Tag Archives: chronic pain

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

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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?

Sara Polsky reviews GATHERING BLUE

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Cover for THIS IS HOW I FIND HERSara PolskySara Polsky is a writer and editor whose debut YA novel, THIS IS HOW I FIND HER, will be published by Albert Whitman on September 1. Her work has appeared in Strange Horizons, The Christian Science Monitor, Poets & Writers, The Awl, and other publications. She lives and writes in New York City. Visit her at her website or on Twitter or Facebook.

Cover for GATHERING BLUEPeople with disabilities aren’t usually allowed to remain alive in the society of Lois Lowry’s Gathering Blue (loosely a companion novel to The Giver). But Kira, the protagonist, has managed to make it to young adulthood with a “twisted leg,” thanks to a mother who fought for her and a grandfather who was powerful in the community. When her mother dies, though, Kira’s protection disappears. And society is ready to cast Kira out: the neighbor women decide they would rather have Kira’s land to build a pen for their children. They go before the community’s leaders, the Council of Guardians, to argue that Kira “has not contributed,” and so doesn’t deserve to keep her land. She is a burden because “she cannot dig or plant or weed…She is slow, and she eats a lot.”

The Council grants the neighbors’ request for the land, partly because it has other plans for Kira. She is a talented threader, so she is given a room in the Council’s building and a task — work she can do, unlike the physical labor she has been unable to participate in her entire life. She is to repair the Singer’s robe, worn at an annual ceremony. And in the Council Edifice she encounters other artists, also made to live apart from the community (though these artists, as far as the story indicates, are able-bodied), with specific tasks to complete. Kira ends up becoming friends with the other residents, a carver and a singer — but she is also doubly isolated by her disability and her artistic ability.

The story suggests that Kira’s talents as a threader make up for her disability, justifying her continued survival and the Council’s support of her. Since her birth, Kira’s mother has told her that, for example, “one bent leg is of no importance when measured against your cleverness. The stories you tell to the tykes, the pictures you create with words — and with thread! The threading you do! It is unlike any threading the people have ever seen!” It is because of this skill that the Council takes the unusual step of granting Kira a new role, with the disturbing implication that without it, she would be worthless.

Kira’s disability is never far from the story. She can’t rebuild her cott — the small house she shared with her mother — because she cannot climb. She can’t expect to marry because “no one would desire Kira.” Even once Kira has found her own meaningful work, a fit for her particular talents, the physical effort involved in some of that work, like walking to the hut of an old woman from whom Kira is learning to dye thread, still poses problems. This felt, to me, realistic — chronic pain remains a constant, even when one is engaged in consuming, enjoyable work. Given how much Kira’s disability affects her standing in the community, it made sense that it dominated so much of the narrative.

What I found frustrating, though, is that Kira doesn’t question the assumptions about disability that are built into her world and into the story. It’s true that Kira will never be able to perform some of the physical tasks expected of members of her community. It’s not necessarily true, though, that these limitations must make Kira a burden; that the physical labor she is able to do, picking up scraps for the weavers, is not meaningful or necessary; that she can’t expect to be able to marry because of what another character describes as her “horrid gimp”; or even that she must have other talents to give her worth. None of these assumptions are inevitable consequences of Kira’s disability — they are social attitudes. They are beliefs that can be changed.

It’s only at the end of the book, when Kira learns of another society with different ideas, where people with disabilities are welcome to live in the community and accommodate everyone by working together, that she senses there might be another way to look at things. Even then, her thoughts are more about her art than about her disability. She wants to free herself to use her talents for her own ends, rather than the Council’s, and thus help her community imagine a different way of life. There’s little indication, though, that a radically different approach to disability is part of Kira’s vision. And if dystopian stories reflect our world back to us at extremes, letting us see its most problematic attitudes and allowing us, perhaps, to imagine solutions, that seems a missed opportunity.