Tag Archives: Kody Keplinger

Discussion #2: Tips for Research & Respectful Writing

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Last week’s discussion on inspiration porn garnered some great responses, and we’re so excited to be sharing today’s discussion. We asked our contributors if they had any brief thoughts to share on the following topic:

Tips for Researching and Respectfully Writing Disabled Characters

Here’s what they had to say…

Kayla Whaley:
I fully believe that respectfully writing a character with a disability requires a solid research foundation. First, and most obviously, know what your character’s disability is. Read up on the causes, symptoms, prognoses, but DO NOT take anything you read wholesale. Most disabilities vary WIDELY. For instance, with my disease, I stopped walking at six. Others I know stopped at 14 or 15, while some never walked at all. Some use manual chairs, while I’ve never had the strength for one. I can still sit up, hold my head up, eat on my own, while others can’t. There’s so much variation from person to person. So, yes, know the medical realities of the disability, but know they aren’t all realities for every person.

Research absolutely needs to go beyond that, though. Talk to people with either the same or similar disabilities. Your character won’t feel real if you just talk about how, for example, SMA is caused by a mutation on the SMN1 gene (I actually had to look that up – I had no idea which gene mutation caused my disease). Show the reader how she’d always rather drive uphill than downhill because gravity makes it harder to sit upright going downhill. Or how sometimes her left pinky toe goes numb from sitting cross-legged all day (her preferred position though her doctors hate it). Or how in eleventh grade the elevator broke and she spent all day in her Latin classroom hearing the same lecture over and over, but it was totally awesome because NO MATH. It’s all in the details of the experience, not the science. (You know, in my experience. See what I did there?)

Of course, to write a character with a disability respectfully, don’t focus only on the disability. Don’t even primarily focus on it. Focus on the character. Write them the same way you’d write any other character. Get to know them: their wants, needs, motivations, fears, faults, likes, dislikes, hobbies, etc. Whatever you normally know about your characters without disabilities, know those things about those with disabilities too. Above all, write them as full, complete human beings.

Kody Keplinger:
I feel like the most important thing is to talk to a person (or many persons) with the disability you’re writing about. Too many authors do research just to find ways to make the disability fit the story they are trying to tell as opposed to truly researching the disability as a whole. Look at many different avenues – for instance, if you’re researching blindness, look at many different causes. But most importantly, talk to real people.

And when you talk to them, don’t just ask them things like “How do you do X, Y, and Z?” Also ask things like, “What things should I avoid writing about to make this real? Or there any stereotypes I should steer clear of?” chances are they’ll have a ton to tell you about, but you might not get that information with a basic line of “How to” questioning.

Holly Scott-Gardner:
It’s hard to get a disabled character right, simply because no two people with a disability are the same. Some of us are confident, some like studying, think watching sport is awesome, but as with any group in society that isn’t the case for all of us. We have different personalities, our likes and dislikes differ and even the way we respond to our disability varies.

I’m going to focus on visual impairment here as I can relate to it personally. Some blind people use a cane, some a guide dog, many use both. Most people who are classed as legally blind have some useful vision, I am a Braille user but other blind people read large print. I’m trying to highlight here that you can’t just decide to write a visually impaired character and go for it, you must do your research. Google is great and you can find out a lot of information about assistive technology, programs specifically for the blind and tools we use in the classroom. But the only way to really know what it’s like to be blind is to talk to a blind person. I’d recommend if you’re writing a character with a disability to talk to a number of people who have that disability. As I said we don’t all do things quite the same way and so from talking to a range of people with that disability you’ll get a more accurate idea of the way you’re character might behave.

Don’t be scared to approach us, 99% of us would be relieved to know that an author is doing research and more than that they are actually reaching out to people with that disability so that they can write an accurate portrayal of it. So often I see badly written books where the blind character is helpless, or uses technology that is outdated or even doesn’t exist! Knowing that an author wants to put the effort into researching blindness and writing the best portrayal they can is extremely encouraging.

s.e. smith:
Research is one of my favourite things in the whole world, as both a journalist and a writer of fiction. I love outlining, pulling together a story, and then delving into the facts behind it—with fiction, there’s always the added tension of seeing if my characters and world are sustainable, believable, and immersive, whether I’m writing about cyborgs in space or demonically possessed watermelons. When it comes to depicting real actual human experiences, research is so critical, both to make stories better, and to make them authentic; people want to see themselves in fiction, and as an author, you have a responsibility to depict minority groups with care, because your readers will take away messages about them from your text.

And my advice is: get ready to absorb a lot of information. There are tons of disability blogs out there as well as memoirs, which gives you a great chance to get a broad perspective on different disabled lives and different experiences with the same disability. Disabled artists and creators make comics, films, and other creative works that are another great informational tool. Identify a couple of people with the disability you’re writing about and approach them, politely, to ask if they’d be willing to work with you as research partners. Offer to compensate them for their time. Do your research ahead of time so you can ask them appropriate and useful questions, and treat them respectfully. If they’re willing to read drafts of your work, take advantage of that opportunity, because as they see the whole work come together, they can identify issues that may arise, or point out things you haven’t thought about (why did your autistic character cover her ears while riding the train because the noise was too loud, but seem totally fine with the noise of a jet engine?).

Nisi Shawl’s fantastic transracial writing for the sincere is a recommended read for anyone writing minority characters, because what she has to say applies not just to transracial writing but also to writing about disabled characters, queer characters, and people from minority groups. Shawl’s Writing the Other is another fantastic text to use; yes, you need to research how to research! (Sorry.) If you don’t share the experiences of your characters, you need to research them, rather than assuming that the lessons of pop culture and assumptions of society have prepared you. Ultimately, don’t be afraid to fail; the question isn’t whether you will fail, but whether you will learn from your mistakes.

Sarah Bromley:
Of course you want to maintain respect for people living with whatever condition you are researching for writing fiction. I find personal interviews to be a better source for research because it allows the interviewer to go deeper with the questions than just mining the internet for articles, but personal interviews also demand a high level of respect. If you have someone close to you with that condition, you can approach that person and tell him/her you want to write about it. Most people are willing to talk about their conditions and make sure you are accurate in your description of the condition.

And that’s the thing here. Accuracy versus exploitation. No one wants to feel like they shared information and it was used to exploit their condition. So assure anyone that you’re interviewing that you won’t be sensationalizing what they share with you, that you’ll be giving an honest look at what it’s like to have that particular condition.

Corinne Duyvis:
Aside from all the great advice above, one thing I want to urge people to do is ask themselves this: What do I know about this disability? Where does this knowledge come from? Most of the time, the answer is ‘pop culture.’ Too many people will write what they think is a certain disability with bits of info scrounged together from various books and movies. Scratch everything you think you know and research from scratch. Turn this research into a project: don’t treat it as an hour-long Google/Wikipedia search or a quick interview, but immerse yourself for weeks or months on end in articles, blogs, and discussions–about everything from RL annoyances to iffy media portrayals. Become acquainted with disability tropes and clichés and figure out exactly why they’re so bothersome.

Particularly, when you write a disability, don’t look at a list of symptoms and and wonder, “OK, now if I were in this situation…?” because disability is more complex than that. You must research beyond the objective physical aspects. People become used to disability over the years and find ways to adapt; don’t get so hung up in a character’s limitations that it takes over their entire being. For a number of people, disability is legitimately terrible. For others, it’s an annoyance along the lines of wearing glasses. Others equate it to not owning a car, which has both downsides and upsides.

Whichever route you go, make sure the character’s personality traits, habits, and plotlines are influenced rather than defined by disability.

Disabled readers, anything to add? Authors, will this change how you approach your disabled characters, or did any of this raise further questions?

We’d be delighted to hear from you in the comments!

Kody Keplinger: Being A Blind Teenager

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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. 😛

Discussion #1: Inspiration Porn

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Welcome to our first discussion post! We’ve selected a topic for each Thursday of this month, and asked our contributors if they had any brief thoughts to share on that topic. This way, we can showcase a variety of perspectives and opinions.

This week’s topic: inspiration porn. Don’t know what that is? You’ll find the answer below–we asked our contributors how they define this concept and what they feel about it. Read on!

Kody Keplinger:
To me, inspiration porn is any sort of media (a picture, a movie, a book, etc) or even a view of an individual, that tries to fabricate an ordinary action as something extraordinary. For instance, a meme depicting an amputee with a prosthetic leg walking with the caption “Brave!” (Yes, I have seen this before). It can also be imposed on an individual. For instance, I’d say I’ve been turned into inspiration porn by strangers who tell me that I’m “so amazing” for – no kidding – walking down the street with a guide dog or a cane.

I *hate* inspiration porn. I can’t even convey how much I hate it. To me, it’s such a dangerous thing because, even if the intentions are good, it implies that the average disabled person is weak or lacks independence. So when people tell me I’m “amazing” for being out in the world, it implies the average blind person is a shut in. In reality, disabled people are people and want to be treated like normal people. This means not being seen as “brave” or “inspirational” for average, every day actions. Unfortunately, the news, modern lit, modern film, etc, seem to think this is the only way to tell the story of a disabled person. The plot is always “Character X has Disability Y, but she STILL MIRACULOUSLY MANAGES TO OVER COME IT.” Disabled people in the media are always treated as extraordinary and not ordinary. And, to put it eloquently, it sucks.

s.e. smith:
That Oh So Special way of viewing disability. Inspiration porn positions disability as a terrible burden, assuming that disabled people have no quality of life, but they can find some redemption in inspiring nondisabled people by doing novel, heroic, and amazing things like having jobs, getting good marks in school, or participating in society. Inspiration porn is photos of disabled athletes with sappy captions. It’s news stories about brave little disabled children boldly ‘not letting their disabilities stop them.’ It’s handing awards to disabled students for doing what everyone else is already doing, like they’re freakish, fascinating objects rather than human beings. It’s the treatment of disability as a valuable learning experience for nondisabled people, rather than just something that’s a fact of life for some members of society.

And in fiction, it’s pernicious. Disability is often used as a plot device to teach characters something, and disabled characters frequently show up as object lessons or figures of inspiration to the other characters, particularly when they are not the narrators or the centres of the storytelling. Thus we have stories where characters are ‘inspired’ by the fact that disabled people exist, or do things in the name of their disabled object lessons. It deprives disabled characters of all autonomy and objectifies them; from human beings, they have been transformed into mere caricatures, and they aren’t allowed to just be themselves.

Want to avoid disability porn? Focus on this: people should be inspiring because of their deeds, not because of who they are. Thus, for example, a woman like Hannah McFadden isn’t inspiring because she’s a wheelchair athlete and it’s just amazing that someone who uses a wheelchair for mobility can be an athlete. She’s inspiring because she’s a world-class athlete who competes on the international level with some of the fastest, strongest, most amazing athletes in the world.

Mindy Rhiger:
Recently on my bus commute home from work, an older lady leaned over to me and said words I have heard so many times in my life: “You are so inspiring.” I still don’t know how to respond to that even though people have been saying it to me since I can remember. In that moment, I couldn’t help but wonder how the woman saw me. Clearly I was not just another commuter reading a book on a bus. I knew I looked different—the hook-shaped prosthetic arm took care of that—but what did she think that meant for me?

I wanted to tell her that what she could see didn’t mean as much as she thought. That my life was pretty normal, really. But she had already leaned back in her seat and turned her attention elsewhere. The conversation was over without any contribution from me. I understand that inspiration is a tricky thing, and I don’t want to take good feelings away from anyone. I do, though, caution people who are willing to listen that inspiration based on assumptions may be more de-humanizing than they realize.

Corinne Duyvis:
Inspiration porn, I feel, is a way of simultaneously focusing on how incredibly tragic a certain disability is and robbing the disabled person of any agency or complex feelings about it. Instead, it fawns over–fetishizes, almost–the aspects that make abled people smile sappily. After all, isn’t it amazing how well this wheelchair user can navigate public transport? It’s so inspiring! Just leaving the house is already an act of immense bravery, worthy of applause. In other words, the bar is set at a condescendingly low level.

In inspiration porn, it’s fine to linger on how much pain someone is in, or adversity they’ve faced, because all of it strengthens just how brave they are for trudging on regardless–but lord forbid you mention things disabled people might struggle with every day, such as accessibility, ableism, policy, benefits, healthcare. Inspiration porn glibly bypasses those issues to tell a narrative that won’t make anyone’s conscience sting, or feel like they might need to change their attitudes. The audience is abled people, and the goal is to make them feel good, and screw what actual disabled people might want or need. Disabled people act as props in this narrative. One spot-on example: the Glee episode “Laryngitis” in which a disabled character appears solely to inspire Rachel.

Kayla Whaley:
To me, inspiration porn is any story where a character must overcome the horrible tragedy of their disability, thus inspiring the able-bodied audience. This can be found in any and all types of media: books, movies, TV, etc. The first time I remember seeing it was in a Disney channel movie back in the day called Miracle in Lane 2, where Frankie Muniz heroically races soapbox cars despite using a chair. I had no language to understand what I was seeing or why it made me so profoundly uncomfortable, but now I do.

How we portray reality affects reality. Culture is made, constructed by an infinite number of tiny (and not so tiny) decisions we each make. Inspiration porn, therefore, affects how individuals and the wider culture see me. For example, I’ve had a lot of recommendation letters written for me (for scholarships, internships, awards, jobs, etc.) and I’ve read quite a few of them. Every single one so far has said something along the lines of, “Kayla never lets her wheelchair stop her. She’s such an inspiration.” And every time I think, “Really? Of all my accomplishments and qualities, that’s what you chose to lead with?” The media I consumed both as a kid and now tell me I’m not allowed to be a person; I have to be an inspiration. Whatever that means.

Marieke Nijkamp:
A college counselor once told me they really couldn’t accommodate me. Not because I was disabled—they had funds and scholarships for that. But those were only valid as long as I wanted to do what Normal People™ did. And I had just expressed my interest in doing a double degree, because the undergrad degree I was working on at the time was not challenging enough for me. She pointedly told me (though not in so many words) that if I did not stick to their preconceived notions of disability, they would not be able to help me pursue my academic plans. True to their word, they didn’t.

Inspiration porn, to me, is that preconceived notion that either turns disabled people into objects or into lesser humans, depending on the narrative. It is offensive, it is discriminatory, and most of all it is dangerous. It tells us, disabled people, that “normal” is the best we can (and should) achieve, glossing over the fact that “normal” is a culturally constructed concept, based on individual experience that should (but not always do) include ours. It tells society to expect only that and all that. If we do what everyone else does, we are objectified as an “inspiration”. If we create our own normal, we are Othered. This lowers our value and significance as human beings in the eyes of other human beings. And it tells abled people that they should not expect more from us, not just in terms of what we achieve but in terms of who we are. We can be inspirational. We can be pitied. But we cannot be happy, sad, competitive, curious, lazy, sarcastic, struggling, in love, in hate, in any way or shape complex at all. Let me give you a hint though: we are. And that is our normal.

Haddayr Copley-Woods:
I have found that inspiration porn is, like porn-porn, about how the viewer feels — not about the disabled person depicted. Inspiration porn makes the viewer feel feelings. Generally pity, and generally a profound gratitude that they are not a cripple themselves. They cannot imagine how someone manages to go through life on crutches, being autistic, twitching, or using a wheelchair — without putting a bullet through their brains. They watch us struggle, or ride a bike, have one glorious victorious moment, or sit in a chair in slowmo. And they feel very, very warm inside. They get weepy. They whip out their compassion and stroke it until it explodes into fuzzy self-congratulatory peacefulness. It’s so inspirational! They say.

But what exactly does this inspire you to DO? Does it inspire you to step on a land mine, be lucky enough to have the money and resources to have blades as prostheses, and become an athlete? No? Does it inspire you to coach basketball and give every kid a chance to try out instead of giving That Autistic Kid only one chance to get a basket in four long years? No? To demand that special education services are fully-funded? No? So where is the inspiration? What. Are you. Inspired. To DO?

If the answer is “share it on Facebook,” please stifle. I don’t share my favorite xhamster videos. Let’s keep it clean, folks.

What do YOU think, readers? Were you familiar with the concept of inspiration porn? Did these thoughts shed a new light on the subject for you?

Share in the comments!