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 studying improv at the Upright Citizens Brigade. You can find her on Twitter as well as her her website.
I was born blind.
Now, that comes with a slight clarification. Blindness is very rarely total darkness. Wikipedia explains it pretty well:
In North America and most of Europe, legal blindness is defined as visual acuity (vision) of 20/200 (6/60) or less in the better eye with best correction possible. This means that a legally blind individual would have to stand 20 feet (6.1 m) from an object to see it—with corrective lenses—with the same degree of clarity as a normally sighted person could from 200 feet (61 m). In many areas, people with average acuity who nonetheless have a visual field of less than 20 degrees (the norm being 180 degrees) are also classified as being legally blind. Approximately ten percent of those deemed legally blind, by any measure, have no vision. The rest have some vision, from light perception alone to relatively good acuity.
I fall into the 90%. I have a condition called Leber’s Congenital Amaurosis, or LCA for short. LCA is pretty rare, and it’s different for everyone who has it. In my case, I have a visual acuity of 20/400, my depth perception is pretty bad, and I have tunnel vision. Most importantly, though, I have light perception issues – so while my remaining vision is usable in well lit spaces, I can’t see much of anything in dim or low lighting.
But I’m not here to give a lesson on LCA. I want to talk about what it was really like being a blind adolescent. As I said, I was born blind, so I got to go through all of middle school and high school with this disability. Unfortunately, I’ve yet to read a book or see a show that depicts anything remotely like what I experienced. So, this is my story.
I was mainstreamed – which basically means I wasn’t sent to a special school. I went to a public (though small) middle school and high school. I knew everyone in my grade and most people in every other grade. I’d gone to elementary school with most of them. So everyone knew I was blind, and for most people, it was old news.
I couldn’t see the whiteboard or read from normal sized textbooks. In middle school, this could sometimes be embarrassing. Most of the time, I read from large-print text books. These books were broken into volumes – usually three or four – and they had the same covers as the regular book, but they were HUGE. Like twice as tall and wide as the regular book. And all the page numbers were the same. They didn’t fit in my locker, so I had to have them stored in a teacher’s class room. And getting them home was a pain in the ass, as you can imagine. Everyone was sort of fascinated by them, though I’d used them for years at that point, so it wasn’t that big of a deal.
I hated using those books. Mostly because visually reading them got really tiring after a while. I much preferred to use my Aladin, a type of CCTV. Basically, it was a large monitor above a camera. I would put things under the camera and see them, much larger, on the monitor. The best part of this was that I could adjust the colors. I can see white text on a black background MUCH better than black text on a white background. To this day, I struggle to use a computer or a CCTV without that contrast change. Back then, my Aladin was on a cart that I wheeled from class to class. The Aladin was the only real cause of any bullying.
There were a few kids who liked to torment me by jumping in front of the cart while I wheeled it around. One boy jumped in front of it once, I hit him (because, duh, I’m blind) and he went on and on telling anyone who would listen that I had hit him on purpose. No one believed him, but his friends jumped in and began tormenting me, too. It only went on for a day or two, but it did make me really upset at the time. Other than that, my vision was never a big deal among me or my peers.
In high school, I used my CCTV, but I didn’t wheel it around as much. I used a lot of enlarged papers – I had to run them to the office and a secretary would use the copy machine to enlarge them onto bigger sheets for me. I kept my CCTV in the library and would move it if I really needed to, but a lot of times, if we were just reading, my teachers would let me go to the library to use the machine so I didn’t have to push it around. I also used large print calculators, screen magnification on computers, and a few other pieces of assistive tech. I did not, however, read any Braille.
I also didn’t use a cane, but I’ll get to that in a minute.
I want to note that, throughout all of this, we struggled – my mom and me. We struggled to get the school to get me the tech I needed. We pushed and pushed. We didn’t know all of our rights at the time. Eventually, the school brought in a consultant who helped to tell them what I needed. She also told me about a program called “Short Course” at the Kentucky School for the Blind. I’d heard of this at a summer camp with other blind kids, but I wasn’t sure how helpful it would be. I decided to do it, though. And that’s where I learned how to use a cane – where I learned I needed a cane at all – and saw all the technology that was out there for visually impaired and blind people.
I won’t talk too much about the School for the Blind. That’s a post for another time, full of lots of drama and teen angst. I had positive and negative experiences there. But the important thing I got from that experience was that I was a) in need of mobility training and b) very, very glad to be mainstreamed.
Why was I glad to be mainstreamed? Honestly, I think it helped me to be a more capable, independent person. I had to work harder in a mainstream setting. I had to fight for what I needed. That was good preparation for the real world, which isn’t set up for a blind person. I have to fight for what I need every day. Whereas, at a specialized school, the material was ready for me, ready to help. While that’s nice in theory, it gives no real practice for reality. So even though it was sometimes tougher, I’m glad I was mainstreamed. I think it was best for me, though it might not be for everyone.
My senior year, the school finally got me a mobility teacher, who helped me to get even better at using a cane. I’d started using one at the School for the Blind, my sophomore year, and it had been so freeing. I was a more confident traveler with a cane, not worrying constantly about running into things. It was great – and my friends loved to use my cane as their make-shift Lightsaber (I was friends with nerds). I liked the cane mostly. The only thing I hated was that it made it much more obvious to everyone that I was blind. Frankly, I had liked “passing.” People who knew me knew, people who just met me didn’t. I’ll be honest – there’s a huge difference in how people treat “Kody” as opposed to “the blind girl.” I had a rule in high school, even, that I never told anyone new that I was blind until we were already friends. By that point, they knew I was an independent person. Where as people who already knew before really knowing me were always, even months later, focusing on my disability and not on me.
Other than my mobility lessons and assistive tech (I also started using audiobooks and text-to-speech books during my late high school years) my disability didn’t play a big role in my life. Most people didn’t talk about it. I didn’t talk about it. It didn’t really matter.
I was a fan of anime when I was in high school. A few friends and I even formed an anime club. We got together on the weekends to watch anime together and just have fun. This went well at first. But as anyone who is into anime knows, a lot of hardcore fans prefer to watch with the original Japanese dub while reading subtitles. That’s not something I have the ability to do. I read too slowly and the experience is miserable, so I prefer an English dub. This was a constant fight with my friends, who many times refused to watch English versions of the shows we were watching because it “wasn’t as good.” This completely excluded me, and for the first time in many years, I felt really, truly disabled.
I cried about that more than once. And, in the end, I lost many of my friends from that club. Not just because of that event, but because it was hard for me to see them the same way after those fights.
That’s the thing about disability, I think. You’re a normal person, you experience normal things, and then, every once in a while, you hit that wall. That reminder that you aren’t quite like the majority of your peers. Most of the time it’s small things – like watching anime with your friends – but it can still hurt like hell. It did for me. Even if 99% my vision didn’t affect me, that other 1% was awful.
But I still had the normal high school experience. I went out with my friends, I was in clubs, I worked on my senior yearbook – I was like everyone else. I just didn’t see things the way my friends did. Sometimes that sucked. Sometimes it just gave me a different perspective. But it never defined who I was as a person.
Before I wrap up here, I want to note that none of the typical “blind person” cliches fit me. I am not a musician, I don’t feel people’s face (eww, so weird!), and my blindness really played a very small part in my life. It occasionally impacted my friendships, it sometimes changed the way I did things in class, but for the most part, I was your average middle or high schooler. Your average middle or high schooler who just happened to use a cane and push around a cart with a big CCTV on it.
So that was my experience as a blind adolescent. Not that exciting, really, but I hope some of you will find it useful. Not everyone’s experience as a blind teenager is like mine – just as not everyone’s experience being a teenager is like mine. Everyone’s is different. Every story is different. This is just mine. But, sadly, most blind characters in fiction have very similar stories, there isn’t room for the different variations. Which is why I wanted to share mine. Just so some of you who might choose to write a blind character in the future know an alternative version of the common story.
And now, I’ll stop rambling.