Holiday Hiatus

Hello everyone!

We hope your holiday season has been wonderful so far. Disability in Kidlit will be taking a brief two-week hiatus beginning today, but we’ll be back on January 10, 2014 with more excellent posts.

As always, if you’re interested in writing a post or a review, please see our submission guidelines. We’d love to hear from you!

Have a happy New Year! We’ll see you on the other side.

Corinne, Kayla, Kody

s.e. smith: ‘Don’t Worry, It’s Fine When It Happens to Crazy People!’

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.

As a mentally ill reader, one of my most pressing frustrations when reading YA, or interacting with any pop culture, is the handling of mental illness. Mental illness is frequently dealt with in very troped, and often harmful, ways, illustrating that creators didn’t take the time to research, learn about the lived experiences of the communities they are writing about, or think about the responsibility involved in depicting mentally ill people, an already marginalised group within our larger culture.

To be crazy is to be dangerous, and not necessarily to yourself or others. Mental health diagnoses are used as a tool for power and control, to silence people, to take their children away, to deny employment and benefits, to abuse people, to threaten people. Mentally ill people, like others with disabilities, are highly vulnerable to abuse and exploitation.

Somewhat uniquely, though, this is a disability that hits adolescents and teens particularly hard, because mental illness often onsets around this age. Unlike other disabilities, which may be congenital or acquired at any age, and thus can play an emergent role in any stage of life, mental illness is often something people grapple with for the first time in their teen years (though younger people can and do have mental illnesses). The fiction they’re interacting with at the time can have a profound effect on how they deal with their diagnoses, and unfortunately, that fiction often sends very negative messages.

The onset of mental illness doesn’t happen like flipping a switch; you will not wake up one morning and suddenly be crazy. Instead, it happens by stages, often so subtly that you may not fully realise what is happening to you. You don’t understand why you’re getting increasingly tired, everything is hard to do, and you’re losing the will to get out of bed. You don’t see any reason to go on living. There’s a voice in your head compelling you to do something—and warning you not to listen to other people who tell you the voice in your head isn’t there. You’re bounding with abundant energy, you can take on the world, you don’t need to sleep or rest EVER AGAIN! Everything makes you cry and you feel like the entire world is fracturing around you. You trust no one, and everyone is obviously out to get you.

These are just some of the many symptoms youth can experience at the onset of mental illness. Often, they happen late in high school and early in college, when people are trying to live independently and may be afraid or unwilling to reach out. Thanks to tropes and stereotypes about mental illness, and the stigma associated with mental health conditions, people who think they might be sick could be reluctant to seek help, and they may not even recognise what they’re experiencing as mental illness.

After all, OCD is when you’re super particular about your kitchen, right? So compulsively washing your hands, needing to check and recheck and recheck your doors, or being constantly worried about leaving the stove on isn’t OCD. You’re not sure what it is, but you definitely don’t have a treatable mental health condition. And schizophrenia is when you have a split personality, right? So experiencing a break with reality, not being sure about what is real and what is not, that’s definitely not schizophrenia—besides, schizophrenia is scary and it only happens to crazy people, like that freaky homeless guy by the post office.

So we come to mental illness in YA, which is often depicted in very stereotyped and inaccurate ways; like TV OCD, as I affectionally (and bitterly) call depictions of OCD on television, the handling of mental health conditions in YA often leaves much to be desired. It reflects the fears and imaginations of the author, rather than the reality of the mental health condition, and it is perhaps not surprising that the best examples of mental illness in YA come from authors who have experienced it themselves.

One of the most troubling things about the way mental illness is handled in YA is that, as in society, it is framed as something inherently wrong and awful, rather than a simple fact of life. It’s estimated that around 20% of people will experience mental health conditions at some point during their lives, making them extremely common—and breaking down stereotypes about them would make it a lot easier for people to seek treatment.

There are two recurrent tropes around mental illness in YA that particularly trouble me, beyond falsities in the depictions of specific mental health conditions. One is the character who thinks she’s mentally ill who later realises she has superpowers. The underlying message here is actually a kind of interesting one: here’s a protagonist experiencing something totally unfamiliar, scary, and alien (which the onset of mental illness can feel like) who doesn’t know how to handle it…but then it usually gets twisted, and she is afraid she’s crazy, because being crazy is bad.

Maybe she has a mentally ill family member or friend who has exposed her to the ‘horrors’ of craziness. Maybe she’s institutionalised, either mistakenly or with malice by another character who wants to keep her from accessing her powers. In all cases, the takeaway is that being crazy is definitely not okay, but having superpowers, of course, is awesome.

What’s notable about this, other than the underlying assumption that being crazy is wrong, is that this is never actually challenged in the narrative. Never once does the protagonist ask herself what would be so wrong about having a mental health condition, and rarely do we see her exploring treatment and management options. Instead, she flails in terror until she finds out she has superpowers, at which point everything is usually fine again, except more awesome, because superpowers.

What’s the difference between being crazy and having superpowers? Why is one good, while the other is not? Why do we consider one to be a condition that must be managed in a particular way, and the other something that people should be trained to use and then harness for good? Picking apart these distinctions is critical for authors who want to explore storylines like this, because while ‘woah, I think I am going crazy’ may be a legitimate response to seeing things others don’t, appearing to experience a break with reality, and appearing to alter the world around you, the followup response shouldn’t be ‘how terrible, now I am a crazy person! Oh no!’

Similar narrative structures take place within the framework of institutionalisation, where the asylum is framed as something horrifying and awful…for sane people. When we see institutions in YA, we usually see them crop up in one of two contexts: a sane person wrongly incarcerated in one, or a spooky (often old, sometimes abandoned but haunted by ghosts) asylum filled with crazy people. Asylums are scary because they are filled with crazy people, and our protagonists don’t belong in them because they are sane, healthy, ‘normal,’ not people who should be wrongfully trapped in among the dangerous, frightening, traumatic mentally ill people.

Never once is the concept of the asylum challenged, or is the larger discussion about institutionalisation and oppression incorporated into the narrative. Members of the mental health community might also argue that some asylums are bad and scary, but for a very different reason. The problem with mental health facilities isn’t that they are filled with people who need treatment, but with the fact that residential institutions have a long and horrific history of patient abuse, experimental ‘treatments’ amounting to little more than torture, and a host of other problems. Historically, asylums were used as a tool to suppress and confine people, and today, some are used for much the same purpose, right down to purposefully overmedicating people to keep them compliant. Victims of sexual assault, physical abuse, and other indignities in asylums are often prevented from reporting, or mocked when they try to report.

These are horror stories, but they aren’t the horror stories we usually see when it comes to talking about mental health facilities in YA. Instead, these facilities are cast in simple terms: they’re okay for crazy people, but not for ‘everyone else.’ This idea is common with the handling of mental illness and disability in general, that treatment as a second class is acceptable for ‘them’ because it’s simply part of how the system works and it always has been. Thus, YA rarely challenges the fundamental assumption that institutionalisation is an acceptable and productive way of dealing with mental illness and mentally ill people; it doesn’t explore the warehousing and torment of human beings that occurs in long-term facilities.

When we see positive, mental illness-centered depictions of institutions, it’s usually inpatient hospital wards in issue books where people are sent for ED or suicide attempt recovery. While both depictions are vitally needed, they need to be balanced with the fact that psychiatricisation and institutionalisation have been used as abusive tools against not just mentally ill people, but also women and people of colour, for centuries. When I see asylums promoted as a positive good (and authors failing to distinguish between, for example, a highly ethical inpatient ward in a modern hospital and a long-term residential care facility), I see yet another reminder that society believes mentally ill people are best when locked up, hidden away from public view, ‘in treatment,’ no matter what that ‘treatment’ might look like.

How can authors avoid these tropes, and others associated with mental illness? Obviously, research, research, research, and interacting directly with members of the mentally ill community, including those with the specific diagnoses being depicted, such as anxiety disorders. It’s critical to talk to more than one person, as well, because mental illnesses are highly variable, and diagnostic creep means two people with the same diagnosis may have radically different symptoms, just as two people with very similar symptoms might have totally different diagnoses. And remember that even someone with a well-managed mental illness has bad days, because sometimes, disability really sucks.

Want to avoid problems with characters who mistake the onset of supernatural powers for mental illness? Think carefully about what you’re saying, how you’re saying it, and how you’re interacting with the character. Talk to people about their onsets of mental illness and the emotions that swirled around them, so you can depict your character’s fear, uncertainty, and nerves accurately, but avoid falling into the trap of suggesting that developing a mental illness is a negative thing. Explore how people define ‘normality’ through the depiction of your character, and ask yourself: how awesome are superpowers, really?

Are there days when your character has trouble functioning because of her superpowers? When she’s frustrated because she feels like she can’t manage them? Instead of inadvertently turning superpowers into a bright, shiny alternative to disability, make them come at a cost; not only will you avoid some painful disability tropes, you’ll also make your book more engaging by raising the stakes and creating more tension for the character.

Planning to include a mental health facility in your book? Do. Your. Homework. Talk to people who have been institutionalised about the care they received, where they received it, and their experiences in the mental health system. Someone who was on suicide watch for two days in a hospital has a very different story from someone who was on an adolescent psychiatric ward for several weeks or months. Someone who stayed at a residential facility (or who lives in one) for an extended period of time has yet another experience to narrate.

Psychiatric facilities are as diverse as snowflakes, running the gamut from those that provide patients with maximum support for developing coping tools and techniques, managing their mental illnesses, and living independently, to abusive nightmares that are everything you imagined and worse. If you’re depicting one, don’t forget about the other, and don’t fall into the trap of thinking that all institutions are horrific dungeons of abuse or fairylands of supportive staff, and never forget the long and complex history of psychiatric facilities.

Above all, remember that being crazy is not a bad thing. Don’t attribute negative or undesirable behaviours to mental illness, or excuse a character’s unacceptable behaviours to mental health diagnoses. Like other disabilities, mental illness should be value-neutral: it’s a trait some people have and other people do not, and we all interact with it in very different ways.

Emily Ladau: Representation Matters

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

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

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

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

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

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

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

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

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

Kayla Whaley: All About Logistics

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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