I’ve been hemming and hawing over writing a post about this for a while. I keep coming across the same issues over and over again when I edit so I figured it’s time. Today, I want to talk a bit about writing disabilities, some things to keep in mind when you do, and some things I notice frequently about disability portrayal when I edit.
First, some background, because you might be asking, “Hey Sarah, aside from being an editor, what qualifies you to talk about disability representation in writing?”
Well, I’m disabled. I’m an ambulatory wheelchair user. Due to a severe and permanent spine injury, I’m losing mobility. I have Ehlers-Danlos Syndrome as well, which comes with a whole host of connective tissue issues, joint problems, arthritis, frequent dislocations and subluxations, and a whole boatload of chronic pain. I live the disabled life. Due to this, I really focus on its portrayal in literature because this is my life, and disabled people belong in books too.
But, I keep seeing these issues coming up over and over again in the books I edit. I’ve decided to do a (very) brief post about an extremely complicated issue to maybe break down some of the most common things I see in the books I work on and offer some tips and maybe a disabled point of view as I do so.
Please understand that this is a BRIEF post. I could literally teach courses that go on for weeks on this topic. It’s nuanced and everyone’s disabled experience is different. I am not the end all be all of disability representation in writing. I advise you, always, to seek out more than one opinion. These are just some things I see repeatedly, and feel like they might be true across the board for most disabled writers and readers. I can’t speak for everyone, though. I can only speak for myself (because of this, I use myself as examples).
So, please use this as it’s intended: a brief list. Maybe a jumping-off point. At least it is some things to consider. As always, your mileage may vary. All situations differ. You get the idea.
Ready? Let’s go.
We are more than our disabilities.
I tend to see this a lot in books. Authors either go all in, so the character is completely summed up by their disability, or they don’t go into the disabled experience far enough. Writing disability can be daunting and difficult. There is a lot to consider and a lot of minefields out there to be aware of. That can be hard, especially if the disabled experience isn’t something you’re terribly familiar with.
What I advise writers to do when writing a disabled character is to think about the disability last. I mean that in the strictest sense. When you create a disabled character, create the character the way you’d create any other character. Then, when you’ve got the character all figured out, layer in the disability. Do this last. LAST, I SAY. Why? Because disabled people are more than their disabilities. I’m an entire person outside of my limitations and health problems. I love to garden, do photography, and colored pencil art. I have a dog. I’m obsessed with bears and octopuses (I still think “octopi” or “octopod” are better plural options. This is a hill I will die on.) I love learning languages. I have a family. The list goes on.
Being disabled is just part of who I am, and if I was going to be represented in a story, I’d want my character’s disability to only be part of who she is too.
A great way to get around having a character who is defined by their disability and nothing else is to create the person first, and then, when you’ve got the person figured out, layer in the aspects of disability you want to be part of that character’s experience. That way, you’ve got an entire person, and their disability is just part of who they are rather than all of who they are.
It’s easy to let a character become dominated by their disabilities, but that’s not really good disability representation. Part of what disabled people fight against is being defined by their limitations by the society they live in. It becomes a cage and not one of our own design. Don’t cage your characters the same way. Give them the liberty of being a person who happens to be disabled, rather than writing a disability that happens to be person-shaped.
Language matters.
One thing I call out a lot when I edit is ableist language. Ableist language is any language that demeans a person who has a disability. While often unintentionally used, it can be extremely harmful. These terms, beyond personally harming someone, often also carry a lot of historical baggage which can compound the issue. When you’re dealing with a marginalized group of people, it is important to understand that words have power, and the words you use directly impact the representation.
Some ableist terms are understood to be unusable but a lot of them float under most people’s awareness. For example, the phrase “falling on deaf ears” associates deafness with willful ignorance. The same with “he was blind to it”. This might not seem like a big deal to a lot of people, but these phrases can do lasting harm to the people they undermine. They matter because words are powerful.
Frequently, ableist language (known to some as ‘disableist’ language) crops up in the slang we use, like calling something “dumb” or “lame”, or making a declaration like, “I’m so OCD!”. Though these might feel like casual slights or exclamations, they still do damage… using disability as a shorthand for something negative or inferior reinforces negative attitudes and actions, and fuels the larger systems of oppression in place.
The Harmful Ableist Language you Unknowingly Use — BBC Worklife
Keep in mind that someone reading your book is going to identify with the disabled person you are writing. The words you use are going to make that identification either a positive experience or a negative one. Think, for a moment, about what your words would say to that person.
Thankfully, ableist language is one of the easiest things to edit out of a book. There’s usually a quick twist to the verbiage I can do easily in the editing process that takes the ableism out. However, I always leave a note explaining why that language is problematic. Why do I do that? Because I genuinely don’t think a lot of people who aren’t disabled are terribly aware of how the language we use can be so harmful to the disabled people around them and people won’t know unless they are told. The sad truth is that so many of these terms are so embedded in our regular use of language, we don’t even really notice it (<– case and point, it’s always a moving target and something I’m working on too. This was “we don’t even really see them anymore” which is *ehem* ableist, so I edited the ableism out) anymore. They sort of sneak in but trust me when I say, the disabled people who read your book will notice it.
And it matters to us.
There are a whole host of ableist language examples and alternatives online. I suggest reading the BBC article I linked in the quote above. Maybe add this one to it. And if you’re really curious, do a google search, or ping a disabled person and ask them. Many disabled people are eager to see themselves in the stories they read and are more than willing to offer insight or advice to help you get the representation right. Ask them kindly, and they’ll likely be willing to help. (Please be aware that the disabled experience has a whole lot of deep, deep feels attached to it, and not everyone is going to want to poke that particular bear, so be understanding of that too. If someone isn’t willing to go there with you, accept that graciously. It isn’t about you.)
Disabilities don’t just go away.
Some disabilities are temporary. If you’re healing from an injury or an illness, you might be disabled for a while in some way but perhaps you’ll heal over time. Even then, though, I’d say the disabled experience never really goes away. It will reverberate.
Let’s say, for example, you have a character who had a shoulder injury. Maybe it healed, but for a while, they were in extreme pain and couldn’t really use that arm. They might be able to get back to their old self eventually, but I guarantee they’ll be more aware of their arm from that point on. They’ll be more aware of how they use it, if they can use it, where they put things, and how they grab things. There will be a bit more focus on the strengths and weaknesses of that arm from that point on. Maybe not a focal point of that character’s story, but enough to pepper it here and there to make it realistic and relatable.
More than that, though, a lot of disabled people never really “heal”. For example, for me, it’s not a question of healing. I will never heal. This is my situation and I’m only going to get worse as I get older. I know that. Personally, a lot of disability portrayal I look for and want to see is less about “healing” and more about living/accepting the state of things in this body. I want to read books with characters who are not only disabled but disabled and awesome because disabled people can save the day too, we just need a chance to do so.
This, perhaps, touches a bit on the emotions involved in the disabled experience. They are different with everyone, but the point is that even if you heal from the injury, the injury is going to leave its mark, and you will think about how you approach things a bit differently in the future. If you sprain your ankle, you’re going to have to be careful with it after it’s healed, and you’ll be more aware of it. Re-injury will be easier. On the other hand, a lot of disabilities never heal, and it’s less a story about moving past disability and more about making that disability an integral and natural part of the story.
Tropes can be harmful.
Disability tropes can be… a whole can of worms and I tend to take them on a case-by-case basis. There are a few I will always flag and advise authors to remove, though. Let me touch on two of them.
One is the token disabled character. According to Wikipedia, “Tokenism is the practice of making a perfunctory or symbolic effort to be inclusive of members of minority groups.” Think of this as the one disabled character in a group of able-bodied folks. He gets marched out once or twice to make a point, but otherwise, he’s sidelined, ignored, or completely forgotten. The disabled person exists in a way that basically only checks off a box on the “inclusivity” checklist and not much more. They aren’t real, and they don’t actually matter.
Think about what that says to all the disabled people who read that trope. We only matter sometimes, and only to prove a point or fill a slot. It’s extremely dehumanizing to only matter when it’s most convenient to the able-bodied people around us. Don’t do that to us in books too.
Mercy killing is probably my most loathed disability trope. This happens when someone is injured or ill or otherwise disabled and the able-bodied people around them basically make a decision on that character’s behalf. “Sally wouldn’t want to live like this. It’ll be a mercy to put her out of her misery. She’d thank us if she could.”
The issue there is you’re completely removing the autonomy from the individual being discussed. Sally never once gets a choice about her fate. Other people make that decision for her because Sally no longer gets to make her own decisions. And while that might not seem like a big deal when it’s boiled down like that, let me add some nuance to it. Not only are other people making life and death decisions on Sally’s behalf, but they’re also essentially saying it would be better to be dead than to live as Sally is living.
Now, take a step back, and imagine how that comes across to all your readers who identify with Sally and her condition.
Think really hard about what that says to us.
Disabilities will impact how your characters think, act, and react.
This might seem pretty obvious, but you’d be amazed how often I see this issue in manuscripts.
Remember your character’s disabilities. If they can’t use stairs, then you need to not have them walk upstairs. If they can’t see the color blue, don’t have them suddenly look at the sky and go, “Wow, is that a beautiful shade of blue.” Basically, don’t lose the thread of how you’ve created them, and make sure you pull that thread throughout the entire book.
More, remember this is a book you are writing. You can create the world any way you want. If you are writing a secondary fantasy world with a character who can’t use stairs, you can absolutely put ramps in your castle, or even just make the entire castle one level. No one is making you create an ableist-centric world. You can modify it to fit your characters. I promise you can.
I advise you read this article by fellow EDSer and disability activist, Ace Ratcliff. Why Are Spaces in Science Fiction Not Wheelchair-Accessible?
There’s an entire emotional landscape involving disabilities.
Disabilities often get summed up as a physical or mental condition but there’s a whole load of emotions that go into the disabled experience, from mourning who you once were to adjusting to your current condition, to the emotional baggage we have to wade through on the daily just existing in a world that is created for able-bodied people. I mean, just the aspect of being so frequently misunderstood could fill books. Then, consider other things, maybe more subtle. Sometimes, for example, I see people posting about how much they ran today on social media and it’s one of the most triggering, depressing things because I will never run again. Hell, I don’t even know if I’ll be able to walk tomorrow. Sometimes the only thing I can brag about is, “Today I managed to walk into the kitchen without screaming.” Sometimes, that fact can really destroy my emotional status quo.
I’m not saying the disabled experience needs to all focus on emotions, but I am saying that emotions are as much a part of being disabled as anything else, and a lot of times it’s things no one else seems to notice that really tend to set me off. Maybe that’s similar to other disabled people too. To show your character struggling with those emotions is not wrong, but rather, one of the most realistic disability portrayals I could possibly see. Sometimes it’s hard, and sometimes our emotions are deep and uncomfortable and our bodies, minds, and souls are battlefields. Your disabled characters should reflect that.
I also want to say, regarding this point, that while a lot of disabled people are absolutely willing to open up so authors can better represent them in their books, the emotional weight that comes along with disabilities is… a lot… and not everyone is willing, ready, or able to dive into that depth. There are times when I flat-out cannot—will not—talk about it at all, period. It comes in waves for me, but everyone is different. Please, reach out to disabled people, but also understand that we aren’t obligated to dive into these waters if we aren’t in a place where we can. If we do, understand this is a task that has a lot of emotional weight attached to it, and you need to respect that.
Every disabled experience is different.
Every disabled experience is different. I could fill a room with people who have Ehlers-Danlos Syndrome, and while we’ll all likely have some similarities across the board (pain, for example), the experiences aside from that will be vastly, dramatically different, as will the emotional landscape that comes along with them. Therefore, when you are researching disabilities, it’s important to not pin all that research on one person or get it all from one place. Get a sprawl of insights and then from that, pinpoint the aspects you want to see in your character.
It’s not a one-size-fits-all thing. We are all different and so are our experiences.
Sensitivity readers are fantastic.
I’ve been hammering this point a bit, but honestly, I cannot tell you enough: talk to disabled people. If you can get a few of them as sensitivity readers, please do. There are nuances in this experience that you just won’t see or understand unless you talk to someone who lives it. I will always, always, always bang the drum of sensitivity readers.
That being said, sensitivity reading is work, especially when it comes with a whole host of emotions and personal exploration. Sensitivity readers deserve compensation for their time. They also need to be respected. If someone cannot go there right now, respect that. Maybe ask them if they know anyone who can. If someone does offer to do this for you, respect that too. Understand, sensitivity reading isn’t just a fun thing for us or a small favor. This is our life, and we’re opening it up for you. It’s not a small thing. It’s huge. Respect the sensitivity reader, and respect the vulnerability and honesty they are offering you in the act of sensitivity reading.
This human perspective though, really makes disability representation pop. A sensitivity reader who “lives it” is going to pinpoint some nuances in the disabled life and emotional landscape that you simply cannot get from reading about it in books or google searches.
Listen to what disabled people say.
Mostly, listen to what disabled people say and respect that. We live this life, so we know when things are offensive or problematic. We know when representation needs to be tweaked. You don’t have the right to tell us what we experience is wrong.
You just don’t.
We belong in stories.
Maybe this is all very intimidating and I know it can be, but really what this boils down to is as simple as this: We belong in your stories, and all we’re really looking for is fair representation. Talk to us and listen to us, and you’ll be fine.