Kayla Whaley: Sister Act

Kayla 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 both the Atlanta Young Writer’s Institute and Entangled Publishing. Her bookshelves consist almost entirely of kidlit and she writes YA fantasy and contemporary.

She’s previously written about her disability at DiversifYA.

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The “disabled sibling” trope is arguably one of the most common disability tropes and definitely one of my least favorites (not that I have any favorites). You could certainly write a respectful, awesome story where the main character’s sibling has a disability, but this trope isn’t that.

The trope tends to involve a healthy dose of inspiration porn mixed with an even healthier dose of dehumanization. In my experience, the disabled sibling exists purely to make the main character’s life more “difficult,” more “sympathetic.” Oh, that poor dear, the writers want you to think, having to deal with such a horrible thing. It must be so hard.

The sibling with the disability is a source of frustration, anger, sadness, and general tragedy for their able-bodied sibling. It is not their story. They are not characters – they are props.

None of this is to say that having a sibling with a disability can’t be difficult or sad or whatever for the rest of the family. But it’s certainly not ONLY that, and in my case, it was RARELY that.

Growing up, I didn’t have very many doctors’ appointments (about one check-up a year), we didn’t have any medical bills thanks to our excellent insurance, my little sister was never expected to help take care of me, I wasn’t hospitalized but once for six days after my one surgery in fourth grade. As a family, we sacrificed little because of my disability. Sure, my parents acted as my primary caregivers until I went to college, and I’d occasionally feel badly if I needed to call for one of them more times than usual in the night to roll over or go to the bathroom. Vacations were a little trickier than they would’ve been otherwise, but not much.

I obviously can’t speak to how my family felt, but I very rarely felt like a burden on anyone, and certainly not to the extent I saw on TV and in books.

Of course, my sister and I had our difficulties, but they rarely had anything to do with my chair. I was always jealous of her artistic abilities; she was jealous of my grades. I was really religious; she was really not. I liked following rules, meeting expectations; she liked “rebelling”, finding her own path. I thought she got the most attention from our parents because she was the baby; she thought I got more because I was the “good kid”. In reality, I think we both knew we were equally loved.

And see how none of that was because of my disability? It wasn’t an issue. (Of course, maybe my sister felt differently as I can’t speak for her, but we’ve spoken about it before, so I feel pretty confident.)

So I couldn’t help feeling frustrated seeing those “disabled siblings”. It reflected nothing of my experience or of my family’s experience. Of course it offended me to see characters with disabilities relegated to those roles, but it also upset me to think that’s how people assumed my sister felt about me. That people assumed we weren’t close, that we didn’t love each other and learn from each other and admire each other. That we didn’t fight (boy, did we fight). That we didn’t do things like spend all afternoon lathering ourselves in Bath and Body Works glittery lotions.

That we weren’t sisters first, above all.

According to so many shows, books, and movies, my sister must have resented me. She must have fought to see the good in me and ultimately have learned to love me despite how horrible my disability made her life. Nay, learned to be inspired by all that I’ve overcome.

Fuck that noise.

I love my sister and she loves me and we always have and always will. Do we fight? God, yes. Do we get mad and jealous and spiteful? Absolutely. Do we dance and laugh and tease? Yup. Does she steal my stuff? Mmhmm. Do I think her boyfriends aren’t good enough for her? Sometimes. Is there anything, anything, I wouldn’t do for her? Not a thing. Am I sure she would say the same? Yes.

In short, we’re sisters.

And I think it’s a shame when stories ignore all the incredible, complex facets of any sibling relationship. It dehumanizes ALL your characters, both the disabled and able-bodied siblings. It’s disgusting and a waste and lazy.

Be better than that, writers. Be better for your characters, for yourself, and for all the disabled and able-bodied siblings who deserve to see themselves and their relationships in the stories they read.

s.e. smith: Crazy Creative

s.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.

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Mental illness as inspiration is one of the oldest tropes in the book. According to pop culture, mentally ill people are magically more creative than everyone else, filled with a manic drive to create art that pushes them to the brink until they finally explode—but what fantastic art they produce in the process. And what tragic heroes they become as a result of sacrificing everything for their art.

The myth of the ‘crazy artist’ is one that looms large in the popular mind, and it’s reinforced by books, film, and television where we see mentally ill characters who are also deeply creative, intelligent, and driven. According to this common disability trope, mental illness begets creativity—or perhaps vice versa. Either you start out with mental illness that makes you creative because it forces your brain to see differently, or you’re creative and it drives you into mental illness because you become consumed by your work. The two traits become inextricably linked in this metric, impossible to separate out.

I get this a lot as a mentally ill writer, perhaps most especially when I am manic and writing a lot. People attribute my writing to my mental illness rather than to who I am or any innate part of my nature, and along with that attribution comes an uncomfortable implication that my creativity must be the result of poorly controlled mental illness, because everyone knows that medications slow people down, blunt thinking, destroy creativity. Even my own medications manager seems to push at that idea when we meet to discuss how I’m feeling.

To be viewed as a creative success because I’m crazy, and to be told that I can only be creative if I don’t manage my mental illness effectively, is troubling. It’s especially troubling to see it reinforced in the pop culture around me.

One reason I loved Hilary T. Smith’s WILD AWAKE was because she captured, perfectly, the problems with the crazy creative trope. Kiri is a very talented and amazing musician who also has mental illness—and when she experiences a Thing, she doesn’t get more creative. Her work doesn’t flower into an explosion of amazing, inspiring, wonderful creation. It gets violent and ugly and all-consuming.

When I’m manic, I write upwards of 20,000 words a day. That is not healthy. When my mental illness was untreated, I didn’t sleep, I rarely ate, I just worked endlessly, sharklike; I felt like if I stopped for a single minute, I would die. Everything was so ferociously bright and glittering around me that it was like being on a concert stage and I felt like I had to perform at every minute—but that wasn’t healthy.

When I found a treatment regimen that worked for me, and when I started managing my mental illness effectively, I didn’t become less creative. Did I change on medication? Yes, I did. I had fewer mood swings. I was a lot more comfortable. I didn’t fly off into the stratosphere at the drop of a hat. I wrote, a lot, but not in that out of control, desperate, fevered kind of way that left me feeling dizzy and slightly sick. That writing was good—some of my best, actually.

Did I also tend to sleep more because of the sedating effect of my medications? Well, yeah. And that was a good thing, given my lack of sleep before. Did I sometimes feel foggy in the brain? Certainly. Was that my new permanent state of being? No. And I worked with my medications manager to find the dosage that worked most effectively for me, allowing me to be myself—my true self, not the snarled, manic, jittery self that I had been before—without disappearing.

And yet, I, like many mentally ill people involved in creative fields, had felt hesitant about seeking treatment, fearing that treatment would destroy my creativity. I had bought into the myth that the two were linked, and that with treatment my creativity would wither away and die, leaving me just another drooling overmedicated mannequin. I envisioned the abusive use of psychiatric medications and didn’t understand that there was actually a middle ground; I didn’t have to have uncontrolled mental illness, and I didn’t need to be a zombie, either.

Yet, this reality is so rarely depicted in pop culture, or in young adult fiction. All too often, people are presented with the choice of unchecked mental illness devouring someone and remaining creative, or turning into a passive ghost of who you were before. It stigmatises the use of medication and other treatments, and it creates a difficult bind for people who actually are mentally ill and creative (including, I note, a lot of young adult writers!).

Talking openly about mental illness in young adult fiction is so important; not just because I want to see more positive and accurate portrayals of mental illness in general, but because the age of onset for many severe mental illnesses is often in the teens. If your framework for mental illness is built on incorrect tropes, that’s a recipe for disaster. If it’s built instead on depictions that capture the diversity of mental illness and mentally ill people, that’s going to radically change the way you relate to the onset of your own mental illness. It also radically changes the way people including parents, peers, and loved ones interact with mentally ill teens.

Instead of being something you should feel ashamed of, or something you should resist treatment for, mental illness becomes simply a part of you. Not your sole defining characteristic, and certainly not the thing that makes you creative. Just something about you that makes up a part of your life.

And creativity is part of you too, not something caused by (or likely to cause) mental illness.

Alex Bear: Driver’s Ed for Epilepsy

Alex Bear is an editorial intern at Coffeetown Press. She’s devoured books all her life, including YA, and hopes to continue to do so for some time. Her personal Tumblr can be found at http://futuresoon.tumblr.com.

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I can remember the exact day I discovered I had epilepsy. I can’t even remember which year it was (2006? 2007?), but the day, oh, I remember that.

April 1st. Hell of a prank.

The rest of the day itself left me pretty woozy. I spent most of it on a hospital bed, feeling very, very tired and wondering if I was allowed to sleep. I’d discovered it by virtue of getting up at 5 AM, you see, after having gone to bed at midnight; I had a plane to catch that morning, and I’d thought I could sleep on the flight. In retrospect, I’ve made better decisions. Had a seizure right by the door. Or so I’m told, anyway; all I remember is suddenly being in an ambulance.

I didn’t make the flight, obviously, so I didn’t get to do the school visit I’d been planning for–I was still in high school, you see, just starting to look into college, and I had planned to use spring break to visit one on the other side of the country. Thankfully, I got to visit later, and ended up being enrolled there, but at the time I wasn’t really happy about missing it.

The biggest inconvenience my lovely new disease caused, though, was with my driving.

Did you know in the US it’s illegal to drive within six months after having a seizure? I didn’t. I didn’t even have my license at the time; I was still on a permit. And suddenly I wasn’t allowed to make any progress for six months. Even under supervision, even just around the block, I wasn’t trusted behind a wheel. Which makes sense, but–over less time than I’d like, we discovered my seizures only happened in the morning, and only after I hadn’t gotten enough sleep. I never had to worry about afternoons or evenings. But the law’s the law.

So I couldn’t drive for six months, but I could deal with that, right? But even with medication, it took less than six months for me to have my next seizure. And less than six months for the one after that. It took nearly two years for the law to say I wasn’t a danger during the times I had never been a danger anyway. I was eighteen, and I hadn’t been allowed to drive for two years. And I was only a couple months away from going to college, where I wouldn’t have any driving practice at all.

My driving instructor finagled the system into getting me a test before I left, so I could possibly earn my license. The test was a long ways away, but it was there.

I failed within the first ten minutes. I spent most of the long ride back sobbing.

I did get my license, months later, but in my first three years of college I had five more seizures, so driving was still out of my reach. My junior year, I had a seizure in the small bathroom of my dorm room, which resulted in a faceplant straight into an irritatingly-textured wall, leaving me with some sweet facial scars for a few months. I’d just made it past the latest six-month period. When I got back home, scars still visible, I told my mom I’d got them when I tripped.

Since I was still so out of practice with driving, she insisted on doing a trial run with her as an observer. Since I was still so out of practice with driving, I failed miserably, had another little breakdown, and told her the truth. I also admitted I wasn’t sure I’d ever be able to drive. The past five years of my life hadn’t given me any indication that things were going to change. I’d keep having seizures, and the six months would reset, over and over and over. I told her even once I lived by myself, it would be pointless to own a car, because it was pointless to pay insurance on something I would probably never be able to use.

That last seizure was two years ago. My medication’s been stabilized, and I always get enough sleep. I graduated last year, and I’ve been driving safely ever since. As sob stories go, it ended up working out okay. Now my biggest worry with driving is my proficiency in getting lost.

It would be great to say I triumphantly overcame my disability. But chronic conditions don’t work like that. I still have that tiny niggling feeling in the back of my head telling me not to get too cocky, because epilepsy isn’t curable, and being 99% sure that my meds are on the right track this time still leaves one percent that could set me back all over again. Unless medical science pulls a miracle, that little feeling is never going to go away. I just have to live with it. And I do.

I still have one of the scars on my nose, incidentally. I kinda like it.

Cristina Hartmann: Tropes About People With Hearing Loss

Cristina Hartmann is a writer (also publishes sci-fi works under the pen name Victoria Halley) who likes to jump out of planes and read books (not at the same time). Cristina has a weakness for YA books featuring female protagonists who can wield a sword like nobody’s business. When she’s not writing, jumping out of planes, or reading, Cristina loves cooking, eating, and playing with fuzzy creatures. (Alas, she’s not a fish person.)

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Predictably, many of the tropes relating to D/deaf and hard of hearing characters deal with communication methods and degree of hearing loss. Most, if not all, of these tropes have to do with people’s assumptions and wishful thinking about hearing loss.

All D/deaf and hard of hearing people are flawless lip-readers.

Ah, that would be nice, wouldn’t it?

Studies have shown that even the best lip-readers can only understand approximately 33% of a spoken conversation by lip-reading alone. Lip-reading isn’t a magical solution for people with hearing loss. At best, it’s a slightly helpful technique.

I’ve read and seen this trope all too often in books, movies, and television. When I was eleven, I read this YA mystery about a deaf girl detective who could lip-read perfectly from 100 yards away. In fact, her lip-reading skills helped her crack a murder mystery she read the criminals’ lips. I admit it, I rolled my eyes a little.

This trope is a lazy workaround for a character’s hearing loss. If a character is an expert lip-reader, then the writer doesn’t need to deal with the realities of communication briers. This result doesn’t just give people the wrong impression about D/deaf and hard of hearing characters, but it causes writers to miss some potentially great storytelling opportunities.

All D/deaf people use sign language.

This trope may seem to contradict the previous one, but it doesn’t. I suspect that there is an assumption that one is an amazing lip-reader and a fluent signer.

Not all deaf and hard of hearing people know American Sign Language (ASL), let alone are fluent. There is a large array of communication methods used by people with hearing loss: ASL, Signed Exact English (SEE), Simultaneous Communication (SimCom), speech, cued speech, et cetera. The person’s choice of communication method is a very individual and personal one.

It’s not fair for anyone to assume that they  know what a person’s communication method is just because they have a hearing loss. Maybe they sign, maybe they don’t. This trope prevents people from thinking more critically andasking the person what communication method they prefer. These assumptions can lead to disastrous results in real life. (One of my friends had a sign language interpreter provided for her, but she didn’t know ASL.)

On a related note, not all deaf people (or all signers) are active members of the Deaf Community. Many are, but many aren’t as well. Once again, it’s a highly individual decision.

All D/deaf people are mute.

This trope is slowly disappearing, but it rears its ugly head occasionally.

One of the most famous deaf-mute characters of modern literature is Nick Andros from Stephen King’s The Stand. (Psst. He also fits the first trope. He’s a master lip-reader.) There are many more examples, particularly in older literature.

The problem? Pathological deaf-mutism is extremely rare. Some D/deaf and hard of hearing people choose not to speak vocally, but their silence doesn’t mean that they’re mute.

All D/deaf people are completely deaf.

Again, “stone deafness” isn’t common. It’s quite rare for someone to be completely deaf. Even people who are diagnosed as profoundly deaf have some hearing. (Funnily enough, I’m one of the extremely rare individuals who iscompletely deaf, but I’m the exception, not the rule.)

The importance of tropes and why we should care.

Even though movies, books, and television shows are…well, fictional, they shape people’s perceptions.

Tropes affect people’s assumptions about D/deaf and hard of hearing people. People expect them to be world-class lip-readers, stone deaf, and fluent signers. When people meet someone who doesn’t meet all these criteria, they’ll be confused and frustrated. “But I thought you’d be able to lip-read me!” they think. “They’re just not trying hard enough.” This can lead to unnecessary misunderstandings and friction.

These tropes don’t just affect the perceptions of people without a hearing loss. The pressure to be expert lip-readers can frustrate D/deaf and hard of hearing people. Even today, I feel a little guilty when I tell people, “No, I can’t lip-read everything you say,” and seeing the disappointment in their eyes.

D/deaf and hard of hearing people are amazingly diverse in their backgrounds, communication methodologies, and degree of hearing loss. If the media showed the diversity of the D/deaf and hard of hearing people, maybe a little bell would go off in someone’s head and they would realize, “They’re not all the same!”

The world’s a better place when we see all different ways of living life in fiction and real life.

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In The Secret Value of Zero, a YA sci-fi dystopia, people are ranked at age 1 according to intelligence and ability. Because of her deafness, Meke is relegated to the lowest rank of the so-called “defectives”: Zero. Prosperon, a nation led by scientists and doctors, only consider Zeroes useful as scientific experiments. When an experiment bestows Meke with unexpected powers, she gets swept up in an underground revolution. When she discovers that the revolutionaries only want to exploit her genetic secrets, Meke must decide if she will fight back or be a good girl. She decides to fight back, armed with a poleaxe.

The Secret Value of Zero focuses on Meke’s understanding of her self-worth in a society that considers her worthless. Along the way, she must face resistance from well-meaning adults, and fighting with people who are more “talented” than she is. There’s also some fun swordplay and romance thrown in!

You can find The Secret Value of Zero on Amazon: http://www.amazon.com/dp/B00CTQAM6U

Bethanie Borst: A Middle-Grader’s Perspective on Middle-Grade Literature

Bethanie Borst is a 13-year-old with ADD and ASD. She writes twisted middle-grade fairy tales with her mom, Amie. Their first book, Cinderskella, releases October 2013! Bethanie can be found at http://www.facebook.com/AmieAndBethanieBorst You can visit her mom at http://www.amieborst.com and at http://www.twitter.com/AmieBorst.

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Bethanie:  I’m not sure how to start this blog post.

Amie: *types*

Bethanie: Are you kidding me?

Amie: *smiles*

Bethanie: Stop writing everything I say! Now I’m mad.

Amie: Well, what do you want to say?

Bethanie: I don’t know.

Amie: *laughs*

Bethanie: Me being mad is cute?

Amie: *smiles* *types*

Ever seen the Allstate commercial?  “I’m a random windstorm. Shaky, shaky.”

http://www.youtube.com/watch?v=h4IKsGm4os4

Well, sometimes that’s how life feels when you’re a kid with disabilities.  Because I’m both very random and my life can be, well, pretty shaky.

I’m an avid reader and I read all types of books and genres. I never really paid any attention to whether characters had disabilities (or how many there were) until I was asked to write this blog post. Then I picked up my books and realized there were lots!

One of my favorite kinds of books is action adventure/fantasy. The Rise and Fall of Mount Majestic by Jennifer Trafton captured me as a reader. The main character, Persimmony, might seem like a normal kid to most people, but because I have a disability I get the vibe that she’s ADD.  Mostly it’s the way she talks and thinks. It’s all over the place. Much like me!

“Persimmony angrily kicked a stone (which, unfortunately for her toe, remained in place). ‘It’s all Prunella’s fault!’ she cried. ‘If she hadn’t pestered me about sweeping the floor right in the middle of my glorious dream about rescuing a baby from the teeth of a murderous alligator, I would have never have thrown the broom across the room. Then the broom would never have hit the Giving Pot, and I wouldn’t be here trudging through the Willow Woods in the middle of the night to fetch a new pot from Theodore. And with a storm coming, too!’”

Yeah, my brain kind of works just like that.

Ever seen the tee-shirt, “I’m not ADD, it’s just….hey! Did you see that rabbit?” Yup. That’s me.

Then there are paranormal stories.  School of Fear by Gitty Daneshvari has four kids with phobias. I have a fear of circuses. And screaming.  There’s also May Bird by Jodi Lynn Anderson. The main character sees ghosts. If I saw a ghost, I’d scream and then my phobia would kick into high gear! Ghosts don’t like salt and quartz.  Or spit. So I’d make sure I stockpiled that. *Patooey!*

There’s contemporary fiction like Waiting for Normal by Leslie Connor, Things Not Seen by Avi, Chasing Redbird by Sharon Creech, and Larger Than Life Lara by Dandi Mackall. These characters all have different disabilities. Not all disabilities have to have the same struggles. In Waiting for Normal, Addie is a dyslexic flute player. Bobby, in Things Not Seen, is invisible and is best friends with a blind girl. Zinny, in Chasing Redbird, suffers from depression when her favorite aunt dies. Zinny is also socially awkward and doesn’t like to talk, which makes me wonder if she might have something like Aspergers or ASD. But the best one of all is Larger Than Life Lara who is faced with obesity. Despite her body image, she’s a positive upbeat girl.

Everyone with disabilities handles their situation differently. I used to go to public school but advocated (more like begged) to be homeschooled. School was distracting, boring and disorganized (all those kids taping pencils, making noises and hours of homework made my brain feel like it would explode! Or be eaten by a zombie.). So I started homeschool last year in 7^th grade. I went to a co-op and took high school classes and got all A’s (whereas in middle school I mostly got C’s, D’s and F’s.)

Homeschooling has been a great experience for me to learn the way I need to in order to succeed.  So, you can imagine how excited I was to read stories with characters who were homeschooled.  Stargirl by Jerry Spinelli features a girl who is very different from her peers.  While she does attend public school, she was previously homeschooled. This Journal Belongs to Ratchet by Nancy J. Cavanaugh has a main character (Ratchet) who is homeschooled. In my best opinion it wasn’t a great example of homeschooling, but maybe it is for other kids. In the book, Ida B by Katherine Hannigan, Ida was snippish when she went to public school and seemed much happier as a homeschooler. Although I’ve never been snippy, I’m definitely much more content to stay at home!  People have many reasons for homeschooling, sometimes it’s due to religious reasons and sometimes it’s because kids learn better in another environment.

There’s all sort of disabilities and many ways to handle them. I’m glad to see there’s a variety of books out there so readers can understand what it’s like to have a disability. Or for people like me so we can have someone to relate to!

Thanks for inviting me to be part of this Disability in Kidlit event, Kody and Corinne!

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My mom said I should mention these other great links:
http://www.fromthemixedupfiles.com/2011/07/disability-middle-grade-novels/
http://www.fromthemixedupfiles.com/2011/04/shining-a-light-on-mental-illness/
http://www.fromthemixedupfiles.com/2010/09/learning-differences-in-middle-grade/
http://www.fromthemixedupfiles.com/2012/01/differences-superpowers-middle-grade-novels/

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Bethanie and Amie Borst’s novel Cinderskella is available for pre-order at Barnes & Noble.

Cindy is just a normal 11¾-year-old. At least until she wakes up one night and finds out she’s dead. Well, she isn’t technically dead—she just doesn’t have any hair . . . or a nose . . . or skin. Yep—all bones, no body.

Human by day and skeleton by night, Cindy is definitely cursed. And because her mother recently died, Cindy has no one to turn to except a father who’s now scared of her and an evil stepmother who makes her do the housecleaning with a toothbrush. To make matters worse, the Spring Fling dance is approaching, and Ethan, the cutest boy in sixth grade, doesn’t seem to know Cindy exists. Of course, Cindy doesn’t think letting Ethan find out she’s part skeleton is the best way to introduce herself.

While facing such perils as pickled pig’s feet, a wacky fortune teller, and a few quick trips to the Underworld, Cindy’s determined to break the curse—even for a single night.

Disability in Kidlit Lives On!

As you know, Disability in Kidlit was conceived as a one-month blog event, intended to be a resource for the kidlit community to learn more about disability and encourage more and accurate portrayals in MG/YA fiction. We’ve had an overwhelmingly positive response, and we want to thank everyone who has joined us this month. Because of this response and what we feel is a hunger for more content, we’re thrilled to announce:

Disability in Kidlit will live on!

We have decided to continue Disability in Kidlit as an ongoing blog rather than a one-time event. We will still feature the same types of content (articles about disability and reviews of MG/YA books), and we’re hoping to bring some exciting new content as well!

We have also created a Goodreads account which will allow us to do two things: 1) crosspost reviews that appear on the blog, and 2) provide a comprehensive, up-to-date list of MG/YA novels featuring characters with disabilities. We can’t vouch for these books–we haven’t read most of them ourselves–but we hope this will help connect readers with the books they want. You can find more info about our Goodreads account on our new Book List page, including the ways we’d love for you to help us curate our bookshelves.

This month couldn’t have happened without all the work from our contributors, and that will continue to be the case. We are actively seeking posts from both current and new contributors! If you’re interested in being a contributor, please see our brand-new, shiny guidelines.

We’ll be taking the month of August to prepare and will re-launch in September! Posts will appear weekly rather than daily to ensure a steady stream of posts and the moderators’ relative calm of mind. We couldn’t be more excited for the chance to continue. We’re so thrilled that you all share our passion and hope you’ll be back with us come September!

Thanks for everything!

Kody Keplinger, Corinne Duyvis, and our fabulous newest addition to the mod team, Kayla Whaley

Tracey Carter reviews WILL & WHIT

Tracey Carter is a Library Associate II in Teen Services with Frederick County Public Libraries and is earning an MLIS from Florida State University. Lots of things make her nervous. To keep from worrying too much about everything Tracey likes to spend her free time reading YA books, playing video games, knitting, and keeping up with new technology trends. The best book she’s read so far this year is a three way tie between Eleanor & Park by Rainbow Rowell, Etiquette & Espionage by Gail Carriger, and Will & Whit by Laura Lee Gulledge. If you put an ampersand in your book title instead of the word “and” Tracey would appreciate it.

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Writing this review makes me nervous. Knowing that you, out there in Internet-land, will be reading this review, makes me nervous. For me, that’s what generalized anxiety disorder (GAD) is: lots of things make me nervous. It doesn’t stop me from doing anything, it doesn’t prevent me from living the life I want to live, but it does make me a bundle of nerves and it does make me think very carefully before doing things that other people might not think twice about. Some of my anxieties and fears are perfectly reasonable, and others…not so much.

I can’t tell you when my anxiety began. In all likelihood it’s something that’s always been there in the back of my mind, but I was officially diagnosed with GAD in my mid-20’s. The diagnosis didn’t change anything for me, it just told me something I already knew: that I am a nervous Nellie. But somehow, putting a name to it made me feel better. If this is actually a condition it means that it can be treated. And if it can be treated that means it can get better.

One thing I have always loved is reading. Even as a child I could lose myself in books for hours at a time. Reading has always felt safe to me. Even reading scary books delighted me as a child. Books were, and are, a safe space for me. There are no judgements, no nagging questions in the back of my mind, no worrying about anything. Books are an escape. And just as books are an escape for me, lamps are an escape for 17-year-old Wilhemina “Will” Huckstep in Laura Lee Gulledge’s newest graphic novel, Will & Whit.

Will lives with her Aunt Ella Foxx in Virginia and together they run Foxxden Antiques. The first thing we learn about Will is that she loves to make lamps, and on the very next page we find out why her hobby is so important to her. As Will explains, “It’s embarrassing, but I’m scared of the dark. You could call it an overactive imagination, but if your shadows were like mine, you might be weary of them, too.”

Throughout the book Will talks about being afraid, about trying not to freak out, about trying to avoid thinking about things that bother her, but not once does she use the word anxiety. Everybody experiences anxiety differently and everybody describes their own anxiety differently, and some might not even call it anxiety at all. You might come from a family of worriers, you might be a worry wart, or a nervous Nellie, or Chicken Little. But no matter what it’s called, anxiety can still be a paralyzing part of one’s life. Like Will I’m lucky that my anxiety is manageable. I know for others that this isn’t the case.

Will uses a variety of coping mechanisms throughout the book to manage her fears and her anxiety. Building lamps and doing something constructive to distract herself may be a form of Cognitive Behavioral Therapy (CBT) for her. CBT can be helpful for some people with anxiety. I tried it and found that it did help, but my CBT didn’t involve building lamps. I focused on exercising, like running, walking, and yoga, to give my mind a goal to focus on and my body something to do rather than sit around and get quagmired in fear and worry.

Noel and Autumn, Will’s BFFs, provide her with a wonderful support network. Aunt Ella also encourages Will to go out and spend time with her friends and to do things that a normal teenager would do. A caring and encouraging support network of family and friends is something we all need, but this is especially true for those struggling with mental health issues. But I have to pause for a minute because I can only imagine at this point, dear reader, that you’re wondering who Whit is? Seven paragraphs into a book review of Will & Whit and I’ve only told you about Will…

I’ve focused my review on Will because she’s our main character, she’s the one with anxiety, and she’s the one from the book I identify the most with. But I also haven’t mentioned Whit yet because Whit isn’t a person. Whit is short for Whitney which is the name of the hurricane that’s about to blow through Will’s town, and for someone who’s afraid of the dark storms can be very scary things indeed.

The best part about this story being told as a graphic novel is Gulledge’s ability to show us Will’s anxiety. Throughout the book we can literally see the shadows and worries and anxieties that plague Will. Unlike the thick lines used to draw the characters and the backgrounds, Will’s anxieties are shown through stippling, or for those unfamiliar with art, drawn with groups of small dots very close together. This allows the background and other things going on in each frame to remain the focus, while still allowing the readers to see what’s going on in Will’s mind. For readers with anxiety, this probably won’t be surprising. For readers without anxiety, it might be surprising to see some of the things, both rational and irrational, that someone with anxiety might be thinking about or focusing on.

We’re also able to clearly see which parts of the story happen before the storm, which parts take place during the blackout following the storm, and what parts take place after the lights come back on. Initially, pre-storm, the pages are framed in white. During the blackout the pages are framed in…you guessed it! Black. And after the black-out the pages are once again framed in white.

Gulledge’s use of a main character with anxiety is honest and charming. Will’s fears aren’t shied away from, nor is her mental health overemphasized. Anxiety is simply part of Will’s life and Will’s story, and while I can’t speak for anyone else, anxiety is simply part of my life and part of my story. It doesn’t dominate my life, it doesn’t keep me from leaving the house, it doesn’t keep me from doing the things I love, but sometimes anxiety makes me hesitate, sometimes anxiety distracts me, sometimes my anxiety embarasses me, but anxiety isn’t WHO I am. It is a part of my story but it isn’t the whole story.

Also, I don’t want to give away any spoilers, but it is possible that in the story Will’s anxiety is a manifestation of post-traumatic stress disorder (PTSD) which is a condition I do not have. Readers interpret stories in different ways and as someone who has anxiety I read Will & Whit as the story of an anxious teenager who learns how to cope with and how to deal with her anxiety. If you have PTSD or know someone with PTSD you might read Will & Whit as the story of a teenager suffering from PTSD who learns how to cope with and how to deal with PTSD. I cannot speak to how true or realistic the story might be from a PTSD perspective, but from my perspective Will & Whit can certainly give readers insight into what it’s like to live with anxiety and what’s it like to deal with fears and worries that you know are perfectly irrational but that you still have anyways.

Discussion #4: Disability tropes

For our final discussion post, we asked our contributors the following question:

Which are your least favorite disability tropes?

Here were their insightful answers:

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Kayla Whaley:
My least favorite disability tropes may also be the most common (at least in my experience), which is precisely why they’re my least favorite. These tropes are some of the only representations of disability people see, which is very dangerous. After all, the media we consume greatly impacts how we view the world, so seeing these tropes only reinforces ableism and ignorance.

The first (though these aren’t ranked in any particular order) is that of the disabled saint. The pure, innocent, good little cripple. These characters serve largely as inspiration porn for both the audience and the other characters. Think Tiny Tim. It shows the ablebodied that those of us with disabilities are perfect despite (or perhaps because of) our tragic disability. So if we do anything outside those ideas of “goodness”, it’s quite a shock for the ablebodied around us. I can’t tell you how many times I’ve cursed or talked about drinking with friends and have gotten actual gasps and nervous giggling, because if I’m in a wheelchair, I must be a saint, right? I must fit into their tiny, preconceived box of “good”.

The second is the disabled villain. Interesting how the two most common tropes dealing with disability are polar opposites and neither come even close to reality, huh? There are so many examples of the disabled, disfigured, disgusting villain: Darth Vader, Captain Hook, innumerable weekly baddies on shows, etc. The (typically visible) disability serves as a cue to the audience that this character is one deserving of your revulsion and fear. Yeah. That’s definitely a message I want sent to the world.

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Marieke Nijkamp:
Apart from the whole disabled character as inspiration (see inspiration porn), one of the tropes I hate most is the magically healed disabled character. The one where, at the end of the quest or story, the crippled character finds himself able to walk again because he’s learned to be nicer, or the blind character finds herself able to see because she was willing to sacrifice herself for her friends. After all in real life, everyone wants to be healed/disability makes you incomplete/if you only try hard enough…?

Because that’s the implication of such story lines. That disability equals something incomplete at best and more often something that’s morally reprehensible. It implies that only if you learn how to overcome that, only if you learn you’re too be generous, you’ll be healed and happy and be able to reach your full potential. (And secretly, that’s what we all must want.) Heavens forbid you’re happy just the way you are.

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s.e. smith:
Obviously, magical cures are a big frustration for me–the disability that is magically fixed to further the plot, the disabled person stripped of her identity as a disabled person by a cure (and usually so appreciative of being saved from the eternal suffering and torment that is disability). This narrative positions disability as something tragic and terrible that needs to be fixed, and sometimes as something a character should be ashamed of–only after the disability is cured does the character become whole.

I also really loathe one-note depictions of disabled characters, where the character becomes consumed by the disability and doesn’t have any other qualities or characteristics. This is often compounded by another trope, such as the super crip or bitter cripple, two other depictions of disability that also make me gnash my teeth in frustration. These one-dimensional depictions aren’t authentic to real experiences and they also contribute to ableist attitudes in society.

Disability-as-educational-tool is another trope that should have been taken out back and shot long ago. Disabled people are human beings, not object lessons or props for character advancement. If a disabled character is being used to educate other characters, give them some kind of motivation, or teach a Very Special Lesson to other characters and/or readers, that character is being abused. Every time this kind of depiction of disability comes up, it reinforces the idea that this is the role of disabled people in society, to teach and educate the people around them, rather than to live as just another person navigating a sometimes complex and always diverse environment.

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Maggie Desmond-O’Brien:
In my opinion, one of the most damaging disability tropes is the idea that a disability can be “healed” through sheer force of will, without treatment. That instead of the infinitely more difficult task of living with the disability, you can simply eliminate it in one fell swoop by being “tougher” or not buying into the “system.” My experience with this has been mostly in the mental illness arena, which is tricky–some acute mental illnesses really do pass with time. But others, such as certain types of depression, bipolar disorder (my own disability), and schizophrenia, tend to be lifelong battles. You’ll have good days and you’ll have bad days, you’ll have days where you accept it and days where you don’t, but the truth is that it’s never going away and you just have to deal with it–no matter what pop culture tells you.

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Corinne Duyvis:
My first pet peeve is the disabled relative–sibling, parent or child–who only exists to further the main character. The disabled character rarely has an actual personality or plot line of their own, and does not get to have a normal, complex familial relationship with the abled character; instead, they exist to provide angst or obstacles, or to make the abled character look sympathetic and heroic for taking care of them. Sometimes both! Remember: disabled people are fully-rounded people, with lives and passions of our own, not merely bit parts in abled people’s lives.

My second pet peeve is the ~magical~ disabled person, who often holds–or is–the clue to saving the day. They’ll be the only person with a magic ability, or, in a world where these are commonplace, their ability will be the most special or powerful. Examples include Dinah Bellman from Stephen King’s The Langoliers or Little Pete from the Gone series. This trope can also be used without any supernatural aspects, in which case the disabled person will have savant-like abilities such as Kazan in the film The Cube or Kevin Blake from the TV series Eureka. This trope bugs me because it’s so Othering; the disabled character is something to be ooh-ed and aah-ed over, feared or worshipped, set apart, instead of just being a regular person dealing with their own crap alongside the rest of the cast.

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Kalen O’Donnell:
My least favorite disability trope? Yeah, that’d have to be ‘character has a deep dark secret – turns out he/she is bipolar, or else someone close to them is’. Sure, usually this one is trotted out with the best of intentions, as our heroes learn or express by the end of the story that its nothing to be ashamed of or they love and accept them in spite of it, etc, etc. But a book is more than just its climax or last three chapters. If a story makes an impression on a reader, its the whole book that’s going to stick with them, not just the shiny red bow that wrapped everything up all nice and neat at the end. And so while the author may have hoped their story would impart the idea that a bipolar disorder is nothing to be ashamed of, to any reader who can actually relate to that, they might actually just be confirming that ‘yup, people are ignorant about this sort of thing and there is a reason to keep it a deep, dark secret….at least unless and until you meet that special enlightened person who loves and accepts you anyway.’

So how about we see more bipolar characters who are living with it with grace and dignity, neither hiding it nor flaunting it. Who don’t shy away from discussing it with the romantic interest if and when it ever becomes relevant, and is comfortable enough with it to refuse to be belittled or patronized by people who don’t know what the hell they’re talking about? That’s a trope I could get behind.

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Kody Keplinger:
I’m forever frustrated by the “damaged disabled person” trope – wherein the disabled character is a brooding, broken character, scarred both physically and mentally, etc etc. I see this way too often, and it makes me so angry. Where are all the happy disabled people, yo?

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What about you, dearest readers? Any thoughts on the above tropes, or do you particularly loathe a trope that hasn’t been mentioned?

Kalen O’Donnell: Much Ado About ADD

Writer, actor and occasional print model. Trained in the fine art of Lying Creative Truths, studied at the Institution of Making Things Up, and holds a Bachelor’s Degree in the field of Convincing People to Give Him Money in Exchange for the Performance of Ridiculous Labors. Significant moments in his career training have involved falling out of windows, driving other people’s expensive cars without crashing or obeying traffic laws, and kissing pretty boys and girls because the nice man in the director’s chair assured him it was a legitimate acting gig. His last recorded full night’s sleep was in the late nineties, and he would really appreciate it if you’d pass him some more coffee. Find Kalen on Twitter.

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I am so totally ADD.

No, for real. I’m totally scatterbrained, procrastinate like whoa (just ask Corinne and Kody about how long it took them to get this post from me), and in general have so many wee little thoughts buzzing around me noggin’ that it’s next to impossible to focus on any single one of them long enough to accomplish even the simplest of tasks.

It’s been that way since high school. I had an Enforcer Mom, one of those stern taskmaster types who used her superpowers of Hyper-Vigilance to ensure I dedicated myself to excelling in all things in life at all times (for my own good, natch). She would make me sit at the kitchen table before every exam and study within eyesight so she could make sure I wasn’t goofing off as I was wont to do, and even with all that, I STILL couldn’t make myself study. I would sit at the kitchen table and flip through textbooks with a look of intense concentration on my face, while internally I was busy kicking ass on level eight of Super Mario Bros. 3, and then the Shadow Man level of Megaman 3 and then trying to figure out how to beat that damn boss from Streets of Rage 2 and so on ad nauseam. I LITERALLY had NOTHING better to do; I was practically super-glued to my chair under supervision with my textbook and notes in hand, and yet still I had an allergic reaction to actually doing anything productive with my time.

Yeah. I was THAT awesome.

This pattern repeated itself in college (where I dropped out), in most 9-5 jobs I tried (all of which I quit or was fired from) and my attempts to write a book and kickstart a writing career (which progressed from taking two years of stops and starts before finishing one 50K book, to then writing a 50K book every couple months and then doing absolutely nothing with those drafts because OMG you guys revisions are HARD).

And here’s the thing. I totally knew I had ADD. Wasn’t angsting about it either, like oh noes, I have a messed up brain, I am a Super-Freak, if only there was some toxic ooze to mix with my synaptic misfires and elevate me to full on supervillain status, whut whut. Nah. It was my go-to apology, my self-deprecating trademark shtick for when my usual procrastination pushed me from loveably anti-punctual to just completely obnoxiously LATE.

‘Ugh, I am SO sorry dude/dudette. I can’t believe I took so long getting this to you, I am so ADD, what is my brain I can’t even.’

Said with a smile and a laugh, but the thing was, I wasn’t even joking, I totally knew I had ADD, I just…didn’t think it was a big deal. I mean, it was just ADD. I’d been this way my whole life, and bad habits aside I still paid my bills and fed and clothed myself and kept a roof over my head without ever actually resorting to a life of crime. (Except for that one time, but that doesn’t count. I was coerced, long story, shush, I had a point here).

Because here’s the thing about ADD awareness as a teen, the first impression garnered from books and shows and movies. It tends to cater to one of two extremes.

The first is, OMG you have ADD but it’s okay, it’s okay baby, just take your magic pills and it’ll all be okay (said while stroking a child’s hair as though said child is a wild animal that will bolt if not properly soothed).

These are the books, shows and movies that are so consumed with making sure people are absolutely clear that ADD is NO BIG DEAL and you are TOTALLY OKAY AND NORMAL and NO, MOMMY’S NOT CRYING, SHE WAS JUST CHOPPING ONIONS that in actuality it comes across like you’ve been diagnosed with a terminal illness and everyone’s trying to be strong for you.

Which umm… not the best impression you want to give to a child, srsly.

So then you get the second extreme which attempts to normalize ADD by treating it so hyper-casually that it in essence becomes a punchline. Oh it’s just ADD. Practically every other person has it, it’s no big deal, so you’re a little flighty, a little flaky, whatevs, it is allllll good. You’re just ADD.

And then shocker of shockers, you end up with a bunch of attention deficit dudes like me who look at said two extremes and are like, well I definitely don’t feel like I’m dying so I’m gonna go with Door Number 2 and treat it like it’s barely worth mentioning. It’s just a little personality quirk, pay it no more mind than that. And time passes and I’m working, I’m a semi-productive member of society, I get by. So what’s the problem, right?

Except, you know… I’m still ADD. And it doesn’t quite work like that.

I finally got diagnosed last year when things came to such a head that I was kinda just like screw it, I might as well look into this whole ADD thing and see if there’s something I should be doing differently. And sure enough, they gave me my shiny diagnosis, and they gave me my magic pills to take in the morning so everything calms down upstairs and I can focus on one damn thing at a time, and I’m still treating it like a punchline. Because partly that’s just who I am, and if someone’s not dying, EVERYTHING’s a punchline to me, but also partly it’s residual embarrassment like, why is everyone making such a big deal, it’s just ADD. It’s so ingrained in me that I attempt to treat it like it’s inconsequential even now that I know better.

Because here’s the truth about ADD, the impression I would like to see more kids like me get early on so they can ask the right questions and get the right answers:

ADD isn’t an end of the world big deal. It’s really really not. But it is A deal, it’s a thing. It’s a disability. It puts you on a different default setting. Getting an official diagnosis and medication to help you handle ADD isn’t confirming your super-freak status or accepting that there’s something wrong with you. It just gives you another set of tools. That’s all.

I mean, we’re all just a bunch of hyper-evolved monkeys at the end of the day. Ask any scientist, the only thing that differentiates us from our feces-flinging cousins is our critical thinking and tool-using capacity. Yeah, sure, that’s probably not how they’d put it, but POINT IS. We all use tools. It’s what makes us human instead of just your average primate. So it really is no big deal if some humans just happen to use a different set of tools than others. The important part is just making sure everyone knows what those tools are, and where to find them if they need them.

Marieke Nijkamp: Memories of Infinity

Marieke Nijkamp is a writer, professional dreamer, and proud-to-be geek. She holds degrees in philosophy, history, and medieval studies, and loves learning new languages. In the midnight hours of the day Marieke is a storyteller, and all her stories – ranging from MG to YA, literary to fantasy – have a sprinkling of magic to them. Find her on Twitter. She 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.

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Well I remember every little thing as if it happened only yesterday

We danced to Meat Loaf’s Paradise by the Dashboard Light, and sung along until our throats were sore. It was the last song of the night, but we didn’t want it to end. Not yet. Not now. Just one more song. We drew out time as long as we dared, until it snapped back into place and the clock continued ticking.

It was one of two proms I had, and though I’m sure I had a fantastic time during the second one–with the friends I’d made back in the “real” world, with college acceptance sorted, with the midnight blue dress that made me feel pretty despite the fact that medication caused me to lose so much weight that strangers on the street offered to feed me–the first one sticks in my mind.

By that time, I’d been living in the youth group of a medical rehabilitation facility for almost a year. One of many children and teens who had genetic or congenital disabilities, developmental disabilities, acquired disabilities, chronic illnesses… we were a collection of all sorts. Our school was a special school.

And I’ve always wondered what it would’ve looked like to the outside world, this dance of ours. (Would we be pitied?)

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When I first got to that facility, at fourteen, my condition was such that I spent my days bed-ridden, reading.

By the time that dance came around, I’d found my way back to school. I spent my afternoons horse riding and swimming and other things that classified as physical therapy. In fact, I went to a plethora of therapies–and hated them all. But they were an integral part of daily life. Classes were scheduled around our therapies–not too hard in a class of four.

When I left at fifteen, I was sure I’d made friends for life. Because that’s how you feel when you’re fifteen. But at the same time, we all knew better.

During that year, we lost friends. Death was a part of life too. And sometimes it felt like the ones who finished their therapies were the ones that got away. Because it’s young-adulthood compressed in a year. Safe and scary and always in transit.

But sometimes we had moments when time stopped for us. (And sometimes, we didn’t want to grow up quite yet.) That night it felt like there were dozens of us. And at the same time it felt like it was only us. (Neither was true.)

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When I got to the facility, it seemed overwhelming and threatening. I was an Aspie living in a group home.

Long, long before the dance it felt like the safest place on earth. Because within its walls we could be ourselves. We were all different. We didn’t have an understanding of normal, because there simply wasn’t one. And yet… We complained about the food. We complained about the curfew. We had competitive, kamikaze-like wheelchair games. We pulled pranks.

To the dulcet tones of Meat Loaf, it didn’t matter if you danced on two feet, two wheels, crutches. (Who cares, anyway?)

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When I left home, it felt like such a different world. Not one I was used to–the walls and the bed and the occasional fragments of outside. The world I was used to only existed in books. They were my escape rope and my lifeline.

And yet.

I learned only minutes after arriving at the facility–where I came home, too–what a thousand books hadn’t told me.

That we weren’t Other. That we weren’t different. But that we were there, that we were us.

And that we existed.

And in that moment, I swear we were infinite. (Thank you, Steven Chbosky.)