But Sometimes, It Does Suck

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I’m nervous about writing this post. I’ve been very personal on the internet before, even about my disability, but I’ve always tried to present a narrative of positivity of sorts. Sure, I’ve talked about ableism and other unpleasantness, but in regards to me and my abilities and my experiences, I’ve tried to veer on the side of happiness and empowerment. Presenting anything else is hard for me, because there are so many ways for my words to misread or misinterpreted or misunderstood. It calls to mind a line from the song “Breathe (2AM)” by Anna Nalick:

And I feel like I’m naked in front of the crowd / ‘Cause these words are my diary, screaming out loud / And I know that you’ll use them however you want to.

But the goal of this website is to be a resource for writers and readers, to educate people on the realities of disability, to help people create and identify well-written disabled characters. And because of that, I know I need to be fully honest.

I don’t speak for everyone and would never try, so I want to start by saying that this is my experience and my reality and my observation, not everyone’s. So, I’m going to talk specifically about blindness here. With that said …

When I read about blind characters or see them on TV or in movies, they always go too far in either one direction or the other. The characters are either completely ruled by their disability—physically and emotionally—constantly breaking down about the struggles they face, fearing the outside world, struggling to adapt, etc. Or, they don’t seem fazed at all. In fact, you might never know they were blind because they are independent and fearless and nothing—NOTHING—holds them back.

One might assume that I’m okay with the latter portrayal, but the truth is, I hate both, because neither is honest.

If you’ve read much of this blog, you’ll know why the first option—the character completely ruled by their disability—is a bad portrayal. Presenting disabled characters as weak or fragile is problematic and unrealistic when the vast majority of us live full, happy lives. But the second option, the disabled person who isn’t even fazed, that’s not honest either. In fact, those representations almost fit into the superhero trope to me—they feel like overcompensation on the part of the writer, who doesn’t want to present a weak character, so instead they erase all signs of the character’s disability other than the bare bones – this case, there character can’t see, but that’s it. That’s the only sign of their disability.

The reality, at least for me, has always been somewhere in the middle.

Most days, I don’t think about the fact that I’m legally blind. I mean, I do—I have a guide dog, I use accessibility functions on my computer, etc.—but these things have become such a part of my life, that most of the time, I don’t think about why I’m using them. I don’t think about the fact that not everyone does. In fact, most of the time, when I hand my roommate my laptop to show her something, she has to remind me to zoom out because, well, she isn’t blind. I forget. Because this is just my life. This is normal.

Most days, I don’t really think about it.

But there are other days, too, when I can’t help thinking about it, and sometimes, it sucks.

When my friends talk about going to clubs or out dancing, I always have to bow out. I’d love go dancing with them or to go to a club like other 22-year-olds, but because of my vision, I don’t think I could enjoy it. Clubs are too dark for me to navigate, and too loud for me to use my hearing the way I’m used to. (Note: blind people don’t have “better” hearing, but we do use what hearing we have more efficiently.) If I went to a club, I’d have to leave my guide dog at home (too much stress for her), and I’d be stuck clinging to one of my friends. It wouldn’t be impossible, just not worth it.

Thinking about that sucks.

Before I got my guide dog, Corey, clinging was something I was very paranoid about. Even with a cane, sometimes I needed to hold onto someone’s arm for help. I was always worried I was getting annoying or being an inconvenience. I always thought about how much easier it would be on them—not me, but THEM—if I could see. With my best friends, this paranoia wasn’t a big factor. But with new people—especially with boys I might potentially have a crush on—it was a source of anxiety. And sometimes, when Corey can’t help, it still is.

Thinking about that sucks.

I was born legally blind. My condition is congenital, so I don’t know what it’s like to see well. I don’t have the same feeling of loss that some people who’ve lost their sight later in life do. But I’ve had to stop Googling the name of my condition, Leber’s Congenital Amaurosis. Why? Well, LCA, as it’s called, has many variants on many different genes, several of which (like mine) haven’t yet been discovered. A couple of those variants, though, have shown some success with gene therapy. Some people have had their vision improved. Most of the time—like 99% of the time—I don’t think or care about a cure, because I’m okay with my life as it is. But when I Google my own condition and all I see are pages of articles about breakthroughs and cures! And none of them apply to me. Whether I care about a cure or not, that gets to me.

Thinking about that sucks.

Most days, I don’t think about my disability at all. But every now and then, I do.

Some people might misread this post. They might want to post comments like “Stay strong!” or “You’re so brave!”  If you’ve read much of this blog or any of my other posts, you know that’s the last thing I want. I’m not strong or brave or inspiring—I’m a person living my life the way that’s normal to me. All I’m saying is that there are emotional implications that come along with disability, and while portraying a character whose life is controlled by their disability is problematic, portraying a character who faces no emotional implications of their disability is problematic, too.

So, when writing a disabled character, think about this. You can still have an independent, capable character while acknowledging the emotional implications of that disability as well.

I’m scared to post this. I’m scared of how it’ll be read. I’m scared that the negative feeling I’ve talked about will get more focus than all of the postive things I’ve talked about in the past. I’m scared that you’ll see these things as weaknesses.

But you all deserve my honesty, and hopefully it’ll help someone who is writing a blind character to think about those other, deeper elements. That’s my goal – not to elicit sympathy or consolation. I don’t need that. I like my life, I’m happy with it, and these occasional, sucky times don’t change that at all.



About Author

Kody Keplinger

Kody Keplinger is the author of several books for teens: The DUFF (Designated Ugly Fat Friend), Shut Out, A Midsummer's Nightmare, Lying Out Loud, and the upcoming Run, as well as a middle grade novel, The Swift Boys & Me,. Currently, Kody lives in New York City with her guide dog, a very upbeat German Shepherd named Corey. When she isn't writing, Kody teaches writing workshops and spends a lot of time eating Thai food and marathoning Joss Whedon's TV shows.

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8 Comments

  1. Kody, this is a great post. Thanks for being honest and giving me an understanding of your day-to-day experience with blindness – very informative! I hope this window will me better write disabled characters when the opportunity arises. Thanks again!

  2. Amen! I love the honesty and want more of it! Here, here! I am sick of the two extremes of portraying disability that Kody mentions. Let’s try something new and create some REAL characters with disabilities.

  3. Thanks for your honesty. I raised my own 4 kids, used to do daycare, be a school lunch mom for elementary kids, and I’ve been subbing for11 years for high school kids. I listen to kids all of the time. Some of the “abled” kids have it harder fitting in than some with disabilities. It depends on your family support network, which either supplied you with inner strength and confidence, or it didn’t. I don’t remember being asked before i was born, if I did or didn’t want a disability anymore than I was asked about skin color, gender or weight. We get what the “dice toss” gives us, and the measure of our lives is how we play the cards we’re dealt…to mix a few metaphors. My oldest son was diagnosed with type 1 Diabetes when he was very young. I would take it myself if I could, to free him up to live a “normal” life without shots or constant finger pricks. But he perseveres, and does his best to take care of himself, knowing his family loves him .

    I wrote a blind hero in one of my romances, and he discusses his blindness dispassionately for the most part, dealing with it in a mature way. He is hampered as you are, by the inability to do certain things, like he can’t drive after the heroine, but has to take a taxi. And when she takes him out on a speedboat, then promises to take him on a Harley, he’s thrilled because these are things he’d never been able to do before. She’s a vain woman who’s always depended on her looks to give her power over men, but his blindness insulates him, so he becomes a challenge to her.
    Along the way she realizes she’s fallen in love because for the first time she had to take her time to get to know a man, since her looks don’t impress him. I’ve been told I created realistic characters. I’d like to think so.

  4. Kody, thank you. This isn’t the first piece of yours on disability that has resonated for me, but I loved this one. I’m hard of hearing rather than blind, but otherwise you could be describing me. There really are things that suck about it! Even though it doesn’t define my life and a good proportion of the time I just go about my day without really thinking about the fact that I have to make sure I get the DVD with subtitles, or that I sit near the front of the room for a lecture, or that I always have a spare hearing aid battery, or that having a conversation in background noise ain’t gonna happen. Anyway–thank you for sharing how it is for you, and for making such thoughtful posts that I can point others to. (And one of these days, I’ll try using this advice on a story protagonist!)

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  6. Great post, Kody! I don’t have a disability, but I’ve been living with an improperly treated autoimmune problem with my thyroid and undiagnosed adrenal fatigue for over a decade (getting better now, though, slowly), and so I can relate to not being able to do things other people can and missing out on things. (Er, I actually missed out on your signing when you came to Seattle a couple years ago because I fell asleep. -__-) I know what you mean about being afraid to post negative things online, but this post seemed very positive to me! Life is so much more complicated than just being totally unfazed by problems or being completely overwhelmed by them.

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  8. Cody, I agree entirely. I am totally blind since birth, the esult of a life-threatening and extremely rare medical condition. The fact that I’m here to write this is a joyous blessing! So, for the most part, my blindness really doesn’t consume my life, and I’d really rather discuss five million other topics besides Braille, JAWS, and the ins and outs of owning a guide-dog–not that said dog hasn’t been a treasure, but sometimes I’d rather simply be. Case in point: I’d love to attend church without having three-fourths of the congregation ooh and ahh over my Braille Bible because, truly, Braille is so very much like classic Times New Roman–nothing extraordinary about it. So, yes, I’ve adjusted quite well… I’m not sorry for myself, and my blindness is a molecule of salt in the ocean of my life. On the other hand–yes, sometimes life is frustrating. I’ve recently begun a number of volunteer activities that involve a good deal of interpersonal interaction, and it can be challenging when I can’t gage people’s attitudes based on their facial expression. Then, too, it can be frustrating to try to become oriented to new surroundings, especially if they happen to be too loud or open–what you said about loud establishments really resonated with me! So, yes, create a character, I say… Create a joyful, happy character who happens to be blind–but make said character intrinsically whatever he or she is–determined, enthusiastic, etc.–without glossing over the very real challenges that visual impairment can pose.

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