!

Discussion #6: If We Could Tell an Author One Thing …

For our first anniversary, we’re bringing back the discussion post format! In these posts, we ask our contributors for their thoughts on various topics. We’ll post one every Friday this month. Today, we asked:

If you could tell an author writing a character with your disability one thing–besides “do your research”–what would it be? For example: a piece of advice, a warning about a common inaccuracy or iffy plotline, etc.

Our contributors share the following:


Kody Keplinger:
I’d remind authors that blindness, like all things, is on a spectrum. Most characters depicted in fiction are completely blind – they see nothing. In reality, only 10% or so of blind individuals are completely blind. The other 90% fall on a spectrum. Depending on the disorder or trauma that caused the blindness, a person could see in a thousand different ways. So many people don’t realize this, though. I actually get accused of faking my blindness because I can read large print text on my phone. I often wonder if this is because the media only portrays complete blindness as “blind” and rarely acknowledges the other 90% who have some vision.


s.e. smith:
Something that’s really been bugging me a great deal lately is media and pop culture depictions of OCD. OCD is not about being ‘obsessively’ neat or fussy about personal appearance — it’s a very complex mental health condition that has serious ramifications and manifests totally differently in different people. I’m especially tired of the stereotype that people with OCD are super-clean (although I do keep a very tidy house).

It might help to break down what OCD is actually about — obsessive thoughts, and compulsive actions. OCD involves intrusive, traumatic, aggressive thoughts that don’t go away, and compulsive rituals that people use to manage them. Maybe for some people that’s checking the stove four times before leaving the house, or having to double and triple-check locks. But it can also involve hair pulling, or needing to reorder jars on the shelf, or being completely disrupted by environmental change. Avoid cheap shortcuts when depicting OCD, and make it a condition with actual consequences instead of the figure of fun or something quirky.


Corinne Duyvis:
I’ve spoken a lot about autism, but less so about AD(H)D. I’d love to see more accurate and varied portrayals: It’s not all about distractibility, impulsiveness and hyperactivity! Those traits may be common, but I’d like to see, for example, characters struggling with making decisions, or experiencing hyperfocus.


Lyn Miller-Lachmann:
I’d ask authors to avoid arranging scenes and entire plot lines around characters with Asperger’s who take everything literally, particularly if the author intends to use it for laughs. It feels as if you’re laughing at us and not with us. Besides, most tweens and teens with Asperger’s have learned what an idiom is and know the difference between literal and figurative meanings, even if the literal meaning conjures amusing images in our minds.


Marieke Nijkamp:
I’d love to see more spectrums, especially when it comes to daily life with a disability. For example, when it comes to my arthritis, it means I am in pain almost every day. It does not mean I’m in the exact same amount of pain every day, that the pain itself is exactly the same, or even that the pain is the worst of it.

Some days, I can barely hold a hairbrush. Other days, it’s more like an annoying ache in my bones. Some days, my painkillers are heavenly (and anyone who thinks it’s acceptable to come talk to me about how medication is poison can get out and check their privilege), other days I barely notice them. Some days, I can ignore the pain, and other days, it chips away at the very core of me because it’s so very invasive. It’s a spectrum, and no day is quite like the other.


Kayla Whaley:
In terms of my own disability (Spinal Muscular Atrophy), I’d like authors to consider the physicality of it beyond not being able to walk. Realize that neuromuscular diseases don’t affect ONLY one’s legs. My entire body is weaker than most and that affects my physicality–the way I look and move. I tend to sit leaning forward and to the right because it takes less strength for me than sitting upright. If I’m reaching for something on a table, I have to use my free arm to brace the other. When I’m moving my body (gesturing while talking, adjusting my sitting position, dancing, anything), I don’t tend to be the most graceful because it requires a decent amount of effort to do so.

I think because the only wheelchair-using characters we’re used to seeing are athletic people who have been paralyzed (not that those portrayals are necessarily accurate either), it’s easy to fall into the trap of focusing on the walking issue while ignoring the rest. (And keep in mind that this is a very, very incomplete list and focuses purely on visible physical differences between me and those who are able-bodied.)


Cece Bell:
I agree with what several of the other contributors have said: disabilities are on a spectrum. That is definitely true with deafness—there’s such a big range, and so many different ways that each deaf individual might deal with their own level of deafness. I rarely see deaf people in fiction (probably because I don’t read nearly enough), but I often see them in movies or on TV as minor characters who exist for no other reason than for comic relief. You know, the stock deaf person who shouts all the time because he can’t hear what he’s saying. That joke’s so old even my dog won’t eat it. I guess this advice is more for movie directors than authors, but there you go!


What about you, commenters? Any advice to offer?

Kody Keplinger: The Beautiful Tragedy

Kody KeplingerKody 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, The Swift Boys & Me, was released by Scholastic on May 27. Currently, Kody lives in New York City with her guide dog, a very upbeat German Shepherd named Corey. When she isn’t writing, Kody teaches writing workshops and spends a lot of time eating Thai food, marathoning Joss Whedon’s TV shows, and vlogging. You can find her on TwitterYouTube, and her website.


Recently I was talking to a guy online when I mentioned being legally blind. He replied in what he thought was kind – something along the lines of, “I’m just trying to wrap my head around the idea that someone with such beautiful eyes can’t see out of them. Seems like such a waste.”

UGH.

To be fair to this gentleman, I think he thought he was being flirtatious or sweet or something. But, in reality, the “beautiful tragedy” is a complex and frustrating trope in disability culture. The guy’s comment is not the first I’ve heard, and I’m not the first person it’s been directed to.

So what’s so wrong with this trope? Why is it wrong to emphasize the supposed irony of a person with beautiful eyes who can’t see or a good-looking person “confined to a wheelchair” (another horrible, tragedy evoking phrase) or the like? First off, because it seriously implies that disabilities affecting those without beauty are a lesser issue.

The person I was corresponding with implied that it was a “waste” that I couldn’t see when I, according to him, have pretty eyes. So would blindness then be better suited to someone with less appealing eyes? Are unattractive people somehow more deserving of disabilities than attractive people?

I’ve also seen this applied to mental illness in fiction and film – someone who is incredibly smart or a brilliant artist struggles with bipolar disorder, schizophrenia, manic depression – you name it – and we’re lead to believe this is somehow even more of a tragedy because the person is otherwise brilliant. As if it would be better if less intelligent or talented people had to deal with mental illness.

Obviously, this is a horrible thing to imply on many levels. A beautiful person’s disability is in no way better or worse than any other person’s disability.

However, that brings me to the second half of the trope – the tragedy.

In many ways, I am less bothered by the implications about beauty that this trope demonstrates and more frustrated with the implied tragedy of disability. By proposing that it is a “waste” for me to have pretty eyes and also be blind, it is suggesting that I am some tragic figure. That the beauty I have is diminished by this awful disability. That I am somehow broken. I don’t like the idea that any part of me is a “waste.”

By suggesting that it is a tragedy for a genius (either intellectual or creative) to have a mental illness, it lessens the work of that person. It turns them into this sad, ironic figure for society to marvel at. When, in reality, their mental illness is no different from that of the Average Joe who has a mental illness. Is Average Joe considered a tragedy on this scale?

I am no one’s tragedy. I can be smart or beautiful or talented and still deal with my disability, and it doesn’t compromise any of those things.

As writers, it’s important that we avoid the beautiful tragedy trope when creating disabled characters. While it might serve to heighten tension or add layers to a character, it ultimately sends really damaging messages about beauty or talent and disability. It implies that average people are more deserving of disabilities while attractive or talented people are forced to be seen as tragic figures. Neither of these things are true.

I never wrote back to that guy, but if I had, I would have told him thank you for saying my eyes are pretty, but I’m perfectly fine with how much (or little, really) I can see out of them. I am not broken. I am not tragic. And nothing about my situation is “a waste.”


The Swift Boys and Me, by Kody KeplingerNola Sutton has been best friends and neighbors with the Swift boys for practically her whole life. There’s the youngest, Kevin, who never stops talking; the oldest, Brian, who’s always kind and calm; and then there’s Canaan, the ringleader and Nola’s best-best friend. Nola can’t imagine her life without the Swift boys — they’ll always be like this, always be friends.

But then everything changes overnight.

When the Swifts’ daddy leaves without even saying good-bye, it completely destroys the boys, and all Nola can do is watch. Kevin stops talking and Brian is never around. Even Canaan is drifting away from Nola — hanging out with the neighborhood bullies instead of her.

Nola just wants things to go back to the way they were — the way they’ve always been. She tries to pull the boys back to her, only the harder she pulls, the further away they seem. But it’s not just the Swifts whose family is changing, so is Nola’s, and she needs her best friends now more than ever. Can Nola and the Swift boys survive this summer with their friendships intact, or has everything fallen apart for good?

Nola’s struggle to save her friends, her unwavering hope, and her belief in the power of friendship make Kody Keplinger’s middle-grade debut a poignant story of loss and redemption.

Caitlin Mongillo: Fitting in and Standing Out

Caitlin MongilloCaitlin Mongillo received her B.A. in English and Secondary Education in May, 2010. In 2013, she completed her MSW from Stony Brook University. Caitlin recently relocated from Long Island, NY, to her new home in Southwestern Connecticut. Currently, Caitlin is the coordinator of an employment center, which helps people with disabilities find, and sustain, work. She also works part time as the social media manager and newsletter writer for a non profit organization which helps people with print disabilities. In her free time, Caitlin enjoys volunteering, reading, watching movies, hanging out with her family, being snarky and drinking copious amounts of green tea. She shares her home with her fabulous husband, a mischievous beagle mix named Sam, and her lovable yellow lab guide dog, Laser.


I can feel their eyes on me. They’re all staring, judging. My blue striped tee is too big and my jean shorts are too long. They don’t like that I don’t wear make up and they think my ponytail is childish. I don’t know how I let myself leave the house this morning; after all, it’s my first day of high school. First impressions are so important, and I’m failing, miserably.

My bus got in late, and I could not find the class, so now I’m late to homeroom. I like to get to class early so I can find the closest seat to the door. But, as I reach my hands out, I feel back after back after back. I do not encounter an empty chair beneath my groping fingers, only cotton and the slick sensation of sweating skin. I am panicked, and desperately want to cry. Finally, the home room teacher interrupts his monologue about locker combinations long enough to tell me there’s a seat in the front I can take. I extend my white cane in front of me and navigate the labyrinth of outstretched feet and backpack straps. The room falls silent as everyone, including the teacher, stares at me.

I traverse a row, and get to the front desk. I place my hand on the desk and feel a pad of paper. I move to my right and graze a Styrofoam coffee cup with my middle finger. Nobody helps me, and I feel tears pricking at my eye lids. All I want to do is sit down. I catch my foot in a desk leg and almost fall. This finally spurs the homeroom teacher into action, and he taps a desk a few rows over from where I stand.

****

Though the incident occurred eleven years ago, it has remained a vivid memory. If it had happened now, I would have handled things differently. But I was not the person then that I am today.

When I walked through the halls of my high school, I tried to keep my cane as close to my body as I could. Though the way a cane is useful to a person who is blind is by tapping it, in an arc, in front of the body, I never did this. Though my school teemed with students (my graduating class was just over seven hundred and fifty), this was not the real reason for my reluctance to follow proper mobility protocol. I didn’t want to be seen, and I did not want to be heard tapping my way merrily to math class.

Almost on a weekly basis in school, I’d hear the whispered or shouted name I dreaded: Blind girl. Everyone else, it felt like, got the luxury of being talked about behind their back. I was never afforded such courtesies. I was always on display, always a subject of conversation, as students frantically dodged around my long cane or scurried away from the swing of my massive backpack, crammed to bursting with heavy Braille books. “Blind girl” became my name from all those kids who didn’t sit beside me in class. “Blind girl” also became like my shadow, following me where ever I went. I didn’t like this “blind girl” and I did not want to be her.

I resented the title. I had a slight bit of vision I could use to detect colors and land marks. When I explained it to people, I would always, adamantly, title myself “visually impaired”. I didn’t have anywhere near enough sight to be considered a person with normal vision, but I also staunchly denied just how little I could see. I refused to accept “blind” as a term, mostly because of how often I heard it in a derisive manner as I walked the halls. I was clustered in with the boy in the rainbow kilt or the girl with the line of metal rings in her lip; just another freak, who’s only distinguishing feature was what was so clearly “wrong” with them.

I have learned that, overall, I was quite lucky in my high school career. Some of my blind peers were mercilessly bullied in school; getting pushed down stairs, having their homework ripped up, and enduring physical assaults. This never happened to me. A few times, if I accidentally hit a passerby with my cane in the hall, I would hear them tell their friends loudly that they wished they could hit me with my own “stick”. Another time, a friend told me he’d seen a group of boys pretend to pull my hair as I walked down the stairs in front of them. But, mainly, it was the constant scrutiny I felt like I was under which drove me crazy. I was visible as I stumbled about. The fact that I carried with me a four foot long pole was not lost on anyone. In class, I was able to fold up my cane and stow it on the ground. The clanging of my ten pound Braille machine in math class or the soft clatter of my note takers keys was forgotten by my classmates after a while; it was just what I did. The people in my classes got used to my blindness, mostly because it became secondary to my personality.

I was one of those obnoxious people who always raised her hand in class. Most of the time, I knew the answers to the questions being asked. I volunteered to read aloud in English and I relished the opportunity for extra credit debate performances in History. If there was a classroom activity taking place, I was involved. I tried to excel academically, because I felt like it would make my blindness fade more into the background. I wanted, more than anything, for people to equate my name with friendliness, creativity, and intelligence, rather than first thinking of my ocular ineptitude. So, in the classroom, I tried to stand out, while in the jungles of passing periods I tried like hell to blend in.

The classroom was my safe haven. It was where I could shine and show everyone, especially myself, that there was more to me than strangers expected. The only times I felt conspicuous were when the elephant called Blindness stomped his way into the room. I wish I could have known, in advance, the days we’d discuss Helen Keller and her struggles in History so I could figure out how to fake the flu. It also may have made my life easier to be absent for the entire Oedipus Rex unit in ninth grade and the many discussions we had about the blindness motif so commonly used in literature. The day my Honors English teacher asked me if I felt like I had more “vision” because I had no sight was the only day I think I have wondered if humiliation was a reasonable excuse for jumping out a window.

The fact of the matter is that I was not able to understand how people could not look at me and think that my blindness made me a freak. Because I couldn’t quite accept the fact that it didn’t. In the halls at school, people doubtless stopped and stared. I know for a fact they even commented on the fact I couldn’t see. But, looking back, I was really just a self-obsessed teenager in a sea of many other self-obsessed teenagers. Most of them probably noticed my shiny metal Braille machine or my fluorescent red-tipped cane, but these things really didn’t impact their lives. They may have been curious or uncertain how to approach me, but probably very few of them thought much more about me and my little life. Me being blind was much more of an issue to me than it ever was to any of them.

***

My guide dog and I glide down the hallway. As we pass by my colleague’s cubicles, they call out soft greetings to us. I respond to them, and concentrate on the route we’re taking. The staccato rhythm of his toenails on the linoleum accompanied by the chorus of his collar tags jingling is the perfect soundtrack to my contemplations of distance traveled and steps remaining in our journey. I direct my dog right at the reception desk, left at the end of the hall, and then straight into the conference room. As I open the door, I feel relieved that we have made it on time.

I can feel them staring. I know their eyes are taking me in. They might be admiring my charcoal blazer or the new black dress that skims my knees. They might see the shadow of coral lining my lips, or covet the sleek Mac beneath my arm. They might even notice how my eyes don’t really focus on anything in particular. My husband told me before I left for work that I looked beautiful, and I believe him.

“Excuse me,” I say. “Could anyone direct me to an empty seat?” From across the room, a woman calls to me. My guide dog skirts the table and brings me to the chair. The woman and I chat softly together about work, the weather, the difficulty she encountered finding the office building.

“I’m just wondering,” she says. “I know some people prefer to be called sight challenged or visually impaired. What do you like?”

“Blind is fine. It’s the most accurate description of my sight,” I say with a small smile. “But mostly I just like to be called Caitlin.”

Kody Keplinger: But Sometimes, It Does Suck

Kody KeplingerKody 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 vlogging. You can find her on TwitterYouTube, and her website.


I’m nervous about writing this post. I’ve been very personal on the internet before, even about my disability, but I’ve always tried to present a narrative of positivity of sorts. Sure, I’ve talked about ableism and other unpleasantness, but in regards to me and my abilities and my experiences, I’ve tried to veer on the side of happiness and empowerment. Presenting anything else is hard for me, because there are so many ways for my words to misread or misinterpreted or misunderstood. It calls to mind a line from the song “Breathe (2AM)” by Anna Nalick:

And I feel like I’m naked in front of the crowd/’Cause these words are my diary, screaming out loud/And I know that you’ll use them however you want to.

But the goal of this website is to be a resource for writers and readers, to educate people on the realities of disability, to help people create and identify well-written disabled characters. And because of that, I know I need to be fully honest.

I don’t speak for everyone and would never try, so I want to start by saying that this is MY experience and MY reality and MY observation, not everyone’s. So, I’m going to talk specifically about blindness here. With that said . . .

When I read about blind characters or see them on TV or in movies, they always go too far in either one direction or the other. The characters are either completely ruled by their disability – physically and emotionally – constantly breaking down about the struggles they face, fearing the outside world, struggling to adapt, etc. Or, they don’t seem fazed at all. In fact, you might never know they were blind because they are independent and fearless and nothing – NOTHING – holds them back.

One might assume that I’m okay with the latter portrayal, but the truth is, I hate both, because neither is honest.

If you’ve read much of this blog, you’ll know why the first option – the character completely ruled by their disability – is a bad portrayal. Presenting disabled characters as weak or fragile is problematic and unrealistic when the vast majority of us live full, happy lives. But the second option, the disabled person who isn’t even fazed, that’s not honest either. In fact, those representations almost fit into the superhero trope to me – they feel like overcompensation on the part of the writer, who doesn’t want to present a weak character, so instead they erase all signs of the character’s disability other than the bare bones – this case, there character can’t see, but that’s it. That’s the only sign of their disability.

The reality, at least for me, has always been somewhere in the middle.

Most days, I don’t think about the fact that I’m legally blind. I mean, I do  – I have a guide dog, I use accessibility functions on my computer, etc – but these things have become such a part of my life, that most of the time, I don’t think about why I’m using them. I don’t think about the fact that not everyone does. In fact, most of the time, when I hand my roommate my laptop to show her something, she has to remind me to zoom out because, well, she isn’t blind. I forget. Because this is just my life. This is normal.

Most days, I don’t really think about it.

But there are other days, too, when I can’t help thinking about it, and sometimes, it sucks.

When my friends talk about going to clubs or out dancing, I always have to bow out. I’d love go dancing with them or to go to a club like other 22-year-olds, but because of my vision, I don’t think I could enjoy it. Clubs are too dark for me to navigate, and too loud for me to use my hearing the way I’m used to. (Note: blind people don’t have “better” hearing, but we do use what hearing we have more efficiently.) If I went to a club, I’d have to leave my guide dog at home (too much stress for her), and I’d be stuck clinging to one of my friends. It wouldn’t be impossible, just not worth it.

Thinking about that sucks.

Before I got my guide dog, Corey, clinging was something I was very paranoid about. Even with a cane, sometimes I needed to hold onto someone’s arm for help. I was always worried I was getting annoying or being an inconvenience. I always thought about how much easier it would be on them – not me, but THEM – if I could see. With my best friends, this paranoia wasn’t a big factor. But with new people – especially with boys I might potentially have a crush on – it was a source of anxiety. And sometimes, when Corey can’t help, it still is.

Thinking about that sucks.

I was born legally blind. My condition is congenital, so I don’t know what it’s like to see well. I don’t have the same feeling of loss that some people who’ve lost their sight later in life do. But I’ve had to stop Googling the name of my condition, Leber’s Congenital Amaurosis. Why? Well, LCA, as it’s called, has many variants on many different genes, several of which (like mine) haven’t yet been discovered. A couple of those variants, though, have shown some success with gene therapy. Some people have had their vision improved. Most of the time – like 99% of the time – I don’t think or care about a cure, because I’m okay with my life as it is. But when I Google my own condition and all I see are pages of articles about breakthroughs and cures! And none of them apply to me. Whether I care about a cure or not, that gets to me.

Thinking about that sucks.

Most days, I don’t think about my disability at all. But every now and then, I do.

Some people might misread this post. They might want to post comments like “Stay strong!” or “You’re so brave!”  If you’ve read much of this blog or any of my other posts, you know that’s the last thing I want. I’m not strong or brave or inspiring – I’m a person living my life the way that’s normal to me. All I’m saying is that there are emotional implications that come along with disability, and while portraying a character whose life is controlled by their disability is problematic, portraying a character who faces no emotional implications of their disability is problematic, too.

So, when writing a disabled character, think about this. You can still have an independent, capable character while acknowledging the emotional implications of that disability as well.

I’m scared to post this. I’m scared of how it’ll be read. I’m scared that the negative feeling I’ve talked about will get more focus than all of the postive things I’ve talked about in the past. I’m scared that you’ll see these things as weaknesses.

But you all deserve my honesty, and hopefully it’ll help someone who is writing a blind character to think about those other, deeper elements. That’s my goal – not to elicit sympathy or consolation. I don’t need that. I like my life, I’m happy with it, and these occasional, sucky times don’t change that at all.

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

JB RedmondJB 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.


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.


Cover for OATHBREAKERAn 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 KeplingerKody 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.


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!

Recommended Reading List

Throughout the past month, we’ve discussed a lot of the ways YA/MG lit can get disabilities wrong. It’s important to catalog and analyze all the many different tropes, to bring up specific examples of inaccurate and offensive portrayals, and to educate writers about the truth of living with various disabilities.

However, we also want to celebrate those books and authors that get it right. We asked our contributors to tell us which kidlit books they’ve read that handle disability well. So here’s the “recommended reading” list our contributors came up with!

THE FAULT IN OUR STARS (John Green) – Blindness

“Some will disagree with me on this, but I was pleased with the portrayal of Isaac. His experience is different from mine in that he goes blind as a teen, but I thought his reactions and frustrations were very real (even if his video games were not). Isaac isn’t as independent as I would like blind characters to be, but he’s still transitioning and he’s learning at a realistic pace. Also, he is a fully fledged character outside of his disability – he isn’t defined by being blind, even if he might worry that he is. So despite some reservations, I’d recommend this.”

CRAZY (Amy Reed) – Bipolar

“I had some issues with the book but virtually none were due to Amy’s treatment of bipolar disorder. She nails it (as a person with bipolar herself–openly–this isn’t too surprising). It’s complex and ugly and life-swallowing. The letter format shows it from both her perspective and her love interest’s. Really good.”

WILD AWAKE (Hilary T. Smith) – Unspecified, but likely Bipolar

“As Kiri Byrd slowly descends into a manic episode, we have an opportunity to see mental health conditions depicted from the point of view of someone who has them, rather than friends and family, and Smith also brilliantly captures the bright, sharp edges of mania. I’d note that Smith also has a mental health condition (she’s written about it, I don’t know if she’s specified what it is).”

COLIN FISCHER (Ashley Edward Miller and Zack Stentz) – Autism

Colin Fischer is a murder mystery that only Colin and the school bully can solve, but Colin has problems of his own when it comes to reading people’s emotions effectively and navigating the world. Colin Fischer explores some of the experiences of autism authentically (ymmv when it comes to autism depictions and authenticity, of course), and again, features a disabled character as primary narrator instead of object. Zack (full disclosure–Zack is a friend and colleague) is on the autism spectrum disorder, as are his children, and he’s discussed this openly.”

MARCELO IN THE REAL WORLD (Francisco X. Stork) – Autism

Marcelo in the Real World explores coming of age for a Latino teen who serves as the primary narrator in a novel about being forced into a series of social and ethical situations that make him extremely comfortable. One of the things I love about this novel is that his struggles with ethics and community are more closely linked to coming of age and maturing as a human than they are with his disability–while Marcelo sometimes struggles to read people in complex situations because he is autistic, this isn’t a story All About Autism.”

KNOWING JOSEPH (Judith Mammay) – Autism, ADHD

“Judith was my crit partner at one time, so I’ve had the honor of reading all her books which center on autism and AD/HD. I think her portrayals are very realistic, both for the person who has the disorders as well as the family members who deal with them and their valid feelings on the matter. This book is written simply, so it has broad appeal – from independent reader to classroom read for teachers to help fellow students gain compassion and understanding.”

THE BOYFRIEND LIST (E. Lockhart) – Anxiety, Panic attacks

“So much to love here: Ruby’s frustration with a lack of diagnosis and her ambivalent feelings about being put on meds, her family’s reaction to her panic attacks, and how they affect her life (they’re the catalyst for why she goes to therapy and starts thinking about the boys in her life) without defining it. They reappear throughout the series. No magic cures here.”

WILL GRAYSON, WILL GRAYSON (John Green and David Levithan) – Depression

“This. Just, this: I had no doubt that Tiny thought he got depressed, but that was probably because he had nothing to compare it to. Still, what could I say? that I didn’t just feel depressed – instead, it was like the depression was the core of me, of every part of me, from my mind to my bones? That if he got blue, I got black? That I hated those pills so much because I knew how much I relied on them to live?

No, I couldn’t say any of this because when it all comes down to it, nobody wants to hear it. No matter how much they like you or love you, they don’t want to hear it.'”

“Seconding this recommendation very strongly. The way Will Grayson talks about experiences of depression is both painful to read because it feels so true, and fantastically expressive.”

LOVELY, DARK, AND DEEP (Amy McNamara) – Depression

“Wren Wells wants to hide herself away in the wake of a horrific car accident, and she’s almost dragged under by the strength of her own depression. Lovely, Dark and Deep explores not just the experience of situational depression, but the role of therapy and other tools for managing depression without shame or judgement. This is also a fantastically beautifully-written and intense novel, so there’s that too.”