This article was first published on Medium.com by Sarah Awa and is being used with permission here.
It’s time for me to address this topic because, unfortunately, I’ve just had my heart broken by a book that started out with excellent disability representation only to crash and burn in the final third. What happened? In broad strokes, the author did not understand the ultimate consequences of disability. That failure, as you will see below, can have a disastrous effect on readers, both disabled and otherwise. As someone who has battled a serious, incurable autoimmune disease for more than 17 years, I care deeply about this topic, and so I’m going to show you how to write disabled and/or chronically ill people* well. But first, let me explain why writing them well is important.
Why Writing Disability Well Is Important
In order to explain this one, let me talk about the biggest negative disability trope: what TVTropes calls “Bury Your Disabled.” Historically, disabled characters have been killed off disproportionately in books, often with the connotation not only that the disabled can’t protect themselves but also that it’s better to be dead than disabled.
Take a second to imagine that you are disabled, possibly that you have been struggling for years to survive. Now consider the psychological consequences of being told again and again and again and again by the very stories meant to lift you up and teach you lessons . . . that you’re useless and would be better off dead.
Think about it. Think about how you’d feel.
Or consider the trope Throwing Off the Disability. As TVTropes explains, “This trope can provoke the implication that any disabled person who doesn’t throw off their disability must somehow want to remain disabled.”
Chronically ill and disabled people are people, and we are also people who tend to think about our own deaths more than the average human being does. It’s not that we’re trying to; it’s that we have no choice! So being told we’re better off dead, that we soon will be dead, or that we’re only disabled because we want to be, is horrifically harmful. Especially when we’re being told that by the very books we’re reading for pleasure, by the very books we’re using to distract ourselves from our own deaths.
On the other hand, when books show us how we can live (both literally and mentally), they help us live in reality!
Does this mean you can never kill off or cure a disabled character? Of course not. But as Fay Onyx on Mythcreants puts it, “Knowing that violence happens to disabled characters more often . . . err on the side of not killing disabled characters. . . . Because there aren’t many awesome disabled characters for people to identify with, having living disabled characters with meaningful futures in front of them is all the more important” (emphasis mine).
As an author, you have the unique opportunity to help break this cycle and improve the lives of your readers.
Or to do them even more harm.
The Solution: Good Writing and Marketing Technique
Different genres and subgenres have different audiences, tropes, and expectations—and I’ll get to the importance of knowing your audience in a moment. But first, let’s talk generally about what makes good and bad characters.
In any piece of writing, one of the ideals for a good character is one who is well-rounded and feels real, so that the reader can say, “Hey, I’ve known someone like that!” They have likes, dislikes, hobbies, quirks, strengths, and weaknesses . . . regardless of whether they’re the protagonist, antagonist, or something in between.
Real human beings are never defined by a single term. If your character’s sole attribute is that she’s disabled—or black or a woman or an archeologist—then she’s a bad character. Instead, she should be a person who is influenced by all these factors and more but remains, at her core, a person first, and everything else second.
One major trope to be aware of is a disabled villain whose disability makes him more fearsome or deformed. There are plenty of famous disabled villains—Darth Vader and Captain Hook spring to mind—but the question is: is Darth Vader more intimidating because he’s disabled, and that is the entire reason he’s disabled? Or is his disability merely one part of his complex character—one that affects but does not define him? Now, of course, some people really do find disability to be intimidating, and so you might have characters who find Darth Vader intimidating specifically because he is disabled. Whether this is harmful or not depends on whether the narrative agrees with them. As the author and the narrator, you are not a passive source; you are able to provide subtle commentary on whether characters’ perceptions are accurate.
Writers make the exact same mistake when they make a character sweet, innocent, and pure because they’re disabled. Again, think of this in terms of race, gender, occupation, or social class: is she an awesome character because she’s disabled or black or a woman or an archeologist or obsessed with a man—or is she a disabled, black, female archeologist with a complex psychology who is made fascinating because of the way in which she goes about finding a lost city on Pluto? And this might be made easier or more difficult by one of her attributes, but she herself is not defined by those attributes.
Disabled people are people, not symbols. Good characters reflect that.
Knowing Your Audience
The book that recently broke my heart made plenty of references to the character’s disability right off the bat, including the first paragraph of the back-cover summary. The premise of the book, established in that same summary, was about making sure this character lived to fulfill his prophesied destiny; and he was an extremely loveable character, too. The subgenre wasn’t grimdark. The overall tone was hopeful. There were no hints that I noticed in the first two-thirds or so of the book that he might actually die; his health was fine, and he certainly didn’t want to die. All of this screams, “He’s going to live!” But in the end, he didn’t.
I felt utterly betrayed. Of course I did. This is a classic example of both deceptive marketing and an author failing to keep his narrative promises. No doubt the author did this because he wanted a surprise plot twist—but this is where knowing your audience comes in.
To put it another way: You can throw a surprise party for your healthy, extroverted teenage nephew that you know he’ll love, or you can throw one for your 100-year-old grandma that’ll give her a literal heart attack.
If you want to write a disabled character, please consider the impact that your representation will have on your readers. If you are concerned that a certain number of your readers might be harmed by your book, then there are plenty of ways to establish narrative promises and marketing to warn them of what is to come: establish an atmosphere of tragedy in the first chapter. You can supplement this in the summary for your book or on your website, but good writing will have it in the writing itself. And, of course, you can have plot twists, but they need to be foreshadowed properly to be any good. (For more on what narrative promises are and how they’re important, watch this video.)
Disabled people are people too, with personalities as full and rich and complex as any other human’s, and they deserve to be treated as such. But they haven’t been, historically, in fiction or in reality. That needs to change. It’s (past) time to break the cycle.
People with disabilities tend toward having poorer mental health, and they also comprise fiction’s largest under-represented minority group. They’re longing for not just more but better representation, and it needs to be done in a kind and respectful way that considers the unique situation of this demographic.
Aside from making sure to use good writing and marketing techniques, writers also need to do thorough research. Read about the personal experiences of people who have the illness/disability, not just about the clinical side and symptoms of it. If you are a writer with a disability, I encourage you to incorporate disabled characters in your work. I’ve done this myself: my urban-fantasy novel, Hunter’s Moon, uses werewolves as a metaphor for chronic illness. The main character goes through intense physical pain each month, and her mental health suffers too: she feels alone, isolated, scared, and desperate; she goes to great lengths to hide her condition. She feels unable to fit in and unable to be understood. Like I have felt, like many disabled people have felt, she feels like there is a gap between other people and her.
Writing can bridge that gap. According to a study posted by the National Library of Medicine, “Research has shown that writing narratives can increase perspective taking and empathy toward other people, which may engender more positive attitudes.”
So please: write thoughtfully and write well. We can do this.
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*For the sake of brevity, I’m going to use the term “disabled” to mean both, as there is significant overlap.