Day Al-Mohamed: Diversity in Single Serving Slices

Day Al-MohamedDay Al-Mohamed is author for the novel “Baba Ali and the Clockwork Djinn: A Steampunk Faerie Tale,” written with Danielle Ackley-McPhail.  Day hosts the multi-author blog “Unleaded: Fuel for Writers” and edited the anthology, “Trust & Treachery,” just released May 1st, 2014.  In addition to speculative fiction, she also writes comics and film scripts.

Her recent publications are available in “Daily Science Fiction,” Crossed Genres anthology “Oomph – A Little Super Goes a Long Way,” Sword & Laser, and GrayHaven Comics’ anti-bullying issue “You Are Not Alone.”  She is an active member of the Cat Vacuuming Society of Northern Virginia Writing Group, a member of Women in Film and Video, and a graduate of the VONA/Voices Writing Workshop. She can be found at @DayAlMohamed.


Earlier this year, Disability in Kidlit asked its contributors the following question:

Why is it that diversity in young adult, middle grade, and children’s literature is often represented as an either/or, without intersectionality? Characters can either be autistic or gay, for example, or a wheelchair user or Black, but rarely both. Why do you think we see so few characters who are marginalized in more than one way?

We thought Day Al-Mohamed’s response required its own post …


I love this question and thank you for asking it!  I want to take a moment to begin with the idea of identity and advocacy and movements.  So, political messaging aside, during President Barack Obama’s speech on his second inauguration he referenced several historic civil rights movements; he referenced Selma, he referenced Seneca Falls, and her referenced the Stonewall riots.

When the world talks about rights and identities, these discussions have been shaped by their history and, in general, when examining these rights movements, while parallels and comparisons have been made, they are still described as separate struggles.  And the sad thing is, by the discourse taking that track, it inevitably erases those individuals who have more than one identity. Whether intentional or not, individuals find themselves relegated to one identity over another finding themselves never fully able to hold close all parts of themselves.

In an article from Britney Wilson, “Black, Female, and Disabled: The Disintegration and Continuation of Struggle” and her experience at a historically black college and university (HBCU) she said,

As I sometimes imagine many black women must have felt during the Civil Rights Movement and Black Liberation Struggles, I realized that my identity consisted of more parts than I had previously allowed myself to admit, and that I had my own issues to consider that were not being addressed. I was not necessarily black or a black woman first anymore because a lack of plans and accessibility problems forced me to acknowledge that while black and black female empowerment oozed from every corner and crevice of campus, I was still in the minority when it came to my disability. [emphasis added]

This seems to be a case where art imitates life, or to be more accurate, a case where art imitates the perception of life. People are perceived as being gay or autistic or black and usually one of those identities is the “defining” one.  If we are already seeing the “real world” in this sort of compartmentalization, seeing it in fiction becomes a natural outgrowth of these assumptions.   Assumptions that if you are, as an example, autistic and Black, the former “trumps” the latter and the story and/or characterizations will highlight that, ignoring completely how family, culture, society, and other environmental factors impact how that individual engages with others and the world around them.

And of course this comes full circle as the depiction in the media and in fiction of specific subpopulations affect public perceptions, which ultimately have a real impact on people’s lives every time their fate depends on how they are perceived by others.[1], [2]

Just as we strive for accuracy in depicting disability in “kidlit” and we engage with advocacy that supports the need for greater diversity (#WeNeedDiverseBooks) in fiction, it is just as critical to recognize that “diversity” doesn’t live in a vacuum, or necessarily exist on its own, like singles slices of American Cheese – individually wrapped. 🙂 We are the sum of our experiences and influences. We are more than a single defining factor.

And that isn’t easy.  Everything we see in the world, even our own psychology, likes “neat and tidy boxes,” our politics and perceptions, and even fiction teaches us to categorize and simplify.  So when it comes to writing we have to be willing to examine, with suspicion, our own character creation and world-building. We should always be able to “Walk all the way around a character.”  That means working hard not to fall into the traps we have been taught. We lament two-dimensional characters in fiction.  Embracing that characters, just like people can have multiple identities and even conflicting feelings about those identities, as well as how that impacts how the world responds to them is a part of good writing, not just diverse writing.


[1] Dong, Q., & Murrillo, A.P. (2007). The Impact of Television Viewing on Young Adults’ Stereotypes Towards Hispanic Americans. Human Communication, 10 (1), 33-44.

[2] Entman, R.M., & Gross, K.A. (2008). Race to Judgment: Stereotyping Media and Criminal Defendants. Law and Contemporary Problems, 71 (93), 94-133.

Corinne Duyvis: The Mystical Disability Trope

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


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

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

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

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

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

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

(And on and on.)

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

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

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

Dinah Bellman from The Langoliers.

Little Pete from Gone.

Kazan from The Cube.

Gabriel from FlashForward.

Kevin Blake from Eureka.

(And on and on.)

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

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

John Coffey from The Green Mile.

Jake Bohm from Touch.

Lil’ Bro from NYX.

Duddits from Dreamcatcher.

River Tam from Firefly.

(And on and on.)

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


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

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

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

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

Lyn Miller-Lachmann: Defined By Others

To wrap up our anniversary month, here’s an article about the importance of letting people speak for themselves–an important guideline here at Disability in Kidlit–written by author Lyn Miller-Lachmann. To make things even more exciting, we’re giving away a signed hardcover of Lyn’s book Rogue! Details at the end of the post.


Lyn Miller-LachmannLyn Miller-Lachmann is the former editor-in-chief of MultiCultural Review and the author of resources for educators and fiction for teens. Her young adult novel Gringolandia (Curbstone Press/Northwestern University Press, 2009), about a teenage refugee from Chile coming to terms with his father’s imprisonment and torture under the Pinochet dictatorship, was a 2010 ALA Best Book for Young Adults and received an Américas Award Honorable Mention from the Consortium of Latin American Studies Programs. Its forthcoming companion, Surviving Santiago (Running Press, 2015), portrays a 16-year-old girl’s journey to Chile to visit her estranged father and her dangerous romance with a local boy. Lyn is the author of Rogue (Penguin/Nancy Paulsen Books, 2013), a Junior Library Guild selection about a girl with undiagnosed Asperger’s syndrome and an X-Men obsession, in search of a friend and her own special power. When she isn’t writing fiction, Lyn is the co-host of a bilingual program of Latin American and Spanish music, poetry, and history on WRPI-FM, a blogger, and a Lego builder. She reviews children’s and young adult books on social justice themes for The Pirate Tree. For more information and cool Lego pictures, visit Lyn’s website.


People with disabilities often encounter situations where we are not allowed to speak for ourselves. For instance, restaurant servers may ask a companion what a person in a wheelchair, or with a visual or hearing impairment, would like to eat, rather than asking the person directly. This is just one example of what people with disabilities, people of color, and other marginalized peoples encounter on a regular basis. Due to their privilege, some people believe they have the right not only to speak for those of us on the margins, but also to depict and define us. And when privileged outsiders define us, they often do so out of ignorance, self-interest, or malice, and their versions of ourselves, rather than our own realities, become the norm.

As someone diagnosed with Asperger syndrome, I have experienced this first-hand. Over the past decade, books and other media depictions of people on the autism spectrum have proliferated. While Temple Grandin and John Elder Robison, both diagnosed on the autism spectrum, have published acclaimed memoirs for adult readers, fiction for children and teens with protagonists and major secondary characters on the spectrum is predominantly the work of outsiders. (I would consider neurotypical parents of children on the spectrum to occupy an in-between position, but one with its own baggage.)

I approach each new book written by outsiders with trepidation. These books tend to define us by our disabilities rather than showing us living our lives day-to-day. Because I wasn’t diagnosed until adulthood—the Asperger’s diagnosis didn’t exist in my youth—I thought of myself as someone who had different interests from my peers and few friends as a result, but I was not a compilation of stereotypical traits. Nor was learning to accept my difference my core desire. (My desire as a teenager was to get into a prestigious college and leave the narrow, conservative community where I grew up.) Outsiders who haven’t lived the life but who base their stories on book research are especially vulnerable to writing characters defined by their disabilities.

Problematic portrayals of children and teens with autism written by outsiders (and baggage-laden parents) have won major awards and become the canon, often helped by their writers’ superior publicity and marketing skills. As part of the canon, these books determine how teachers and librarians view their students on the spectrum and what those students may or may not be capable of accomplishing. These books affect the image young people on the spectrum have of themselves. Some portrayals that I have read have left me feeling humiliated—such as when a fictional child similar to me spends two days trying to cut down a huge oak tree with a coin because she takes something too literally. I know what classmates not on the spectrum would have said to me had they read that scene in class. (It would have involved the “r-word.”) In this way, exaggerated and stereotyped portrayals meant to combat bullying make the bullying worse. Always portraying children and teens with Asperger’s taking everything literally (contrary to popular portrayals, we usually do figure out idioms pretty quickly) invites cruel pranks, which I have suffered as much in our supposedly enlightened and aware times as when I was growing up. Finally, when outsiders’ inauthentic and insensitive depictions are lauded as authentic and sensitive, the stories I tell, even if based on my own life, are seen as inauthentic if they fail to conform to the canon. I watch helplessly as my experiences and feelings are denied, and my truth is no longer the truth. I have essentially been defined by others—as have my characters on the spectrum.

Do cultural outsiders have the “right to write” about us? Only if they are genuine allies, have done their homework, ask us to vet their work—and act to increase opportunities for us to tell our own stories. If you are writing a book that features a major character with Asperger’s, I would appreciate your listening to me and telling your story with thoughtfulness and humility. I would also appreciate your support as I try to find my own place as a writer.


Cover for ROGUEKiara has Asperger’s syndrome, and it’s hard for her to make friends. So whenever her world doesn’t make sense—which is often—she relies on Mr. Internet for answers. But there are some questions he can’t answer, like why she always gets into trouble, and how do kids with Asperger’s syndrome make friends? Kiara has a difficult time with other kids. They taunt her and she fights back. Now she’s been kicked out of school. She wishes she could be like her hero Rogue—a misunderstood X-Men mutant who used to hurt anyone she touched until she learned how to control her special power.

When Chad moves in across the street, Kiara hopes that, for once, she’ll be able to make friendship stick. When she learns his secret, she’s so determined to keep Chad as a friend that she agrees not to tell. But being a true friend is more complicated than Mr. Internet could ever explain, and it might be just the thing that leads Kiara to find her own special power.


Lyn has generously donated a signed–and if desired, personalized–hardcover of Rogue be given to one of our followers. To enter, simply leave a comment here on WordPress or reblog our Tumblr post. (Yes, doing both increases your chances!) In one week, we’ll select a single winner from one of these locations to win the book. This giveaway is limited to North American addresses.

The winner has been selected, and the giveaway is over. Thanks for participating!

Cece Bell: Chapter 9 of EL DEAFO Almost Wasn’t–Here’s Why

Cece BellCece Bell lives in an old church with her husband, author Tom Angleberger, and she works in a new-ish barn (by herself). She has written and illustrated several books for children, including the Geisel Honor book Rabbit & Robot: The Sleepover; some of her other works include Itty Bitty, Bee-Wigged, the Sock Monkey series, and the illustrations for Crankee Doodle (written by Tom). She still wears behind-the-ear hearing aids, and wishes that people in restaurant settings would come equipped with closed-captioning!


I’m very excited about the release of my graphic novel memoir, El Deafo. I’m also kind of nervous about it. I worry about what other deaf people will think of the book. Here’s one of the reasons why:

I lost my hearing to meningitis when I was four and a half years old. I was lucky to have a little bit of time as a hearing person to acquire some language, because as soon as I lost my hearing, communication with my family and friends became really, really tricky.

The summer after everything changed, my parents enrolled me in a kindergarten class for deaf kids, and that decision became the basis for how I dealt with—and still deal with—my deafness. In the class, we were taught how to lip-read. I describe this in the book. However, something that I don’t talk about directly is that our teacher did not teach us any sign language. At all. Zero. It was 1975, and whether it was the thinking of the time or the particular reasoning of that school system (or both), lip-reading was in, and sign language was out.

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But lip-reading is not always easy. Success in lip-reading depends on so many factors: who is talking, how familiar you are with the person talking, where the person is talking, how animated the person is while talking, the presence or absence of background noise and distractions and light, and on and on. Writing El Deafo made me realize that I wish I had learned sign language when I was in kindergarten, before I became so self-conscious about everything to do with my deafness. Perhaps learning both lip-reading and sign language would have helped me and my classmates communicate more comfortably than we could with lip-reading alone. But after kindergarten, I was good enough at lip-reading to go to school with hearing kids, and suddenly I was the only deaf kid in my class. No way was I going to do anything that made me different—it was bad enough that I looked different because of my enormous hearing aid. If I was using sign language, everyone would have stared at me even more, right? Oh, such faulty reasoning, especially since I was probably already getting stares. So I never learned how to sign, not even when my well-intentioned mother gave me an opportunity to do so. Over the years, I got better and better at lip-reading, and felt less and less inclined to learn to sign.

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The toughest chapter to write in El Deafo, by far, was the chapter in which I reject sign language. I initially hesitated to write it because I didn’t want to admit to the world, and in particular other deaf people, just how much I really and truly hated sign language when I was a kid. It is a terrible and unsettling thing to admit, but ultimately I decided to include my sign language story because I needed to be truthful to my unique experience of deafness. The book would not be complete without it.

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I sincerely hope that this chapter adequately explains the reasons for my mixed-up feelings about sign language, even if those reasons were irrational—and I also hope that I accurately portray just how bratty I was about it. It’s all true, including the last pages of the chapter, in which I witness two adults arguing in sign language. They weren’t interpreting a song in sign language like we sometimes did in music class (corny!), or following me around spelling my name with their hands the way some of my classmates did (annoying!). They were communicating. I was more than impressed, I was jealous. But not enough to actually do something about it. I was still too worried about being “different” from my hearing classmates.

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The irony of all of this is that my absolute favorite people to talk to—because they are easy to understand—are the animated folks who make grand gestures when they speak, who “talk with their hands.” Isn’t talking with your hands what sign language really is, after all?

So, to all the deaf kids and the deaf adults who use sign language and who might read El Deafo: please know that I have nothing but respect and admiration for sign language and for those who use it. I sincerely hope that you will not be offended by the sign language chapter in the book. And I also hope that if we meet, you might teach me a bit.

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El Deafo coverGoing to school and making new friends can be tough. But going to school and making new friends while wearing a bulky hearing aid strapped to your chest? That requires superpowers! In this funny, poignant graphic novel memoir, author/illustrator Cece Bell chronicles her hearing loss at a young age and her subsequent experiences with the Phonic Ear, a very powerful—and very awkward—hearing aid.

The Phonic Ear gives Cece the ability to hear—sometimes things she shouldn’t—but also isolates her from her classmates. She really just wants to fit in and find a true friend, someone who appreciates her as she is. After some trouble, she is finally able to harness the power of the Phonic Ear and become “El Deafo, Listener for All.” And more importantly, declare a place for herself in the world and find the friend she’s longed for.

Coming September 2, 2014, from Amulet Books/ABRAMS.


Thanks so much for sharing, Cece!

Amulet Books has generously donated an ARC of El Deafo be given to one of our followers. To enter, simply leave a comment here on WordPress or reblog our Tumblr post. (Yes, doing both increases your chances!) In one week, we’ll select a single winner from one of these locations to win the book. This giveaway is limited to US addresses.

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

Kody Keplinger: The Beautiful Tragedy

Kody KeplingerKody Keplinger is the author of three books for teens: The DUFF (Designated Ugly Fat Friend), Shut Out, and A Midsummer’s Nightmare. Her first middle grade novel, The Swift Boys & Me, was released by Scholastic on May 27. Currently, Kody lives in New York City with her guide dog, a very upbeat German Shepherd named Corey. When she isn’t writing, Kody teaches writing workshops and spends a lot of time eating Thai food, marathoning Joss Whedon’s TV shows, and vlogging. You can find her on TwitterYouTube, and her website.


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

UGH.

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

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

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

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

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

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

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

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

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

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

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


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

But then everything changes overnight.

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

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

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

Marieke Nijkamp: The Trope of Curing Disability

Marieke NijkampMarieke Nijkamp is a dreamer, avid tweeter, and proud-to-be geek with degrees in philosophy, history, and medieval studies. In the midnight hours of the day she is a storyteller, represented by Jennifer Udden at the Donald Maass Literary Agency. Marieke is one of the founding YA Misfits and founder of DiversifYA, an inclusive community where people share experiences, in the hope that all of us who write will realize the world is much bigger than our little patch of earth. That we are diversity, and that one day our stories will reflect that.

Growing up, one of my favorite classic children’s book was Frances Hodgson Burnett’s THE SECRET GARDEN. One of my favorites, I think, for two reasons. One, an ancient house on the moors and a secret walled garden? WANT. Two, a bed-ridden, disabled boy.

As a mostly bed-ridden, disabled girl, I—surprisingly—identified with Colin more than with most able-bodied characters in most books (which, up until that point, formed about 99,99% of what I read, because frankly, it was and is surprisingly hard to find disabled characters). Sure, he was angry and unlikeable and pitiable, but at the very least he wasn’t the villain. Progress, right? Besides, I loved the idea of him going out and making friends and creating his only little piece of world.

That feeling of identification lasted right up until the point where he got out of his wheelchair and threw off his disability.

Now in Colin’s case, it might be argued that he was never disabled at all, just weakened and made ill, but to me, it felt like a betrayal. Again. He wasn’t the first character I met who overcame his hardships and was miraculously cured, and he wouldn’t be the last one either. In fact, for disabled characters, being cured is a common trope. What’s more, in most of these narratives, classics as well as recent kidlit, the characters are cured because they’re better than they were at the start of the book: kinder, gentler, braver. And finally, finally, they’re normal and whole.

And quite frankly, that trope needs to GTFO.

First of all, because obviously, we can’t always be cured. We can’t magically regrow limbs, or defy paralysis through sheer willpower. There are no wonder pills to get rid of an extra chromosome, and the magic world isn’t open to us Muggles.

But surely, I hear you say, if a cure were available (let’s pretend I’m talking about a panacea here), everyone wants it? Well, no. This is a very personal issue, and one of much debate within the disability community. We don’t always want to be cured.

Speaking from my own experience, I’ve seen the cure discussion from two sides. When it comes to my physical disability (a combination of several autoimmune disorders), I’m incredibly grateful that there are medicines out there that allow me to function and manage my chronic pain. Days that are completely pain-free are rare, but at least my current meds take the edge off, and with that in I can manage. Sure, some days I think a cure would be nice, but it’s not one of my priorities in life.

When it comes to my Asperger’s, I would categorically deny any form of cure. To put it bluntly: this is the way my brain works, and for all that there are challenges, there are enormous upsides too. This is the world I see and the world I’ve built for myself, and you don’t get to mess with that.

Does that mean no one wants to be cured? Of course it doesn’t. Plenty of people do, and that’s their good right. But I’d still feel confident in saying most of us don’t think about cures on a daily basis (or, in fact, about our disabilities). After all, this is our normal. This is who we are. And we can be perfectly happy just the way we are, thank you very much.

TV Tropes kindly points out that, “if the only happy ending the writers can imagine for the character is to magically lose their disability, this could be a little depressing for disabled people living in the real world.” And sometimes, it is. Not because we can’t be cured. Not because we won’t be cured. But because it means we aren’t recognized as people but only as labels, not as characters but only as characteristics.

And because, really? Is that really the only possible happy ending? How about a happy ending wherein we get the girl (or boy)? How about a happy ending that lets us save the world? How about a happy ending that involves us staying disabled? Is that so hard to imagine?

I don’t have to be cured to be happy. I don’t have to conform to the physical notion of perfection (whatever that is) to be a whole person. I don’t feel physically better when I’m kinder, gentler, braver. Nor am I evil because my legs don’t always work.

Most of the time, at least.

Because fair warning, I might go on a rampage the next time I see a miracle cure in my kidlit.

Caitlin Mongillo: Fitting in and Standing Out

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


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

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

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

****

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

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

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

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

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

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

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

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

***

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

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

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

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

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

s.e. smith: ‘Don’t Worry, It’s Fine When It Happens to Crazy People!’

s.e.smiths.e. smith is a writer, agitator, and commentator based in Northern California, with a journalistic focus on social issues, particularly gender, prison reform, disability rights, environmental justice, queerness, class, and the intersections thereof, with a special interest in rural subjects. International publication credits include work for the Sydney Morning Herald, The Guardian, and AlterNet, among many other news outlets and magazines. smith’s writing on representations of disability in science fiction and fantasy was recently featured in The WisCon Chronicles, Volume 7. Assisted by cats Loki and Leila, smith lives in Fort Bragg, California. You can follow s.e. on Twitter, ou personal site, Goodreads, and lots of other exciting places online.


As a mentally ill reader, one of my most pressing frustrations when reading YA, or interacting with any pop culture, is the handling of mental illness. Mental illness is frequently dealt with in very troped, and often harmful, ways, illustrating that creators didn’t take the time to research, learn about the lived experiences of the communities they are writing about, or think about the responsibility involved in depicting mentally ill people, an already marginalised group within our larger culture.

To be crazy is to be dangerous, and not necessarily to yourself or others. Mental health diagnoses are used as a tool for power and control, to silence people, to take their children away, to deny employment and benefits, to abuse people, to threaten people. Mentally ill people, like others with disabilities, are highly vulnerable to abuse and exploitation.

Somewhat uniquely, though, this is a disability that hits adolescents and teens particularly hard, because mental illness often onsets around this age. Unlike other disabilities, which may be congenital or acquired at any age, and thus can play an emergent role in any stage of life, mental illness is often something people grapple with for the first time in their teen years (though younger people can and do have mental illnesses). The fiction they’re interacting with at the time can have a profound effect on how they deal with their diagnoses, and unfortunately, that fiction often sends very negative messages.

The onset of mental illness doesn’t happen like flipping a switch; you will not wake up one morning and suddenly be crazy. Instead, it happens by stages, often so subtly that you may not fully realise what is happening to you. You don’t understand why you’re getting increasingly tired, everything is hard to do, and you’re losing the will to get out of bed. You don’t see any reason to go on living. There’s a voice in your head compelling you to do something—and warning you not to listen to other people who tell you the voice in your head isn’t there. You’re bounding with abundant energy, you can take on the world, you don’t need to sleep or rest EVER AGAIN! Everything makes you cry and you feel like the entire world is fracturing around you. You trust no one, and everyone is obviously out to get you.

These are just some of the many symptoms youth can experience at the onset of mental illness. Often, they happen late in high school and early in college, when people are trying to live independently and may be afraid or unwilling to reach out. Thanks to tropes and stereotypes about mental illness, and the stigma associated with mental health conditions, people who think they might be sick could be reluctant to seek help, and they may not even recognise what they’re experiencing as mental illness.

After all, OCD is when you’re super particular about your kitchen, right? So compulsively washing your hands, needing to check and recheck and recheck your doors, or being constantly worried about leaving the stove on isn’t OCD. You’re not sure what it is, but you definitely don’t have a treatable mental health condition. And schizophrenia is when you have a split personality, right? So experiencing a break with reality, not being sure about what is real and what is not, that’s definitely not schizophrenia—besides, schizophrenia is scary and it only happens to crazy people, like that freaky homeless guy by the post office.

So we come to mental illness in YA, which is often depicted in very stereotyped and inaccurate ways; like TV OCD, as I affectionally (and bitterly) call depictions of OCD on television, the handling of mental health conditions in YA often leaves much to be desired. It reflects the fears and imaginations of the author, rather than the reality of the mental health condition, and it is perhaps not surprising that the best examples of mental illness in YA come from authors who have experienced it themselves.

One of the most troubling things about the way mental illness is handled in YA is that, as in society, it is framed as something inherently wrong and awful, rather than a simple fact of life. It’s estimated that around 20% of people will experience mental health conditions at some point during their lives, making them extremely common—and breaking down stereotypes about them would make it a lot easier for people to seek treatment.

There are two recurrent tropes around mental illness in YA that particularly trouble me, beyond falsities in the depictions of specific mental health conditions. One is the character who thinks she’s mentally ill who later realises she has superpowers. The underlying message here is actually a kind of interesting one: here’s a protagonist experiencing something totally unfamiliar, scary, and alien (which the onset of mental illness can feel like) who doesn’t know how to handle it…but then it usually gets twisted, and she is afraid she’s crazy, because being crazy is bad.

Maybe she has a mentally ill family member or friend who has exposed her to the ‘horrors’ of craziness. Maybe she’s institutionalised, either mistakenly or with malice by another character who wants to keep her from accessing her powers. In all cases, the takeaway is that being crazy is definitely not okay, but having superpowers, of course, is awesome.

What’s notable about this, other than the underlying assumption that being crazy is wrong, is that this is never actually challenged in the narrative. Never once does the protagonist ask herself what would be so wrong about having a mental health condition, and rarely do we see her exploring treatment and management options. Instead, she flails in terror until she finds out she has superpowers, at which point everything is usually fine again, except more awesome, because superpowers.

What’s the difference between being crazy and having superpowers? Why is one good, while the other is not? Why do we consider one to be a condition that must be managed in a particular way, and the other something that people should be trained to use and then harness for good? Picking apart these distinctions is critical for authors who want to explore storylines like this, because while ‘woah, I think I am going crazy’ may be a legitimate response to seeing things others don’t, appearing to experience a break with reality, and appearing to alter the world around you, the followup response shouldn’t be ‘how terrible, now I am a crazy person! Oh no!’

Similar narrative structures take place within the framework of institutionalisation, where the asylum is framed as something horrifying and awful…for sane people. When we see institutions in YA, we usually see them crop up in one of two contexts: a sane person wrongly incarcerated in one, or a spooky (often old, sometimes abandoned but haunted by ghosts) asylum filled with crazy people. Asylums are scary because they are filled with crazy people, and our protagonists don’t belong in them because they are sane, healthy, ‘normal,’ not people who should be wrongfully trapped in among the dangerous, frightening, traumatic mentally ill people.

Never once is the concept of the asylum challenged, or is the larger discussion about institutionalisation and oppression incorporated into the narrative. Members of the mental health community might also argue that some asylums are bad and scary, but for a very different reason. The problem with mental health facilities isn’t that they are filled with people who need treatment, but with the fact that residential institutions have a long and horrific history of patient abuse, experimental ‘treatments’ amounting to little more than torture, and a host of other problems. Historically, asylums were used as a tool to suppress and confine people, and today, some are used for much the same purpose, right down to purposefully overmedicating people to keep them compliant. Victims of sexual assault, physical abuse, and other indignities in asylums are often prevented from reporting, or mocked when they try to report.

These are horror stories, but they aren’t the horror stories we usually see when it comes to talking about mental health facilities in YA. Instead, these facilities are cast in simple terms: they’re okay for crazy people, but not for ‘everyone else.’ This idea is common with the handling of mental illness and disability in general, that treatment as a second class is acceptable for ‘them’ because it’s simply part of how the system works and it always has been. Thus, YA rarely challenges the fundamental assumption that institutionalisation is an acceptable and productive way of dealing with mental illness and mentally ill people; it doesn’t explore the warehousing and torment of human beings that occurs in long-term facilities.

When we see positive, mental illness-centered depictions of institutions, it’s usually inpatient hospital wards in issue books where people are sent for ED or suicide attempt recovery. While both depictions are vitally needed, they need to be balanced with the fact that psychiatricisation and institutionalisation have been used as abusive tools against not just mentally ill people, but also women and people of colour, for centuries. When I see asylums promoted as a positive good (and authors failing to distinguish between, for example, a highly ethical inpatient ward in a modern hospital and a long-term residential care facility), I see yet another reminder that society believes mentally ill people are best when locked up, hidden away from public view, ‘in treatment,’ no matter what that ‘treatment’ might look like.

How can authors avoid these tropes, and others associated with mental illness? Obviously, research, research, research, and interacting directly with members of the mentally ill community, including those with the specific diagnoses being depicted, such as anxiety disorders. It’s critical to talk to more than one person, as well, because mental illnesses are highly variable, and diagnostic creep means two people with the same diagnosis may have radically different symptoms, just as two people with very similar symptoms might have totally different diagnoses. And remember that even someone with a well-managed mental illness has bad days, because sometimes, disability really sucks.

Want to avoid problems with characters who mistake the onset of supernatural powers for mental illness? Think carefully about what you’re saying, how you’re saying it, and how you’re interacting with the character. Talk to people about their onsets of mental illness and the emotions that swirled around them, so you can depict your character’s fear, uncertainty, and nerves accurately, but avoid falling into the trap of suggesting that developing a mental illness is a negative thing. Explore how people define ‘normality’ through the depiction of your character, and ask yourself: how awesome are superpowers, really?

Are there days when your character has trouble functioning because of her superpowers? When she’s frustrated because she feels like she can’t manage them? Instead of inadvertently turning superpowers into a bright, shiny alternative to disability, make them come at a cost; not only will you avoid some painful disability tropes, you’ll also make your book more engaging by raising the stakes and creating more tension for the character.

Planning to include a mental health facility in your book? Do. Your. Homework. Talk to people who have been institutionalised about the care they received, where they received it, and their experiences in the mental health system. Someone who was on suicide watch for two days in a hospital has a very different story from someone who was on an adolescent psychiatric ward for several weeks or months. Someone who stayed at a residential facility (or who lives in one) for an extended period of time has yet another experience to narrate.

Psychiatric facilities are as diverse as snowflakes, running the gamut from those that provide patients with maximum support for developing coping tools and techniques, managing their mental illnesses, and living independently, to abusive nightmares that are everything you imagined and worse. If you’re depicting one, don’t forget about the other, and don’t fall into the trap of thinking that all institutions are horrific dungeons of abuse or fairylands of supportive staff, and never forget the long and complex history of psychiatric facilities.

Above all, remember that being crazy is not a bad thing. Don’t attribute negative or undesirable behaviours to mental illness, or excuse a character’s unacceptable behaviours to mental health diagnoses. Like other disabilities, mental illness should be value-neutral: it’s a trait some people have and other people do not, and we all interact with it in very different ways.

Emily Ladau: Representation Matters

Emily LadauEmily recently graduated summa cum laude with a B.A. in English from Adelphi University on Long Island, New York, where she was born and raised. This past summer, she completed an internship at the Association of University Centers on Disabilities (AUCD) under the auspices of the American Association of People with Disabilities (AAPD) internship program. Emily is a passionate self-advocate and is pursuing a career in which she can use her communication and love of writing as a means of positive change for all disabled people. You can follow Emily on Twitter and check out her blog on disability issues and lived experiences with her disability, “Words I Wheel By.”


My parents raised me to be a voracious reader. Some of my favorite memories of growing up involve hearing bedtime stories as I drifted off to sleep, learning to read chapter books by myself, and filling my bookcase to the brim with my hauls from Barnes and Nobles. Because of this, I have always found joy and comfort in getting lost inside someone else’s reality, immersing myself in the lives of the characters unfolding in the pages of my book. Part of the fun came from finding connections between my lived experiences and those occurring in the stories I was reading. However, there was always a huge part of my life that was almost never reflected back at me in the children’s book characters I grew to know and love: having a disability.

So many of my favorite childhood books had morals and lessons about accepting people for who they are, but characters with disabilities were few and far between. It was always another reminder that I didn’t quite fit the cookie cutter traits used by so many children’s authors when I was growing up in the early 1990s. Themes of diversity were only just starting to gain momentum at that time. And even then, I can only recall seeing disabled kids in specialized genres.

In fact, the only two children’s books I owned that featured kids with disabilities, both of which I still have, are Andy Finds a Turtle and Patrick and Emma Lou by Nan Holcomb, published by Turtle Books. Emma Lou has spina bifida, and both Andy and Patrick have cerebral palsy. Each book centers on triumphing in the face of disability. And while I loved those books and read them until they were well worn, they were isolated instances of disability in children’s literature. A true sense of inclusion was missing.

Twenty years later, I notice that children’s book sections in libraries and bookstores are inundated with examples of diversity. The shelves are filled with titles promoting acceptance of all races, religions, abilities, sexual orientations, and family structures. It makes me wonder, though: why was I denied the chance to feel included when I was little? And is enough being to done to change that for disabled people now?

What concerns me is that disabled characters are often integrated in the form of tokenism, meaning one token character that could be considered “different” is included in the plot. And even then, such characters are frequently depicted in stereotypical ways, despite being created by authors who may have the best of intentions.

I find this not only in children’s books but also in adult literature. I’ve spent so much of my life missing accurate reflections of my reality in the books I read. From the bedtime stories of my younger years to the ever-growing collection of novels I’ve amassed in my adult years, disability is rarely represented well, if at all. After so many years of reading, I’ve grown weary of this.

There is an incredibly misguided and oversimplified assumption made by many authors that disability is negative, so they either use it as a literary device or avoid including it altogether. Once, I was asked why I’d even want more disability representation in what I read if I choose to look at reading as an escape or a relaxing break from reality. I don’t see my disability as something unfortunate that I want to escape. Perhaps I may want to escape emotional or physical issues related to my disability, but it is inherently part of me – and I’m proud of it. So, to have disability reflected back at me as an unfortunate circumstance, as something that needs fixing, or to have it seem as though disability just shouldn’t exist in a perfect literary world, makes reading the opposite of an escape at times. Instead, it makes reading another reminder of the ways in which disabled people are still not accepted and included.

I’d love to see inclusion of disability in literature become less about morals or tokenism and instead become a seamlessly integrated aspect of literature for audiences of all ages. I know there are authors out there who work tirelessly to overcome misrepresentations and the lack of disabilities in both children’s and adult literature, and theirs is the writing I will continue to seek out to fill my bookshelves.

Kayla Whaley: All About Logistics

Kayla WhaleyKayla Whaley has a BA in political science and is currently finishing her Master’s in Public Administration with an emphasis in nonprofit management. She interns for the Atlanta Young Writer’s Institute. Her bookshelves consist almost entirely of kidlit and she writes YA fantasy and contemporary.

Kayla was born with Spinal Muscular Atrophy III, a neuromuscular disease, and uses a power wheelchair.


When talking about my disability, I like to emphasize that while my life is in many ways different than the abled, it’s by no means worse or lessened in any way because of it. I want to re-emphasize that disclaimer for today’s post.

I’ve talked a lot about the ways my disability has affected my body image, my sexuality, my confidence, my social interactions, etc., and all of those things are important to consider when writing a disabled character. But today I want to focus on the ways my disability affects the logistics of my life. I obviously do not speak for all wheelchair-users (as with all disabilities, there is a LOT of variation from person to person), but hopefully this will serve as a good starting point for anyone writing a wheelchair-using character.

Getting ready for the day tends to be when my actions vary most from the typical. Growing up, my parents helped me with these things; in college, when I lived on my own, it was my personal care attendant. For ease, I’m just going to say “carer” here, because the routine stays the same.

Getting out of bed: The first step in any morning is to get out of bed. Simple for most people, but a tiny bit more involved for me. My carer wakes me (one of the benefits of my disability is that I have a human alarm clock, which is much more pleasant than a BEEP BEEP BEEP), and pulls the covers down. I sleep on my right side, mainly because any other position is painful, so my carer rolls me onto my back and onto the sling they’ve placed behind me. I tell them how and where to move me so I’m comfortably centered in the sling. Then they push the medical hoyer lift we use so that its legs are under the bed and the coat-hanger-like part hangs over me. They hook the sling to the lift, then pump me up into the air.

Bathroom: I always go straight from my bed to the bathroom. They push the whole lift, with me still swinging in the sling mid-air, to the toilet. Lower me onto it, and you can probably guess the rest. Then back up into the air I go.

Showering: Assuming I take a shower that morning (sometimes I do it at night, and other times I say screw it all together), they’ll then push the lift over to my custom shower chair. They’ll lower me into it, remove the sling, and buckle me in. This is another perk: I never shower myself. I don’t have the strength or the range of motion to do so, so it’s like being pampered at the spa every time. They wash and condition my hair, wash my body, and dry me off. Showers for me are mostly really relaxing. Sometimes, though, if I’m feeling particularly weak, they’re difficult because it takes slightly more strength for me to hold myself upright in the shower chair than in my wheelchair.

Now, clean and dry, they put the sling back on me, pump me back up, and we go to the wheelchair. (Note: any time they lower me it takes some maneuvering. It’s not a simple push of a button. They have to angle me and find the right speed and usually push against my knees so I don’t land on the edge of the seat. It depends, though. Lowering me into in the wheelchair is easier than the shower chair, for instance.)

Dressing: I wear only dresses. That’s it, that’s all I own. While I like dresses, it’s not exactly a fashion statement; dresses are logistically a whole lot easier to get on and off me than pants or even skirts. This is a particularly idiosyncratic thing as none of the other girls in chairs I know do this, but it’s what works for me. So, each morning, I tell my carer which dress I’d like to wear, and they put it on me.

Getting comfortable: After I’m dressed comes perhaps the most important step: positioning. I always sit with my legs crossed “Indian-style” (I wish I knew of a better name for it). It’s the most comfortable position for me, but I usually need my carer to adjust me to find the perfect spot: move my legs, lift my knees, push me back, etc. I tell them precisely what I need until I’m comfortable. This might mean moving one leg a half an inch, or lifting one knee five times. Even the smallest movements can improve or worsen my positioning. And if I don’t get comfortable, it can annoy and/or hurt me all day, or at least until I go to the bathroom again.

Personal hygiene: I can do most of the rest myself, to an extent. For instance, I brush my teeth on my own, but my carer puts the toothpaste on the toothbrush and turns on the water. I can brush my own hair, but I can’t pull it into a ponytail if I want it up. I can drape a shawl over me (most times, though it can take a few minutes), but I can’t put on a jacket.

I know that sounds like a LOT, but my carers and I have been doing this for so long that we’ve got it down to a science. All of the above from start to finish usually takes only 30-40 minutes. (Longer if I choose to put on make-up, but that’s due entirely to my lack of make-up skillz and not to my disability.)

Most of the rest of the day, I don’t need much help. In high school, the most help I needed would be asking a classmate to retrieve or put away a textbook from the backpack that hung off my chair. I almost never went to the bathroom during school hours, because it was an annoyance and meant I had to miss some of a class period.

In college, I lived on-campus, and campus was small enough that I didn’t have to drive to class. Assuming I didn’t need to go off-campus, the most help I’d need would be running home to go to the bathroom, and help with the occasional door from a passerby.

Now, if I had to go off-campus, things could get tricky. I can’t drive, because while I’d be capable of driving with some training, the modifications I’d need are HELLA expensive. So if I go anywhere, someone else has to drive me in my van. In high school, that meant my parents. In college, my friends or carer. It’s usually not an issue, but it is a consideration.

The biggest difference for me with leaving the house, though, is that I constantly have to be aware of how much I’m drinking. Because I use a hoyer lift to transfer on and off the toilet, I can’t go to the bathroom anywhere outside my own home. Mostly that means two things:

  1. Make sure I’m not drinking too much of anything (which can make going out with friends for drinks tricky, because alcohol goes through me so much quicker than soda).
  2. I can’t be away from the house longer than 5-6 hours (and anything more than 5 is pushing it).

That means I can pretty much never go on day-trips or to events that I know will last a long time, unless I’ve already planned a way to go back home in the middle.

Those are obviously not all the differences in my day-to-day life, but barring sadly common access issues, they’re the ones that impact me most and are things abled people may not have considered before. I sincerely hope this is helpful, and if you’re writing a wheelchair-using character and have any more questions, let me know!