Kody Keplinger: But Sometimes, It Does Suck

Kody Keplinger is the author of three books for teens: The DUFF (Designated Ugly Fat Friend), Shut Out, and A Midsummer’s Nightmare. Her first middle grade novel will be released by Scholastic next year. Currently, Kody lives in New York City with her guide dog, a very upbeat German Shepherd named Corey. When she isn’t writing, Kody spends a lot of time eating Thai food, marathoning Joss Whedon’s TV shows, and vlogging. You can find her on Twitter, YouTube, and her website.

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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.