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Sep 10

I Am Not Broken: The Language of Disability

I was at work yesterday talking to a coworker about my upcoming surgery when I mentioned, laughing, “I’m broken,” with a shrug. My coworker laughed, and I laughed and she moved on and I stayed right there, rooted to the floor, thinking about the words that had just slipped into my dialogue. I meant them as a joke, and that’s how they were received, but in that moment while I was watching her walk away, I realized just how profoundly I had degraded my own situation.

Perhaps I am feeling particularly touchy about this topic because earlier this week I had the absolutely horrible experience of watching an elderly woman reduce a teenager with Down syndrome to tears by calling him a “retard” in a public, crowded store (don’t worry, I yelled at her). Days later, I’m still moved to tears thinking about that teenager, who was telling jokes and laughing, absolutely shattered by one woman’s thoughtless remarks.

These words, these horrible, degrading words, slip into our dialogues at the worst possible times, and often we don’t even notice them. I’m not broken. I’m not bent. I’m not incapable. I might not work the same way everyone else does, but that doesn’t mean I’m unable to accomplish those things others can accomplish.

We seem to live in a world where the able-bodied among us are considered normal, and everyone else must strive to attain that level. That thinking floods the books we read, the way we view others, how we talk to each other, and the words we use. This mindset sets a ridiculous bar for people who, for whatever reason, might require an atypical way to get from point A to point B.

The thing about ableism is that it’s everywhere, and it’s incredibly common, and we don’t even realize it. It’s in the books we read, and in our daily lives. Ableism is that belief that everyone who is able-bodied is “normal” and everyone else is abnormal. Abelism is probably one of the most common kinds of –ism’s, and it rarely gets talked about. (Fun fact: Ableism has historical significance, and it is pretty tragic. This way of thinking is imbedded so deeply into our history, no wonder changing the mindset is hard.)

Simple questions like, “So what’s wrong with you? Are you blind? Deaf? Did a car accident paralyze you? Do you need help with everything?” draw dividing lines between ‘normal’ and ‘other’. Admittedly, most of these questions are asked innocently, and with good intentions, but part of the reason why they are so powerful, so divisive and frustrating is because we don’t realize how they draw lines between that person asking the questions, and the person who is obviously not like them. It sets camps, and makes groups. One person is more ‘normal’ than the other. We don’t think about those innocent, well meant words in that way because we are so used to them.

We are not broken; we’re just a different kind of normal. We are not incapable or unable; we just get things done a little differently.

That is, probably, why miracle cures and flimsy excuses for disabilities in literature bother me so much. It hasn’t been until fairly recently that a protagonist could be blind because that’s how they were. When I started reading books in speculative fiction when I was a teenager, the blind protagonist always had to have some sort of second sight to excuse away the disability. One couldn’t just be blind because that’s how things worked out for them. The maimed farmer had to be an incredible archer (or something else). The heart of those authors is in the right place. I can see the (flawed) logic there; I can tell that they aren’t trying to offend. In their own way they are trying to show that disabled characters are just as cool as the abled characters, just in a different way.

The thing is, blind people don’t need second sight to be cool. We don’t need to fix what isn’t broken, and we don’t need to imply that someone needs an extra compensating boost to reach the level of badassitude all those sighted people naturally attain by virtue of fully functioning eyes. It’s demeaning.

In a lot of ways speculative fiction is making leaps and bounds in the regard. Authors are starting to realize the right that disabled characters have to be in the stories they write. We are starting to realize that those characters do not require a reason or some magical explanation/second sight/whatever nifty thing to excuse away or compensate for said disability. These disabilities don’t limit characters, or make them any less cool or powerful. In fact, in most cases disabilities seem to make characters more memorable and emotionally powerful, realistic, and compelling.

It’s also pretty neat to read a book about someone in a wheelchair who can shoot better than just about anyone ever, and is one of the biggest badasses in speculative fiction. Susanna Odetta Holmes Dean is not a badass because she’s in a wheelchair. She’s a badass because that’s who she is on a fundamental level. The wheelchair is just an accessory, a different way to function that doesn’t make her any less normal or any more weird – just beautifully different. She isn’t incapable or unable. She isn’t unable, incapable or limited. There is no real reason to see her as different or less powerful and able than you or me.

And heaven forbid anyone call Odetta Holmes broken. That’s just about the last thing she is.

The world we live in isn’t defined by two versions of reality. There isn’t the “normal” reality for all the normal people, and the slightly skewed reality for all of the rest of us who yearn for normalcy. Our fiction should reflect that. King George VI wasn’t any less of a powerful speaker or ruler for all of his stuttering. Odetta Holmes wasn’t slowed down by her wheelchair.

I’m not broken and neither are you.

There is real power in the words we use, and the way we convey ideas. Speculative fiction is a genre of the imagination. It’s progressive and plays with ideas and themes that aren’t always commonplace in our world yet. We like to think of ourselves as cutting edge, ahead of the times. We are unafraid to ask “What if?” and then find out just what would be if that “what if” was a reality. We take incredible ideas and make them bite size. We get thoughts brewing, and progress rolling. We dare to look at the world we live in differently.

Isn’t it wonderful? There is so much to love about this genre. So very much.

Despite all of this progress, why are we so behind on disabilities? We talk about women and race and religion in our genre (as we should), but the topic of disabilities is pretty quiet. Why aren’t there any huge and evolved discussions about these ableist assumptions and how absolutely disempowering, degrading, and completely frustrating they are? While the prevalence of disabilities in books seems to be improving in both quality and quantity, there is a distinct lack of discussion that concerns me. We need to talk about how ableist thinking doesn’t reflect the world we live in. We need less of it in the books we read and the media we are tuned to. We need to look at our history, at the popular mindset, and dare it to change. Isn’t that what speculative fiction is all about?

Reading helps us become more empathic, more tuned in to those around us. I want my daughter to love literature, regardless of what genre(s) she ends up enjoying, but I want her to learn from it. Ableism is history. We deserve the books we read to reflect this. We owe it to ourselves, to our society, and to our progeny. We owe it to this progressive, fantastic genre. The way we think and talk about disabilities needs to change. Period.

We are not broken. We are not bent.

We are powerful, capable, beautiful people. We are important. We are normal. Our normal might be a little different than yours, but it is still normal. We’re no better or worse, more capable or incapable than anyone else. Just different, and shouldn’t we celebrate that?

We belong in your books, and in your discussions about diversity. We deserve language that uplifts and equals rather than divides and demeans.

Words are such small things that are so incredibly powerful.

19 comments

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  1. Paul Weimer (@princejvstin)

    Powerful stuff, Sarah.

  2. zellieh

    I love this post, and I admire you for making it. It’s something that badly needs saying. Especially the part about compensatory abilities: I hate it when loss of one sense is somehow supposed to sharpen up the others.

    That said, while I’m glad this worked for you, it’s not the only way. Personally, I found accepting myself as disabled was a great relief because it was the first time I was able to admit that I would never be able to manage a ‘normal’ life, and then start getting on with creating a life that could be normal for me, if that makes sense?

    Also, refusing to call oneself disabled is a sometimes a luxury if you live in a system that only provides disability benefits to people who accept some form of professionally-diagnosed disability, and medical treatment or support for it.

    I’m normal by my own standards, and I like being able to say ‘I’m not broken and neither are you’ here, to you — but it’s not something I can say to the DWP officials who judge me, deciding whether or not to pay the benefits that buy the food I need to live.

    1. Antonia Murphy

      Good point, Zeliah. I have a dear friend whose body was thoroughly broken in a car crash. He continued to live in New York for years, until one day his surgeon said, “Look, you are disabled. The sooner you start accepting that, the sooner you’ll be able to live your life. You shouldn’t be in a crowded city with icy streets, with people jostling you on the subway.” He took that to heart. He moved to California. He simplified his life. It wasn’t a defeat– he and his wife are very happy. He told me he found that acceptance to be very freeing.

  3. Melinda Primrose

    Thank you for this post! I am blind and deal with this frustration a lot. We don’t need to be “differently abled” to be awesome! I know there’s a lot of ignorance that is still around about a person with a disability. I think that’s a big part of the problem. People *think* they know what it’s like being disabled when they only know the stereotypes.
    *gets off soapbox*
    Thanks for a great post and letting me rant a little.
    Melinda Primrose

  4. A.E. Marling

    I loved N.K. Jemisin’s The Killing Moon, but I admit I was felt uncomfortable when reading The Broken Kingdoms. The protagonist was blind, and I was curious how a blind hero would interact with and experience the world. The issue was, though blind, she could see gods and anything magical. The result was many visual descriptions of hot gods. Rather than feeling empowered by her fantastic abilities, I felt cheated of a true experience. Perhaps I am being unfair, but I would love to hear suggestions of books where the protagonist is consistently blind yet still triumphant.

    1. Nalini Haynes

      It’d also be good to have a book written by a blind person explaining to sighted people what it is to be blind. Without my glasses in ideal conditions my vision falls into the blind category. With my glasses in bright sunlight or a darkened room, my vision is worse than without my glasses in ideal conditions. I can still see.

      This is not true of everyone with a vision impairment and a lot of people, especially albinos with less pigmentation than me, have worse eyesight than me.

      However, a genuine experience of someone who is vision impaired and/or legally blind could cause the scales to fall from the eyes of the sighted.

      Sadly, if a vision impaired person writes a vision impaired person, the SFF community will scream ‘MARY SUE’ and discard the book accordingly. Although I’m writing a novel, I’m not writing a vision impaired protagonist for that reason.

      It actually isn’t that hard to write vision impaired people. And we can still be kick-ass. I mean, my parents, knowing I was disabled, started me on judo because ‘that’s a blind people’s sport’. My disrupted childhood meant my training was inadequate and I gave up eventually but think about it: parents of a ‘blind’ child trained her in judo because it’s a blind sport.

      I am as disabled as you make me. (‘You’ being society.) I didn’t think of myself as disabled until I started experiencing constant, soul-destroying, career-annihalating disability discrimination. I’ve met some kick-ass people with disabilities, artists (physical impairment), events organisers (blind), writers (blind or mental health). If society allows us, we can enrich your world.

      1. A.E. Marling

        Nalini, thank you for commenting and relating your life experience.

        I look forward to your writing. For your future novels, I hope you do consider writing a blind protagonist. There’s no one more qualified. Many readers don’t object to Mary Sue characters. Those critics who do (such as myself) only dislike a Mary Sue if she has no fault except that she’s too beautiful. Everyone falls in love with her at once and makes a nuisance of themselves. If, however, you design a protagonist who has challenges that she must overcome, who must mature as a person over the course of the novel to complete her goal, and who is also blind, then very few will chide you as introducing a Mary Sue. And those who do will be vastly outnumbered by those who are grateful that you did.

        1. Nalini Haynes

          Thanks.

          My current novel has a blind side-kick who is also a bit of a catalyst. From this basis I’ve expanded my thinking into another novel, YA, with a few blindies at a mainstream high school. Maybe. But one novel at a time.

          I personally loathe and detest all characters who are too beautiful and everyone falls in love with them so I won’t be guilty of that! >:-)

  5. Pamela Freeman

    Sarah

    Great post – it’s something I struggle with as a writer, I know.

    The sad thing is that almost no one is ‘able’ in that judgemental sense – the ‘perfect’ genetic code doesn’t exist. But we as a culture pretend that it does, pretend to ourselves that we aren’t ‘broken’, each and every one of us in a different way – some physically, some emotionally, some psychologically, some all three (and they’re often the most interesting characters). Every author I know had something wrong with them in childhood. Something that took them out of the abled world into a time of being an observer rather than a participant. Usually it was physical; sometimes it was cultural (eg moving to another country); sometimes it was familial (too many secrets round here). But in every case, that sense of being different, of not fitting in and not measuring up, was what drove the creativity – it’s what makes the difference between an avid reader and a writer, I think.

    One of my students is writing a kids’ book in which a deaf character gains hearing back through magic. I begged him not to do it; to rethink the assumption behind that plot and, to his credit, he reconsidered. But I doubt a publisher would have objected. I thank you for the wake-up call; I will try harder to make my characters fully human

  6. cathal

    i’m gonna save this so my 2 month old son who was born with ACC can read this in 15 years time. thank you!

  7. Nalini Haynes

    I love what you’ve written. I’d like to add so much more but, really, I think the only way I can say what I want to say is to write a PhD thesis on the subject of disability in SFF and my personal experience of disability in society, including how able people expect me to take up less space, kicking my cane and expecting me to avoid them. Blind cane and I’m supposed to avoid them? WTF. [sigh]

    I’m still having a weekly struggle to get disability access to essential documentation to enable me to complete my Professional Writing and Editing degree (in spite of having a viable disability access plan) so I doubt very much I’ll ever do that PhD. Maybe, just maybe, I’ll write my thesis anyway, if I can summon the resilience to keep plodding on, unsupported and unpaid (except for the minion). Because this is life at the bottom of the food chain.

    Keep up the good work.

  8. Mercedes

    Beautiful post, Sarah, and I especially love Nalini’s comments. My son has a rare genetic disorder with severe mental and physical challenges. He’s eleven years old and can’t use a fork. He’ll almost certainly never be able to use a knife. I doubt he’ll ever truly live independently. But he can speak and play and read. Even if he couldn’t do these things, there are ways to communicate. There are books on tape. His life is rich and fulfilling based on what he CAN do and what he enjoys doing.

    That boy can hear a piece of music and it will move him to tears. He enjoys lying on his back and watching the ceiling fan, and will be perfectly content. There isn’t an ounce of guile in him. How refreshing to be around somebody who is completely honest! When he’s happy, you know he’s happy. When he’s upset, you know he’s upset. There isn’t a facade. There are no games. Because of his purity, I noticed how many social situations are really all about face, about saying the right thing and causing no waves. He doesn’t care about that.

    Society, and definitely Las Vegas, where things need to be physically pleasing at all times, disregards him as something less. But he isn’t, not at all. He might be the only truly real person I’ve ever met. He’s beautiful.

  9. Antonia Murphy

    Fascinating discussion, thank you. I am an author and the mother of a 6-year-old boy with a rare chromosome mutation, resulting in developmental delay. So many things I want to say here.

    His father and I call him “our little alien.” This is loving, not derogatory. The point is, we prefer to think of him as a perfect, affectionate little alien rather than a human with a disability. It’s up to us to learn how to communicate with our little space visitor.

    For years, people tried to encourage us by sharing stories of children who didn’t speak until they were seven (or whatever), but then became genius college professors. This is a variation on the champion archer who tragically goes blind. The subtext is: your son could be redeemed through great accomplishment. So therefore: if he doesn’t start talking and surprise us all with a PhD, he is not worthy of love.

    All that said, I’m not sure about the “ableism” argument. If my son doesn’t learn to speak and take care of himself, he will never be able to live independently. That’s not a prejudiced assumption, that’s just a fact. It doesn’t make him a less worthy human being, and it doesn’t cancel out his truly lovely qualities, but his disability may mean that he is not able to do things that neurotypical people can do.

    I wouldn’t want to take the “we’re all the same” argument to its extreme, because we’re not. Disability can be empowering, but it can also be terribly sad. In order to confront disability with complete honesty, we must also accept what is lost.

    1. BookwormBlues

      I see what you are saying and I 100% agree. I think I may have made my argument poorly. A huge chunk of dealing with limitations is realizing just how you’re limited and accepting that. I have a pretty severe genetic joint disorder. I’m constantly in and out of surgery. My mobility is very restricted. At my worst point, I was paralyzed and had to learn how to walk again. It sucks, and I hate it. Having issues, regardless of what they are, sucks.

      In the grand scope of things, I realize that my issues aren’t that bad but they certainly are limiting and there are things, simple things, that I will never be able to do. I need help to accomplish certain things. I need accommodations from work/other places. Adjusting to my limitations, especially when I couldn’t walk and was learning how to walk again, was very, very hard. When I finally came to terms with the fact that there are things that I *CAN’T* do and that’s okay, mentally my adjustments were a lot easier.

      There is a certain empowerment to saying, “This is me and all my flaws and strengths, and I’m okay with that.”

      Admittedly, I’m still working on it.

      All of that goes to say that yes, you’re right. It is important to realize our capabilities.

      Anyway, I totally agree with what you’re saying. I guess my post was more directed toward what you said in your comment: “It will never make him a less worthy human being.” Regardless of what we are capable or incapable of achieving, regardless of our limitations, we are all worthy human beings and we are all capable of wonderful things.

      I am having a hard time articulating what I’m thinking, so I hope some of my ideas come through this comment and perhaps answer you in an adequate way.

      1. Antonia Murphy

        I totally hear you and I get what you’re saying. Thank you for taking the time to articulate all this so thoughtfully! I’m just grateful to have a discussion on the topic that isn’t fraught with knee-jerk reactions and hysteria.

        1. Nalini Haynes

          I want a ‘like’ button. I have nothing to say, really, but HUGS. To both of you.

  10. Cheryl Holsonbake

    Hi Sarah.

    Great discussion! Love your post! I was struck also by Antonia’s comments. I have a son (now an adult) with severe Tourette Syndrome. And, like Antonia said, we often joke and laugh and make up things to lessen the pain. Now, we regularly used “hey do you have Tourette’s or something??” and our family slogan “Tourette’s – ain’t life a bitch, bitch, bitch!” to get through the exhausting and sad days.

    Luke, now 29, still struggles hourly with his disorder. He’s odd even among others with TS who usually have the most obvious tics subside during adolescence. He suffers physical pain (giving himself a hernia, grinding away the cartilage in his neck, and once even temporarily blinding himself by shaking his head back and forth so hard for so long) and emotional pain. He’s a soft-hearted guy who still carries deep, deep hurts from things malicious people have said to him in public (usually adults, if you can believe it, and teachers specifically!). Thank God for a loving church who accepted very loud screaming and coprolalia during worship – as our family did at home. (The little old ladies who knew him from childhood took it all in stride and would often quietly assure visitors that everything was fine. Imagine their surprise! 😉 The whole congregation loved him through adolescence when the world is tough enough and when not standing out is so important to most teens. They taught him compassion by treating him normally. Now, he is a champion of those who are different, the one who will root the underdog at every turn.

    But, usually, Luke isn’t considered normal. Our family isn’t normal. Now my oldest son’s little boy has a TS diagnosis too and he won’t be normal to others either. We are often saddened by this (specially Uncle Luke). But not about the diagnosis itself – it’s about the road we know he will have to walk and the people in the street who we know will stare and comment and insult. We, of course, see through the tics and just love him. But, always there is the worry about the outside world.

    And THAT is why your work encouraging authors to include those with disabilities in their books – not because of the disability but because they are people – is so important, Sarah. It makes differences okay, routine, and mundane even. Luke doesn’t want to be treated special, he just wants to live his life like everyone else. And having those examples in literature make is easier for the outside world to see through his differences. It also helps him see himself in characters that are just part of a story – not a “disabled” story – just a human story. In effect, normalizing the unusual. Authors, please write more of these stories! My grandson will need these stories! We all need these stories!

    Sarah, that is why your advocation is so precious. Thank you so much for what you do!

    1. BookwormBlues

      Cheryl,

      Wow. Thank you SO MUCH for your kind words. Seriously. You touched my heart.

  11. Rob

    I understand what you’re saying. To some people, others will never be what they think is perfect or fully human. Some people, like me, will never walk again. Should I see that there’s a point where I will not be able to do more than others say I can? Or should I see that I can do as much as I think I can? Parents and family can do a lot, but you are not in their heads. You see media where parents tell their kids they can do anything you want. ‘You can even be president some day.’ Like I said before, it is easy to become what others say you are. Most kids will never be president. Some will be able to walk, read, and live on their own, but you will never see how independent and happy they can be if there’s nothing out there that gives them a reason to be who they are, regardless of what they are able to do. That’s why it is important to put disabilities in books. It’s important that people can be able to say, “Look, there’s a guy with one arm like me and look at what he did!”

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