Mindy Rhiger reviews CENTAUR RISING

Mindy RhigerMindy Rhiger is a librarian specializing in children’s books.  She was born with one arm and has worn a prosthesis since she was a toddler.  You can read all about it on her FAQ called Fake Arm 101.  Mindy shared more books about being different in an article in Book Links called Just Like You: Helping Young People Understand Disabilities Through Books. She will be serving as a judge on the inaugural Walter Award, which will honor diverse teen fiction in 2015.

Cover for CENTAUR RISINGWhen a review copy of Centaur Rising by Jane Yolen landed on my desk, I immediately put in my “to read” pile.  Not because I have any particular interest in centaurs.  Nor for the name recognition of the author, though I have enjoyed many of Jane Yolen’s previous books.  My initial attraction to the book was based on the reference to “birth defects caused by an experimental drug” in the book description on the back cover.  How many middle grade novels reference Thalidomide?  Centaur Rising is the only one I know of.

Thalidomide, as explained in an author’s note, was an anti-nausea medication taken by pregnant women in the late 1950’s and early 1960’s.  It was eventually banned when doctors learned it caused birth defects in children.  Most middle grade readers aren’t going to know about Thalidomide.  It was well before their time, as it was before my time as well.  Nonetheless, I knew about it in the late 1980’s when I was a kid because people of a certain generation saw my limb deficiency and immediately connected it to Thalidomide.  I regularly had to tell people that I was not a “Thalidomide Baby,” that my congenital limb difference was random.  It remains one of many assumptions people often make about me, and I still find myself having to explain that I am not old enough to have been affected by Thalidomide.  There is also the fact that it was never approved for use in the United States, and the affected children (adults now) are largely European or Canadian.

In Centaur Rising, Robbie has the typical “Thalidomide Baby” traits.  He is described by his sister Ari as she notes how he wouldn’t be able to help if she needed anything when tending to a horse in labor on their farm: “He can’t use his legs, his pelvic bones are missing, his arms are too short, and his hands are like flippers because the fingers and thumbs grew fused together.”

When the foal turns out to be a centaur, the characters have various reactions.  The adults are concerned about what people will think.   Ari wonders if the creature is magic or a mistake.  Robbie connects with the baby centaur immediately.  He says that they are both “half something.”  Half human, half animal.  It sounds harsh, and I suppose it is harsh to read that a child views himself as only part human.  But it is true that kids affected by Thalidomide were called “seal children.”

It is worth noting here that a version of Centaur Rising was originally published in the short story collection Half Human.  In the story, the character with the birth defects died at birth, and the family names the centaur after that lost child.  In the book version, the child and the centaur consider each other brothers.  They both feel freakish and need protection from those who would hurt them or exploit them.  Robbie’s father represents all villains here as he treats Robbie harshly and wants to cash in on the centaur’s potential as a moneymaker.

The idea that Robbie relates in any way to the centaur isn’t exactly a comfortable idea for Robbie’s family, but by the end of the book everyone in the family has learned something or shifted perspective thanks to Robbie and his relationship with the centaur. This element of the plot came across as didactic to me, and I didn’t think that either Robbie or Kai were fully fleshed out characters, which made the ending in which they begin a charitable organization for kids with disabilities feel somewhat inauthentic.

In the end, Ari learns that the creature was not a mistake at all.  He was magical.  He transforms her world and perspective in many ways, and by extension, her brother with all of his differences has an inspirational element to his character.  I couldn’t help but wish that there was an option other than magic or mistake offered for Robbie and Kai. Perhaps, like me, they might just be different for no reason and with no obligation.

Despite the elements that I saw as didactic or inauthentic, there is a lot that kids will like in this book.  Ari is a relatable character, and her story is satisfying.  Readers who are drawn to horse novels or realistic fantasies are the most likely to appreciate this gentle, uplifting story.  The author’s note offers more information about Thalidomide, horse therapy, and historical language for people with disabilities for those who are interested in further context. Centaur Rising presents opportunity for teachers or other educators to bring up a discussion of preconceived ideas about people who are different as well as give some historical context to the way that our treatment of people with disabilities has changed.  There is a lot to talk about in this story, and if the book can start those, often uncomfortable, conversations about how we view people (or creatures) that look different and how they are represented in fiction, I count that as a good thing.

Discussion #7: Warning Flags and Turn-Offs

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:

What kinds of words, phrases, or situations used in book or character descriptions send up warning flags for you? We’re thinking of clichés, ableist language–anything related to disability that may be a turn-off.

Our contributors sent the following responses:

Natalie Monroe: What I hate is when books try to ‘beautify’ disabilities. For example, the character has a limp, but we don’t know the ugly and gritty, like maybe his/her one hip is higher than the other; or he/she lurches forward with every step; or he/she walks bowlegged or duck-footed. It may be that to make the character seem attractive (I have never read a book in which the character in a wheelchair doesn’t have a nice, straight back. My back is as curved as a waterslide), but the point is to make the character’s personality eclipse their physical appearance.

Tyrion from A Song of Ice & Fire by George R.R. Martin is a good example: he’s described as hideous in text, but fans still go wild over him because they find him funny, clever and honorable.

Sara Polsky: I get frustrated by any reference to a character “overcoming” disability or anything that sets a character with a disability up as an inspiration.

s.e. smith: Well, magical cure narratives, obviously. But if I’m casually looking at jacket copy, things I tend to look out for are ‘despite her disability’ or ‘overcoming adversity’ or ‘brilliant but [disabled]’ or something along those lines, where characters are separated out from their disabilities. I’m also leery of anything that talks about disabled characters as inspirational, courageous, or amazing just because they’re disabled. Language like ‘wheelchair bound’ also makes me very uncomfortable, as it suggests the publisher isn’t in tune with disabled people, and that the target market for the book is nondisabled people, not people like me.

I think this is one area where authors are really in a bind, because many don’t have control over their cover copy, and the flap copy may have nothing to do with the book. Those who are in a position to advocate definitely should, both to send a message to the publishing community and to ensure that their books get to people who need to read them. If I was buying a book for a recently-disabled teen, for example, I wouldn’t get something with a cover that described people like her as ‘wheelchair bound’ or ‘overcoming adversity,’ because that’s not language she needs to hear ever, but especially in the early stages of adapting to disability.

Marieke Nijkamp: I’m seconding that completely; the adversity narrative makes me feel incredibly uncomfortable. It’s so inherently othering–people with disabilities may be lesser, but look at what they can still achieve! Aw, yay! /sarcasm

Closely related are those instances when books and/or blurbs talk about disabilities in terms of inspiring other characters. We’ve talked about inspiration porn before, so I will not say too much about it, but I’d like to think it’s not my only purpose in life to be an inspiration to able-bodied people.

Lyn Miller-Lachmann: I think the protagonist with Asperger’s who solves a mystery a la Sherlock Holmes is overdone. It feeds into the same kind of compensatory superpower cliché that has characters with hearing impairments read lips perfectly from across the room. You don’t do justice to a person with a disability by portraying characters with disabilities as superhuman, because most of us aren’t superhuman and are doing the best we can. I understand that the cliché is well meaning in that it acknowledges that persons with disabilities can and do make contributions to society.

And my own character with Asperger’s, Kiara, dreams of being one of the mutant superheroes of the X-Men. In fact, though, she helps not by being extraordinary, but by being present.

Corinne Duyvis: In addition to the excellent examples already listed, I tend to get turned off “autism books” when the flap copy references the character’s “unique worldview” or starts out listing all the character’s peculiarities. I’d rather know what actually happens in the book. Something like this is usually a good indicator that the MC is seen as quirky and special and otherworldly and, well, is written with a neurotypical audience in mind. Also: “doesn’t let disability define him/her.” Gag.

Oh, and plots about how difficult it is having a disabled sibling or parent. While it may be true in many cases, it’s an overwhelmingly common narrative, and it contributes to a really problematic idea of disability.

Kody Keplinger: The “inspirational” thing is an immediate turn off for me, too. Blindness specific, though, any time a character is introduced in a way that shows us how advanced their other senses are (this is a myth, people. When one sense is cut off the others don’t get better, you just get better at using them).

Furthermore, whenever a blind character is introduced who needs help with the most mundane of things (cutting vegetables, for instance) and they spend a lot of time bemoaning how difficult it is to do things when you can’t see. I’ll shut a book pretty fast for those offenses.

Any additions, beloved readers? Share them in the comments!

Discussion #6: If We Could Tell an Author One Thing …

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:

If you could tell an author writing a character with your disability one thing–besides “do your research”–what would it be? For example: a piece of advice, a warning about a common inaccuracy or iffy plotline, etc.

Our contributors share the following:

Kody Keplinger:
I’d remind authors that blindness, like all things, is on a spectrum. Most characters depicted in fiction are completely blind – they see nothing. In reality, only 10% or so of blind individuals are completely blind. The other 90% fall on a spectrum. Depending on the disorder or trauma that caused the blindness, a person could see in a thousand different ways. So many people don’t realize this, though. I actually get accused of faking my blindness because I can read large print text on my phone. I often wonder if this is because the media only portrays complete blindness as “blind” and rarely acknowledges the other 90% who have some vision.

s.e. smith:
Something that’s really been bugging me a great deal lately is media and pop culture depictions of OCD. OCD is not about being ‘obsessively’ neat or fussy about personal appearance — it’s a very complex mental health condition that has serious ramifications and manifests totally differently in different people. I’m especially tired of the stereotype that people with OCD are super-clean (although I do keep a very tidy house).

It might help to break down what OCD is actually about — obsessive thoughts, and compulsive actions. OCD involves intrusive, traumatic, aggressive thoughts that don’t go away, and compulsive rituals that people use to manage them. Maybe for some people that’s checking the stove four times before leaving the house, or having to double and triple-check locks. But it can also involve hair pulling, or needing to reorder jars on the shelf, or being completely disrupted by environmental change. Avoid cheap shortcuts when depicting OCD, and make it a condition with actual consequences instead of the figure of fun or something quirky.

Corinne Duyvis:
I’ve spoken a lot about autism, but less so about AD(H)D. I’d love to see more accurate and varied portrayals: It’s not all about distractibility, impulsiveness and hyperactivity! Those traits may be common, but I’d like to see, for example, characters struggling with making decisions, or experiencing hyperfocus.

Lyn Miller-Lachmann:
I’d ask authors to avoid arranging scenes and entire plot lines around characters with Asperger’s who take everything literally, particularly if the author intends to use it for laughs. It feels as if you’re laughing at us and not with us. Besides, most tweens and teens with Asperger’s have learned what an idiom is and know the difference between literal and figurative meanings, even if the literal meaning conjures amusing images in our minds.

Marieke Nijkamp:
I’d love to see more spectrums, especially when it comes to daily life with a disability. For example, when it comes to my arthritis, it means I am in pain almost every day. It does not mean I’m in the exact same amount of pain every day, that the pain itself is exactly the same, or even that the pain is the worst of it.

Some days, I can barely hold a hairbrush. Other days, it’s more like an annoying ache in my bones. Some days, my painkillers are heavenly (and anyone who thinks it’s acceptable to come talk to me about how medication is poison can get out and check their privilege), other days I barely notice them. Some days, I can ignore the pain, and other days, it chips away at the very core of me because it’s so very invasive. It’s a spectrum, and no day is quite like the other.

Kayla Whaley:
In terms of my own disability (Spinal Muscular Atrophy), I’d like authors to consider the physicality of it beyond not being able to walk. Realize that neuromuscular diseases don’t affect ONLY one’s legs. My entire body is weaker than most and that affects my physicality–the way I look and move. I tend to sit leaning forward and to the right because it takes less strength for me than sitting upright. If I’m reaching for something on a table, I have to use my free arm to brace the other. When I’m moving my body (gesturing while talking, adjusting my sitting position, dancing, anything), I don’t tend to be the most graceful because it requires a decent amount of effort to do so.

I think because the only wheelchair-using characters we’re used to seeing are athletic people who have been paralyzed (not that those portrayals are necessarily accurate either), it’s easy to fall into the trap of focusing on the walking issue while ignoring the rest. (And keep in mind that this is a very, very incomplete list and focuses purely on visible physical differences between me and those who are able-bodied.)

Cece Bell:
I agree with what several of the other contributors have said: disabilities are on a spectrum. That is definitely true with deafness—there’s such a big range, and so many different ways that each deaf individual might deal with their own level of deafness. I rarely see deaf people in fiction (probably because I don’t read nearly enough), but I often see them in movies or on TV as minor characters who exist for no other reason than for comic relief. You know, the stock deaf person who shouts all the time because he can’t hear what he’s saying. That joke’s so old even my dog won’t eat it. I guess this advice is more for movie directors than authors, but there you go!

What about you, commenters? Any advice to offer?

Emily Ladau: Representation Matters

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

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

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

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

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

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

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

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

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

Kayla Whaley: All About Logistics

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Kayla Whaley: On Bullying

Kayla WhaleyKayla Whaley has a BA in political science and is currently finishing her Master’s in Public Administration with an emphasis in nonprofit management. She interns for both the Atlanta Young Writer’s Institute and Month9Books. Her bookshelves consist almost entirely of kidlit and she writes YA fantasy and contemporary.

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

I don’t remember the first time I was bullied, but I do remember the moment I finally realized that I had been bullied. It was a couple years ago. I had just presented my undergraduate thesis, the last big hurdle before graduation, and a group of us went out to celebrate after. I don’t know why I was telling this particular story, because I’m sure they’d all heard it before.

The story goes like this: All through high school, almost daily, I’d be driving down the hallway and someone would throw their friend against the lockers screaming, “I saved you! She would have KILLED you!” Different people every time, too. It was hilarious for them, and the way I always told it, with a bemused “Kids, eh?” attitude, made it hilarious for everyone I told.

That night, as I was telling it for the millionth time, something clicked. I stopped mid-story and said, “Oh my God. I was bullied.”

In retrospect, it was obvious that’s what that was. I thought back to how those incidents always made me feel: confused, embarrassed, ashamed. I’d duck my head, and drive faster down the hall. By that night in the restaurant, four years after high school, I’d forgotten how I always used to stare at the ground when I drove, hiding behind the binders and books I held against my chest.

I wondered how I could have missed it. I thought about how I have always dealt with what I now recognize as bullying with a nonchalant, play-along kind of humor. Because, like I said, it never FELT like bullying. It certainly didn’t feel good, but I didn’t have the language to understand what it actually was.

In one of the early episodes of Glee, there’s a scene where Artie, who uses a wheelchair, is stuffed into a porta-potty by a group of football players. While Glee obviously aired well after my formative years, this is the same portrayal of bullying I’d seen growing up time and time and time again. Bullies were violent; they beat you, pulled your hair, knocked your books down. Or they were verbally abusive, cussing you, calling you names. Bullying was something done TO YOU. It was obvious and hateful.

Nothing was being done to me, only around me. No one ever directly assaulted me (physically or verbally). And I hadn’t been given the tools to understand what was happening.

As soon as I had that realization in the restaurant that night, I also realized exactly how often I’d been bullied. In elementary school, in middle school, in high school, and even in college. It was always relatively subtle. Just subtle enough for me to ignore my feelings, and for me to think I needed to be in on the joke or else I was being too sensitive. No one ever said this to me, but I could see the relief on my friends’ faces every time I joked about those incidents. It made them so much more comfortable if I laughed about it, if I encouraged them to laugh about it, too. Because that meant it wasn’t a big deal.

I could give you a list of all the times someone has belittled me, insulted me, or dismissed me because of my disability. I could tell you about the times even my closest friends did it without realizing, because I didn’t even realize. I could tell you about all the guilt I felt after that night, thinking I was stupid for not seeing it sooner, blaming myself for not stopping it.

But this post isn’t about that. It’s about the fact that, as always, representation matters. Bullying as violence/verbal abuse should not be the only view of it we see, because it is not the only manifestation of it. Does it happen? Absolutely. Should we talk about the fact that it happens? Absolutely. But that should not be the end of the discussion.

If you’re writing a disabled character who deals with bullying, I’d encourage you to consider a more nuanced portrayal. The big, mean jock beating the kid in the chair is not the only story to tell. And frankly, bullying was not that big a deal for me. It happened, yes, and I can see now how it affected me, but at the time? I had scores of friends. I was near the top of my class. People liked me. And I had so many other, more important problems to deal with than the idiots in the hallway.

I guess what I’m saying is that it’s complicated. As most things are. Bullying may very well be a part of your character’s life, but it may not be the most important part.

J.B. Redmond: What You See … And What You Don’t See

JB RedmondJB Redmond lives on a farm in western Kentucky, happily inhabiting his man-cave. The cave is filled with Harry Potter memorabilia, along with posters, models, and even costumes from Highlander (all movies, all show years), Lord of the Rings, Star Wars, Star Trek, and Twilight.  A full-sized suit of armour stands next to his water cooler, and it absolutely will freak you out if you walk through the cave late at night. His movie collection is at 600 and counting, never mind the endless audiobooks on his iPod. He spends most of his time writing, listening to music, watching movies and series he enjoys, listening to books, dreaming up new story ideas, chasing dogs and cats out of the cave, drinking coffee, and listening to the parrot whistle Andy Griffith. Being a published author was his lifelong dream, fulfilled in 2009. He looks forward to more successes in his bright future.

My name is JB Redmond.

Look for me in my man-cave, way out in the countryside of Kentucky.

I’m 29 years old. I was born about 60 days before I was due, and the fourth day I was alive, I suffered a massive stroke. No one knew if I would walk or talk, or be able to do anything for myself at all. I was diagnosed with Cerebral Palsy, and then with autistic features, and when I was four years old, I could only say seven words. I was scheduled to start school in a self-contained special education classroom designed for children who would likely be fully dependent for the rest of their lives.

Then, a lot of things changed. I learned to talk. I learned to talk so much that my mom threatened to sue the hospital that told her I would be non-verbal, so they would have to take out my vocal cords before her ears fell off. I didn’t talk very plainly, and still don’t, due to dysarthria–­but I would hold my own in an Olympic chattering event.

I have never able to walk, my muscles are weak, I have rods in my back, I have wounds on my feet that won’t heal, I have seizures, and I’m legally blind. I’m telling you this because if you meet me, these are the first things you’ll see. You won’t be able to help it, and I won’t get mad at you for that. I’ll roll up to you in an electric chair, extend a hand that won’t hold itself quite straight, and say hello with slightly slurred speech. I might be looking a little to your left, too, because my eyes don’t always cooperate. We’ll be polite to each other. If you can’t speak a few phrases in Klingon, have never tried to cast one of the spells in the Harry Potter books, and haven’t wondered at least once what it would be like to be a vampire or a dragon, then we might not have much in common. If, however, you can point to the desert world of Arrakis on a map of the universe, confidently sketch a photon torpedo (dorsal view), or prove fluency in Elvish, Entish, or the tongues of Men, we might be headed to lunch. If you spell Neil Gaiman’s name correctly, and you can do a dramatic reenactment of any chapter in Bram Stoker’s Dracula, I’ll even buy. “I’m a hard nut to crack, and I take it standing up,” or at least sitting straight and rolling fast.

What you won’t be able to see when you first meet me is this: I’m a published author. I read all the time­–though in my case, the proper term would be “listen” since I read by audiobook–­and I write all the time, too. I dictate, using an old-fashioned cassette recorder, and my mother types up my finished drafts.

Obviously, I most enjoy science fiction and fantasy, but I’ve never found too many disabled characters in the books I enjoy, unless they’re villains or buffoons. In fantasy, disability tends to equate with evil or sainthood, and that gets seriously old, very quickly. In science fiction, disability usually gets cured by technology, genetic manipulation, robotic implants or exoskeletons, or advanced surgical techniques and medicines. Disability never seems to be okay, or allowed to exist in futuristic worlds, unless they’re dystopian. Recently, I was thrilled to see the movie Battleship, in which the character Lieutenant Colonel Mick Canales (an Army veteran and double amputee), played by Gregory Gadson, has a realistic disability. The solution is equally real-life, his prosthetic legs, and his struggles felt both very real and very personal to me. Best of all, he wasn’t a character to be pitied, and he didn’t see himself as weak or ineffectual. Neither do I. And I hope to see more characters like this in both books and film, played by people who face the challenges in real life (don’t get me started on using able-bodied actors to play people with disabilities).

As for me and my writing, I began telling stories just as soon as I learned to talk (please reference the bit about my mother’s ears falling off). My body couldn’t play, so I focused on creating worlds and universes and characters and stories, and that was how I coped with not being able to do things like other people my age could do. I remember telling stories to my family and friends on long trips, and I particularly loved entertaining much older relatives like my great uncle. They seemed to listen better, and to enjoy the stories even more. When I got older, I began using a cassette recorder to dictate, and that’s how I wrote my portions of Oathbreaker: Assassin’s Apprentice and Oathbreaker, Prince Among Killers (Bloomsbury, 2009).

Co-authoring these books with my mother Susan Vaught was one of the greatest achievements of my life. Having novels published built my confidence, and I’m working on several more fantasy tales–­this time solo! I still use cassette dictation, because voice recognition software can’t yet handle my dysarthria. Also, I can’t edit the text myself, due to my visual and motor problems. Dictating works better, but it’s getting harder and harder to find traditional cassette recorders and microphones. I may have to learn digital dictation soon (Boo! Hiss!). We could do a whole topic on BETTER ADAPTIVE TECHNOLOGY PLEASE, and while I’m at it, why can’t all stories automatically get audio versions? Because I’m totally sick of getting into a series, then having the last few books be print only.

The most wonderful thing about words and writing and stories is, there are no limits. I don’t plan to limit myself in any way with what I write, or how high I reach in my goals.

My name is JB Redmond.

Look for me in the hinterlands of Kentucky–­or on the shelves of your local bookstores, all over this country, and all over this world, and out of it, too.

Cover for OATHBREAKERAn assassin legally kidnaps a terrified boy.

A ruling lord orders an atrocity so devastating it changes the course of history.

So begins this epic tale of love, trust, and betrayal, in which two boys must put aside their childhood understanding of their treacherous world and accept their own incredible power to make a difference.

“A complex and original fantasy…” – Kirkus Reviews

“Excellent piece of high fantasy… None of the characters are cardboard cutouts of fantasy archetypes; they are richly drawn, compelling, and unique…” – VOYA

“This novel is best suited to voracious fantasy readers eager to devour another story of an unlikely hero caught up in an epic adventure.” – School Library Journal

Emily Ladau: Thanks for the Help, I Guess, But I’m Not Helpless!

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

All too often, portrayals of disability in literature mirror the common assumption that disability signifies helplessness. And while this literary trope is unfortunately true to the thought processes of many nondisabled people, using it in writing perpetuates the mindset that nondisabled people best know the needs of disabled people. The idea that disabled people do not know how or when to help themselves is usually thrust upon us by well-meaning nondisabled people. Yet, an able-bodied person’s attempt at a good deed can become a disabled person’s unwelcome frustration.

When written responsibly, literature can spark positive change by helping society to move past stereotyping disability. However, in order for this to occur, it is imperative for nondisabled authors to assess their own assumptions and behaviors and move towards a greater understanding of the lived experiences of disabled people. To provide some insight into the ways that assumptions of helplessness diminish the rights and independence of disabled people, I’d like to share a few anecdotes in the hopes that writers will think twice before depicting disabled characters as helpless, and that nondisabled people will think twice before rushing to an unneeded rescue.

To start, I suppose it can be a bit of a sight when I’m out with my boyfriend. We both use wheelchairs, and without fail, we attract attention and garner offers of assistance everywhere we go. It’s certainly understandable, because going places is an interesting process for us. For instance, here’s how we get in his car: We take a step stool out of the trunk, put it next to the passenger side, and I climb in. Then, my boyfriend moves my wheelchair, takes it apart, folds it up, and lifts it into the trunk. Finally, he gets in the car, takes apart his own wheelchair, puts it in the back seat, and off we go. To get out of the car, we reverse all these steps.

Now, you’re probably thinking one of two things. You’re either amazed at how buff and manly my boyfriend seems for doing all the heavy lifting, or you’re wondering how we go through a process that sounds so complicated just to drive somewhere. But what people don’t usually seem to realize is that we’ve got things under control. We have our routine down to a science, and we know what works for us. It actually makes me laugh sometimes because people offer help when I’m in the middle of a parking lot with my boyfriend, and I wonder how it doesn’t occur to them that we clearly already made it to the location on our own, in spite of the fact that we don’t have helpful wheelchair-folding elves in the backseat.

I do see the reasons why the first instinct of an able-bodied person is that two people in wheelchairs must need help. I just wish people wouldn’t make automatic assumptions like that. It’s not that we’re unappreciative; we just know what methods are best for us the same way other people know what works for them. And if either of us needs help, we’ll ask! Our wheelchairs do not preclude us from being in touch with our own needs.

While I try not to begrudge people for offering assistance when I look like I might genuinely need it, there are certain situations in which offers of help leave me truly confounded. One such instance occurred quite recently while I was sitting outside an airport. I was with my mother, who happened to be using her power wheelchair at the time. (Yes, I know I’ve got a veritable microcosm of the disability community in my life!) We were guarding over our luggage while my dad went to park the car, chatting and joking around. A woman who already had two huge suitcases in her hands approached us and politely asked “Do you ladies need any help?” Forget the fact that there was no way she could have helped us with her hands full…we didn’t need help in the first place! Our luggage was resting on the ground and my mother and I were literally just sitting there. There was no indication that we were struggling. If an able-bodied person was standing next to a suitcase and didn’t give off any cues that he/she needed help, it would be weird for a stranger to approach the person and offer help. But somehow, visible indicators of disability automatically give people license to assume I must be in need of help even when I’m not asking.

Thankfully, most people stop asking if I need help after the first time I decline, but on rare occasions, people try to be “helpful” to the point of overstepping boundaries and causing downright uncomfortable situations. I’ll share a story that happened while getting in the car with my boyfriend. While I was interning in Washington, D.C. this summer, he came down to visit me. One evening, he picked me up from work, and as we were about to get into the car, a man approached us and offered help. When we said no thanks, the man didn’t back off, but proceeded to ask repeatedly if we were sure we didn’t need anything. Uh, yes, I think we’re sure of our own needs. And yet, each time we said no, the man moved closer until he was standing over us. Just as we finally thought we’d shaken him off, it turned out the man was parked next to us, so we told him it would be most helpful if he’d move his car so I would have more room to get in our car. Instead of leaving, the man got in his car and stared at us with his window open, continuing to insist he’d be there if we needed assistance as I awkwardly tried to climb in our car as fast as possible. The man finally left, albeit reluctantly, as we were pulling out of the parking lot. Not only was he practically babysitting us, but also he was completely undermining our personal authority.

Even after all this, I’d still prefer a person to ask me (once) if I need help rather than helping me without asking. A typical example of this happens all the time when people grab on to the back of my wheelchair and try to push me without asking first. I do realize that to observers I may sometimes appear to need assistance, because I’m not exactly an athlete in the Paralympics and I can be slow when I’m pushing myself. But I know my capabilities and my limits, and though I’m stubborn at times, I’ll eventually relent and ask for a push if I need it.

There is a key movement in the disability community for the right to self-determination, which means that we have the power to freely choose how and when we act or are acted upon, without having the will of nondisabled people forced upon us. Or, in the simplest possible terms: disabled DOES NOT mean helpless. I cannot stress this enough. Being a good person is a great thing, but please don’t do it at the expense of allowing me to determine my own needs. It’s time for able-bodied people to differentiate between politeness and infringing upon my independence.