Caitlin Mongillo: Fitting in and Standing Out

Caitlin MongilloCaitlin Mongillo received her B.A. in English and Secondary Education in May, 2010. In 2013, she completed her MSW from Stony Brook University. Caitlin recently relocated from Long Island, NY, to her new home in Southwestern Connecticut. Currently, Caitlin is the coordinator of an employment center, which helps people with disabilities find, and sustain, work. She also works part time as the social media manager and newsletter writer for a non profit organization which helps people with print disabilities. In her free time, Caitlin enjoys volunteering, reading, watching movies, hanging out with her family, being snarky and drinking copious amounts of green tea. She shares her home with her fabulous husband, a mischievous beagle mix named Sam, and her lovable yellow lab guide dog, Laser.

I can feel their eyes on me. They’re all staring, judging. My blue striped tee is too big and my jean shorts are too long. They don’t like that I don’t wear make up and they think my ponytail is childish. I don’t know how I let myself leave the house this morning; after all, it’s my first day of high school. First impressions are so important, and I’m failing, miserably.

My bus got in late, and I could not find the class, so now I’m late to homeroom. I like to get to class early so I can find the closest seat to the door. But, as I reach my hands out, I feel back after back after back. I do not encounter an empty chair beneath my groping fingers, only cotton and the slick sensation of sweating skin. I am panicked, and desperately want to cry. Finally, the home room teacher interrupts his monologue about locker combinations long enough to tell me there’s a seat in the front I can take. I extend my white cane in front of me and navigate the labyrinth of outstretched feet and backpack straps. The room falls silent as everyone, including the teacher, stares at me.

I traverse a row, and get to the front desk. I place my hand on the desk and feel a pad of paper. I move to my right and graze a Styrofoam coffee cup with my middle finger. Nobody helps me, and I feel tears pricking at my eye lids. All I want to do is sit down. I catch my foot in a desk leg and almost fall. This finally spurs the homeroom teacher into action, and he taps a desk a few rows over from where I stand.


Though the incident occurred eleven years ago, it has remained a vivid memory. If it had happened now, I would have handled things differently. But I was not the person then that I am today.

When I walked through the halls of my high school, I tried to keep my cane as close to my body as I could. Though the way a cane is useful to a person who is blind is by tapping it, in an arc, in front of the body, I never did this. Though my school teemed with students (my graduating class was just over seven hundred and fifty), this was not the real reason for my reluctance to follow proper mobility protocol. I didn’t want to be seen, and I did not want to be heard tapping my way merrily to math class.

Almost on a weekly basis in school, I’d hear the whispered or shouted name I dreaded: Blind girl. Everyone else, it felt like, got the luxury of being talked about behind their back. I was never afforded such courtesies. I was always on display, always a subject of conversation, as students frantically dodged around my long cane or scurried away from the swing of my massive backpack, crammed to bursting with heavy Braille books. “Blind girl” became my name from all those kids who didn’t sit beside me in class. “Blind girl” also became like my shadow, following me where ever I went. I didn’t like this “blind girl” and I did not want to be her.

I resented the title. I had a slight bit of vision I could use to detect colors and land marks. When I explained it to people, I would always, adamantly, title myself “visually impaired”. I didn’t have anywhere near enough sight to be considered a person with normal vision, but I also staunchly denied just how little I could see. I refused to accept “blind” as a term, mostly because of how often I heard it in a derisive manner as I walked the halls. I was clustered in with the boy in the rainbow kilt or the girl with the line of metal rings in her lip; just another freak, who’s only distinguishing feature was what was so clearly “wrong” with them.

I have learned that, overall, I was quite lucky in my high school career. Some of my blind peers were mercilessly bullied in school; getting pushed down stairs, having their homework ripped up, and enduring physical assaults. This never happened to me. A few times, if I accidentally hit a passerby with my cane in the hall, I would hear them tell their friends loudly that they wished they could hit me with my own “stick”. Another time, a friend told me he’d seen a group of boys pretend to pull my hair as I walked down the stairs in front of them. But, mainly, it was the constant scrutiny I felt like I was under which drove me crazy. I was visible as I stumbled about. The fact that I carried with me a four foot long pole was not lost on anyone. In class, I was able to fold up my cane and stow it on the ground. The clanging of my ten pound Braille machine in math class or the soft clatter of my note takers keys was forgotten by my classmates after a while; it was just what I did. The people in my classes got used to my blindness, mostly because it became secondary to my personality.

I was one of those obnoxious people who always raised her hand in class. Most of the time, I knew the answers to the questions being asked. I volunteered to read aloud in English and I relished the opportunity for extra credit debate performances in History. If there was a classroom activity taking place, I was involved. I tried to excel academically, because I felt like it would make my blindness fade more into the background. I wanted, more than anything, for people to equate my name with friendliness, creativity, and intelligence, rather than first thinking of my ocular ineptitude. So, in the classroom, I tried to stand out, while in the jungles of passing periods I tried like hell to blend in.

The classroom was my safe haven. It was where I could shine and show everyone, especially myself, that there was more to me than strangers expected. The only times I felt conspicuous were when the elephant called Blindness stomped his way into the room. I wish I could have known, in advance, the days we’d discuss Helen Keller and her struggles in History so I could figure out how to fake the flu. It also may have made my life easier to be absent for the entire Oedipus Rex unit in ninth grade and the many discussions we had about the blindness motif so commonly used in literature. The day my Honors English teacher asked me if I felt like I had more “vision” because I had no sight was the only day I think I have wondered if humiliation was a reasonable excuse for jumping out a window.

The fact of the matter is that I was not able to understand how people could not look at me and think that my blindness made me a freak. Because I couldn’t quite accept the fact that it didn’t. In the halls at school, people doubtless stopped and stared. I know for a fact they even commented on the fact I couldn’t see. But, looking back, I was really just a self-obsessed teenager in a sea of many other self-obsessed teenagers. Most of them probably noticed my shiny metal Braille machine or my fluorescent red-tipped cane, but these things really didn’t impact their lives. They may have been curious or uncertain how to approach me, but probably very few of them thought much more about me and my little life. Me being blind was much more of an issue to me than it ever was to any of them.


My guide dog and I glide down the hallway. As we pass by my colleague’s cubicles, they call out soft greetings to us. I respond to them, and concentrate on the route we’re taking. The staccato rhythm of his toenails on the linoleum accompanied by the chorus of his collar tags jingling is the perfect soundtrack to my contemplations of distance traveled and steps remaining in our journey. I direct my dog right at the reception desk, left at the end of the hall, and then straight into the conference room. As I open the door, I feel relieved that we have made it on time.

I can feel them staring. I know their eyes are taking me in. They might be admiring my charcoal blazer or the new black dress that skims my knees. They might see the shadow of coral lining my lips, or covet the sleek Mac beneath my arm. They might even notice how my eyes don’t really focus on anything in particular. My husband told me before I left for work that I looked beautiful, and I believe him.

“Excuse me,” I say. “Could anyone direct me to an empty seat?” From across the room, a woman calls to me. My guide dog skirts the table and brings me to the chair. The woman and I chat softly together about work, the weather, the difficulty she encountered finding the office building.

“I’m just wondering,” she says. “I know some people prefer to be called sight challenged or visually impaired. What do you like?”

“Blind is fine. It’s the most accurate description of my sight,” I say with a small smile. “But mostly I just like to be called Caitlin.”

Corinne Duyvis: Autism, ADD, and Depression, a.k.a. Bad School Experiences 101

Corinne DuyvisCorinne Duyvis is a lifelong Amsterdammer and former portrait artist now in the business of writing about superpowered teenagers.  In her free time, Corinne studies Dutch Sign Language, finds creative ways of hurting people via brutal martial arts, and gets her geek on whenever possible. She also sleeps an inordinate amount. Find her on Twitter.

Her debut YA fantasy novel Otherbound (Amulet/Abrams, 2014) is about a boy who’s spent ten years involuntarily witnessing the life of a mute servant from another world every time he blinks–and what happens when they discover they can communicate.

I often see writers focusing on the social aspects of autism in high school, which I think is awesome and important. But for me, although I was a mess, socially speaking, the issue of schoolwork was far graver.

In this post, I’ll recount my high school experiences (in embarrassing detail) in the hopes it may shed a light on the kinds of problems autistic characters may be likely to encounter in school–both the practical issues and the emotional ones.

I entered high school at the age of eleven, one year earlier than usual, due to being picked on in grade school. I was instantly faced with two problems.

The first problem: one boy decided I made a great target. The rest of the class followed. I was consistently picked on throughout the entire first year. After that first year, a teacher cracked down on the class like a goddamn superhero, and I was no longer picked on. Still, I resigned myself to being a permanent outsider; I barely had friends, and though I would hang out with one or two people during school, I never met up with anyone outside of school hours. In retrospect, I was far too stuck in my other problems for my social skills to develop normally.

See, the second problem was that schoolwork had been a breeze all my life. Now, it no longer was. With upward of ten subjects–expanded to a mind-blowing nineteen later on–I had to learn to study for the first time ever. Notably, my best subjects were the ones that required memorization. Languages? Vocabulary was a snap. For grammar, it depended on how the rules were structured. Memorizing case inflections in Latin? Sure! Memorizing standard rules about sentence order? No problem. Anything more complex and nuanced than that? I crashed.

The same applied to maths: give me a few rules to memorize and I excelled. Enter nuance, and my frustration levels racketed. I’d stare at problems in my textbook and nothing made sense, which frustrated me to tears because I knew I should be able to do this–so why wasn’t it working?

History and geography were just as bad. I had to read long, complex narratives, when at the time I had no earthly idea of how to single out the most important aspects. I would read, and read, and read, and nothing would stick.

This was a big deal for a perfectionist like me. Homework took ten times as long as it ought to. I flailed my way through the first few years with the worst study habits possible: I procrastinated, got distracted, moaned and complained and agonized, never scheduled … Homework was basically my beating my head against a brick wall and wondering I was getting such a headache.

Eventually, even the thought of homework made me burst into tears. I didn’t want to get out of bed. I didn’t want to go to sleep at night knowing that I’d have school first thing in the morning. My bike rides to school were fuzzy with tears, and I had constant thoughts of flinging myself into this canal or in front of that truck. I had panic attacks. One of them was set off by a bad grade for a German test.

In short: I was hella depressed.

But I still got decent grades. I managed.

Up until I entered the fourth year, when a different homework system was introduced. This system promoted independence and discipline. Instead of teachers saying, “Memorize these words by Tuesday, study this maths problem by Wednesday, do all the assignments on pages 78-85 of your Chemistry textbook by Thursday,” we’d get assignments like, “Oh, make sure you’ve completed chapters one through fifteen by January.” We discussed certain topics during class and were left on our own outside of it.

I crashed and burned.

Before, the constant looming deadlines of homework had kept me agitated, frustrated, and without any sort of free time, but they also made sure I got at least some things done. Now, having distant, abstract deadlines, and each subject being nothing but nuance rather than rote memorization … Nothing got done.

My depression got worse. I’d skip class, sitting in the school library and staring at the computer screen in a film of tears, and then I’d have a panic attack because oh god I’m skipping class what am I doing this is not me this is not me. I couldn’t conceive of any sort of future outside of school school school for years to come, and after that, there’d be college college college. I wanted to curl in on myself and never wake up so I’d never, ever have to deal with homework or school or obligations or anything ever again.

A couple months into this new school system, we called it quits. The only classes I attended were English and Art. I spent the rest of the time working in the school cafeteria, since I still had to be on school grounds.

And for the first time in years, I had peace.

After being strung along by an incompetent doctor for a couple of years, we finally gave him the finger and went straight to a psychologist specializing in children’s mental health. We’d read a book about Asperger Syndrome, recognized a lot of symptoms, and explained our suspicions. They tested me. Not long afterward, I received an official diagnosis.

And I was so, so relieved.

It wasn’t my fault. I wasn’t dumb for not succeeding. I wasn’t a failure.

Everything crashed into place. My social skills, or lack thereof. My obsessive focus on certain hobbies, to the exclusion of all else. My dislike of eye contact. My picky eating. My repetitive movements.

And my study skills.

Autistic people, as it turned out, often struggled with vague, abstract deadlines. Autistic people thrived on clear instructions. Autistic people had a hard time moving from one activity to another. Autistic people couldn’t separate the wheat from the chaff when reading narratives.

If we’d known sooner, we could have avoided so many problems. Instead, what we had was a traumatized fourteen-year-old tentatively recovering from depression, a brand-new diagnosis, and a mother determined to find the right place for her daughter. We found one. I enrolled in art school at the age of fifteen. I had barely homework, I filled my days with something I loved, and I flourished.

At twenty-three, I was diagnosed with ADD. Another few pieces of the high school puzzle clicked into place. (Why was I distracted so easily during homework? Why did I zone out during explanations and classes? Why couldn’t I write more than a sentence in my notebook before feeling the urgent need to doodle in the sidelines?)

All in all, the story has a pretty happy ending. I’ve taught myself a lot of the skills I lacked, I’ve embraced my autism, and I’ll have a book on the shelves this June.

But despite that happy ending, over a decade after leaving high school, I still have recurring nightmares of going back. In the dreams, I’m not worried about facing the bullies. I’m not self-conscious about being unpopular, or not knowing how to act. Instead, I’m back in the classroom after all these years. I look at the blackboard or my textbooks, and I panic. I’m back. I don’t understand. I’m behind on everything. I’m never going to be able to catch up. I’m never going to understand.

I’m back, and I’m going to be a failure all over again.

And it’s so odd to see that something that left such lasting scars on me is rarely even mentioned.

Kayla Whaley: On Bullying

Kayla WhaleyKayla Whaley has a BA in political science and is currently finishing her Master’s in Public Administration with an emphasis in nonprofit management. She interns for both the Atlanta Young Writer’s Institute and Month9Books. Her bookshelves consist almost entirely of kidlit and she writes YA fantasy and contemporary.

Kayla was born with Spinal Muscular Atrophy III, a neuromuscular disease, and uses a power wheelchair.

I don’t remember the first time I was bullied, but I do remember the moment I finally realized that I had been bullied. It was a couple years ago. I had just presented my undergraduate thesis, the last big hurdle before graduation, and a group of us went out to celebrate after. I don’t know why I was telling this particular story, because I’m sure they’d all heard it before.

The story goes like this: All through high school, almost daily, I’d be driving down the hallway and someone would throw their friend against the lockers screaming, “I saved you! She would have KILLED you!” Different people every time, too. It was hilarious for them, and the way I always told it, with a bemused “Kids, eh?” attitude, made it hilarious for everyone I told.

That night, as I was telling it for the millionth time, something clicked. I stopped mid-story and said, “Oh my God. I was bullied.”

In retrospect, it was obvious that’s what that was. I thought back to how those incidents always made me feel: confused, embarrassed, ashamed. I’d duck my head, and drive faster down the hall. By that night in the restaurant, four years after high school, I’d forgotten how I always used to stare at the ground when I drove, hiding behind the binders and books I held against my chest.

I wondered how I could have missed it. I thought about how I have always dealt with what I now recognize as bullying with a nonchalant, play-along kind of humor. Because, like I said, it never FELT like bullying. It certainly didn’t feel good, but I didn’t have the language to understand what it actually was.

In one of the early episodes of Glee, there’s a scene where Artie, who uses a wheelchair, is stuffed into a porta-potty by a group of football players. While Glee obviously aired well after my formative years, this is the same portrayal of bullying I’d seen growing up time and time and time again. Bullies were violent; they beat you, pulled your hair, knocked your books down. Or they were verbally abusive, cussing you, calling you names. Bullying was something done TO YOU. It was obvious and hateful.

Nothing was being done to me, only around me. No one ever directly assaulted me (physically or verbally). And I hadn’t been given the tools to understand what was happening.

As soon as I had that realization in the restaurant that night, I also realized exactly how often I’d been bullied. In elementary school, in middle school, in high school, and even in college. It was always relatively subtle. Just subtle enough for me to ignore my feelings, and for me to think I needed to be in on the joke or else I was being too sensitive. No one ever said this to me, but I could see the relief on my friends’ faces every time I joked about those incidents. It made them so much more comfortable if I laughed about it, if I encouraged them to laugh about it, too. Because that meant it wasn’t a big deal.

I could give you a list of all the times someone has belittled me, insulted me, or dismissed me because of my disability. I could tell you about the times even my closest friends did it without realizing, because I didn’t even realize. I could tell you about all the guilt I felt after that night, thinking I was stupid for not seeing it sooner, blaming myself for not stopping it.

But this post isn’t about that. It’s about the fact that, as always, representation matters. Bullying as violence/verbal abuse should not be the only view of it we see, because it is not the only manifestation of it. Does it happen? Absolutely. Should we talk about the fact that it happens? Absolutely. But that should not be the end of the discussion.

If you’re writing a disabled character who deals with bullying, I’d encourage you to consider a more nuanced portrayal. The big, mean jock beating the kid in the chair is not the only story to tell. And frankly, bullying was not that big a deal for me. It happened, yes, and I can see now how it affected me, but at the time? I had scores of friends. I was near the top of my class. People liked me. And I had so many other, more important problems to deal with than the idiots in the hallway.

I guess what I’m saying is that it’s complicated. As most things are. Bullying may very well be a part of your character’s life, but it may not be the most important part.

Juana F.: Growing Up Deaf in the Public School System

Juana F.Somewhere in Southern California, Juana grew up in a home filled with books. In high school, her father would bring home “heavy” books about the political climate in Central America (he was a university professor). Her childhood was spent playing outdoors and reading in her bedroom, where she spent a large chunk of her time and where she felt most comfortable. A proofreader and copy editor by trade, Juana can annoy people with her incessant questions. She still dreams of following in the footsteps of the inimitable Studs Terkel.

Imagine being the only deaf member in your family. How do you find a way to communicate if no one knows sign language? In my case, I learned how to speak and lip read. From the time of my diagnosis, at age four, this was my way of adapting to the world at large, and especially at home. But life at home was much easier than being at school.

After being mainstreamed in fourth grade, I became isolated. I knew I wasn’t like the other kids so I tried my darndest to blend in. It wasn’t easy making friends, but I befriended Doug, who was really sweet and patient when communicating with me. When he smiled and laughed at me, I couldn’t see his eyes, and that made me laugh. When I broke my left wrist from playing on the rings (holy hell, that HURT LIKE FUCK), I got a kick out of striking Doug on the arm with my cast. I might not have really understood him but that didn’t seem to matter.

Doug’s kindness was important to me because I was bullied relentlessly by the other deaf students. Even though I was able to communicate with them, it wasn’t good enough. If you think they accepted me as one of their own, you’re wrong. In fact, they were even worse bullies than the hearing kids. One day, they’d pretend to be my friend and throw around my shoulders the warmth blanket of their friendship and the next day, they’d shun me, signing the word “hate,” all behind the teacher’s back so she never knew what was going on. It didn’t occur to me to talk to the teacher about it.

By junior high school, I became depressed. I so dreaded going to school that I would vomit every morning. It became so that my parents became concerned. Mama, being a kindergarten teacher, would sit with me in the morning and write down goals for the day, like “Today, I will make a new friend” written out on a large index card. But my depression continued, unabated. Because I feared the large crowds outside during lunchtime and didn’t feel safe being alone, I would eat lunch in the restroom (yes, gross) and then stay in the library until the bell rang.

I didn’t know it at the time but I suffered from communication fatigue. Ian Noon’s words almost made me weep; I always felt guilty because I thought my weariness was because I wasn’t trying my best to earn good grades (I was an average student overall but in literature and the social sciences, I was well above average) and because I was lazy. The thought of being lazy just made me feel even guiltier. It wasn’t until I was an adult that I could finally understand that from the time of my diagnosis, my education was not going to be “complete,” because I did not have the full access I needed. It was as if intensive speech therapy and itinerant teachers were more important than having a sign language interpreter in my classes. The toughest work, of understanding and making sense of the overload of information, was all up to me to decipher.  

As Mr. Noon says, “We can change the world. But we might need a nap and a cuppa tea every once in a while, so don’t judge us.”

Jennifer Castle: Chronic Illness and the Friend Factor

Jennifer CastleCover for YOU LOOK DIFFERENT IN REAL LIFEJennifer Castle‘s first novel, “The Beginning of After,” was named an American Library Association Best Fiction for Young Adults selection and a Chicago Public Library “Best of the Best” Book. Her new novel, “You Look Different in Real Life,” was published in June 2013. She wrote many unproduced movie and TV scripts before returning to her first love, fiction . . . but she’s still hooked on film and the way we can find and tell our stories with images. She lives with her family in New York’s Hudson Valley. Find her on Facebook, Tumblr, and Twitter.

When my best friend Peggy and I were fourteen, and we’d just started freshman year of high school, we liked to hang out at our neighborhood pond. It was peaceful and we could just walk and chat and make disgusting jokes about ridiculous things. It was our place.

One day, out of nowhere, probably in the middle of talking about how much I loved John Taylor from Duran Duran, I got terrible stomach cramps. Then I puked on a pile of goose shit (yes, I still have that image in my head and sorry, now you have it in yours). Peggy had seen me double over in pain before. She knew I often dashed for the girls’ bathroom at school, and sometimes she stood outside and heard All The Noises. She knew I’d been to several doctors and they hadn’t yet been able to figure out what was happening to me. This must have been the tipping point, so to speak.

“What do I do, Jen?” she cried. “How can I help you?”

I didn’t know how to answer her; I was so freaked out and humiliated, I couldn’t even begin to figure out what my needs were. All I wanted was her to not have to ask these questions to begin with.

Many months later, I was finally diagnosed with Crohn’s Disease, which is a form of Inflammatory Bowel Disease (IBD). Nobody but Peggy and a few other friends knew, and they didn’t fully understand what it was (back then, you couldn’t just Google the hell out of it). I told nobody else, because duh, it was totally embarrassing. It was about having diarrhea, and not being able to eat the foods everyone else is eating, and of course, puking on goose shit when you’re supposed to be chilling with your BFF.

I lived with active Crohn’s throughout high school and college, and even into “new adulthood.” (I have been in remission for a while now, knock wood.) There were times when I was healthy and didn’t feel disabled at all. There were times when I could barely get out of bed, let alone leave the house. Often I could mask my symptoms to the people around me, and often I just could not. I was always worried about being the friend who was a drag, who couldn’t keep up, who sometimes had to bail completely. The way a person reacted to my illness became a good barometer of whether or not we had a future as friends. When someone went beyond the compulsory “Are you okay?” and asked, “How can I help you? What do you need?”…well, that meant the world to me. I knew this person was a keeper. It gave me the strength to learn how to respond, even if it was to tell them I didn’t need or want anything at that moment, but thank you.

I’ve never written fiction about living with Crohn’s, and to be honest, I’ve never wanted to. Perhaps because I still feel what I felt for years growing up: that nobody wants to hear about my annoying, humiliating misery. Yet I know, intellectually, that this is a shame, because there should be more characters in YA literature who live with chronic illnesses like IBD. These are your non-flashy, day-in-day-out medical conditions that come with symptoms and restrictions. These are your teenagers who may not be dying, but struggle daily for what they perceive as a normal quality of life. Who always feel “other” in some way. Whose relationships — with their families, friends, and peers — bear that particular layer of stress.

I guess the real problem is, if a character’s chronic illness doesn’t directly impact the story or change her/him in some way, do you fade it into a background trait, like you would with ethnicity or a skill? Is it a minor element of their backstory, like divorced parents? If you just stick it in there for the sake of diversity and representation, would that feel gratuitous? Maybe the only way to answer these questions is to try these options and see what flies.

As an author, whenever you’re thinking about something that interests you, you have to ask, “Where’s the story here?” So when I was doing early brainstorming for my novel YOU LOOK DIFFERENT IN REAL LIFE, I looked at my own experiences with disability and the disabilities of people I know, and realized the answer to that question, for now, for me, is friendship.

It was the memory of that moment at the pond with Peggy, of her asking in frustration and love, “How can I help you?” that brought me Justine, the narrator of YLDIRL, and her classmate Rory. Two girls who were best friends from toddlerhood through elementary school, until Justine was old enough to question whether or not this friendship was working for her. Not long after Justine dumps Rory, when they’re 11, Rory is diagnosed with an autism spectrum disorder. (Why autism? Let’s just say I was inspired, and challenged, by several important people in my life.) Now 16 and thrown together by the filmmakers who have been documenting their lives, Justine has to figure out how to see Rory as a person rather than an autistic person, and whether she wants to be with this person again. When Justine has the opportunity to help Rory when Rory needs it most, she digs deep into their shared history to do that. I loved, loved, loved writing this thread of the story.

What do you need? How can I help you?

They’re simple questions, but we don’t always have the presence of mind or comfort level to ask them.

Go ahead. Ask. The person may want or need your help; they may not. Either way, the answers to these questions create wonderful possibilities in life and in literature.

Jacqueline Koyanagi: Autism Spectrum Disorder, Fibromyalgia, and Invisibility

Jacqueline KoyanagiCover for ASCENSIONJacqueline Koyanagi was born in Ohio to a Japanese-Southern-American family. She now lives in Colorado where she weaves all manner of things, including stories, chainmaille jewelry, and a life with her loved ones and dog.   Her stories feature queer women of color, folks with disabilities, neuroatypical characters, and diverse relationship styles, because she grew tired of not seeing enough of herself and the people she loves reflected in genre fiction.

Her debut novel, ASCENSION, comes out from Prime/Masque in August 2013 (ebook) and December 2013 (trade paperback). You can connect with Jacqueline on Twitter or visit her website.

I’ll never forget the moment I realized something wasn’t quite right. I sat with one of the few people in my high school I felt safe enough around to call “friend,” surrounded by the sound and movement and color and sheer overstimulating white noise that was high school. Watching other kids move around so quickly, unplagued by pain and overstimulation and exhaustion and confusion, my long-standing frustration hit the ceiling.

I took all the words that had been hiding under my tongue and forced them out. I said, “I don’t understand where everyone gets their energy. I look at them and they seem like they’re always awake and alert and none of this noise bothers them. I’m almost always overwhelmed, and I’m always tired and in pain.”

My friend turned to me with a face full of genuine concern and said, “Really?”

With that one word, that one look, it hit me that my experience really was abnormal.

Until then, I’d assumed I was lazy. Weak. Oversensitive. By confessing to my friend, I’d been hoping to hear something like,Oh, we all feel like that. High school makes all of us tired. No one likes noise. Socializing is hard for everyone. You just need to try harder.

It would have meant there was an easy answer. It would have meant the problem was me, that my struggling was easily overcome by sheer force of will. It would have meant bootstrapping myself until I was functioning at full capacity, because that’s what we’re meant to do, right?

In my teenaged eyes, everyone else was running a marathon with ease, looking at me with confusion while I struggled to make one lap around the track. Surely, I just needed to push harder, run longer, build up my endurance. That’s what I’d believed, what I’d been told. That’s the narrative I’d learned from countless stories, lessons, motivational posters.

Instead, with my friend’s one-word puzzled response, I knew: Something in me was different. Not just lazy or weak, but fundamentally different from the kids around me who had so much energy and easy enthusiasm that they lost me in the fray.

Both physical and mental health care and awareness being what they are, I didn’t find answers until well into my adulthood.  “Asperger’s Syndrome,” they said (though the DSM-V now categorizes this as autism spectrum disorder). “Somatic sensitivity comes with the territory. Of course you can’t figure out how to befriend your peers—you’re running different brain-software on different brain operating systems. You need a cross-platform piece of communication software that you can share.”

“Fibromyalgia,” they said. “Your muscles and joints are on fire, your body is fatigued, your sleep cycles are shot, because you have this thing for which we have a name. The pain and fatigue aren’t just normal byproducts of living; they’re symptoms of an invisible disability. And we have things that can help alleviate the severity of the symptoms. We can help you structure your life in a way that will let you seize the good days and rest on the bad days, because you will have both, just as you always have, and it’s okay.”

“You are okay,” they said.

“You are allowed to be in pain,” they said.

“It’s not all in your head,” they said.

Strangely enough, cupping these labels in my hands, I finally felt not-broken. I felt like I was allowed to exist exactly as I was. I felt seen for the first time in many, many years.

That feeling of not-brokenness comes and goes, but the diagnoses helped tremendously. They were, and are, freeing. They’ve given me permission to be who and what I am. They’ve given me permission to have the brain that I do, the body that I do. That doesn’t mean I don’t strive to overcome the disparity between myself and the expectations of the world around me; for me, it just means that the disparity isn’t the result of my obstinacy or laziness. It’s just a disparity.

It just exists. I just exist.

I am disabled. For me, that knowledge is empowering. I wish I could visit my teenaged self and tell her that it isn’t all in her head, that there’s a reason people found her social awkwardness frustrating, there’s a reason loud auditoriums and shouting kids made her want to run away, there’s a reason she has the physical tics she tried so hard to suppress, that there’s a reason she’s in pain and exhausted all the time, that there’s a reason she’s trying not to cry in History class because sitting up nearly made her pass out from the shooting pains in her neck, back, hands, and legs.

I want to tell her she’s disabled, because it would have changed her life nearly twelve years early. She would have given herself permission to not berate herself when she didn’t understand social cues. She would have given herself permission to stand up for herself when her abusive family member gaslighted her about her then-undiagnosed autism spectrum disorder. She might have even given herself permission to stim when she needed to, instead of feeling shame that the impulses existed at all.

She would have had opportunities to thrive that were hidden from her out of ignorance.

This is why we need a culture of awareness. I can’t go back and tell my teenaged self these things, but I can live on her behalf. As a diagnosed adult, I can tell people, “No, I can’t go out with you—I need to rest today.” I can tell people that I’m on the spectrum and what that means, so our social expectations are on the same page. I can tell someone when sensory stimuli are too much and I need to leave.

I can use all of this incredible, wonderful knowledge to cultivate a life full of relationships and work and hobbies that give me room to exist as a disabled person.

That is empowering. I hope the teenaged me, somewhere deep inside myself, feels cared for and seen in a way she never did in high school. I hope the kids in high school today are being given the chance to thrive I never had. And I hope they have the chance to read stories featuring kids like them, human beings like them, who aren’t conceptualized as broken. I want them to have a different narrative than the one I was given.

They deserve it.

Kody Keplinger: Being A Blind Teenager

Kody KeplingerKody 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.

Except once.

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. 😛