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

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

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

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

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

Please note–this discussion contains spoilers.


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

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

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

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Discussion #8: Intersectionality and Disability

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

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

Our contributors sent the following responses:

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

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

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

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

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

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

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

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

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

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

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

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

Do you have any input, readers?

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?

Discussion #5: Is ANY representation better than NO representation?

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:

IS any representation better than no representation? That argument frequently comes up in response to criticism, but is it valid?

Here were their answers:

s.e. smith:
NO! If a representation is bad, it’s harmful, and it perpetuates negative beliefs, attitudes, and stereotypes — or just erroneous information. This argument is totally invalid, because it suggests that we should be grateful for the scraps from the table, even if they’re stale or molding. That’s ridiculous. We’re owed a duty of care and respect, and people who want to integrate diversity into their storytelling (which everyone should!) need to be prepared to take it on seriously, not include it as a slapdash afterthought

Marieke Nijkamp:
Everything. s.e. said. Every. Single. Word.

Kayla Whaley:
Also no for me. I think what s.e. said was spot on: there’s this expectation that we (disabled folks) should be happy we’re included at all, no matter the form that takes. That ANY inclusion and representation is a GIFT we’ve been given, and it’s ridiculous for us to expect it to be an accurate, respectful portrayal on top of that. That that’s asking way too much of authors. Which, honestly, if you think putting some thought and care into writing your disabled characters is way too demanding, I’m going to assume you don’t put thought or care into any of your characters. I realize that answer got a little off track, but yeah, what s.e. said basically.

Sara Polsky:
No, I don’t think any representation is better than no representation. One-dimensional, stereotypical, or inaccurate portrayals of characters with disabilities harm all readers, whether they have disabilities or not. Poor representation leaves readers who have no other experience with disability with narrow ideas about the lives of people with disabilities, and it leaves people with disabilities with no true reflection of their own experience.

What about you, dearest readers? How do you feel about the any representation is better than no representation suggestion?

Corinne Duyvis and s.e. smith review VIRAL NATION

Corinne DuyvisA lifelong Amsterdammer, Corinne Duyvis spends her days writing speculative MG and YA novels, such as the forthcoming YA fantasy Otherbound (Amulet Books, June 17, 2014). She enjoys brutal martial arts and gets her geek on whenever possible. Visit her online at @corinneduyvis.

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

Viral NationAfter a virus claimed nearly the entire global population, the world changed. The United States splintered into fifty walled cities where the surviving citizens clustered to start over. The Company, which ended the plague by bringing a life-saving vaccine back from the future, controls everything. They ration the scant food and supplies through a lottery system, mandate daily doses of virus suppressant, and even monitor future timelines to stop crimes before they can be committed.

Brilliant but autistic, sixteen-year-old Clover Donovan has always dreamed of studying at the Waverly-Stead Academy. Her brother and caretaker, West, has done everything in his power to make her dream a reality. But Clover’s refusal to part with her beloved service dog denies her entry into the school. Instead, she is drafted into the Time Mariners, a team of Company operatives who travel through time to gather news about the future.

When one of Clover’s missions reveals that West’s life is in danger, the Donovans are shattered. To change West’s fate, they’ll have to take on the mysterious Company. But as its secrets are revealed, they realize that the Company’s rule may not be as benevolent as it seems. In saving her brother, Clover will face a more powerful force than she ever imagined… and will team up with a band of fellow misfits and outsiders to incite a revolution that will change their destinies forever.

Warning: this discussion contains significant spoilers. Go here to skip directly to our spoiler-light conclusions. Continue reading

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:

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.

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.

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.

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.

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.

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.

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?

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

Discussion #3: What would you like to see more of?

For this week’s discussion post, we asked our contributors the following question:

“What would you like to see more of in MG/YA lit, in terms of disabled characters?”

Read on for their thoughts!

s.e. smith:
My focus as a reader, writer, and critic is on young adult literature, so I’m going to concentrate there although I love middle grade too. I want to see more characters who just happen to be disabled, where their disabilities aren’t central to the story and don’t play a critical role in the plot, but are still present. In other words, I don’t want to see the disability version of the whitewashed form of diversity sometimes seen with authors trying to write characters of colour where a one-off mention is made to a character being Black or Latina/o and it never comes up again, depriving characters of cultural context–I want to see a character’s disability mentioned and playing a role in the narrative, but not as its own character. (A wheelchair user who’s a hacker, for example, and gets frustrated with the stairs at the local hackerspace. A schizophrenic character who thinks her meds need adjustment when she really is seeing ghosts. A D/deaf or HoH teen witch who’s pissed about uncaptioned YouTube videos. Get imaginative!)

I’d also really love to see more representations of the diversity of disability; I want nonverbal autistics, I want teens with fibromyalgia, I want depictions of mental illness beyond depression (the most commonly depicted mental illness in YA), teens with FOP and OI. Teens with acquired as well as congenital disabilities, teens in that liminal space between nondisabled and disabled as they struggle with seeking a diagnosis for an elusive condition. And I want these stories told from the point of view of the disabled person, not the friends and family around her, not doctors, not her culture. Remember these fighting words from disability culture: ‘Nothing about us without us.’ Integrate them into your work.

Kayla Whaley:
I want to see more characters with disabilities period. But I’m selfish – I’d especially like to see more characters, ideally main characters, with disabilities and experiences similar to mine. It wasn’t until recently I even realized I’ve never read a book with ANY characters similar to me in that respect. It didn’t occur to me to be upset about it because, well, characters in books are able-bodied, right? So, please, more characters in power wheelchairs who aren’t recently paralyzed (the only reason I can remember seeing for a character to use a (typically manual) wheelchair).

However, quantity should not happen at the expense of quality. I want to see more representation, but I also want to see accurate, respectful representation. Of course, the argument can and probably should be made that anything less isn’t actually representation at all, but I think you get what I mean.

I’d also REALLY like to see more characters with disabilities shown enjoying typical aspects of life that are frequently denied them in fiction: sex, romance, healthy body image, successful careers, children, etc. And I’d like to see those characters in main roles, active roles, meaningful roles.

Marieke Nijkamp:
I’d love to see more disabled characters in MG/YA, period. I’d love to see characters–main and otherwise–who happen to be disabled, dealing with physical disabilities, developmental disabilities, mental illnesses. I’d love to see ensemble stories that don’t solely include able-bodied characters. I’d love to see characters who struggle with their disability and characters who don’t. I’d love to see characters whose disability is not the driving point of the story, or, worse, the solution to every problem ever. I’d love to see disabled characters who fall in love and fall out of love, disabled characters who figure out who they are and find their own place in the world, disabled characters with hobbies and passions, disabled characters with hopes and fears and dreams.

In short, I’d love to see fully developed characters, whose disability, while informing who they are, isn’t their only identifying marker but part of a complex set of characteristics. Just like any other character, really.

Discussion #2: Tips for Research & Respectful Writing

Last week’s discussion on inspiration porn garnered some great responses, and we’re so excited to be sharing today’s discussion. We asked our contributors if they had any brief thoughts to share on the following topic:

Tips for Researching and Respectfully Writing Disabled Characters

Here’s what they had to say…

Kayla Whaley:
I fully believe that respectfully writing a character with a disability requires a solid research foundation. First, and most obviously, know what your character’s disability is. Read up on the causes, symptoms, prognoses, but DO NOT take anything you read wholesale. Most disabilities vary WIDELY. For instance, with my disease, I stopped walking at six. Others I know stopped at 14 or 15, while some never walked at all. Some use manual chairs, while I’ve never had the strength for one. I can still sit up, hold my head up, eat on my own, while others can’t. There’s so much variation from person to person. So, yes, know the medical realities of the disability, but know they aren’t all realities for every person.

Research absolutely needs to go beyond that, though. Talk to people with either the same or similar disabilities. Your character won’t feel real if you just talk about how, for example, SMA is caused by a mutation on the SMN1 gene (I actually had to look that up – I had no idea which gene mutation caused my disease). Show the reader how she’d always rather drive uphill than downhill because gravity makes it harder to sit upright going downhill. Or how sometimes her left pinky toe goes numb from sitting cross-legged all day (her preferred position though her doctors hate it). Or how in eleventh grade the elevator broke and she spent all day in her Latin classroom hearing the same lecture over and over, but it was totally awesome because NO MATH. It’s all in the details of the experience, not the science. (You know, in my experience. See what I did there?)

Of course, to write a character with a disability respectfully, don’t focus only on the disability. Don’t even primarily focus on it. Focus on the character. Write them the same way you’d write any other character. Get to know them: their wants, needs, motivations, fears, faults, likes, dislikes, hobbies, etc. Whatever you normally know about your characters without disabilities, know those things about those with disabilities too. Above all, write them as full, complete human beings.

Kody Keplinger:
I feel like the most important thing is to talk to a person (or many persons) with the disability you’re writing about. Too many authors do research just to find ways to make the disability fit the story they are trying to tell as opposed to truly researching the disability as a whole. Look at many different avenues – for instance, if you’re researching blindness, look at many different causes. But most importantly, talk to real people.

And when you talk to them, don’t just ask them things like “How do you do X, Y, and Z?” Also ask things like, “What things should I avoid writing about to make this real? Or there any stereotypes I should steer clear of?” chances are they’ll have a ton to tell you about, but you might not get that information with a basic line of “How to” questioning.

Holly Scott-Gardner:
It’s hard to get a disabled character right, simply because no two people with a disability are the same. Some of us are confident, some like studying, think watching sport is awesome, but as with any group in society that isn’t the case for all of us. We have different personalities, our likes and dislikes differ and even the way we respond to our disability varies.

I’m going to focus on visual impairment here as I can relate to it personally. Some blind people use a cane, some a guide dog, many use both. Most people who are classed as legally blind have some useful vision, I am a Braille user but other blind people read large print. I’m trying to highlight here that you can’t just decide to write a visually impaired character and go for it, you must do your research. Google is great and you can find out a lot of information about assistive technology, programs specifically for the blind and tools we use in the classroom. But the only way to really know what it’s like to be blind is to talk to a blind person. I’d recommend if you’re writing a character with a disability to talk to a number of people who have that disability. As I said we don’t all do things quite the same way and so from talking to a range of people with that disability you’ll get a more accurate idea of the way you’re character might behave.

Don’t be scared to approach us, 99% of us would be relieved to know that an author is doing research and more than that they are actually reaching out to people with that disability so that they can write an accurate portrayal of it. So often I see badly written books where the blind character is helpless, or uses technology that is outdated or even doesn’t exist! Knowing that an author wants to put the effort into researching blindness and writing the best portrayal they can is extremely encouraging.

s.e. smith:
Research is one of my favourite things in the whole world, as both a journalist and a writer of fiction. I love outlining, pulling together a story, and then delving into the facts behind it—with fiction, there’s always the added tension of seeing if my characters and world are sustainable, believable, and immersive, whether I’m writing about cyborgs in space or demonically possessed watermelons. When it comes to depicting real actual human experiences, research is so critical, both to make stories better, and to make them authentic; people want to see themselves in fiction, and as an author, you have a responsibility to depict minority groups with care, because your readers will take away messages about them from your text.

And my advice is: get ready to absorb a lot of information. There are tons of disability blogs out there as well as memoirs, which gives you a great chance to get a broad perspective on different disabled lives and different experiences with the same disability. Disabled artists and creators make comics, films, and other creative works that are another great informational tool. Identify a couple of people with the disability you’re writing about and approach them, politely, to ask if they’d be willing to work with you as research partners. Offer to compensate them for their time. Do your research ahead of time so you can ask them appropriate and useful questions, and treat them respectfully. If they’re willing to read drafts of your work, take advantage of that opportunity, because as they see the whole work come together, they can identify issues that may arise, or point out things you haven’t thought about (why did your autistic character cover her ears while riding the train because the noise was too loud, but seem totally fine with the noise of a jet engine?).

Nisi Shawl’s fantastic transracial writing for the sincere is a recommended read for anyone writing minority characters, because what she has to say applies not just to transracial writing but also to writing about disabled characters, queer characters, and people from minority groups. Shawl’s Writing the Other is another fantastic text to use; yes, you need to research how to research! (Sorry.) If you don’t share the experiences of your characters, you need to research them, rather than assuming that the lessons of pop culture and assumptions of society have prepared you. Ultimately, don’t be afraid to fail; the question isn’t whether you will fail, but whether you will learn from your mistakes.

Sarah Bromley:
Of course you want to maintain respect for people living with whatever condition you are researching for writing fiction. I find personal interviews to be a better source for research because it allows the interviewer to go deeper with the questions than just mining the internet for articles, but personal interviews also demand a high level of respect. If you have someone close to you with that condition, you can approach that person and tell him/her you want to write about it. Most people are willing to talk about their conditions and make sure you are accurate in your description of the condition.

And that’s the thing here. Accuracy versus exploitation. No one wants to feel like they shared information and it was used to exploit their condition. So assure anyone that you’re interviewing that you won’t be sensationalizing what they share with you, that you’ll be giving an honest look at what it’s like to have that particular condition.

Corinne Duyvis:
Aside from all the great advice above, one thing I want to urge people to do is ask themselves this: What do I know about this disability? Where does this knowledge come from? Most of the time, the answer is ‘pop culture.’ Too many people will write what they think is a certain disability with bits of info scrounged together from various books and movies. Scratch everything you think you know and research from scratch. Turn this research into a project: don’t treat it as an hour-long Google/Wikipedia search or a quick interview, but immerse yourself for weeks or months on end in articles, blogs, and discussions–about everything from RL annoyances to iffy media portrayals. Become acquainted with disability tropes and clichés and figure out exactly why they’re so bothersome.

Particularly, when you write a disability, don’t look at a list of symptoms and and wonder, “OK, now if I were in this situation…?” because disability is more complex than that. You must research beyond the objective physical aspects. People become used to disability over the years and find ways to adapt; don’t get so hung up in a character’s limitations that it takes over their entire being. For a number of people, disability is legitimately terrible. For others, it’s an annoyance along the lines of wearing glasses. Others equate it to not owning a car, which has both downsides and upsides.

Whichever route you go, make sure the character’s personality traits, habits, and plotlines are influenced rather than defined by disability.

Disabled readers, anything to add? Authors, will this change how you approach your disabled characters, or did any of this raise further questions?

We’d be delighted to hear from you in the comments!

Discussion #1: Inspiration Porn

Welcome to our first discussion post! We’ve selected a topic for each Thursday of this month, and asked our contributors if they had any brief thoughts to share on that topic. This way, we can showcase a variety of perspectives and opinions.

This week’s topic: inspiration porn. Don’t know what that is? You’ll find the answer below–we asked our contributors how they define this concept and what they feel about it. Read on!

Kody Keplinger:
To me, inspiration porn is any sort of media (a picture, a movie, a book, etc) or even a view of an individual, that tries to fabricate an ordinary action as something extraordinary. For instance, a meme depicting an amputee with a prosthetic leg walking with the caption “Brave!” (Yes, I have seen this before). It can also be imposed on an individual. For instance, I’d say I’ve been turned into inspiration porn by strangers who tell me that I’m “so amazing” for – no kidding – walking down the street with a guide dog or a cane.

I *hate* inspiration porn. I can’t even convey how much I hate it. To me, it’s such a dangerous thing because, even if the intentions are good, it implies that the average disabled person is weak or lacks independence. So when people tell me I’m “amazing” for being out in the world, it implies the average blind person is a shut in. In reality, disabled people are people and want to be treated like normal people. This means not being seen as “brave” or “inspirational” for average, every day actions. Unfortunately, the news, modern lit, modern film, etc, seem to think this is the only way to tell the story of a disabled person. The plot is always “Character X has Disability Y, but she STILL MIRACULOUSLY MANAGES TO OVER COME IT.” Disabled people in the media are always treated as extraordinary and not ordinary. And, to put it eloquently, it sucks.

s.e. smith:
That Oh So Special way of viewing disability. Inspiration porn positions disability as a terrible burden, assuming that disabled people have no quality of life, but they can find some redemption in inspiring nondisabled people by doing novel, heroic, and amazing things like having jobs, getting good marks in school, or participating in society. Inspiration porn is photos of disabled athletes with sappy captions. It’s news stories about brave little disabled children boldly ‘not letting their disabilities stop them.’ It’s handing awards to disabled students for doing what everyone else is already doing, like they’re freakish, fascinating objects rather than human beings. It’s the treatment of disability as a valuable learning experience for nondisabled people, rather than just something that’s a fact of life for some members of society.

And in fiction, it’s pernicious. Disability is often used as a plot device to teach characters something, and disabled characters frequently show up as object lessons or figures of inspiration to the other characters, particularly when they are not the narrators or the centres of the storytelling. Thus we have stories where characters are ‘inspired’ by the fact that disabled people exist, or do things in the name of their disabled object lessons. It deprives disabled characters of all autonomy and objectifies them; from human beings, they have been transformed into mere caricatures, and they aren’t allowed to just be themselves.

Want to avoid disability porn? Focus on this: people should be inspiring because of their deeds, not because of who they are. Thus, for example, a woman like Hannah McFadden isn’t inspiring because she’s a wheelchair athlete and it’s just amazing that someone who uses a wheelchair for mobility can be an athlete. She’s inspiring because she’s a world-class athlete who competes on the international level with some of the fastest, strongest, most amazing athletes in the world.

Mindy Rhiger:
Recently on my bus commute home from work, an older lady leaned over to me and said words I have heard so many times in my life: “You are so inspiring.” I still don’t know how to respond to that even though people have been saying it to me since I can remember. In that moment, I couldn’t help but wonder how the woman saw me. Clearly I was not just another commuter reading a book on a bus. I knew I looked different—the hook-shaped prosthetic arm took care of that—but what did she think that meant for me?

I wanted to tell her that what she could see didn’t mean as much as she thought. That my life was pretty normal, really. But she had already leaned back in her seat and turned her attention elsewhere. The conversation was over without any contribution from me. I understand that inspiration is a tricky thing, and I don’t want to take good feelings away from anyone. I do, though, caution people who are willing to listen that inspiration based on assumptions may be more de-humanizing than they realize.

Corinne Duyvis:
Inspiration porn, I feel, is a way of simultaneously focusing on how incredibly tragic a certain disability is and robbing the disabled person of any agency or complex feelings about it. Instead, it fawns over–fetishizes, almost–the aspects that make abled people smile sappily. After all, isn’t it amazing how well this wheelchair user can navigate public transport? It’s so inspiring! Just leaving the house is already an act of immense bravery, worthy of applause. In other words, the bar is set at a condescendingly low level.

In inspiration porn, it’s fine to linger on how much pain someone is in, or adversity they’ve faced, because all of it strengthens just how brave they are for trudging on regardless–but lord forbid you mention things disabled people might struggle with every day, such as accessibility, ableism, policy, benefits, healthcare. Inspiration porn glibly bypasses those issues to tell a narrative that won’t make anyone’s conscience sting, or feel like they might need to change their attitudes. The audience is abled people, and the goal is to make them feel good, and screw what actual disabled people might want or need. Disabled people act as props in this narrative. One spot-on example: the Glee episode “Laryngitis” in which a disabled character appears solely to inspire Rachel.

Kayla Whaley:
To me, inspiration porn is any story where a character must overcome the horrible tragedy of their disability, thus inspiring the able-bodied audience. This can be found in any and all types of media: books, movies, TV, etc. The first time I remember seeing it was in a Disney channel movie back in the day called Miracle in Lane 2, where Frankie Muniz heroically races soapbox cars despite using a chair. I had no language to understand what I was seeing or why it made me so profoundly uncomfortable, but now I do.

How we portray reality affects reality. Culture is made, constructed by an infinite number of tiny (and not so tiny) decisions we each make. Inspiration porn, therefore, affects how individuals and the wider culture see me. For example, I’ve had a lot of recommendation letters written for me (for scholarships, internships, awards, jobs, etc.) and I’ve read quite a few of them. Every single one so far has said something along the lines of, “Kayla never lets her wheelchair stop her. She’s such an inspiration.” And every time I think, “Really? Of all my accomplishments and qualities, that’s what you chose to lead with?” The media I consumed both as a kid and now tell me I’m not allowed to be a person; I have to be an inspiration. Whatever that means.

Marieke Nijkamp:
A college counselor once told me they really couldn’t accommodate me. Not because I was disabled—they had funds and scholarships for that. But those were only valid as long as I wanted to do what Normal People™ did. And I had just expressed my interest in doing a double degree, because the undergrad degree I was working on at the time was not challenging enough for me. She pointedly told me (though not in so many words) that if I did not stick to their preconceived notions of disability, they would not be able to help me pursue my academic plans. True to their word, they didn’t.

Inspiration porn, to me, is that preconceived notion that either turns disabled people into objects or into lesser humans, depending on the narrative. It is offensive, it is discriminatory, and most of all it is dangerous. It tells us, disabled people, that “normal” is the best we can (and should) achieve, glossing over the fact that “normal” is a culturally constructed concept, based on individual experience that should (but not always do) include ours. It tells society to expect only that and all that. If we do what everyone else does, we are objectified as an “inspiration”. If we create our own normal, we are Othered. This lowers our value and significance as human beings in the eyes of other human beings. And it tells abled people that they should not expect more from us, not just in terms of what we achieve but in terms of who we are. We can be inspirational. We can be pitied. But we cannot be happy, sad, competitive, curious, lazy, sarcastic, struggling, in love, in hate, in any way or shape complex at all. Let me give you a hint though: we are. And that is our normal.

Haddayr Copley-Woods:
I have found that inspiration porn is, like porn-porn, about how the viewer feels — not about the disabled person depicted. Inspiration porn makes the viewer feel feelings. Generally pity, and generally a profound gratitude that they are not a cripple themselves. They cannot imagine how someone manages to go through life on crutches, being autistic, twitching, or using a wheelchair — without putting a bullet through their brains. They watch us struggle, or ride a bike, have one glorious victorious moment, or sit in a chair in slowmo. And they feel very, very warm inside. They get weepy. They whip out their compassion and stroke it until it explodes into fuzzy self-congratulatory peacefulness. It’s so inspirational! They say.

But what exactly does this inspire you to DO? Does it inspire you to step on a land mine, be lucky enough to have the money and resources to have blades as prostheses, and become an athlete? No? Does it inspire you to coach basketball and give every kid a chance to try out instead of giving That Autistic Kid only one chance to get a basket in four long years? No? To demand that special education services are fully-funded? No? So where is the inspiration? What. Are you. Inspired. To DO?

If the answer is “share it on Facebook,” please stifle. I don’t share my favorite xhamster videos. Let’s keep it clean, folks.

What do YOU think, readers? Were you familiar with the concept of inspiration porn? Did these thoughts shed a new light on the subject for you?

Share in the comments!