Andrea Shettle reviews FIVE FLAVORS OF DUMB

Andrea ShettleAndrea Shettle, a program manager at the U.S. International Council on Disabilities (USICD), is passionate about disability rights both domestically and internationally. At USICD, she coordinates an internship program for students and recent graduates who aspire to careers in international development. She also assists with the national campaign for U.S. ratification of the international disability treaty, Convention on the Rights of Persons with Disabilities (CRPD). In her free time, she reads voraciously. She blogs (and reblogs from others) about disability rights, the CRPD, and disability representation in books and other media. She published a fantasy novel in 1990, Flute Song Magic, which is out of print. Find her on Twitter and LinkedIn.


Cover for FIVE FLAVORS OF DEAFOn the rare occasions that I stumble across a book featuring a disabled character while browsing, I gravitate to it. But I also feel afraid. Afraid to invest my hope in finding characters I like only to feel betrayed—again—to find that the character most like me is just there as a prop for another character’s personal growth.  Afraid to feel betrayed—again—by an author only interested in using disability as a metaphor for “broken” or “twisted” spirits.  As if our bodies belonged to them to use as metaphor.  As if either our bodies or our spirits were automatically broken or twisted just because we are people with disabilities.

If you understand how badly disabled readers need to meet ourselves in a book, and if you also understand how often we’ve been betrayed, then perhaps you’ll understand the mingled excitement and trepidation with which I approached the task of reading Five Flavors of Dumb by Antony John. The protagonist, Piper Vaughan, is a young deaf woman finishing her last year of high school. She’s smart, academically successful, mainstreamed at a public high school, a wicked good chess player, and interested in attending Gallaudet University in part so she can finally be among other deaf signers like her.  In these ways (apart from the chess) she is like me if you subtract a quarter century from my age.

In the story, Piper struggles to manage a new high school hard rock band called “Dumb”. Struggles, not because she is deaf, but because the band is comprised of members who do not always get along well. In the midst of all the drama involving “her” band, Piper also is figuring out how she wants to relate to her parents and her two siblings.  The dynamics of how this plays out in the story is much influenced by Piper being deaf and her family hearing.  But the dynamics are also much influenced by Piper being an ordinary adolescent figuring out who she wants to be as she emerges into adulthood.

If you’re just reading this review to know if there is a deaf/Deaf reader who is comfortable recommending this book as being largely free of stereotypes and other problematic representation, then here’s my short answer: Yes. Despite some flaws, it is clear the author did his research. I enjoyed this book and recommend it.

That’s the short answer. If you want analysis, this is where I get into that.

Let’s start with technical accuracy in portraying deafness. When dealing with things other than music, Antony John is pretty consistent in how he portrays Piper’s ability—and lack of ability—to hear the sounds around her. This is what makes it frustrating that he robs her of all ability to appreciate the music (or, as is often the case for this group of novice musicians, the chaotic noise) that the band, “Dumb”, produces.

Piper can hear well enough that her hearing aids significantly boost her ability to lip read others, at least in quiet situations where there aren’t other sounds to compete for attention. There is even one scene where she is able to catch a few words that another character speaks directly into her hearing aid even though she cannot see her face. Piper hears better than I do—just like plenty of real-life moderately deaf or hard of hearing people.  Although I hear some loud, low pitched sounds and some limited speech, there’s nothing “moderate” about my hearing loss.

All this being the case, when Piper is standing close enough, she should be able to hear the sound of Josh singing even if she still misses what the words are.  She should be able to hear Finn demonstrating a chord on his guitar even if she cannot reliably distinguish one chord from another or whether each chord sounds the way it should.  And she also should be able to hear the band well enough to decide if she likes their music or not.  In my case, I do hear music well enough—if well amplified—to know what I like and don’t like.  And Dumb is never stingy with their amplification.  Piper, who hears more than me, should be able to hear it also.

I think Antony John may have meant to amuse his hearing readers with the apparent “irony” of a deaf girl managing a band she cannot hear. Unfortunately he is apparently so enamored by this concept that he has allowed it to override the overall accuracy he otherwise achieved so well. If I had the power to direct a re-write, I would encourage him to consider either making her ability to hear and enjoy music more consistent for someone with a “moderately severe” hearing loss, or else making her more profoundly deaf (though the latter would mean making her less of a champion lip reader).  I also would encourage him to consider the fact that there are many deaf people who love music even if they cannot hear it at all.  They love the sensation of vibrations from a strong beat thrumming through their bodies, which can work well for hard rock and other loud, rhythmic music.  And Anthony John does, in fact, sometimes describe Piper picking up the vibrations of the music in her body.  So why should Piper be so alienated from the music that her band produces?

Despite this and some other minor issues, Antony John’s depiction of what it can be like to be deaf is still mostly on target. There are many little things he gets right, like Piper needing to remove her hearing aids before a hair stylist starts to wash her hair, or the fact that it’s easier to lip read people when they’re directly across the table from you than it is if they were next to you.

Although the author does fall for the tiresome trope of the champion deaf lip reader, Piper’s lip reading abilities are nevertheless largely consistent with her level of hearing loss. I also count in his favor that Antony John manage to show that lip reading isn’t an easy task even for a champion like Piper. She misses a homework assignment when the teacher’s announcement competes with the sounds of other students preparing to leave class.  She has trouble understanding speech in the poor acoustic environment of the girl’s bathroom.  It comes clearly that even a stellar lip reader is still working their butt off to make it work.  It is clear why Piper prefers to use sign language when the opportunity is available.

Other things I like: Antony John avoids the trope of a single disabled character alienated from the disability community. Although she is apparently the only deaf student at her school, Piper does have a deaf friend who, like her, feels most comfortable signing. Granted, this is a friend who has moved away, which means Piper can only chat with her via computer.  But it’s nice to see validation of the fact that many people with disabilities, particularly signing culturally Deaf people, have connections to others who share their disability and highly value these connections.

Antony John’s depiction of how hearing people react to Piper’s deafness is also true to life. Some, like Ed, seem comfortable with whom she is and adapt easily to her communication needs. A few other characters are obnoxious jerks who patronize Piper and underestimate her capabilities.  And many characters are trying to do the right thing—at least sometimes—but are still somewhat clueless.  This mix of reactions can be tricky to get right in fiction.  I’ve seen other efforts that either have their disabled characters living in an unrealistically inclusive utopia, or else there might be one scene with clumsily blatant prejudice that does little to give a sense for the pervasiveness of micro-aggressions toward deaf people in daily life.  Antony John steers the balance between these extremes well.

I also like the balance Antony John strikes between showing both Piper’s limitations as a deaf manager of a rock band and the strengths she is able to use to evade these limitations. She cannot, for example, realize without being told that the band only knows how to play songs that use a specific sequence of three chords. But she recruits her brother, Finn, and her friend, Ed, to help identify these and other weaknesses she cannot assess on her own.  Meanwhile, Piper discovers a knack for marketing the band and negotiating deals.  She also is able to “read” the dysfunctional relationships among the band members through sharp-eyed observation of facial expressions and body language, even in contexts where she cannot understand everything they say.  She sometimes stumbles in managing these relationships—as you would expect from a young, inexperienced adult.  But she learns from her mistakes.

Here, let’s shift gears to look at other kinds of diversity.  The cast of Five Flavors is almost exclusively white, cis, and straight with the story set in a “predominantly white, middle-class suburb of Seattle”.  There is only one important character, described as having dark skin, whose mother is African American. There is one other major character, Ed, whose last name is Chen.  Otherwise, there is little racial or ethnic diversity, even among minor characters.  It seems we are meant to read characters as white unless told otherwise.

Also, apart from Piper’s family temporary money issues, most characters seem to be either middle class or wealthy. Poverty is only addressed when the characters visit the old homes of rock stars. Antony John’s language often becomes lurid in passages that talk about poverty.  I usually found myself feeling uncomfortable while reading these passages.  They made me wonder if the way he writes about poverty is what some poor people have meant when describing the sensation of having their stories presented to the world as a form of “poverty porn.”  Meaning, packaged to elicit emotional responses from people who haven’t experienced poverty without consideration for how poor people feel about their own experiences or about the presentation of their stories.

I think Antony John means for his descriptions of the former poverty of rock stars to elevate the importance of rock music for readers.  But if so, these don’t have that effect for me.  There were other scenes, in which characters talk about the personal meaning of certain pieces of music to them or in which characters react to the music they are listening to, that I felt were much more effective.

Despite my criticisms, I enjoyed getting to know Piper through this book and watching her grow as a problem solver, as a rock band manager, as a sister and daughter and friend.  Although this book was weak in other areas of diversity, I feel that Antony John did a solid job of handling a deaf protagonist and hope he will consider writing more novels with disabled characters in the future—perhaps including a sequel to Five Flavors of Dumb.

Elise Phalen reviews 100 SIDEWAYS MILES

Elise PhalenElise Phalen just graduated from Boston University with a degree in English Literature. She was diagnosed with epilepsy at 11, and is more than happy to answer your questions about it. Originally from Arizona, she has travelled the world, studying and living in Hermosillo, Mexico and Grenoble, France as well as interning at the 2013 Sydney Writers’ Festival in Australia. Elise is now back in the Boston area and divides her time between making coffee at Starbucks, working at the public library, and fretting about the future. You can follow her on Twitter or Tumblr.


Cover for 100 SIDEWAYS MILESThe first time I ever saw a character with epilepsy in literature, she eventually turned evil, cut off someone’s head in an ancient magic ritual, and then died in a burning castle.

I was diagnosed with epilepsy at eleven and have had grand mal seizures on and off over the past 11 years.  Looking back on that first reading, I am troubled that she met such an unfortunate end.  But at the time I was ecstatic.  It was life changing.  My experiences existed in the fictional world.  I was worth thinking about and my problems were worth writing about.  The next time I saw a character with epilepsy in young adult literature, it was the narrator of 100 Sideways Miles, which I read almost seven years later.

In between these two readings, I mostly saw seizures on TV shows where the first aid was always wrong (I’m looking at you, Teen Wolf and Orphan Black).  There are also the handfuls of upsetting moments when a character would dance badly and the other characters would laugh and compare their lack of rhythm to having a seizure.  I would cringe as it hit me viscerally, wishing that I could scratch the words off the page and out of my memory.

Andrew Smith’s 100 Sideways Miles is essentially a bildungsroman, a coming of age story, about a boy, Finn, who goes on a road trip and comes to understand that he is still “too young and too stupid” and that the journey of coming of age is never really complete.  Finn’s journey is also one towards coming to terms with his body and his autonomy, as connected to his epilepsy.

Epilepsy is a very complicated condition that no one experiences in exactly the same way, so Smith gets some leeway in how he portrays Finn’s seizures.  But it was respectful and well researched in a way that I had never seen before.  Smith did not ignore the importance of first aid or the realities people with epilepsy face on a regular basis.  Finn experiences non-convulsive partial seizures and he faces them as something scary but somehow beautiful:

I am just standing there, and first I smell something sweet – like flowers or maple syrup.  Then I realize that I don’t know the names for anything I am looking at…Sounds, colors, textures, all mash together in an enormous symphonic assault on my senses as I shrink down, smaller and smaller. I am not hot, cold, dizzy, or uncomfortable—because all of those things are words, which by that point the seizure have all floated away…It is all so beautiful.

Finn’s “atoms drift apart” and he is at the whim of the new world his seizure has created.  For me, who has seizures primarily while I sleep, this haunted me in how much it resembled a reversed version of how I regain consciousness.

Smith does a good job for the most part of balancing a respectful portrayal of a complicated condition and accurately portraying the realities that accompany it.  Smith is respectful, but Finn is angry.  His anger manifests as outbursts following his episodes, and is generally accompanied by the panging guilt of lashing out at the people who care about you over something that neither of you can control.

In the plot, Finn’s seizures serve as a physical manifestation of his fear that he is stuck in the book his father wrote which contains a character clearly based on him.  He feels out of control of his life and his destiny and attempts to reconcile his lack of bodily autonomy by taking control of the way he perceives the world, such as measuring in minutes instead of miles.  Connecting disability to metaphor is difficult terrain to tread, but Smith does his best.  Finn’s epilepsy is portrayed in its own right as an important part of his character and I felt it came across as a piece of what makes him who he is rather than simply a plot device.

The question of fate and autonomy is a prominent theme of 100 Sideways Miles.  These issues are a huge part of my daily life: “Do I just have a headache or did I have a seizure in my sleep last night?” and waiting a full day after a seizure for my full motor capacity to return. It was nice to see that Smith didn’t shy away from the things that are real and scary about epilepsy and how it dictates your relationship with your body.

Treating a disability with thoughtfulness and respect goes beyond the plot and the metaphorical implications.  It’s also the little things that matter and make it feel real, especially to those of us who actually live with that disability.  Smith does not ignore that the frequency of Finn’s seizures have precluded him from learning how to drive.  He portrays the desire to avoid the subject with strangers alongside the need for people to know how to deal with it in case he has an episode around them. I enjoyed the way that Finn dealt with these issues with equal parts awkwardness and bravery.

The book’s only truly distasteful moment for me came in the scene when his love interest Julia found him on his front porch after a particularly bad episode and later made a joke about possibly having taken a picture of his naked, unconscious body.  With trends of this sort of things actually happening via social media lately, it was a vicious joke that I wish had not been included.

Beyond that disturbing scene, Smith left some key things out of his portrayal of the epilepsy experience.  The most glaring thing missing was any mention of long-term medical treatment.  Finn has no regular neurologist and doesn’t take any medication.  I kept waiting for him to take his medicine or complain about the tedium of medical treatment, but it never came.  My other disappointment was not Smith’s fault, but the choice on the part of his publisher not to include Finn’s epilepsy in the blurb on the back cover.  How will my fellow epilepsy pals know that Finn is there if no one is telling them?  This oversight reeks of ableism and shame when they should be proud of their epileptic boy and his grand adventure.

All in all, 100 Sideways Miles is not a perfect portrayal of what it means to have epilepsy.  But it is respectful and spoke to me on unexpected levels.  The story itself is a ton of fun and I enjoyed Finn and all his quirks.  100 Sideways Miles did its best and opened up doors for people to see epilepsy in fiction and to continue to think and write about it meaningfully. And hey, at least no one turned evil and died in a magical burning castle.

Emma Crees, Courtney Gilfillian, and s.e. smith review SAY WHAT YOU WILL

Emma CreesEmma Crees is 32 and lives in Oxfordshire, UK. A life long wheelchair user she’s passionate about all things disability and can often be found online ranting about this. If she’s not ranting about disability she’s probably talking about books or writing. All of this and more is on her blog, A Writer In A Wheelchair, or on her twitter account @FunkyFairy22. When Emma isn’t online she can often be found knitting, sailing or volunteering.

Courtney GilfillianCourtney Gilfillian lives, writes, and works in New York City. She is constantly on the hunt for a good cocktail, the best pancakes in the city, and most of all a good book. Find her on Twitter at @whitegirlbkcvrs and at her blog about diversity in YA lit.

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.


Today, we’re hosting a discussion of Say What You Will by Cammie McGovern (titled Amy and Matthew in the UK). Our participants were Emma Crees, Courtney Gilfillian, and s.e. smith, who discussed the portrayal of both main characters’ disabilities–cerebral palsy and OCD–as well as several other disability-related issues that came up in the book.

Please note–this discussion contains spoilers.

Cover for SAY WHAT YOU WILL

John Green’s The Fault in Our Stars meets Rainbow Rowell’s Eleanor & Park in this beautifully written, incredibly honest, and emotionally poignant novel. Cammie McGovern’s insightful young adult debut is a heartfelt and heartbreaking story about how we can all feel lost until we find someone who loves us because of our faults, not in spite of them.

Born with cerebral palsy, Amy can’t walk without a walker, talk without a voice box, or even fully control her facial expressions. Plagued by obsessive-compulsive disorder, Matthew is consumed with repeated thoughts, neurotic rituals, and crippling fear. Both in desperate need of someone to help them reach out to the world, Amy and Matthew are more alike than either ever realized.

When Amy decides to hire student aides to help her in her senior year at Coral Hills High School, these two teens are thrust into each other’s lives. As they begin to spend time with each other, what started as a blossoming friendship eventually grows into something neither expected.

Continue reading

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!

Sara Polsky interviews Merrie Haskell about HANDBOOK FOR DRAGON SLAYERS

Earlier this year, Merrie Haskell‘s MG fantasy novel Handbook for Dragon Slayers, which is about a princess with a clubfoot, won the Schneider Family Book Award for its representation of disability. For our one-year anniversary, we invited Merrie Haskell and previous Disability in Kidlit contributor Sara Polsky to the blog to discuss the book.

To make things even more exciting, we’re giving away a signed hardcover of Handbook for Dragon Slayers! Details at the end of the post.

Take it away …


Cover for HANDBOOK FOR DRAGON SLAYERSSara Polsky: Can you sum up Handbook for Dragon Slayers in a few sentences, for readers who haven’t heard of the book yet?

Merrie Haskell: Essentially, Tilda, a girl who thinks of herself as a “princess librarian” goes on the run with her servant and a disgraced apprentice dragon slayer. They encounter the Wild Hunt and magic horses and an evil knight and Hildegard of Bingen, and several dragons.

Sara: What kind of research did you do to write about Tilda’s disability? 

Merrie: I dug through pretty much every medical and history database I could find to discover articles on how clubfoot was treated medically in the past. Mostly, for the actual feeling of life from Tilda’s point of view, I just relied on my own experiences with mobility issues, or stories from, and observations of, my grandmother (who was in a terrible car accident when my mom was young and almost never walked again).

Sara: Did you ever have to rethink a scene to account for Tilda’s disability, or find that you had unintentionally used certain tropes? If so, can you give an example?

Merrie: There was a point in one draft where Tilda was falling down quite a bit–which, given the way her foot is situated and the rough terrain seemed likely to me. But my editor was concerned that this wasn’t doing the things I wanted it to do (mostly, I wanted it to heighten tension). I spent some time thinking on that. Had I ever seen my grandmother fall? Actually–no. And I spent many whole summers with her, in the garden, not always on great terrain. The only time she fell to my knowledge was disastrous, and that was at the grocery store, on wet tile. She was always very careful about her footing, and fell less than most people, I think. So rethinking that was good; it was lazy writing.

Sara: What advice do you want to have for writers who want to write diverse characters that are outside their own experiences?

Merrie HaskellMerrie: The notion that people should write what they know is very limiting. Imagination is one of the most powerful tools we have. I use research to guide my imagination, and then I try to find people who can tell me where I’ve imagined wrong. This applies to all of writing, and it’s really no different for writing a diverse character. People fail at this when they abandon research, imagination, and expert assistance for tropes, stereotypes, and “what everybody knows,” and when they don’t approach the writing humbly, as a learning experience. That said, I’m no expert! Nisi Shawl and Cynthia Ward have a book called WRITING THE OTHER and I know Nisi is involved in some workshops on that topic as well.

Sara: Since the book has a pseudo-medieval setting, I’m curious how any historical research you did intersected with research into disability. Did you research medieval attitudes toward disability? How did you adjust your portrayal of Tilda’s disability so that it felt “period” to the setting?

Merrie: Interestingly, it was a book on childhood in the Middle Ages that delved into the subject of disability the most, and as my heroine was still in her childhood, this was useful to me. She’s born with her disability, and has not acquired it through warfare, accident, or disease. But while I strive for a good deal of historical authenticity in my settings, it is sometimes difficult to research the things you want to be authentic about. It is simultaneously hard to find out something that goes against the popular conception of the Middle Ages, and it’s rather like rolling a rock uphill to write against expectations like that (I had trouble trying to explain the specific flavor of German pre-1100’s feudalism I’d researched for the book, for example; most Americans run around thinking of feudalism as basically a version of English manorial life and not much more. Or at least I did, until I studied more). In the end, the rock I chose was that I would people the world with some superstitious characters and some jerky characters, but the vast majority of people who are more practical and see a complete person and not merely a disability. Tilda has a perception that the superstitious and the jerks outweigh the practical, but I think it’s relatively clear by the end of the book where the balance lies.

During my undergraduate courses in anthropology, when I was learning about identifying human skeletal remains, I ran into a particular femur from the bone lab several times. It was a bone that had been badly fractured and then repaired with barbed wire. Someone had basically tied the bone back together with the wire by drilling into the bone and threading the wire through. The patient must have been incredibly resilient, because they had clearly lived long enough for the bone to repair and heal over completely, just a great knob of bone that had grown around the wire. The femur dated from the late 1800s. This kind of thing is not something you read about in books, at least–I never have. That femur–that response to the wound and the situation and what that person’s life must have been like–speaks to me when I think about disability throughout history. People make do. People are practical. Jerks find the thing to poke at that makes them feel strong, and the superstitious find the thing to hate that makes them feel safe, but in ordinary times, the rest of us remain practical.

Sara: What’s next for you?

Merrie: My third book, The Castle Behind Thorns, which I tried very hard NOT to make a Sleeping Beauty story and failed, came out in June.


Thank you, Merrie and Sara!

Merrie has generously donated a signed–and personalized, if desired–copy of Handbook for Dragon Slayers to 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 open to international addresses.

Kody Keplinger interviews Rachel M. Wilson about DON’T TOUCH

September 2nd sees the release of Rachel M. Wilson‘s debut Don’t Touch, a contemporary YA novel from HarperTeen about a girl whose OCD is endangering her aspirations of becoming an actress. For our one-year anniversary, we invited Rachel to the blog to discuss the book.

To make things even more exciting, we’re giving away a signed ARC of Don’t Touch! Details at the end of the post.

Take it away …


Cover for DON'T TOUCHKody Keplinger: First of all, can you tell us how you got the idea for Don’t Touch? How did this story come to be?

Rachel M. Wilson: Don’t Touch began as a very personal book. I experienced OCD and anxiety from age ten into high school, and even after my symptoms were under control, I was left with a lot to process. My first pages were close to my own experience, but I needed more distance to be able to craft a story.

Once I decided to focus on Caddie’s fear of touch, I was partly inspired by superheroes like X-Men’s Rogue. Caddie doesn’t have superpowers, of course, but we all have the power to affect the world around us. If we don’t trust ourselves, that can be scary. As a magical thinker, Caddie worries that her thoughts or actions might have dangerous consequences, and this freezes her up. She’s scared to act, to change or move forward, and compulsions like avoiding touch give her a temporary sense of control over those fears.

During the writing process, other bits and pieces gradually came to seem essential to my story. The scene in which Caddie and Peter visit an abandoned pool, for example, was inspired by an exploratory drive into old Irondale. That setting led me to Ophelia and to so much more of Caddie’s story.

Kody: I think a lot of people think it’s easy to write your own disability, but in my experience, it can be tricky. How was this experience for you? Were there any challenges you faced in writing about a character with OCD?

Rachel: Yes, I found it very tricky. First off, OCD can consist of many different obsessions and compulsions at once, and these are often hard for someone without OCD to understand. Media portrayals of OCD often stick to neat freaks obsessed with cleanliness or germs, but most of my own fears and compulsions were much more “creative.” For example, for years I avoided gum and blueberries like the plague for fear of blowing up like Violet in Willy Wonka.

All the different symptoms in my first draft overwhelmed my early readers and took away from a coherent story arc. My last advisor at Vermont College of Fine Arts, Martine Leavitt, wisely encouraged me to narrow my focus, and at that point I zeroed in on touch. I considered presenting Caddie’s fear as a phobia, but that didn’t fit in with her magical thinking. Eventually, I found a balance by acknowledging that Caddie has other symptoms without spending too much time with them on the page.

The other big challenge was that obsessions are often constant. I had the phrase “don’t touch” in my novel about a zillion more times than it appears in the final draft. My editors convinced me that a little goes a long way, and we really pared it back. That was for the best because readers still comment on how constant that obsession feels to them.

I also found it hard to handle the dueling beliefs that go along with OCD. Some call OCD “the doubting disease” because OCD sufferers know our fears aren’t justified, but we doubt this knowledge. What if we’re wrong and the compulsions really do matter? We’ll do almost anything to avoid that uncomfortable worry. It’s good practice in fiction, though, to invest your characters with unshakeable drives and convictions. Some of my early readers had trouble with Caddie questioning or even ridiculing her OCD beliefs. I had to be true to that doubt, but it was challenging to make sure that it wouldn’t diminish the force of Caddie’s fear for the reader.

On a less technical note, writing about Caddie’s anxiety often brought up anxiety for me, but experiencing an emotion while writing doesn’t guarantee that your reader will feel it. I needed to make sure that those feelings came through on the page and not just in my head. The only way to do that is by getting distance from your character and reading with fresh eyes—or by soliciting feedback from honest readers. For me, getting distance came not only from taking time away between revisions but from giving Caddie experiences that weren’t as personal to me. Yes, I love theater, but I’ve never played Ophelia. I understand separation and loss from other experiences, but my parents are nothing like Caddie’s and they’re still happily married. The ways in which Caddie is not like me were as important as the ways in which she is for me to be able to write fearlessly.

Kody: Every disability has its tropes. Were there any specific OCD stereotypes you tried to steer clear of in writing DON’T TOUCH?

Rachel WilsonRachel: Yes. For one, OCD is often portrayed as quirky or cute. I don’t mind a comedic point of view on OCD as long as it’s balanced with the reality of how awful it can be. I addressed the quirky trope head-on by having Caddie attempt to pass off her symptoms as “artistic quirks.” She’d like people to think she’s a whimsical oddball if the alternative is being perceived as crazy, but she’s hiding the pain. In reality, this kind of anxiety can be completely debilitating, even life-threatening. It isn’t cute, and I don’t think anyone who reads the book will perceive it that way. Even Caddie’s friends, who want to support her, find her OCD frustrating. That’s true to life—it can be hard to empathize and be patient with someone who’s highly anxious. Caddie’s friends connect to her because of how she works to be open with them—not because her OCD is some adorable quirk.

I’ve also been put off by stories that treat OCD (or any mental illness) as a character flaw or weakness of will. When the movie As Good As It Gets came out, I was excited because I’d never seen a movie or read a book about someone with OCD, but I was disappointed that Melvin’s OCD seemed conflated with his misanthropy and general nastiness. When he said he wanted to “be a better man,” it felt like he was saying that OCD made him a bad person and that he’d suddenly chosen to “fix” himself. It’s tricky because of course one can be nasty and have OCD; one might even become nasty in response to illness. But something about how that narrative mashed up out-of-control compulsion with willful bad behavior left me feeling icky.

I don’t think of Caddie as perfect by any means, but she’s trying to be a good friend and handle her anxiety as best she can. There’s strength in that, and I hope that comes through even when she’s struggling.

Kody: How similar is Caddie’s experience with OCD to your own? 

Rachel: Caddie’s younger history of handwashing and magical thinking is close to my own. My biggest symptom from fourth to eighth grade was handwashing—the bit about Caddie having raw and bleeding hands that her parents suspect might be caused by allergies comes from experience. At another point, a teacher thought I might have diabetes because I asked to go to the bathroom so often—for handwashing, of course. I never wore gloves, though I might have liked to. Instead, I kept my hands tucked under my arms and used my elbows to open doors and turn on faucets. I wore socks at all times and used my toes to change TV channels. I lined my school bag with paper everyday so it wouldn’t be contaminated by my social studies book, which had been contaminated by a copy of Watership Down that I checked out from the library. Random things like that were always turning menacing to me. Something about the intelligent rabbits—their glossary and the violence of the first few pages had really disturbed me. So all year, the social studies book had to be lined with paper and kept in its own cubbie hole—until one day, I accidentally let it touch my vocabulary book, and then there were two books in the cubbie hole. My own fears around touch had more to do with contamination, while Caddie’s are tied up with magical thinking—if she touches another person’s skin, her parents’ separation will be permanent. I had a lot of magical thinking games, but not specifically around touch. Some of mine involved clicking my teeth or blinking while looking at a particular color, focusing on “good” words or images to cancel out “bad” or scary ones, and repeating prayers over and over in my head. I chose to focus on touch with Caddie because it’s such a clear metaphor for what her anxiety does—it keeps her from connecting with other people.

Kody: What have you learned from your experience writing DON’T TOUCH? Do you have any advice for writers trying to negotiate that balance of writing characters with their own disabilities?

Rachel: Well, one danger of writing about your own issues is that you do have ownership. You may feel a sense of entitlement to write what feels true to you, but it’s important to remember that you’re still representing a group of people who are often underrepresented. There’s a need to step back and make sure your story doesn’t have implications you didn’t intend . . . But once you’re conscious of that, at a certain point, I think it’s important to let go of the fear of getting it wrong.

I definitely worried about getting things wrong in fictionalizing OCD, but ultimately I gave myself permission to tell a story. I learned that—for me—it was more important to capture the feeling of OCD and anxiety than to write the experience literally, moment-to-moment. Had I written a stream-of-consciousness account of my own OCD, it would have been distancing, chaotic, and frustrating to read. Some of that might serve my story, but a little goes a long way. I also found it important to be conscious that every element of a story doubles as metaphor. The idea of thinking about OCD as a metaphor made me uncomfortable, but I needed to consider how it worked as metaphor to know what story I was telling. There’s a delicate balance to that—the balance between medicine and metaphor—and I can’t promise I’ve handled it perfectly, but I think it’s more important to attempt the balance than to avoid sharing our stories altogether out of fear of getting it wrong.


Thank you, Rachel!

Rachel has generously donated a signed–and personalized, if desired–ARC of Don’t Touch to 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 open to US and CA addresses.

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

Discussion #8: Intersectionality and Disability

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

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?

Our contributors sent the following responses:


Marieke Nijkamp: Oh my goodness, I would love to read more queer, disabled characters. And I would love to see more intersectionality, period. Of course the queer, disabled experience is different than the queer experience or the disabled experience, but that only makes me wonder if there is such a thing as THE queer experience… or THE disabled experience. Because I have yet to find it.

It is always going to be a matter of research, trial and error. And if you feel characters have to have a reason to be multi-dimensional, multi-diverse? I’d love to see an equally legitimate reason for characters to be white AND straight AND able-bodied AND middle class AND AND AND. We are no checklists.


S. Jae-Jones: I think children’s literature, more than adult, is still stuck on a mainstream idea of “relatable”. The protagonist must be flawed—but not too flawed! The protagonist must have an “issue to overcome” (a phrase I loathe)—but nothing “too trying” or “too unusual” or worst of all, “too far from the physical ideal”. Invisible disabilities seem to have glamour (mental illness—providing it’s “quirky”, or a cosmetically appealing scars), but heaven forbid a protagonist have NOTICEABLE signs of a disability. In my opinion, it all comes back to this mainstream idea of a “default”. The “default” is relatable. Stray too far from it, and it won’t sell.

The other obstacle facing intersectionality in kidlit is the fear of tokenism. I’ve seen that accusation leveled at authors who’ve tried to include diverse characters, especially characters who are diverse in more ways than one. (E.g. “Why is this character bi, Black, and Jewish? It’s not realistic!” or worse, “The author is so lazy s/he can’t be bothered to come up with more characters.”) I think that we, as a society, are conditioned to thinking people should be put in boxes, and one box at a time, at that. It’s ingrained in the way our society—or at least American society—seems to function. I grew up in Los Angeles, which has a large multiracial population, and filling out the ethnicity portion on census forms often confused myself and my classmates—”Do I have to pick just one?” If you were Black and Hispanic, or Asian and White, you either had to choose, or were stuck with picking “Other”. And the word “other” is a powerful thing.


Corinne Duyvis: It’s such a multi-faceted problem: first there’s the fact that most people don’t even see the need for these characters–as though people like me aren’t just as real and valid as the cishet-white-abled people who are often written about, and as though we don’t need representation just as much or more. Then there’s the assumption that every “minority trait” is tacked onto a character, and thus requires justification in a way that, for example, whiteness and straightness don’t. Once writers get past those notions and do want to write these characters, there’s the joint fears over doing it wrong and over “trying too hard.” I understand and often share those fears. I’ve heard these same remarks about my debut novel: trying too hard, what’s the reason for these characters, etc. But it’s not as though writing a character facing multiple oppressions is some kind of performance or outrageous deed. I think it’s better to try too hard than to not try at all.

Even when writers overcome these hurdles, do their research, and successfully write intersectional characters … they need to find publishing professionals who are on the same wavelength. And that’s a challenge, too.

On a different-but-related note, as Andrea Shettle often and expertly points out, characters rarely have multiple disabilities. Many of my disabled friends have more than one disability, as do I. Many disabilities have high comorbidity rates. Plus, someone who requires a wheelchair is just as likely to also get migraines as an able-bodied person; being autistic makes you just as susceptible to mental illness. Perhaps even more, thanks to both personal and societal pressures.


Lyn Miller-Lachmann: We’ve never had anything close to proportional representation of people of color in children’s and YA books, and the mismatch is more glaring now because the demographics in our society have changed but the presence of main characters of color in books has not changed since the 1980s. So I’m not surprised to see so few characters of color who also have disabilities.


s.e. smith: Agh this is such a cause of frustration to me! Sometimes it feels to me like authors are trying to hit diversity bingo — okay, I’ve got my Latino character, and my Lesbian character, and my Disabled character, now give me a prize! The fact is that many people have intersectional identities. Minority teens rarely get to see themselves in text at all, and those who experience multiple oppressions find it even harder to locate books that tell their stories.

Part of the problem here may be that authors find it scary to imagine tackling multiple aspects of marginalisation in the same character: the Black and gay experience is different that the Black or gay experience, for example, just like the disabled and queer experience is different than either of those identities together. But these are problems that aren’t going to go away by not writing those characters — you have to plunge into them, and you have to do your research, and you have to commit to depicting a world where the true spectrum of diversity is shown.


Kody Keplinger: I think there’s a lot of fear. I think many authors (myself included) have a deep fear of “doing it wrong.” It’s scary enough to write about disability, but when you introduce another element, you double your chances of being offensive or problematic. Should that fear hold authors back? No. It should push them to do research, to approach with care, but not to avoid intersectionality all together.


Natalie Monroe: I personally think it’s because writers believe once a diverse element is added (ex: queer, ethnicity…), it’s done. Their book is now ‘diverse’ and ‘realistic’. But real life isn’t just one ball in a column, it’s a whole jumble of multicolored spheres across rows of columns. I’m Asian and am in a wheelchair. I know someone who is autistic, Asian, and in a wheelchair. I know a Filipino who is autistic. Diversity means exactly what it means, so stop treating it as a kind of ‘rules of requirement’ thing and mix it up.


Do you have any input, readers?

Sara Polsky reviews THE ELEMENTALS

Cover for THIS IS HOW I FIND HERSara PolskySara Polsky is the author of the YA novel This Is How I Find Her, published by Albert Whitman in fall 2013 and named a Bank Street Best Children’s Book of 2014. Her non-fiction has appeared in Poets and Writers, the Forward, and other publications. Visit her at @sarapolsky.


The Elementals coverI’ll start with the verdict: I loved the way Saundra Mitchell writes about disability in The Elementals. Julian Birch, one of the protagonists, has a “withered” leg from a childhood bout of polio, and Mitchell’s depiction of him is one of the most believable, relatable portrayals of disability I’ve come across.

Julian’s disability is present but backgrounded to the rest of the story, which focuses on the mysterious powers that Julian and Kate, a girl Julian sees only in visions, seem to share. As Julian goes about his life — experimenting with his powers, working on his family’s farm, thinking about the girl he hopes to marry — Mitchell often notes the way Julian moves. In an early scene, he “hauled himself up,” “thumped” across a porch, and leaned against a railing for support, and the ways in which he uses his crutches to do things that an able-bodied person might do with his legs (trip one of his brothers, for instance). These adaptations, when described from Julian’s point of view, seem like a thoroughly ordinary part of his life.

That’s not how everyone else in his life sees things, though. Julian experiences rejection and surprise when he goes looking for work, with landlords and potential employers sometimes shooing him away and sometimes offering him jobs only on the condition that he never ask other employees for help. One potential employer, Mr. Zweifel, bluntly asks Julian, “What’s the matter with you?” while pointing at Julian’s leg. Even though he’s had several potential bosses notice his disability by this point, Julian still feels awkward and uncomfortable in these conversations.

His own attitude about his disability also changes based on how other people react to him. Early in the book, Julian’s disability is just a part of who he is, something he doesn’t seem to think about much. But when the girl he wants to marry rejects him because she thinks he won’t be able to work on her family’s farm, Julian looks down and “his bad leg taunted. It hung too short; in the intermittent light, it seemed not only withered but gnarled….The world, the wide, limitless world, shrank to the size of the barn where he’d once lain fevering in the night.” Going back into his family’s house, he sees only the way the house and his family members’ lives have been altered for him, with a slide over the stairs for him to use, hooks on which he can hang his crutches, and chores that don’t involve the use of his leg. His brothers, leaving for the army, highlight that Julian can’t fight or tend to the farm in their absence. He feels infantilized in a way he hasn’t felt before, and that feeling is part of what sends him fleeing west to make his own way (and, eventually, cross paths with Kate).

Julian has a magical power — the ability to breathe dead things back to life — that he may have gotten from the same polio that affected his leg. But the power in no way compensates for or cures his disability; in fact, it brings Julian another set of problems, and it is that power and its consequences, rather than disability, that drive much of Julian’s portion of the plot. Julian’s disability is one of his motivations as a character — the lack of independence he feels at home pushes him to try to make his own way in the world — but it isn’t a crucial engine of the book’s wider plot, and that felt, to me, exactly right.


Thank you, Sara!

Author Saundra Mitchell has generously donated a signed–and personalized, if desired–hardcover copy of The Elementals 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 open to North American addresses.

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

Corinne Duyvis interviews Jennifer Castle about YOU LOOK DIFFERENT IN REAL LIFE

Last year, writer and Disability in Kidlit co-founder Corinne Duyvis reviewed You Look Different in Real Life, a contemporary YA novel by Jennifer Castle featuring an important secondary character with autism. For our one-year anniversary, we invited Jennifer to the blog to discuss the book.

To make things even more exciting, we’re giving away a signed copy of You Look Different in Real Life! Details at the end of the post.

Take it away …


Cover for YOU LOOK DIFFERENT IN REAL LIFECorinne Duyvis: Can you sum up You Look Different In Real Life in one or two sentences, and tell us a little about Rory and how she fits into the book?

Jennifer Castle: You Look Different in Real Life is the story of five teenagers who are the subjects of a documentary film series that checks in on their lives every five years, beginning when they were six years old. Now they’re sixteen, and the film crew is coming back at a time when they’re struggling with who they really are, what they mean to one another, and how to reconcile the past with the present and future. Rory is one of these teens. She was diagnosed with autism sometime after the second film (shot when the kids were eleven). As a film subject, she’s gold, because she’s honest and un-self-conscious. She has the strongest self-identity of the group, but she has other battles to try and win…and now she has to do it in front of a camera. Juicy stuff happens.

Corinne: How did Rory come into being? Was her autism an integral part of her character from the start, or did that aspect develop later on?

Jennifer: I knew from the beginning, even before the idea for this book came together, that I wanted to write about a teenage girl with autism. There are quite a few kids and teens in my life who are on the spectrum, and watching them overcome challenges big and small has always affected me. I’d also just come off ten years of producing a website for tweens on PBS Kids called “It’s My Life” which had a robust online community, and many of our regulars were kids who talked openly about their autism. One of them kept referring to it as “my blessing and my curse.” That stayed with me. I wanted to explore that blessing/curse dichotomy in my writing somehow.

Jennifer CastleAfter a lot of thought, I realized the thing I was most interested in was not necessarily the journey of an autistic protagonist (and honestly, I didn’t feel I was qualified to pull that off), but the story of a friendship between a neurotypical protagonist and her childhood bestie whose autism created problems that drove them apart. Because that’s a story you don’t see often in literature, but one I think many readers can relate to. So as the premise of You Look Different took shape and I had to come up with five very different characters who would fit together like interlocking puzzle pieces, Rory came into being. In the book, Rory and the main character, Justine, are inseparable at age six, but by eleven, Rory’s quirks are beginning to wear on Justine. I think that happens normally among girls around that age, autism or no autism — in general, their tolerance level for anything they see as “weird” goes way down. Peer pressure goes way up. Many kids who are stuck in the middle get socially crushed by that collision.

The autism factor felt like an intriguing prism to look at how friendships change as we grow up. Now sixteen and more mature, Justine feels intense regret and guilt about the way she cut Rory out of her life, but doesn’t know how to fix it. The fact that the filmmakers have returned, pushing them into situations together, makes it better and worse at the same time. (Which of course is not-so-fun for Justine, but excellent for me as a storyteller.) What Justine has to learn is that she can’t make amends until she can see Rory as a person, and not an autistic person. I don’t like to put “messages” in my work, but I did see an opportunity to give readers a look at that process in the hopes that they can apply it to their own lives and people around them.

Once I got deeper into the book, Rory herself took on more dimension and I figured out what her personal journey was going to be. The plot puts her in some challenging situations. I love the way she gets through them, and the surprising new connections she forges as a result.

Corinne: In a world full of stereotypical portrayals of autism, Rory’s portrayal struck me as delightfully realistic. I recognized many of her symptoms and enjoyed details like her love of navigation, which I totally share, or the way she’ll make brief eye contact before looking away again. How did you go about your research?

Jennifer: It means a great deal to me, that Rory felt real and not stereotypical. Thank you! (And phew.) Because it’s freaking scary to write a character who people will be examining more closely for accuracy and dimension. I got dead serious about research, and did a lot of reading — but not endless reading, because I believe there’s such a thing as too much research. There’s a great book called “Asperger’s and Girls” which I found particularly useful. I also found a wonderful documentary called “Billy the Kid,” which is a portrait of a teenage boy who happens to be autistic (but terrifically, his autism is not mentioned at all in the film). Then I really lucked out, because I met a mom in my community who has both a daughter and a son with autism, so she was able to give me very specific insight as to how the experience is different for girls and boys. I had an early draft at that point and I just kept asking her, “Rory does this. Does that seem organic to you? Do you buy it?” She read a later draft and gave me line notes, both positive and critical, on everything Rory. When she said she really loved the book and how Rory was portrayed, I felt confident about putting the character and her story out into the world.

Corinne: Writing disabled characters requires awareness and thought. Rather than letting authors use that as an excuse to not write disabled characters at all, we want to acknowledge the potential complications and show ways to navigate these. Can you perhaps share an example of where you had to re-think a scene to account for Rory’s autism, or where you unthinkingly used certain tropes?

Jennifer: For me, writing the backstory of how Justine ditched Rory as a friend was surprisingly difficult. Because as Justine is telling it, she has retrospective awareness of Rory’s issues. But the Justine in the flashbacks does not, and the Justine in the flashbacks found her friend annoying and high maintenance. I had to portray Rory at eleven not just as Justine sees her now, but as she saw her then, and it was a delicate balance. I cringed as I was writing some of those memories, because I didn’t want to seem insensitive or paint too negative a picture of Rory. I concentrated on making Rory as likable as possible, accepting Justine’s “dumping” and gracefully letting her go.

But then my autism-mom expert called me out on it. She said Rory would not give up the friendship so easily. She would be persistent. She would not get the social cues and yes, she would be totally irritating about it. It felt so uncomfortable to rewrite that section, even though I knew it was truer to Rory’s character. I was worried what readers would think.

And that’s one of the big dangers, when it comes to writing disabled characters. It’s sort of the opposite problem of stereotypes or one-note characters, which is obviously an issue too. But I think many authors are so focused on sensitivity and creating sympathy that they forget who their characters actually are, flaws and all. Sometimes these flaws are somehow related to the disability, and sometimes they’re just part of who a character is, just like flaws should be part of any character you’re writing. Perfect, saintly characters may not piss anyone off, but they also feel totally inauthentic. Once I stopped handling Rory with kid gloves, she truly leapt off the page. I don’t regret taking on that challenge of awareness and thought, as you beautifully put it; I think I’m a better writer now as a result of that challenge.


Thank you, Jennifer!

Jennifer has generously donated a signed–and personalized, if desired–copy of You Look Different in Real Life 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 open to international addresses!

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