Discussion: 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?



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2 Comments

  1. What a powerful resource you are providing here–I’m awed, and I’ll be back. I worked with survivors of stroke for years before turning to writing and I love how you discuss the importance of seeing more “spectrums” and gradations of ability, and the physicality of a disability. Thank you for offering such great advice and insights. Lots of think about.
    Lindsey

  2. What Koby says also applies to deaf people. Many writers make their deaf characters completely deaf. On one hand, some deaf people really cannot hear anything. But on the other hand, most deaf and hard of hearing people can hear at least some things. In some cases we may be able to hear voices, we just don’t hear them well enough or clearly enough to understand what is being said unless we can also rely on visual cues (such as lip reading) to help us.

    I would also remind hearing people that most deaf people are not champion lip readers. Champion lip readers exist in real life, but are not nearly as common as they are in fiction. And even champion lip readers usually find lip reading to be very hard work requiring a LOT of mental stamina and effort. Only 30 percent of all speech sounds in English are visible on the lips, so “lip reading” is a misnomer. “Lip reading” is basically a continuous game of hang man: the lip reading part fills in a few speech sounds as clues for you, possibly some residual hearing lets you fill in a few more, then the rest are left blank for you to extrapolate on your own. I understand it can be very tempting to make your deaf character a champion lip reader. Having to ask people to repeat themselves umpteen times over because you keep missing what they say, and then having to ask them to write things down instead gets old very fast in real life. And it’s at least as tedious reading about it as it is to live it. Having your deaf character be a champion lip reader is a convenient way to avoid having to wrestle with how to convey the difficulty of communication for a deaf person who doesn’t always lip read everything without needing to make them ask, “write that down please” a zillion times in every scene. But those of us who lip read only some things some of the time deserve to see ourselves represented too. And so do deaf people who lip read basically nothing.

    Other reminders: Don’t forget that people with disabilities are as diverse in gender, race, socio economic class, sexual orientation, and so forth as the rest of the population. Don’t make all of us cishet white middle class men or boys. Also, bear in mind that having one disability doesn’t make you immune to acquiring other disabilities. People with multiple disabilities are more common than many people realize. Many things that can cause one disability can also cause other disabilities: for example, premature birth can sometimes cause one disability at a time, or can cause a child to have multiple disabilities. Same for meningitis: this disease can often lead to deafness, or blindness, or to other disabilities. Sometimes it will only cause one disability in isolation, but sometimes it causes more than one at the same time. It’s fine to have characters who have only one disability–this certainly happens often in real life also! Just bear in mind that some of us have multiple disabilities. It would be nice to occasionally see that fact reflected in popular media.

    Another reminder: it would be nice to see more disabled characters who have some connection to the disability community, even if it’s just one friend who shares a similar disability. There are so many organizations and on-line forums these days that can make it easier than ever for even people with rare conditions to find each other. If the condition is really really rare, then it may be the only other person you know with your condition lives in another country or state and you can only communicate by email and occasionally (when time zones can be coordinated) by Skype. But if it’s common, there may be a very active local community, especially if you’re in an urban area. Yes, many of us form many of our friendships and other relationships with non-disabled people, but probably most of us have at least one friend–and maybe many–who share the same disability or perhaps different disabilities.

    This is several things, not just one! But if I really had to choose just one, i would go with remembering that people with disabilities are diverse in all the same ways that everyone else is diverse–as well as also being diverse in the degree, type, and severity of our disabilities and how these impact our lives.

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