Tag Archives: disability

Avoiding “Special” Narratives About Disabilities in The Change Series

By Rachel Manija Brown and Sherwood Smith

brown-smith-strangerRachel

Everything I write stems from personal experience, even if it’s set in a post-apocalyptic world where people have mutant powers and the trees can eat you. When Sherwood and I first created the world of the Change, we wanted it to feel real and be true to our own lives and experiences. Fiction often shuts out people like us—old women, Jews, people with disabilities—but our actual lives have contained plenty of excitement, adventure, and romance. We wanted to write about heroes who were more like us and the people we knew.

In the Change series, we created some rules of thumb about disabilities to express what we believed to be true. One was that there are no miracle cures. There is a doctor with a mutant power that he uses to heal, but what it actually does is speed up time, to heal a wound quickly. If it’s not the kind of wound that could be healed with nothing more than time, his power won’t help. When young prospector Ross Juarez badly injures his wrist in the first chapter of Stranger, Dr. Lee saves his life but can’t fully restore the function of his hand. Ross spends the rest of the book doing physical therapy and learning to adapt; at the end he acquires a prosthetic gauntlet. And then he spends the entire second book learning to adapt to the prosthesis. Sherwood and I have both done physical rehab for various reasons, and we wanted to depict how long and difficult that can be.

Another world-shaping rule we had is that disability and accommodation to it is common and normal. We don’t normally think of nearsightedness as a disability, but it would be without glasses. (We both are so nearsighted that without glasses, we can’t recognize people from across the room.) So we have characters with glasses. We have characters who use wheelchairs. We have homes built to accommodate family members who can only see ultraviolet. We have characters who are disabled via injury, birth, life experience, or mutation, and show how they adapt and how society accommodates them—or chooses not to.

We also wanted to avoid certain types of narratives. Sherwood has a particular loathing for the cheap sentiment of the inspirational story, where the disabled hero does something heroic and is then exalted as extra-special. It tends to make the disabled person into a symbol rather than a character. We also didn’t believe that one heroic act is enough to get all prejudiced people to drop their biases. In real life, they’re more likely to keep their prejudices but decide that one person is an exception to the rule.

I especially dislike the disability tragedy stories, in which people with physical or psychological issues are ruined forever, typically dying at the end while everyone wrings their handkerchiefs and says it’s for the best because they were suffering so much. Apart from just being the flip side of the glurgy sentiment of the inspirational story, it sends a terrible message to people who do have those disabilities. Do we really want to tell readers that if they have Disability X, their life is ruined and they might as well kill themselves?

I can attest to the pernicious effect of the disability tragedy narrative. In my life, I’ve had severe depression and PTSD. Unlike some disabilities, those have a lot of inherent pain and suffering attached. In my own experience, those are not conditions of life, like being dyslexic or nearsighted, but illnesses that require treatment. So that’s hard to begin with. But you know what makes it ten times harder? When almost everything you’ve ever read with a character with depression or PTSD concludes with either a fake miracle cure, or with them dying and all the rest of the characters saying they were better off because no one who has been through the trauma they’ve endured can ever recover, let alone find happiness.

I did eventually find some exceptions to that narrative, and I treasured them. They gave me hope that it’s possible to go through terrible things, but to survive and find happiness, even if you do have scars. In Lord of the Rings, Frodo can’t find peace on Middle Earth and must sail into the West for his healing. But Faramir and Eowyn, who were also deeply scarred by trauma, find healing where they are. Several of Robin McKinley’s books, such as The Hero and the Crown and Deerskin, also offered the possibility of hope that I could believe in.

In my own personal experience and also in my work as a PTSD therapist, I have found that healing is very possible and very real. It’s not easy, but what worthwhile thing is? So I wanted to show that process in fiction, rather than the fake and cheap choices of miracle cure vs. death and despair. The other thing I wanted to show, in regard to trauma, is that it affects different people differently. Not everyone who goes through a traumatic experience gets PTSD! And for those who do, everyone’s PTSD is different and everyone’s path back from it is different.

In Stranger, our five POV characters all fight in the same battle. But they don’t all emerge with a cookie-cutter set of flashbacks, nightmares, and depression. One focuses on the life she saved, and remembers that with joy and pride. One gains insight into himself and his place in the world. One uses it to reaffirm what she already believed was true. One finds insight and still yet more trauma in a life that was already full of it. And one spends the entire next book quietly falling apart inside.

But in the end, for all of them, that battle and its effect on them was just one piece of their entire lives. PTSD has a huge effect on Ross, but it’s not all he is; trauma will always affect him, but it doesn’t ruin his life. Much like the linguistic shift from “disabled people” to “people with disabilities,” in our books, we tried to put the people first.


brown-smith-hostageSherwood

In the mid-eighties, a conversation with Jane Yolen crystallized my thoughts about a great deal of writing about disabled people. She wished writers would stop submitting variations on “The Special Little Animal With The Broken Tail”: well-intentioned but sentimental tales about an animal that has some kind of disability but whoa, it develops a special power or does something extra heroic, that makes everybody cheer about how special they are!

Those stories have been around for a long time. I read some when I was a kid, half a century ago and more. The “feel good” didn’t feel good past the ending of the story, even to me, as a not-very-savvy kid reader. Once you turned away from the story, the kid in the class who had some kind of problem still had the problem. And what does it say if the only way anyone will like a disabled person is if they get special powers or leap into a burning building and save a family? Even worse, the stories seemed to be saying that one’s ability issue was one’s identity.

Years later, my twenties, I knew people with various disabilities. In those days, society began to experiment with various terms, including differently-abled. A lot of people scorned that as pablum, but the verb that seemed the most appropriate to me was “adapt.” People with various types of issues (including us lefties in a world that is largely oriented right-handed) figured out workarounds. Some small, some awesome, like the paralyzed painter who used her toes. When you saw the end result, you weren’t thinking Blind! Wheelchair! Missing Fingers! Club Foot! You saw the result of the person’s skill or art or inspiration or wit.

One of my regular crowd during those days was a guy with albinism who was also legally blind, who I’ll call Pat. His eyes were also super-sensitive. His thick glasses had plastic extensions that fitted around his face so that no air could get to his eyes. Pat had been a chess champion in high school, and he was a math whiz, carrying everything in his head. If Pat heard it, he remembered it, and he navigated by memory, knowing pretty much the entire bus route of L.A. He fell into our group when brought by another science fiction enthusiast, and he loved the same sick puns and jokes and was also a dedicated Jackson Browne and Bob Dylan listener.

We were all barely out of college and still struggling to find jobs that paid minimum wage, so we all either got rides or drove junkers that were constantly breaking down. One day one of the group, I’ll call him Bob, came storming in to say he needed a ride. He turned to Pat and said, “Hey, if you can drop me at X, then swing by and pick up Y …” Then his mouth dropped open—he was appalled at his own insensitivity. The room went silent until we all saw Pat shaking with laughter.

That moment was proof to Pat that people saw him as Science Fiction Loving, Pun-Cracking, Dylan Quoting Pat, and not Blind Guy With Weird Glasses Pat. He was one of the crowd who happened not to drive because of his eyes, just like Bob was a rotten speller, and Tina was diabetic, and I was dyslexic. (We didn’t know the word “dyslexia” in those days, but everyone knew I could never dial a number correctly, ever, nor could I repeat numbers correctly or do math. So I had to repeat numbers several times, and even then everyone knew to double-check.) Nobody in our group was identified solely by their physical or medical or neuro-wiring issues.

I took that to heart when I became a teacher. Nobody wanted to be the “special kid” … unless they were playing us, which is a coping mechanism like any other. So I never gave talks about “specialness” or let anyone define anyone by whatever their issue was. And I refused to write variations on the Little Animal With The Broken Tail.

When Rachel and I began developing Las Anclas and its denizens, we let the characters define their identities. This was easier because we’d designed a world in which all kinds of variations on human life were seen everywhere—variety was everyday.

Early on in the first book Ross, who has some severe emotional issues, also gets wounded in one hand, which becomes a permanent disability. The other characters don’t see Ross The One Handed Guy, they see a guy who struggles to use a hand that used to be deft. One of the ways he and Mia Lee cement their friendship is her delight in finding ways to engineer workarounds for him.

Jennie’s mother is deaf, and reads lips. Everyone is used to making certain that Mrs. Riley sees them face on when they talk to her, but she is not defined by her deafness. She’s kind, and skilled with horses, and Changed, and African-American, and loves her family, and is deaf. No one attribute makes up all of a person’s identity.

As for Jennie, she’s always been a leader, but being a leader causes her some devastating emotional fallout. Afterward Jennie herself begins defining herself by her emotional issues, until she can slowly get a handle on herself.

Out of all categories of identity, the one that people in our books are most likely to use to define themselves is the Change, which is human mutation. It’s one of the few identities that’s still the focus of prejudice, so people often react to that by either hiding their Change out of shame or fear, or embracing it in defiance or pride. It’s also the identity most likely to have other people perceive as the only important thing about that person. They’re not seen as a complete person, they’re seen as That Changed Girl. Probably Las Anclas has stories about “The Special Little Animal With The Change.”

But we’re not going to write them.


sherwoodsmith-smallSherwood Smith (left) writes fantasy, science fiction, and historical romance for young as well as old readers. Her latest story is “Commando Bats,” about old women getting superpowers.

rachelmbrown-smallRachel Manija Brown (right) is the author of all sorts of stories in all sorts of genres. She has written television, plays, video games, poetry, and comic books. She writes urban fantasy for adults under the name of Lia Silver, and lesbian romance for adults as Rebecca Tregaron. In her other identity, she is a trauma/PTSD therapist.

Stranger and Hostage, the first two books in The Change series, are now available. Rebel, Book 3 of The Change series, is coming in January 2016.

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Writing Disabilities in Fantasy and Science Fiction

This month for Fantasy and Science Fiction Month, we’ve invited Asks about writing diverse fantasy and science fiction. Several questions focused on disability, so we’ve rounded them up in one post, answered by writer Marieke Nijkamp.

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acrossthetracksrebounding said: I have a main character in a fantasy story who uses a prosthetic right arm powered by magic. Her supply of magic has varied over the years, so sometimes her right arm works just as well as her left and other times it doesn’t. My concern is that, if it’s a prosthetic that’s so analogous to a ‘normal’ arm, does it count as a disability?

There are two interesting things going on in this question. First of all, the use of the phrase “normal.” While here it’s obviously set apart with scare quotes, the dichotomy of disabled vs. normal is (pardon the pun) quite normal. And very clearly something to be aware of, because by juxtaposing disability with normality, it’s easy to set up disability as abnormal. (See also the medical model of disability, that sets up disabled people as broken, in need of being fixed or cured.) This has long since been society’s understanding of disability.

These days, the United Nations Convention on the Rights of Persons with Disabilities recognizes the social model of disability as being the prevailing paradigm. The social model differentiates between impairments (a medical condition that leads to disability) and disability (the result of the interaction between people living with impairments and, basically, the way the world’s set up). The social model of disability sees disability as:

“the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers. It therefore carries the implication that the physical, attitudinal, communication and social environment must change to enable people living with impairments to participate in society on an equal basis with others.
“A social model perspective does not deny the reality of impairment nor its impact on the individual. However, it does challenge the physical, attitudinal, communication and social environment to accommodate impairment as an expected incident of human diversity.
”The social model seeks to change society in order to accommodate people living with impairment; it does not seek to change persons with impairment to accommodate society. It supports the view that people with disability have a right to be fully participating citizens on an equal basis with others.” (See: http://ift.tt/1O7DBbx)

Which brings me to the question: “does a [magical] prosthetic count as a disability?” That then depends on quite a few things. Does this prosthetic allow your character to navigate physical barriers in their world? Does it depend on her energy and how does it depend on her energy? Would that be akin to a chronic illness maybe? What is society’s attitude toward her? Is her society systematically and inherently ableist, like ours is? How would she personally identify? What fits best with the way she looks at and understand the world?

And on that note, did you research or talk to people about living with prosthetics? Because representation matters, and even representation of magical prostheses can have repercussions in the real world.


gnomer-denois said: I am writing a fantasy novel and one of the secondary characters I have is a veteran from a war about 20 years prior where she was a surgeon, mostly just sewing people up because of her tailoring/embroidery skills and now she’s working as a tailor again, pretty high end. I was considering that she might have lost a limb in the war, and I lean toward her non-dominant hand. Still a set back for a tailor. There is magic in this world that might aid a prosthetic to be more like current ones. But I’m still not sure if this would be an unrealistic portrayal of an amputee’s ability because I don’t want magic to just fix the disability like it isn’t there, but more allow a prosthetic to receive some input from the skin interface and have some return of mobility for grasping, etc. Or if there is a more accurate way to show how someone missing a hand/lower arm would be able to sew, etc. If I can’t figure out how to do it realistically, I may change the disability, but I wanted to try.

Let’s divvy this up in a few steps too, because that’s a lot of information to process.

First of all, I think it’s important to make clear what “fixing” disability means and what it doesn’t mean. The dreaded magical cure or fixing disability usually presents itself by way of erasing the disability. Either through magic as a complete solution or by retconning the disability entirely. This often includes both the impairment, to use the terms above, and the way the disabled person interacts with the world. For example, a girl who has limped the entire book gets magically healed by the end of it is suddenly who she was always meant to be: whole, normal, and seen like that by everyone else. (And despite having learned to compensate for her limp, becoming suddenly non-disabled does not cause her to relearn to walk. After all: she is now “whole” and “normal.”) Her disability, and everything around it, gets completely erased.

This is very much informed by the medical model mentioned above, by the way, which claims that disabled people are broken and need to be fixed. Only then can they have a happily ever after. (This also happens the other way around — the “healing” happens in the interactions with the world because the character becomes more “likable” and as a result of that, they are healed.)

Hopefully you get why both of these options are super problematic — not to mention ignorant of the fact that for a lot of us, disability is an important part of our identity, exactly because it shapes the way we interact with the world. It actively informs us and that isn’t something you can easily erase.

Now assistive/adaptive technology (prosthetics, orthotics, and assistive devices), on the other hand, does no such thing. They make living with disability and interacting with the world easier, but they do not erase the disability completely. Using assistive technology is about accessibility. It’s about independence. As someone who uses canes and braces, in my experience it can even be about pride. (The flip side of it is that is doesn’t always change attitudinal barriers — and can even increase those.)

So whether or not this is about magically fixing disability depends on a lot of nuances. And those questions mentioned in the previous answer come into play here again. (On that note, let me also point out that I am no amputee and I have never used prosthetics, so please do be mindful of your research.)

Now, as for the second part of the question: how would someone be able to sew one-handed? By pinning material to a pad. By using a sewing bird — a table clamp that pins fabric to a table. By using a sewing brick or other weights. By using different needles, perhaps. In any case by adapting her process. By adapting to the situation. In a way, these are assistive devices too, after all.


thefrostbackbasin said: One of my main characters is disabled due to traumatic injury to the spine but my sci-fi story takes place in the far future so I’m concerned how developed the medical community should be in terms of ‘fixing’ disability

About a year ago, I was asked to be part of a panel called “We can rebuild you: disability in science fiction” about precisely this question. Considering we spent a good hour talking about it, I can tell you now there’s no easy answer — and a lot of it is up to the world you build.

There are a lot of variables in this equation. The most important one we’ve already discussed — the way society views disability. There’s a lot you can extrapolate from that in terms of how developed the medical community should or shouldn’t be. (And ask yourself: is the medical community as developed as it “should” be now? Under what paradigm? Should by whose measurement?)

The second point to consider has less to do with development and far more with accessibility. Even if the medical community is as developed to immediately fix traumatic spine injury … is that development accessible to all? What are the costs? The conditions?

And also — what are the costs to hospitals? Or to pharmaceutical companies? Is “fixing” all disabilities cost-efficient? There are plenty of medicines that exist in theory, could be produced, and could improve quality of life. If only their target audience wasn’t so small. Ask yourself how politicized the medical community in your world is and what the ethical discussions are about.

And if a solution is available: what are the physical costs? What kind of technology is used? What effects does that have on the body? How lasting is this solution? Is it a solution that’s surgical or based on medication? If the latter, what is society’s perspective of that? Because I can tell you from experience that even something as deceptively simple as taking daily pain medication is frowned upon by people who do not live with chronic pain.

Or look at it from a different perspective: if the medical community has evolved to a point where spinal injury cures are as common place as flu jabs, what does that mean for the overall development and society’s perspective of human health? Is life extension or enhancement normal? And if so, what effects does that have on the way injuries are perceived? The way disability in general is perceived?

In the end, there are a hundred different ways in which to portray disability in the future. There are a hundred different reasons why the medical community will have developed well enough and a hundred different reasons why they won’t have yet. In the end though, it’s your story. So go for what works best for you, your character, and their society. Just be mindful that it is and remains respectful or real lived experiences, whatever you do.


Marieke Nijkamp is a storyteller, dreamer, globe-trotter, geek. She holds degrees in philosophy, history, and medieval studies, and wants to grow up to be a time traveler. Her debut young adult novel This Is Where It Ends will be published by Sourcebooks Fire on January 5, 2016.

Moving Beyond “Pretty”

By Jaclyn Dolamore

dolamore-glitteringshadowsIn 2009, by some odd coincidence, I ended up reading four books almost in a row with a character who was missing a hand. Each of these characters was in some way cool or charismatic…and they were all male. I found myself trying to recall if I had ever seen a fictional female with a missing hand, and at that time, I couldn’t think of a single one. I chalked this up to my general theory that fictional women just don’t get to be interesting in as many different ways as fictional men do, and thought, “Maybe someday I’ll write a cool one-handed girl,” in the vague way writers file away a lot of random ideas.

Fast forward several years, and the plot to my work-in-progress, Glittering Shadows, had taken various twists and turns and one of my female characters, um, kinda needed to lose a hand. While this might have been a decision purely based on plot, I nevertheless wanted to take it very seriously and write it as accurately as possible, so one of the things I did was to research prosthetics.

All the male characters I read about in 2009 had a hook, and it was usually described as being sharp and weapon-like, such as you see on fiction’s most famous one-handed character, Captain Hook. My series is set in a world based firmly on Europe between World Wars, so the technology needed to match the era. My research showed that the standard prosthetic for a missing hand—both at that time, and often still today—is indeed a hook, but not a sharp pirate hook. It is, in fact, a split hook that can open and close to grasp things, and is operated by a motion of the opposite shoulder through the use of bands.

I have to confess, when I first read about this, I felt a protective pang for my character. This didn’t sound…pretty, like a delicate Victorian prosthetic hand someone would post on Pinterest. This had all the romance of a medical supply store, with a dash of action movie bad guy. I didn’t want to do this to her! It makes me squirm to admit this was my vision. And yet, I had no idea this thought was lurking in the depths of my mind until I started thinking in the context of one of my own characters. This is actually one of the things I most LOVE about writing diverse fiction—it brings buried biases and stereotypes to the surface like bubbles—and often, they’re just as easy to pop with some real information.

My second thought, of course, went straight back to the same thought I had in 2009: the very fact that my gut reaction was “that isn’t pretty” is why I needed to write it. Because girls so often have to stay pretty, while at the same time, entertainment often reinforces that disabilities aren’t pretty. Why shouldn’t girls get to be both disabled and glam? Why should female characters be protected? And how do real girls with only one hand feel when their portrayals in fiction are largely male pirates and villains?

When I started watching YouTube videos demonstrating prosthetic hooks, I realized they didn’t really look like I expected either. They were more graceful, more capable of precision than I had imagined. I stopped cringing on my character’s behalf and started drawing sketches of her dressed to the nines. As, in the book, she grows to like her own reflection again, so did I shed some of my own conceptions of disability and beauty, and in a larger sense, of what women are allowed to be.


Jaclyn Dolamore spent her childhood reading as many books as she could lug home from the library and playing elaborate pretend games. She has a passion for history, thrift stores, vintage dresses, and local food. She lives with her partner Dade and three weird cats in a Victorian house in western Maryland. Visit her online at http://www.jaclyndolamore.com/.

Glittering Shadows is available for purchase.

The Inspiration Behind “Defying Doomsday”

By Tsana Dolichva

Apocalypse fiction rarely includes characters with disability, chronic illness and other impairments. When these characters do appear, they usually die early on, or are secondary characters undeveloped into anything more than a burden to the protagonist. Defying Doomsday will be an anthology showing that disabled characters have far more interesting stories to tell in post-apocalyptic/dystopian fiction. 

Defying Doomsday will be edited by Tsana Dolichva and Holly Kench, and published by Twelfth Planet Press in mid 2016. Defying Doomsday is currently crowdfunding via Pozible. To support the project go to Pozible


The idea for Defying Doomsday came to me when I was reading Rose Under Fire by Elizabeth Wein. The book is set largely in a Nazi concentration camp for women, and amid the usual low-level torture that comes with this sort of situation, the prisoners were forced to stand around outside for hours on end. Anyone who moved too much was shot. I can’t stand for long periods of time without fainting so my reaction was “Well I wouldn’t last long there, how depressing. Good thing I was born in a safer place and time.”

But in the same book, the author included a group of girls and young women on whom the Nazis conducted medical experiments. Some of them did not survive the experiments, some were executed and most of them were left disabled on some level. But, miraculously, most of them survived the war. This was thanks to help from other inmates. And it really made me think about why disabled and chronically ill characters are so often written off in fiction.

Apocalyptic or dystopian fiction, which deals with difficult physical or social environments, tends to be completely devoid of such characters. The implication is often that they all died really quickly as soon as disaster struck or were killed off-page for being a burden. But in this real world historical context a large group of these people survived, so why can’t fictional characters?

And so the idea for Defying Doomsday was born. I wanted to put together an anthology which showcased disabled and chronically ill characters actually surviving difficult circumstances. Since I’m a fan of speculative fiction, apocalypse-type scenarios seemed like the perfect setting to really push this concept.

For Defying Doomsday we want to collect stories featuring characters who face a variety of external and internal obstacles and take them in their stride. We want to show that disabled and chronically ill characters can have interesting stories, just like anyone else. We’re going to be holding an open submissions period in May and June, but we can already reveal that we have contracted stories from Corinne Duyvis and John Chu. We should have one or two more author announcements soon, so be sure to keep an eye out!

(Link to more information about the above-mentioned concentration camp survivors.)


Tsana Dolichva is a Ditmar Award-­nominated book blogger. She is editing the anthology Defying Doomsday with Holly Kench, the managing editor of Visibility Fiction. As editors and readers of science fiction, who also live with disability and chronic illness, Tsana and Holly have often noticed the particular lack of disabled or chronically ill characters in apocalypse fiction. They are excited to share Defying Doomsday, an anthology showing that people with disability and chronic illness also have stories to tell, even when the world is ending.

To support the anthology or to preorder a copy of Defying Doomsday, visit: Defying Doomsday on Pozible. Your support is greatly appreciated!

Realizing Differences in Our Disability

By Cece Bell

Believe it or not, sometimes people who have a certain disability might have misconceptions about their own disability, and about others who share that disability. Case in point: me.

For forty years now, my main methods of communication with others have been speaking and reading lips. I don’t know or use sign language, and I’ve still not yet learned how to communicate that way. There’s a chapter in my graphic novel/memoir El Deafo that attempts to show what lip reading is, and how one learns to do it. Even though I’m an experienced lip-reader, I realized while writing the book that I needed to do a little research for this particular chapter.

Before I did my research, I completely understood that someone who is born deaf might really struggle with lip-reading, because not being able to hear what people are saying from the very beginning of one’s life is going to make that kind of communication difficult. But what about people like me, who lose their hearing after acquiring speech? What I found out astonished me: not every person who experiences later-onset hearing loss can learn to read lips, or to read lips well. There are apparently lots of reasons for this, and I don’t really need to go into them…but what an eye-opener. This discovery that not every deaf person was “taking” to lip-reading like I had was an important one. It clarified for me just how important sign language is for so many; it opened my eyes to the idea that maybe I could benefit from sign language too (you can miss a lot as a lip-reader!); most importantly, it reminded me that each person with a disability experiences that disability in his or her own way.

Discovering how little I knew about deaf communication made me realize that we really do need diverse books! Not to disparage researchers and the valuable work they do, but I can’t quite imagine people rushing to the library to read lists of facts and figures about various disabilities. On the other hand, I can imagine people wanting to read novels, YA fiction, or colorful graphic novels about specific people who have their own unique experiences with disabilities. Literature speaks to hearts and minds in a way that research never could. And we can change hearts and minds for the better if we have more diverse books.


Cece Bell is an author and illustrator of books for children. She lives in an old church with her husband, author Tom Angleberger, and she works right next door in a new-ish barn. El Deafo, her first graphic novel, is a slightly fictionalized memoir about her childhood, her hearing loss, her first crush, and her quest for a true friend. She has written and illustrated other books for children, including the Geisel Honor book Rabbit & Robot: The Sleepover; Itty Bitty; Bee-Wigged; and the Sock Monkey series. You can read more about her at www.cecebell.com.

You can purchase a copy of El Deafo here

What I Learned Writing Push Girl

Push Girl, co-written with Chelsie Hill from Sundance Channel’s hit reality TV show Push Girls, follows high school senior and talented dancer Kara Moore who is faced with the struggles and triumphs of adjusting to life on two wheels after a drunk driving accident leaves her paralyzed.

By Jessica Love

When I sat down to work on Push Girl, I really wanted to get it RIGHT. It’s a book about a girl with a disability, which was not something I had a lot of experience with at the time I started writing it, but it was something I took very seriously, and I very much wanted it to be authentic. I wanted it to be realistic; I didn’t want it to feel trite or fake or wrong. So I started doing research into disability and the daily life of people who use wheelchairs. I talked to my co-writer Chelsie a lot, obviously. But I also talked to other people. I watched a LOT of YouTube videos. I read websites and blogs and articles. And the main thing that I came away with is that everyone’s experience with being in a wheelchair is so, so different.

This is a pretty obvious statement, I know, but it’s something I really had trouble reconciling in my mind because I so wanted this book to “get it right.” And by getting it right for one reader, that would mean getting it completely wrong for another. The person who uses a power chair has a completely different experience than the person who uses a manual chair. The person who was born with her disability has a completely different experience from someone who was born able-bodied and then was in a car accident. The person who uses a wheelchair because of paralysis has a completely different experience from someone who uses it for any other number of reasons. How could I possibly make sure that all of these wheelchair users saw themselves in this one book?

Obviously I couldn’t.

And this was tough to wrap my head around. When it comes to stories about able-bodied characters, there are SO MANY that there isn’t that same pressure to “get it right” for every person because, well, if this one particular book doesn’t match the experience of a certain reader, there are thousands of others that probably will. They have countless other places they can seek themselves out on the page. But with so few books featuring main characters with disabilities, I felt tremendous pressure for this book to be all things to all people. I felt weighed down with the disappointment of all of the readers who would be hoping that this would be the book that finally showed who they were and then…it didn’t.

I felt like a failure already, and I had hardly even written a word.

It took me a long time, because I’m a people pleaser by nature and because I didn’t take on the task of writing about disability lightly, but I finally had to let go of this and remember that Push Girl is a fictionalized version of Chelsie’s story. I had to accept that Chelsie’s story is not everyone’s story, and it can’t be. We just had to work together to tell THIS story in the best, most authentic way that we could instead of diluting it in an attempt to be everything to everyone. So I turned to Chelsie, I put my focus on the particular story we were trying to tell, and I tried my best to be true to her experience.

Chelsie Hill
Chelsie Hill

In the end, I’m proud of this book. And I’m proud that Chelsie is proud of it as well. I know that not everyone is going to see themselves in Kara’s story. I know some people will feel like we got it wrong, or say “that’s not how it is, you don’t know what you’re talking about.” I’m truly sorry if the book lets people down or doesn’t feel like it speaks to their experience. I really am. I spent sleepless nights panicking about it. But what I really learned while writing this book is how very different everyone’s experience is, and the key is to find the universal elements and focus on those. Those common threads that tie all of us together.

Hopefully, some time in the near future, there will be as many books featuring characters with disabilities as there are people with disabilities, and everyone will be able to point to a book on the shelf and say “Yes, this one gets me.” Until then, I hope I keep learning and trying to get it right and growing as much as I can along the way. And I truly hope that there is at least one person who sees herself in Kara, and in Chelsie.


Jessica Love is a middle school English teacher who lives in Southern California with her husband and their two tiny dogs. She’s working on her Master’s Degree in Writing for Children and Young Adults from Spalding University, and her big love is contemporary YA romance. Jessica spends all of her free money on concerts, constantly tries to prove that blondes have more fun, and is pretty much always on the internet. Push Girl is out June 3, 2014 and In Real Life is coming in 2015. Visit her website at www.jessicalove.net.

5 Things I Learned While Writing A TIME TO DANCE

In A Time to Dance, a novel in verse set in contemporary India, a young dancer loses part of her right leg and re-learns how to dance.

By Padma Venkatraman

venkatraman-atimetodance1. Go “Method”

Veda, the protagonist of A Time to Dance, looks like me (she’s of Indian heritage too) — and doesn’t (she’s differently abled).  Yes, her “voice” often spoke in my head, but when she wasn’t haunting me, I wanted to do all I could to understand and empathize with her experience of losing a limb.

I invested in a pair of crutches and spent a good deal of time hobbling up and down the basement stairs on them, with one leg scrunched up. I even bound my leg loosely on some days so I would be forced to hop on one leg.

The inspiration for the gripping scene in “Nails and Spears” came one night after I’d spent a grueling day trying to make my way around the home on one leg without crutches (crawling, basically), and then forcibly sending my leg to “sleep” (because people I’d interviewed said phantom pain felt a little like pins and needles).

Going “Method” the way actors do, to “get into character” is painful and time consuming. But for me, for A Time to Dance, it was worth the pain.

2. Play Party Tricks

Or, maybe the real lesson here is read, read, read. As part of the background research for A Time to Dance, I read V. S. Ramachandran’s Phantoms in the Brain. Ramachandran describes experiments you can do to experience something similar to an amputee feeling a “phantom limb.”

These experiments also work quite nicely as party tricks. For a while, whenever someone came home, I experimented (played this party trick) on them. I watched their expressions, noted their feelings, and of course made them do this experiment with me as the subject, too.

The end result? One of the women who’d had an amputation and kindly agreed to read my novel draft and give me feedback,  kept starting at my feet when I met her. Then suddenly burst out, “You’re two-legged! How did you know so well what it feels like to have Phantom pain?”

Is that a compliment, or what! I felt so honored and so humbled when she said that.

Author Padma Venkatraman
Author Padma Venkatraman

3. Interviewing is listening, not asking questions

As I wrote A Time to Dance, I interviewed numerous dancers, musicians, scientists, doctors, prosthetists (people who manufacture and fit patients with prostheses), and of course, people who had had amputations.

I started off with a sheet of questions, but soon realized that interviewing is not about asking the right questions. It’s about creating a bond of trust and then allowing the other person to open and up and listening, as well as you can, to what they share with you.

4. Be bold

Few novels explore a character’s spiritual awakening and growth — one of the main themes in A Time to Dance.

At first, this didn’t scare me at all. But sometime in the murky middle of writing the novel, I got cold feet for a while. Because I realized the reason why hardly any protagonist questions and learns about spirituality.

Writing about spirituality without religiosity is tough. It’s incredibly hard to write it well. What’s more, even if you do it well, it’s risky, because it’s not a fast-moving action-packed type of story, the kind of story most readers (young and old adults) gravitate towards, these days.

Luckily, I was strong enough to keep going and committed enough to Veda to tell that important aspect of the story. And one of the greatest rewards was the magnificent review a remarkably perceptive teen wrote of the novel, at LitUp reviews in which it’s clear that she loves the novel because of the depth it achieves through the exploration of spirituality.

5. Aspire to Achieve Agapé

Veda, in A Time to Dance, reconnects with the world after the tragedy in which she loses a limb. She becomes more compassionate and starts to share her gift with others as a dance teacher. She opens up enough to let romance into her life. And, as she grows, her love of dance deepens. She awakens to the power of her art and understands that dance isn’t about winning awards. Dance becomes, to her, a way to touch something spiritual.

I don’t write for external recognition and validation. But Veda isn’t a saint, and I’m no saint, either.

I’m ecstatic, elated, honored, humbled, pleased, proud, that A Time to Dance was released to starred reviews in Kirkus, Booklist, VOYA and SLJ. And what amazing reviews each of those was — I was moved to tears by each one of them.

And some of the other marvelous reviews the book got — online at LitUp reviews and in newspapers such as the Denver Post — also made me weep with joy. Because it feels like out there in the ether, there are some people who really, truly, “got” the book, and love my work.

But then, I keep reminding myself — and I hope I’ll never forget — that for me, as for Veda, art is and must remain a way to stay in touch with something above, beyond and vaster than my puny self.

I’m not sure I’ll ever lose the immense relief and gratification and sheer joy that I feel whenever my work is sincerely loved and praised. I even admit I yearn for even more recognition and even greater honors and awards than my work has already got.  I admit I think my work deserves and I hope it attains far higher levels of success, even though I feel incredibly grateful for all the blessings people have showered on me and my work thus far.

But, despite that rather materialistic craving that overcomes me every now and then, I know I need to nurture the deeper aspect of my love of writing.

Ultimately, I love writing the same way Veda loves dance. Writing is my art. Even if (heaven forbid) no one ever published my work again, I’d still keep on writing. Writing is my life.

So I never google myself or any of that. Instead, I try to stay centered, and write for and from that centeredness.

Because when I write, despite all I’ve said, I realize the books are like gifts given to me. I’m lucky I can transcribe the voices I hear in my head — and those voices aren’t “mine.” Stories possess me.  I don’t own the world of words.


A Time to Dance is now available. Find out more about Padma Venkatraman at her website.

Defining Disability

By Corinne Duyvis

I am autistic.

I remember vividly a time in art school when I mentioned this to a classmate. His immediate reaction: “Ha! I’ve seen autistic people. You’re seriously not autistic.”

It didn’t matter to him that I’d had to drop out of high school the year before, at fourteen, after years of problems directly stemming from my autism. It didn’t matter that I had a diagnosis, or that I fit so many symptoms that my mom and I had laughed reading the list together. No. My classmate had witnessed me at school and deduced: Not Autistic. When he told me that, scoffing, I had to excuse myself to the bathroom and wait several minutes to stop shaking.

Corinne Duyvis
Corinne Duyvis

Other people have long accepted that I’m autistic—but that doesn’t mean they see it the same way I do. My grandmother has done this. Once, I casually mentioned something or other about being disabled, and she almost seemed to panic. “What? You’re not—you’re not disabled!” I gently tried to explain to her that, actually, I was declared unfit to work, and it significantly impacts my day-to-day life, so . . .

“Yeah,” she said, “but you can walk!”

I tried to explain it to her further, but she was deeply uncomfortable with the topic, and quickly dismissed it.

Disability can be visible or invisible, debilitating or casual, and it’s impossible to define Once and For All. Definitions inevitably exclude people who want to be included. The opposite also holds true. Sometimes, you’re including people who don’t want to be. Some autistic and Deaf people don’t consider themselves disabled, simply different. Some elderly people who struggle to walk or hear don’t see that as a disability, but simply as a part of getting older. Some chronically or terminally ill people reject being called disabled, as well. Other people don’t consider themselves “disabled enough” to use the term.

Complex discussions regularly take place within the disability community about identity. These discussions deal with topics such as identity policing, internalized ablism, negative associations, appropriation, transablism, and much more. However important these discussions are, my advice to most people is: don’t define or police anyone’s disability status. It’s not the place or business of people who are not a part of the disability community.

Sometimes, however, we’re faced with the need to define disability for pragmatic reasons. For Malinda, it came up when she was looking at the representation of disabled main characters in the Best Fiction for Young Adults lists. For me, it comes up when moderating Disability in Kidlit. Which characters count? Who can contribute? Which conditions do we want to discuss?

When starting Disability in Kidlit, my co-moderator Kody Keplinger and I chose to include all the “obvious” disabilities, but also anything from mental illness to learning disorders to chronic conditions, which people with and without said conditions sometimes argue don’t “count.” We both know people with the above conditions who do identify as disabled, and they often suffer from exactly the kinds of erasure, misrepresentations, tropes, and stereotypes that we want to discuss and dismantle at Disability in Kidlit. A lot of hurt can come from defining people’s disabilities for them—particularly when it comes to conditions that are often excluded as it is. The broader we draw the line, the less chance of that happening.

That doesn’t make the decisions about which books to include on our lists clear-cut. Sometimes it’s easy to exclude a book, for instance when a character has a temporary injury. Other times, it’s trickier. After all, disability is not only defined by a character’s mental or physical condition, but also by society and circumstances.

Take a character who is legally blind, but wears glasses that correct her vision perfectly. She only notices her bad vision when she has to take off her glasses for bed. She probably doesn’t identify as disabled, because despite the need for assistive equipment, her vision causes minimal changes or discrimination in her daily life.

Now put this same woman in an apocalyptic world and smash her glasses. Write her into a fantastical or historical setting where they haven’t developed corrective lenses yet. All of a sudden, she’s blind. She’s disabled. Same character, same disability, different conditions.

What about people with ADD? People may qualify this condition as an issue, a quirk, a developmental disorder—but not necessarily a disability. For me, when I’m in the store and spend ten minutes staring at different kinds of soap and want to cry because I’m incapable of making a decision, or when I’m so caught up in the maelstrom of ADD indecisiveness and autistic obsessiveness that I stay up until 4 a.m. for a week straight to research insurance options or signing pens, and I’m exhausted, and my mind goes on and on and on, and I know I’m wasting time, I’m skipping meals, missing deadlines, ignoring family, but I cannot stop . . . for me, it’s a disability.

And depression—same thing. Many people with depression don’t identify as disabled. Many others do. What’s the difference? Does it depend on how long their condition lasts—a few months, a few years, a lifetime? Does it depend on how severely it impacts their day-to-day life? On how well their medication or coping mechanisms work for them? On their personal idea of disability, which for many people is a big, scary, and inherently negative concept?

What about someone with a limp that prevents them from climbing or hiking, but never hurts and barely impacts them? (And what about if this person lives in a small mountain village in which climbing and hiking are essential?)

What about a condition which rarely plays up, but is debilitating when it does? What about if someone lives in an idyllic, accessible, ablism-free society, where there is no difference between an inability to walk and an inability to drive? What about something seemingly minor—say, stiff fingers—but being a pianist is this person’s life’s work?

In real life, whenever possible, we can ask whether someone identifies as disabled. In fiction, it’s different.

There are no easy answers. Hopefully, this post addresses some of the complexities and helps people think about disability differently.


A lifelong Amsterdammer, Corinne Duyvis spends her days writing speculative MG and YA novels. She enjoys brutal martial arts and gets her geek on whenever possible. Her debut novel OTHERBOUND, a YA fantasy, is out from Amulet Books on June 17, 2014.

The Good

By Gretchen Schreiber

I met Cindy Pon at a dinner hosted by a mutual writer friend.  We fell into conversation and she mentioned the Diversity in YA tumblr she helped run.

When I approached Cindy Pon about writing something for Diversity in YA tumblr, I wasn’t sure what I should write about, but I knew I wanted to write something. It wasn’t until my friend and I started blogging our way through Wonder by RJ Palacio, that I even had an inkling of what I wanted to share with the world.  Wonder is about a boy with a facial deformity who goes to school for the first time and the bullying he faces because of his face.

Cindy’s response to my email was a) great and b) made me think about the way we write about disability. The last line of her emails was “there’s so little written…” It was in the ellipsis that I found myself stuck. Wonder paints a bleak picture of life as a disabled person and the ellipsis gets stuck in the bad as well.  There is so little written about disabled characters, particularly girls and particularly where the disability is natural—that is to say the character was born with it.  We’re writers, and we don’t like things to just happen. There must be a reason behind it. Most of the time, for people with natural disabilities, there is no more of a reason than your genes didn’t fire at the right time.

The … felt sad and while I was screaming at Wonder, it hit me, the world seemed confined to the sad story of disability. There was little to no “good” to be found. That is to say, there was no way anyone might think that being disabled could be cool or awesome or allow a person to do something totally rad that no one else gets to do. We don’t celebrate disability like other forms of diversity, even though there is a disability awareness month, people don’t talk about it. There’s no “disability is beautiful” campaign. No it gets better.  There are bitter truths to tell about hard to find dates or it doesn’t get better because people will always stare at you and they will teach their kids to stare. There’s a lot of negativity to get sucked into, but I want to focus on the things no one abled will probably ever get to do.  It is the ellipsis that you have probably never heard, because so few think to write about it.

This ellipsis is what I am calling: the good.

When people ask me about my life story, I know they expect a sob story. They want to hear about my dealings with bullying or my parents being blindsided by all that is me. Which trust me, I can recount both sad and tragic stories, but those brief blips on my life do not define me and are such a small part of my story. I realize these make great book fodder. There are emotional beats to it, a plot, and a lesson to teach at the end…

But it’s so confining and it takes 300 pages for you to realize that I am human and deserve to be treated as such.

I choose instead to tell friends how I ran the secret service ragged at age 9. How I played foosball with the mother of a president. I tell them about getting suckers out of nurses and demanding red wagons to go to surgery in, just like the book my mother read to me. All of these stories are true and are a direct result of my disability. They would never have happened without VACTERLs Association being a part of my life.

(VACTERLs is  an acronym that stands for:

V: Vertebral
A: Anal Atresia
C: Cardiovascular Anomalies
TE: Tracheosophageal fistula
R: Renal and/or Radial
L: Limb Defects

It is a genetic but not hereditary disease, meaning it was a problem in my genes not something that is passed down from a family member. A person need not have all to be counted as a VACTERLs person. Some doctors say you need 2 out of the 7, others say 3, and some doctors have no idea what you’re talking about and take you at your word.)

These stories have the potential for awesome stories as well. I mean how many 9-year-olds are exposed to the Secret Service so young? Hmmm?  Okay, so not everyone with a disability does this, but without it I would never have had the chance to try.

As a child, I ruled over a castle with underground passage ways, rooms of books and a limitless time to read in between appointments, chandeliers of twisting green and yellow blown glass, and art as far as the eye could see that I wouldn’t learn until later was the product of some of the masters of their craft.

Did I mention this magical, mystical place is was hospital? No, oh well, it was that too. A world with one foot firmly planted in science and another in art, creating a hybrid of the two. It’s a world waiting for exploration and kids with disabilities are your tour guides.

Invested in this good, is also just plain, ordinary good. I went to school, pre-K through my MFA. I celebrated 21st birthday, with the help of an extra large liver—yes, sometimes there are good side effects.  While I have yet to meet a boy who wants to “date” me, and I’ve never been kissed—lord the things I confess to the internet—I have had some amazing experiences in life that I wouldn’t trade for the world. I know my pain tolerance is higher than the average human, and if people annoy me I can easily gross them out and send them on their way real fast. Talking about pins through your arm attached to screws is a great way to get out of unwanted conversations.

I suppose if I could tell a writer anything, the story of a person with a disability isn’t any more of a sob story than any other person’s. We just happen to spend more time in a hospital and can speak doctor relatively well for never going to medical school. We adapt fast, smoothing over discrepancies between us and a world not made for us.  So when you fill out your cast of characters, dig a little deeper when including someone with a disability, they can take you places you’ll never forget and probably places readers have never been.

While the ellipsis at the end of Cindy’s email seemed sad, almost disappointed, think instead of what lies in that space. It’s easy to think of the bad, but I challenge you to think of the good and dig the story out from there.

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Gretchen Schreiber grew up between the hills of Kansas, and the hospitals of Minnesota. After earning her BA in Theatre Arts, with an emphasis on costume design, she went to graduate school as The University of Southern California. She graduated with an MFA in Producing for Film, Television, and New Media this past May. She lives in California where she writes full-time and works part-time to pay her bills.  She writes primarily fantasy driven projects about fairytales and questions of ability. You can find her on Twitter at @GretchSchreiber

On Writing “Breaking Glass”

By Lisa Amowitz

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Jeremy Glass, the main character from my YA paranormal mystery, Breaking Glass, is an alcoholic teen who loses his leg in the very beginning of the book. His journey is to solve the mystery of his missing love interest all while trying to figure out how to live as a former track star with a missing leg. I haven’t read many young adult books that deal with a life-changing injury like that.  Quite frankly, I was very nervous about portraying Jeremy genuinely and accurately, since other than my grandfather who lost his lower leg from diabetes in his later years, I did not know any amputees. My closest experience was the friendship I have with a disabled former student and her battle to be accepted as just a regular person. I did a lot of research, reading medical information, articles on the latest technology in prosthetics, phantom limbs and the experiences of amputees.

The subject of his obsessive one-sided love affair is Susannah Durban, a gifted and brilliant artist with issues of her own. Susannah, like Jeremy is half-Jewish, but her other half is African American. Unlike Jeremy, Susannah is totally obsessed with her roots and her past and it is up to Jeremy to piece together the clues she left behind after disappearing.

It never really occurred to me to limit my characters to any particular race, ethnicity, or able-bodiedness. As far as I’m concerned, everyone has a story to tell and I’m fascinated by all of it. My only issue is to make sure that I can tell their story genuinely—so I try to stick with those whom I am more familiar with.

I live and teach in the Bronx, New York, where diversity is really just a way of life. I am Caucasian, but I am also a secular Jew. I am not recognizably diverse, yet I do consider myself to be out of the mainstream—more of a “them” than an “us.” I work in a college where the vast majority of the student body can be classified as diverse.

The funny thing to me, is that diverse is really just another label. What does it mean, really? To me it means that you think another group of individuals is different because you are not that familiar with them—and to be diverse is to be misunderstood and lumped into one big blob by the “mainstream.”

One thing I learned in my many years of teaching is that though you may think you can plug people into generalized categories, the range of individuality of any segment of society trumps all. My students, though if you wished you might be able to fit them into neat little boxes, are all unique and fascinating characters with personal quirks, interests and talents that define them as individuals—I don’t really think of them in terms of their so-called label as “diverse.” They are so much more than that.

That being said, I do not think an author should limit herself to writing about mainstream able-bodied white people. I don’t live in that world, so why would I write about it? There are too many more interesting characters out there to explore. I’m interested in how a conflict, environment or circumstance impacts a character. I like to mix it up, kind of like seasoning a meal. I write the character and let them tell me who they are.

I hope I don’t come across as someone who insists that we as a society have completely overcome racism. It’s still a process that hopefully will keep progressing toward the day when we have. I just consider myself to be another foot soldier in the continuing battle for every single individual on this planet to be judged by their own particular merits and nothing else.

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Lisa Amowitz was born in Queens and raised in the wilds of Long Island, New York where she climbed trees, thought small creatures lived under rocks and studied ant hills. And drew. A lot. She is a professor of Graphic Design at her beloved Bronx Community College where she has been tormenting and cajoling students for nearly seventeen years. She started writing eight years ago because she wanted something to illustrate, but somehow, instead ended up writing YA. Probably because her mind is too dark and twisted for small children. Visit her website at: http://lisa-amowitzya.blogspot.com/