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!

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.

Big Changes to DiKL

Hello everyone! Hope you all are having a lovely Friday thus far.

Today Corinne, Kayla, and I are announcing some news. Disability in Kidlit will be undergoing some changes, and we wanted to round them up and share them with you today.

Monthly Posts

Instead of posting once a week, Disability in Kidlit is altering its schedule. From now on, we’ll be posting new content on the first Friday of every month.  As writers, Corinne, Kayla, and I have schedules which fluctuate with each new project, and right now, we all need to be focusing on our writing. We’re still very devoted to DiKL, however, and we want to keep bringing you the best content we possibly can without us or our contributors feeling rushed. However . . .

We’re Still Seeking Submissions

So please don’t let this change stop you from submitting your post ideas if you’d like to contribute. In fact, we still actively need and welcome submissions! Remember, we’re looking from posts from people who identify as disabled, on topics that relate to their disability and children’s lit. Check out our submissions page for more detail. We’re particularly looking for more reviews. In addition, a couple of weeks ago we updated the page detailing what we’re looking for in terms of articles. Take a look, if you haven’t yet!

Tumblr

We will still be updating our Tumblr daily, so please check that out if you haven’t already. We post and reblog some great content on the subject of disability there.

And we have one piece of very exciting news . . .

Twitter Chat!

Corinne, Kayla, and I have been talking for a while now about running a Twitter chat to discuss disability and its relation to children’s literature. And we’ve finally nailed down a date! Please join us on Saturday, February 22nd at 3pm EST/noon PST using the hashtag #DiKLChat. We’ll post a reminder for this closer to time. Meanwhile, follow the Disability in Kidlit Twitter account for any updates.

Have a lovely weekend, everyone! We’ll see you on the first Friday of the month!

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.

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!

Kody Keplinger: Disability, Individuality, and Differences of Opinion

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.


I was going to write another post today, a review, but I had something else on my mind that I just couldn’t shake. Something I see everywhere I look. So, here I am, doing a post I never planned.

I want to talk about differences of opinion.

I think almost all minority groups – be them based on ability, race, ethnicity, or otherwise – are plagued with Spokesperson Syndrome, or the assumption that one person from the community has the ability to speak for them all. So often I hear people make statements like “Well, I know someone who is [INSERT MINORITY GROUP] and they thought [INSERT MOVIE/BOOK/TV SHOW] was fine, so it must be true.”

This bugs the crap out of me.

Since this is a disability focused blog, I will focus on disability. And since I am blind, I will particularly focus on that community.

A mistake I see a lot of writers who write about disability make is asking only one person for help. I’ve heard so many people say things like, “I have a cousin who is blind, and she read the book and said it was good at portraying blindness.” And while that cousin may really believe that, it doesn’t mean the next blind person or the next will agree. Obviously, you can’t please everyone, but getting multiple viewpoints on one disability is so important when you write. Because every single person is going to have a different take or opinion on their own disability.

Let me be more specific.

In the blindness community, you have a lot of different perspectives – you have those who are legally blind versus those who are completely blind, cane users versus non-cane users versus guide dog users, Braille readers versus non-Braille readers, and then the break down of all the different disorders and causes of blindness, and there are tons. Each of these people is going to have a different opinion and perspective on how they see their disability and their community. You can ask two people what their opinions on Braille are, and you’ll get two entirely different perspectives.

But let’s say you have two blind people, both with the same cause of blindness, the same vision, both cane-users and Braille readers – even then they are likely going to have two very different takes on certain issues.

Within the blindness community, there are several advocacy groups (forgive me for focusing on the U.S. here). The biggest ones are the National Federation for the Blind (NFB) and the American Council of the Blind (ACB).  Both of these groups have a lot of members in the community. Both of these groups advocate for blind people. But they are very different with a variety of different philosophies. They disagree often, and sometimes there’s tension between members of these organizations.  And then you also have smaller organizations. And, of course, there are also people who don’t affiliate with either.

This isn’t confined to the blindness community – nearly all disability communities experience this to some degree. Just because people have the same disability doesn’t mean their opinions are going to be the same.

Which is why I get frustrated by people who make the argument I mentioned above. I hate the idea that if one person from a community is okay with something, everyone else in the community must be. I hate the idea of being a Spokesperson.  I think about it a lot. I like blogging about my disability and about blindness, but I’m always worried people will assume my opinions are that of All Blind People.  To some that might seem like a silly concern, but it’s more likely than you think.

But how does this relate to KidLit, you might ask.

As I said before, I frequently hear writers talk about how their cousin, their friend, their Twitter follower, gave them the “okay” on a disabled character.  As if that person is speaking for the whole community.  Now obviously, a writer can’t send their manuscript to every blind or deaf or autistic person on the planet, but assuming one person from that community can speak for them all is kind of upsetting to me. I have lots of blind friends. Some aren’t bothered at all by the tropes they see in books or in movies and might “okay” something I found truly offensive.

No one can speak for the whole community.  It’s just not possible.

Which is why I think writers should reach out to multiple people, to multiple organizations, etc. You can’t please everyone, but you can try to understand as many viewpoints and opinions and perspectives as possible. And, of course, you can’t encompass all of these opinions and perspectives, but understanding them will go a long way in making your character more accurate and nuanced.

But mainly, understand that we are all individuals within these communities. No two blind people are alike. What is offensive to one may not be to another. And only getting one side of things isn’t enough research to truly create a well-balanced, accurate depiction of a disability.

Kody Keplinger: Being A Blind Teenager

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.


I was born blind.

Now, that comes with a slight clarification. Blindness is very rarely total darkness. Wikipedia explains it pretty well:

In North America and most of Europe, legal blindness is defined as visual acuity (vision) of 20/200 (6/60) or less in the better eye with best correction possible. This means that a legally blind individual would have to stand 20 feet (6.1 m) from an object to see it—with corrective lenses—with the same degree of clarity as a normally sighted person could from 200 feet (61 m). In many areas, people with average acuity who nonetheless have a visual field of less than 20 degrees (the norm being 180 degrees) are also classified as being legally blind. Approximately ten percent of those deemed legally blind, by any measure, have no vision. The rest have some vision, from light perception alone to relatively good acuity.

I fall into the 90%. I have a condition called Leber’s Congenital Amaurosis, or LCA for short. LCA is pretty rare, and it’s different for everyone who has it. In my case, I have a visual acuity of 20/400, my depth perception is pretty bad, and I have tunnel vision. Most importantly, though, I have light perception issues – so while my remaining vision is usable in well lit spaces, I can’t see much of anything in dim or low lighting.

But I’m not here to give a lesson on LCA. I want to talk about what it was really like being a blind adolescent. As I said, I was born blind, so I got to go through all of middle school and high school with this disability. Unfortunately, I’ve yet to read a book or see a show that depicts anything remotely like what I experienced. So, this is my story.

I was mainstreamed – which basically means I wasn’t sent to a special school. I went to a public (though small) middle school and high school. I knew everyone in my grade and most people in every other grade. I’d gone to elementary school with most of them. So everyone knew I was blind, and for most people, it was old news.

I couldn’t see the whiteboard or read from normal sized textbooks. In middle school, this could sometimes be embarrassing. Most of the time, I read from large-print text books. These books were broken into volumes – usually three or four – and they had the same covers as the regular book, but they were HUGE. Like twice as tall and wide as the regular book. And all the page numbers were the same.  They didn’t fit in my locker, so I had to have them stored in a teacher’s class room. And getting them home was a pain in the ass, as you can imagine. Everyone was sort of fascinated by them, though I’d used them for years at that point, so it wasn’t that big of a deal.

I hated using those books. Mostly because visually reading them got really tiring after a while. I much preferred to use my Aladin, a type of CCTV. Basically, it was a large monitor above a camera. I would put things under the camera and see them, much larger, on the monitor. The best part of this was that I could adjust the colors. I can see white text on a black background MUCH better than black text on a white background. To this day, I struggle to use a computer or a CCTV without that contrast change. Back then, my Aladin was on a cart that I wheeled from class to class. The Aladin was the only real cause of any bullying.

There were a few kids who liked to torment me by jumping in front of the cart while I wheeled it around. One boy jumped in front of it once, I hit him (because, duh, I’m blind) and he went on and on telling anyone who would listen that I had hit him on purpose. No one believed him, but his friends jumped in and began tormenting me, too. It only went on for a day or two, but it did make me really upset at the time. Other than that, my vision was never a big deal among me or my peers.

In high school, I used my CCTV, but I didn’t wheel it around as much. I used a lot of enlarged papers – I had to run them to the office and a secretary would use the copy machine to enlarge them onto bigger sheets for me. I kept my CCTV in the library and would move it if I really needed to, but a lot of times, if we were just reading, my teachers would let me go to the library to use the machine so I didn’t have to push it around. I also used large print calculators, screen magnification on computers, and a few other pieces of assistive tech. I did not, however, read any Braille.

I also didn’t use a cane, but I’ll get to that in a minute.

I want to note that, throughout all of this, we struggled – my mom and me. We struggled to get the school to get me the tech I needed. We pushed and pushed. We didn’t know all of our rights at the time. Eventually, the school brought in a consultant who helped to tell them what I needed. She also told me about a program called “Short Course” at the Kentucky School for the Blind. I’d heard of this at a summer camp with other blind kids, but I wasn’t sure how helpful it would be. I decided to do it, though. And that’s where I learned how to use a cane – where I learned I needed a cane at all – and saw all the technology that was out there for visually impaired and blind people.

I won’t talk too much about the School for the Blind. That’s a post for another time, full of lots of drama and teen angst. I had positive and negative experiences there. But the important thing I got from that experience was that I was a) in need of mobility training and b) very, very glad to be mainstreamed.

Why was I glad to be mainstreamed? Honestly, I think it helped me to be a more capable, independent person. I had to work harder in a mainstream setting. I had to fight for what I needed. That was good preparation for the real world, which isn’t set up for a blind person. I have to fight for what I need every day. Whereas, at a specialized school, the material was ready for me, ready to help. While that’s nice in theory, it gives no real practice for reality. So even though it was sometimes tougher, I’m glad I was mainstreamed. I think it was best for me, though it might not be for everyone.

My senior year, the school finally got me a mobility teacher, who helped me to get even better at using a cane. I’d started using one at the School for the Blind, my sophomore year, and it had been so freeing. I was a more confident traveler with a cane, not worrying constantly about running into things. It was great – and my friends loved to use my cane as their make-shift Lightsaber (I was friends with nerds). I liked the cane mostly. The only thing I hated was that it made it much more obvious to everyone that I was blind. Frankly, I had liked “passing.” People who knew me knew, people who just met me didn’t. I’ll be honest – there’s a huge difference in how people treat “Kody” as opposed to “the blind girl.” I had a rule in high school, even, that I never told anyone new that I was blind until we were already friends. By that point, they knew I was an independent person. Where as people who already knew before really knowing me were always, even months later, focusing on my disability and not on me.

Other than my mobility lessons and assistive tech (I also started using audiobooks and text-to-speech books during my late high school years) my disability didn’t play a big role in my life. Most people didn’t talk about it. I didn’t talk about it. It didn’t really matter.

Except once.

I was a fan of anime when I was in high school. A few friends and I even formed an anime club. We got together on the weekends to watch anime together and just have fun.  This went well at first. But as anyone who is into anime knows, a lot of hardcore fans prefer to watch with the original Japanese dub while reading subtitles. That’s not something I have the ability to do. I read too slowly and the experience is miserable, so I prefer an English dub. This was a constant fight with my friends, who many times refused to watch English versions of the shows we were watching because it “wasn’t as good.” This completely excluded me, and for the first time in many years, I felt really, truly disabled.

I cried about that more than once. And, in the end, I lost many of my friends from that club. Not just because of that event, but because it was hard for me to see them the same way after those fights.

That’s the thing about disability, I think. You’re a normal person, you experience normal things, and then, every once in a while, you hit that wall. That reminder that you aren’t quite like the majority of your peers. Most of the time it’s small things – like watching anime with your friends – but it can still hurt like hell. It did for me. Even if 99% my vision didn’t affect me, that other 1% was awful.

But I still had the normal high school experience. I went out with my friends, I was in clubs, I worked on my senior yearbook – I was like everyone else. I just didn’t see things the way my friends did. Sometimes that sucked. Sometimes it just gave me a different perspective. But it never defined who I was as a person.

Before I wrap up here, I want to note that none of the typical “blind person” cliches fit me. I am not a musician, I don’t feel people’s face (eww, so weird!), and my blindness really played a very small part in my life. It occasionally impacted my friendships, it sometimes changed the way I did things in class, but for the most part, I was your average middle or high schooler. Your average middle or high schooler who just happened to use a cane and push around a cart with a big CCTV on it.

So that was my experience as a blind adolescent. Not that exciting, really, but I hope some of you will find it useful. Not everyone’s experience as a blind teenager is like mine – just as not everyone’s experience being a teenager is like mine. Everyone’s is different. Every story is different. This is just mine. But, sadly, most blind characters in fiction have very similar stories, there isn’t room for the different variations. Which is why I wanted to share mine. Just so some of you who might choose to write a blind character in the future know an alternative version of the common story.

And now, I’ll stop rambling. 😛

Here We Go!

Corinne and I are so excited for the start of Disability in Kidlit! While the bulk of our event will run through the month of July, we do have one post going live very soon that I think will give you all a good taste of what this series is about–stay tuned.

Just a few quick notes:

First, we want to give a heads up that there may be some swearing or other mature content in this series. We wanted all of our contributors to feel free to stay true to their own voices.

Second, we will be running a feature on Thursdays that includes multiple contributors. We posed a question to all our contributors and invited them to respond with their personal views. It’s a fun way to get a lot of perspectives on different topics that relate to disability.

And, finally, remember that we’ll have a new post every single day in July–so be sure to watch out for those on here, Tumblr, and Twitter!

Thanks for keeping up with us, and we hope you enjoy the series!

Coming this July!

Hello Interwebz!

After much emailing and planning, Corinne Duyvis and I are nearly ready to bring Disability in Kidlit to a blogosphere near you!

Starting July 1, this blog will feature posts by writers and bloggers and other peeps from the YA and MG communities discussing disability and kidlit. There will be posts about person experiences, reviews of books featuring disabled characters, discussions of tropes and stereotypes, and more!

Our goal is for this month-long series to serve as a resource for readers and writers hoping to learn more about the realities of disability, which are often quite different from what you read in books or see on TV.

We’ll be covering a spectrum of disabilities and mental health disorders and sending you info on a variety of social platforms, including our Twitter and Tumblr (where we’ll also be reblogging and retweeting anything disability-related that you might find interesting or useful). We hope you’ll stick around!

See you on July 1st!