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!

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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.

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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.

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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…

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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.

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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.

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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.

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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.

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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.

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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.

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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!

s.e. smith reviews WILD AWAKE

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

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(Note: this review discusses the ending of the novel.)

I’m lying awake in bed for the fourth, or maybe fifth, night in a row, heart pounding, mind scattering in a billion different directions. One moment I’m thinking about the stars, the next about how people fill pastries, the next about that history paper I have due soon, soon soon soon, is it tomorrow? Is it the next day? I would get up to check the syllabus but I might start spinning all over the room, and then I’d float through the ceiling. The days are starting to blur together in a coloured fever, the Christmas lights I hung up to decorate my otherwise stark dorm room after people started commenting on it are burning out one by one because I leave them on all the time, I’ve stacked books and papers hyperobsessively, neatly.

My friend Kenneth says I must maintain a secret real dorm room, and this is just the one I show to the public. Then I start wondering if everyone has a secret real dorm room, if maybe everyone around me is an android, fake, if I could peel their faces back and find out what’s inside them, I lie awake in bed at night thinking about androids and social experiments, wondering if it’s possible that this whole thing is a setup, everything, the maple trees changing colour and the counselor I see once a week and lie to politely about how I’m doing and falling asleep in my astronomy class because it’s dark and cool and for just a minute my brain stops running.

This goes on for days, weeks, months, maybe years, I can’t really tell, as I relentlessly and flawlessly front to the world around me, everything is fine, everything is okay, and then suddenly I’m flying home and no one has noticed, astounding, and I’m soaring high above the earth and even after the plane lands, I’m still soaring. I stay up all night working on things that I don’t show anyone and I walk to the beach and play in the waves and make up intricate names for everything around me, inventing my own language, and then I am supposed to fly back to college, and that is when everything starts to fall apart, when I sit shuddering on the aircraft wondering what I am doing and then three days later I am home again, a failure.

I was 16, and I was crazy.

In Hilary T. Smith’s Wild Awake, 17-year-old Kiri Byrd has been left alone for the summer by her parents. She’s the nice, reliable, calm, focused child, the talented pianist getting ready for a major showcase who can be counted upon to water the azaleas and collect the mail while her parents go on a cruise and her brother conducts research. But everything upends for her when she gets a mysterious phone call about her dead sister which sends her careening along a quest for the truth, and an adventure of self-discovery.

I see a lot of people writing and talking about Wild Awake in terms of a love story; as a narrative of love and loss and coming together. And there is a love story wound within the text, that of Kiri and Skunk, the kindly guy she encounters while staggering around in the street reeling from a series of emotional and horrific discoveries about her sister. They forge a connection that runs deep and complex, but this isn’t, to my eye, a love story.

This is a story about what it’s like to go crazy, and it is brilliantly, masterfully crafted. Because the thing about going crazy, or, as Skunk and later Kiri put it, having a Thing, is that it doesn’t happen all at once. There’s not a crazy switch that gets activated. It’s a slow downward slide that you often don’t notice as the person experiencing it, especially since you’re often a teenager. So much is happening around you as you and the culture around you is changing, as your body is changing, as you’re growing out of and into things.

So when everything starts seeming brighter and sharper, you don’t really see the problem with that; it makes things more fun, more tactile, more real somehow. And when you sleep less, and gradually not at all, that just leaves more time for more important things. And when your brain is spinning with ideas and it won’t stop, you don’t think for a moment that maybe it’s a carousel that’s about to fly off the central axle and scatter parts all over the circus.

As a portrayal of the onset of mental illness, Wild Awake takes us into the feelings not of friends, family, and other outside observers, as these narratives so often do, but into the world of the person experiencing it. And it’s written in a very real, immediate, gripping way, one so visceral that I almost felt the need to reflexively count my meds as I was reading—did I take yesterday’s dose? I feel a little spinny right now.

This is also a depiction of mental illness in the beforetime, before it’s diagnosed, before it’s treated, before you understand what is happening when the world is turning topsy-turvey around you. Kiri is living in a world of kaleidescope vision and she hasn’t figured out yet that there’s a kaleidescope there, but she needs to figure it out before it shatters, and as a reader in the aftertime; diagnosed, treated, managed, I shuddered for her, and I shuddered remembering, too.

Unlike Kiri, I wasn’t surrounded by observant people who got her into treatment quickly, and instead I experienced what she did for years.

But Smith also shows us the aftertime in the form of Skunk, who had a Thing (later revealed to be a psychotic break) before the events depicted in in Wild Awake. He talks about thinking that the members of the band were broadcasting his thoughts over the speakers, his steady decline into paranoia and confusion, and, ultimately, the break that caused him to attack a bandmate on stage. The subsequent hospitalisation and treatment, followed by release into the care of his uncle and aunt with a long list of confusions, become a part of the narrative as we learn who Skunk is and why he’s so secretive.

Smith doesn’t take the easy way out, though, presenting us with a perfect contrast of stable, medicated boy and unstable, riotous girl. Skunk has chosen to stop taking his meds, disliking what they turn him into and struggling with the management of his mental illness. As Kiri slips deeper into a manic episode, he’s steadily dragged closer to the brink of psychosis, and the two start firing off each other in a way that’s potentially highly explosive, even as they cling to each other and the deep link they’ve forged.

In the end, we saw the start of a glimmer of hope for both Kiri and Skunk as he got on track with his treatment and she was surrounded by people prepared to help her—and as she realised that something had gone beyond her control and she needs that help. But this wasn’t presented as a final, crisp, happy ending where everything would be okay now and return to normal. Instead, Kiri recognised that she lived in a new normal, one from which she could not return, not just because she knew the truth about her sister and the world she inhabited before her death, but because she knew the truth about herself, too.

It’s rare to find depictions of mental illness in YA, and rarer still to find good depictions. Mentally ill protagonists in particular are highly unusual. More commonly, I see mental illness, and my experiences as a mentally ill person, used as a plot device, and usually written by authors who clearly don’t understand mental illness. Mentally ill authors, however they identify, can experience stigma when it comes to writing and getting published, making the fact that Smith discloses and talks openly about her mental illness important here. All too often, it feels like we are not considered valid authorities on our own experiences, making reclamation of this nature critically important.

It’s frustrating to see mental illness continually used as a cheap character device; she’s ‘crazy’ and not worthy of attention, he’s ‘psychotic’ and evil, she’s ‘depressed’ and lies around whinging all the time. When authors actually do their research, or, better yet, write from their own experience and have that honoured and respected, the results can be amazing, and Wild Awake is such an example. It’s just one story about two people and the world around them, but it’s also so much more than that. It’s a punch in the face against stereotypes, it’s a visceral depiction of the experience of the onset of mental illness, it’s a narrative that challenges cultural assumptions about what it’s like to experience mental illness.

Texts like this are an important part of our lexicon in general to fight the stigma surrounding mental illness, but especially when it comes to YA. Because the most common age of manifestation is young—teens and people in their early 20s, like Hilary, like me, are those most likely to experience the onset of mental illness. And that means that we in particular crave, and need, these kinds of books, to see ourselves represented in fiction, to process our experiences, to help us understand ourselves.

And, perhaps, to help us when it comes to identifying that something is wrong and reaching for help. While Smith didn’t set out to write an Issue Book (thankfully) and Wild Awake doesn’t read as such, it still has the potential to make a profound impact on readers, and not just those of us who are mentally ill. I would hope that it also forces a change in perspective for other readers, and creates a deeper sense of understanding among them; that, for example, when you’re feeling spun out and out of control, you’re not necessarily aware of it. That you can’t always control paranoia, and that your thoughts feel totally rational and logical to you even if they make no sense to those around you.

That sometimes, you watch yourself fucking up and you can’t figure out why, and the only logical solution you see is fucking up more, because it seems like that’s all there’s left to do. This is a book for all the people who’ve had Thingies of their own out there, and it’s got something to say for those who love us, too.

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!

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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?

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s.e. smith reviews MARCELO IN THE REAL WORLD

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

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(Note: this review discusses the ending of the novel.)

Francisco X. Stork (and how much do I love that name, let me tell you) writes about Latino teens on their voyages to adulthood and coming of age, bringing an important voice to young adult fiction, which is so often uniformly white. His 2009 novel Marcelo in the Real World follows the journey of a teen with an unspecified cognitive impairment most often textually described as ‘Asperger’s’ or ‘Asperger’s-like,’ suggesting that he lies somewhere on the autism spectrum. The narrative captures Marcelo at the teetering point behind childhood and adulthood as his father pushes him to ‘enter the real world’ while his mother expresses hesitations, and Marcelo wrestles with his own private feelings about the world and the people in it.

While we’re never told exactly what Marcelo’s impairment is, and it’s implied that no one can quite figure it out, it shares many features that will be familiar to those of us on the autism spectrum. Intriguingly, Marcelo himself seems reluctant to identify with that label, arguing that he doesn’t experience impairment as severe as that of some of the children at the school for disabled learners he attends. In this framing, he’s not disdainful (as seen in the ‘functioning wars’ witnessed in some corners of autistic culture), but attempting to be respectful—he talks essentially about not wanting to appropriate the experience of people who may essentially never be able to front in the way he does, to perform in the ‘normal’ world.

Yet, he also questions the value of normative versions of society and wonders whether this so-called real world is really such an important thing to be integrated into:

‘The term ‘cognitive disorder’ implies that there is something wrong with the way I think or the way I perceive reality. I perceive reality just fine. Sometimes I perceive more of reality than others.’

Marcelo is easily overwhelmed by stimuli, sharply observant when others are not, but still troubled when it comes to interpersonal interactions. He prefers his communications to be direct, clear, and unmistakable, even as he probes complex thoughts about religion and the nature of consciousness. And, like many people with cognitive impairments, he’s accustomed to being treated like an object by the people around him; he’s well aware of what the pauses in speech when people are talking about him mean, he’s fully conscious of the fact that people think he’s an ‘idiot’ and a ‘retard’ because he perceives the world differently and appears to move more slowly than the people around him.

Marcelo is fortunate in that he has access to an excellent school that helps him develop coping skills and tools for interacting with the world, while still maintaining his independence and fundamental sense of consciousness. All too often, it seems like those of us on the spectrum are expected to mold ourselves to society; we must be taught how to behave and look like ‘normal’ people and suppress behaviours that are natural and comfortable to us. Marcelo’s school, on the other hand, provides people with an opportunity to be themselves.

Yet, his father insists on making him come to work for his law firm during the summer, and that plunges Marcelo into a world where his plans and routines are disrupted, he can’t work with the Halflinger ponies he loves, and he’ll face some unexpected ethical quandaries. They’ll test his understanding of normality and humanity, while also forcing him to make some very difficult choices.

One of the things that I love about Marcelo in the Real World is that it’s narrated intimately from the first-person perspective of an autistic person, rather than being about autism. Marcelo has a voice here, and it’s clear and loud; we get to read both about what he is thinking internally, and how he is interacting with the people around him. His thought processes and attempts to grapple with concepts that are slippery and strange are laid out for examination and discussion, which is a departure from the way life on the autism spectrum is often depicted.

Instead of being told what autism is about and how autistic people think, readers are living it. And when those readers are autistic, they’re finally reading themselves as heroes and encountering a character whom they can deeply associate with, which is a huge thing. Especially in the years of coming of age and trying to navigate a society where everything is shifting and people are bound up in double entendres and attempts to make themselves seem wiser than they are and positioning themselves for the next big thing, being autistic can be very isolating. Reading that your experiences are not freakish and abnormal can be empowering.

What Marcelo in the Real World represents, in a lot of ways, is similar to my own experience, and I know I’m not the only one. Though I experience things he does not (and vice versa), I understand his world on a visceral level. I know the feeling of hearing words but not understanding what they mean and how they’re being used in this context and feeling lost and isolated. I understand the sensation of feeling like my head is exploding because I’m being asked to process too much. And I’m familiar with being around people who make assumptions about me and think I won’t understand what they’re assuming, and what the implications are.

Stork has managed to capture an authentic depiction of one facet of the autistic experience, though it’s notable, of course, that he chose an experience of someone at a point on the spectrum that allows for a highly successful degree of fronting and performance. Most books about the autism spectrum involve people at this point, with very few touching on, for example, nonverbal autistic people, or autistic people who can’t front well, let alone people who choose (and are able to choose) to reject performances of neurotypicality.

Thus, I can’t say that they wholly humanise autism, because they don’t depict the full diversity of the spectrum, and they also humanise only a very specific form of autism, and that’s the one closest to and perhaps most understandable to the neurotypical reader. Is it really a bold blow for the autistic community when all the narratives about autism are only about one kind of autism, and it’s one neurotypical readers can easily connect with?

Shouldn’t neurotypical readers also be made to feel uncomfortable with autism stories? Confronted with their own attitudes and prejudices about autism? Marcelo in the Real World pushes at that, challenging the reader to ask why Marcelo is treated like a child, but it could be a much more radical and aggressive book if it wanted to be.

Especially since, in the end, this is a book all about how Marcelo was able to ‘overcome’ and enter the real world. It’s notable that his life goals remain consistent throughout the book—at the start, he says he wants to train Halflinger horses and work as a hippotherapist, and he says that again at the end—but there’s also a hint of an idea that Marcelo’s father Arturo made the right choice by ‘forcing him out of his comfort zone’ and giving Marcelo what amounted to an ultimatum instead of an actual choice when it came to working with the ponies for the summer, or working in the law firm.

Thus, readers were ultimately reminded at the end that ‘good’ autistic people are able to succeed and perform in a neurotypical world, and that those who do not just aren’t trying hard enough, or aren’t whole people. And that’s a troubling note to leave readers on in a text that is otherwise a very striking depiction of the autistic experience. I would have loved to see the very notion of ‘reality’ more directly challenged and confronted in this text, with a larger conversation about the reification of cognitive functioning in society that marginalises some and praises others.