Kody Keplinger: Writing Beyond Blindness

1

Kody Keplinger was born and raised in small town western Kentucky, where she began her writing career after penning the New York Times and USA Today bestseller, “The DUFF,” at age seventeen. “The DUFF,” now a major motion picture, was chosen as an YALSA Top Ten Quick Pick for Reluctant Young Readers and a Romantic Times Top Pick. Kody has since written other books for both young adult and middle-grade readers. When she isn’t writing, Kody is posting about fashion and body positivity on her Instagram, chatting about her favorite TV shows on Twitter, or making videos for her YouTube account. Kody is also the co-founder of Disability in KidLit and a teacher at the Gotham Writers Workshops in NYC.

You’ve recently gotten into video gaming, which might surprise some people given your condition.

You adapt to everything. For different games like the “Dragon Age” series, I’ve found ways around different issues. I probably spend twice as much time playing a game than most people. That said, it’s still fun for me.

What is your condition called?

Leber’s Congenital Amaurosis. Most people just call it LCA.

Since you were born with this condition, when did you realize that other people could see and you couldn’t?

I don’t remember. They diagnosed me with something being wrong with my eyes when I was four months old, because they were shaking. I never learned I was blind. I just remembered always knowing. I think they diagnosed me as legally blind when I was two or three, because they could ask me questions and I could actually answer.

I grew up with four siblings who were all sighted, so I guess I just always had an awareness that they could see things I couldn’t. Don’t get me wrong, there were times when things were incredibly difficult or frustrating, but there was never a moment of me having to understand, “I am different.”

I would imagine being born with blindness and losing your sight later on in life are two very different experiences.

Completely, because you lose something. It’s something you can overcome and I’ve met many people who’ve lost their sight. I do think it’s easier the younger you are because kids are shockingly resilient. You don’t really have your life in order yet, and there’s a lot of room to change things. If you lose your sight as an adult and you’re in a career that’s visual, that’s a little trickier.

Were your parents supportive?

I got very lucky. They were realistic. My parents really wanted me to be independent, particularly my mom, so I wasn’t coddled at all. There was no playing the blind card. She was always like, let’s find a way to make this possible for you. I was also mainstreamed. I went to public elementary, middle, and high school. Honestly, my schools were not particularly great with accessibility. My mom and I didn’t know the laws and what was required of them, so I had to adapt to a regular school without the help of required services. There was no question that I was going to leave my small town, go to college, and get a job. There was never a moment in my life when I thought these things weren’t possible, because I had a parent like her.

My dad’s side was a little more concerned. I only remember one period in my life when someone in my family told me I couldn’t do something because I was blind. and it was around when I was leaving for college. It was extremely startling to me. The one exception was my grandfather. He was driving me to a family gathering one day and said, “I know you’re going off to New York and everyone is worried about you.” I was like, here we go. Then he said, “I’m not though. I’m worried for you the same way I would be worried for any of your siblings. That said, you’re a Keplinger, and if there’s one thing I know about our family, it’s that you’re going to do better just to spite them.”

He was right. It meant a lot to me to hear him say that. I went off to college and I was fine, and everybody apologized. Kind of.

Did you read a lot as a kid?

To a point. My mom read to me when I was very little, but I hated reading from the second grade through fourth grade. The school gave me large-print books but I thought they were so boring. Long story short, because I was failing reading, everyone assumed I was on a lower reading level and gave me large-print books on a lower reading level. I was actually reading at a 7th or 8th grade level, so of course I was bored. So my mom started reading the Harry Potter books to me. I was so engrossed that I would actually use a magnifier, which is the slowest slog. It’s exhausting and it takes forever.

What would’ve been some options for you at the time? Audiobook? Braille?

Audiobook wasn’t really an option at the time because they were so expensive and we were poor. I didn’t know braille and didn’t have a teacher, so that wasn’t a choice either. Large-print was still doable for me, though now I find it too tiring. Not a ton of books are made in large-print.

At school, I had a CCTV, which is a machine that projects books onto a monitor. That’s probably the best way to read. But at home, I only had a hand-held magnifier. It took me four to five minutes to read a page, but I would do it. Between my mom reading to me and reading on my own, my reading grade completely changed. I discovered I loved reading.

I still have a CCTV at home that I’ll use to read mail, by the way. But nowadays, I mostly do things on text-to-speech or audio.

When did you start writing?

Even when I hated reading, I was still writing. The first time I enjoyed writing, I was in the second grade and wrote a story about a girl starting her first day at school.

Your debut novel called “The DUFF” became a huge hit.

It didn’t do badly when it came out in 2010, but it wasn’t a huge hit until 2015 when the movie came out. Four years after the book had come out, it hit the best-seller’s list.

What was it like making business and career decisions at such a young age?

Remember when I said I was super ambitious?

So you loved it.

I was so into it. My mentality in life is you never know until you try. I wrote a book before “The Duff.” It was bad, but I finished it. Prior to that, I would start a million things, get another great idea, and move on. I started “The Duff” for fun. We were poor, so I had a computer but no Internet and no cable. Unless “Gossip Girls” or “Grey’s Anatomy” was on, I didn’t have much to do. Writing was how I had fun.

What does the DUFF stand for?

The designated ugly fat friend. I didn’t make that word up. I did some research and it looked like it popped up around 2002 on a reality TV show, because of course it did. I heard it used at my high school and that’s why I wrote the book. I was convinced that I was the Duff of my group of friends.

What is it about the young adult genre that’s attractive to you? I think it’s very underrated.

I can’t entirely explain that. I’ve been writing about teenagers before I was a teenager. That experience is so universal but also varied. Everything feels big when you’re a teenager, because it is to you. That brings a lot of intensity to the stories. Also, I am an adult and adults are boring. Nowadays, my drama is paying taxes. As a teenager, it’s all about the relationships in your life.

As someone who’s had success with her early work, is there a burden of measuring up to it?

Completely. I wrote “The Duff” when I was 17. I think I’m a better writer now and have come a long way. But “The Duff” is still the book people most recognize and love. On the one hand, that’s great, but there’s also this frustrating feeling of, will people ever recognize that I’ve improved?

You just have to keep going. Switching directions has helped in a lot of ways. I wrote a middle-grade book so I get a lot of E-mails from younger kids about it. I’m really liking the stuff I write now, and I have to recognize that for some people, “The Duff” will always be their favorite book. For others, the book I write in 10 years will be their favorite. Some people will hate everything I ever do, and that’s fine. You can’t write the book that’s going to be everybody’s favorite.

Who are some of your favorite authors?

J.K. Rowling is definitely on the list. Judy Blume is a life changer for me because she writes so honestly.

What’s the biggest misconception people have about those who are visually impaired?

People assumes it limits you more than it actually does. I am asked a lot, “How can you write if you are blind?” I always respond with, “If you like pizza, why do you hate the color purple?” One thing does not directly impact the other, in part because of technology. I always found a way because I just didn’t think about it being much of a thing.

Have you met another blind individual who is less optimistic?

Yes, but not writers. I’ve never met anyone who has said, “I would love to be a writer but I have ‘x’ disability.” I even know people who cannot physically type and they dictate. I have met people who say they can’t do other things in life. There are some things I cannot do. I hate when people coddle those with disabilities and say, “You can do anything.” I can’t be a truck driver. I definitely should not be your brain surgeon. It’s important to acknowledge that, but writing isn’t one of them. It shouldn’t limit anyone.

Because it’s not purely mechanical.

It’s really not. I know people who are blind and use screen-readers. I know people who are blind and deaf and use braille notes.

What do you wish people would be more cognizant of about those living with visual impairment?

There are two models called the Medical Model of Disability and the Social Model of Disability. I generally lean towards the Social Model, which essentially means, what inhibits my ability is not so much physical as social. Here’s the best way I can put it. Me being blind is not the problem. The problem is that the world is built for people who can see. If the entire world was blind, it wouldn’t be a bid deal because everything would be built to serve blind people. If you were sighted in a world built for blind people, you would have the disability.

Most of the things that cause my issues tend towards an accessibility or inclusion perspective. Some things are just not built for blind people. It is incredibly frustrating to live in a world that’s not made for you, and most people don’t even think about the fact that you exist. Look, I’m guilty of this too, especially with walking. I completely take for granted that I can walk places. I don’t think this in a pitying way because I don’t think it’s productive. It’s more that people don’t like to think outside of their own experiences. I have to remind people that I exist in my condition.

As an example, if I were to go to a conference, I can’t read the signs. I have to make sure someone can escort me from room to room because everything is in text. Going to the movies is another example. Theaters are super dark and finding my seat and not sitting on someone is a problem.

Oh my God, you’re right…

There’s no deeper anxiety for a blind person riding the school bus than the fear of sitting on someone by accident. Yes, I have done it. It’s not world-ending, but it’s a thing and it exists. Basically, I live in a world where I have to constantly remind people that I don’t do the things you can do and my experience is not the same as yours. Make room for me.

What are some things you do for self-care that are important to you?

My service dog Corey definitely helps. It’s hard to get frustrated with life when you have the cutest, happiest German Shepherd with you 24/7. There are things I feel safer doing now.

Did you use a cane before getting her?

Yeah. I still use my cane sometimes. Last New Year’s Eve, I went out with my friend to a bar, who is also blind. We left the dogs at home because it would’ve been too crowded and they’ve wouldn’t have been that helpful. It’s important to keep those skills up even when you have a dog, because sometimes you have to alternate.

Backtracking to self-care, having other friends that are disabled is a huge thing to me. It’s not something I had a lot of until I came to New York. Frankly, sometimes it’s good to have another blind person to bitch about things that are frustrating. I met one of my closest friends online when I was getting my guide dog. That friendship has meant a lot.

We actually traveled through Europe together last summer. [There were] no sighted people, and it was awesome. That was a great self-care experience for two reasons. One, traveling was great. I finally got to live a dream I’ve always had. Also, it was just two blind people. We both had dogs and it was obvious we were blind, but there was never any shame about, I can’t do this. We were able to tailor the experience to things we would enjoy and could do, and not feel we were a burden to anyone.

What are some public issues about disability where you would like to see improvement?

I’m very political, but I’m not a policy expert. I wish guide dog stuff was handled better. The law already provides for this, but people don’t enforce it enough. As far as discrimination, that’s probably the biggest issue I face on a daily basis. Underemployment with people with disabilities is a big issue, but it’s a bit complicated. Companies should have to provide accessibility resources for those with disabilities, but when it comes to small businesses, they can’t afford it.

Traveling showed me ways the U.S. is great about certain things, but it also showed me ways we could improve culturally. It’s more than just [about] laws; I think it’s a societal shift.

As a country, I don’t think the U.S. is great at dealing with guilt.

And that is also startling when you go to Germany, because it’s the opposite. Their biggest memorial to the Holocaust is literally called A Memorial for the Murdered Jews of Europe. They have a memorial for the Romani. They have one for the homosexuals that were killed. And now, they have one for the disabled. If you speak German, it is accessible. Not only do they have it in text and braille, they have a video screen where a guide speaks while signing it. It is made as accessible as possible for German-speaking people. I expect things to be made for non-disabled people, so when something is made to include us, I’m always super shocked.

If you saw someone else struggling with disabilities or their creative expression, what would you tell them?

The first thing is practical. Writing is not necessarily sustainable for everyone. It’s not always sustainable for me. It’s important to know what your limits are, and to have a plan. It’s frustrating at times, but as ambitious as I am, practicality needs to go along with it. This is particularly true if you’re disabled, because you need to know your limitations as far as other jobs too.

The other thing is to have a good community. I mean that for your disabled community and your able-bodied community. Being part of both is really important. Find communities where they don’t treat you as a burden, or ones safe enough where you can say, “You’re making me feel bad.”

I have found some disabled communities to be toxic. To be filled with self-pity or hate, for example. It’s important to find a community that best suits you. All the disabled communities I find myself in have a really interesting intersection between disability and queerness. I fell into them before I even identified as queer myself.

I wonder if there’s some data on this correlation.

It’s fascinating to me.

Perhaps if disabled people already live outside of societal norms, you’re just more comfortable with being atypical.

In some older disabled communities, you’ll find those who are more conservative. I’m finding that younger disabled people are not. Anyway, I think operating in both disabled and non-disabled communities will make you happier, and also make you a better writer. The thing is, I’m glad I had the struggle and was mainstreamed. It’s important to be aware of how people outside of your community see the world. That’s probably true for any minority group.

You don’t have to read every book about disabled people, and you probably shouldn’t. Most of them are written by able-bodied people. Unless a book comes highly recommended by disabled people, I don’t read books about blind people written by sighted people. It’s caused me too much anxiety and depression and I don’t want to do that to myself. There’s always that argument of, do you want to be not represented or represented badly? I would rather be not represented than represented badly. I’ve been cursed on the street because I didn’t look blind to them. Thank you television.

Also, figure out whether you want to write about disabled people. You don’t have to. I feel like writers from any minority group feel this pressure to represent their communities. But here’s a thing: do you. If you’re an Asian kid who wants to write about white kids, do it. If you’re a disabled kid who wants to write about able-bodied kids, do it. I did. I’m writing about disabled people now and I’m thrilled to do so, but you don’t have to do anything.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s