Tag: albinism

Blindness and Disability

If You Were Blind, Would You Cut in Line?

Chrys Buckley
Roller Coaster

This is something that is often–sometimes hotly–debated in the blind community. A lot of times, when you go to amusement parks, if you carry a cane you can cut to the front of the line and go first on all the rides. The last time I was at a leadership seminar for the National Federation of the Blind, we had a roundtable discussion about this issue, what we thought and what our experiences had been.

This is something I never really encountered growing up. My family went to amusement parks pretty often, but since I don’t use a cane, no one ever approached us and invited us to the front of the line, except maybe when we went to Disney World, I have some vague memory that it may have happened then.

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Blindness and Disability

Blind Encounters

Chrys Buckley

When you are blind or visually-impaired, it leads to some experiences that are a bit out of the ordinary. That probably goes without saying, and I just thought I’d share a few.

One of the most common is what I call the “state the obvious” encounter. You’re on a bench waiting for a bus, in a cafeteria, at an office, in a classroom, at a coffeeshop, riding a subway or a ferryboat and a complete stranger comes along and states the obvious. “You’re reading really close up.” “Your eyes look weird.” “Wow, your glasses are really thick.” “You’re blind!” “Is that a blind dog?” (to which some people, hearing this over and over, learn to reply, “I sure hope not!”).

Or there are the oddball questions. One time I was reading a quote on a small piece of paper, close up, and some stranger asked me, “Oh whoa, are you listening to the paper? That’s so interesting.” What?!

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Blindness and Disability, Samples, Writing

Albino – Seeing and Not Seeing 2

Chrys Buckley

When I was maybe five years old, my mom was convinced I couldn’t smile right. I studied her mouth as intently as I could, then stretched my own into the same shape. But one lip or the other was always too high up, too pulled down, turned too far in or out. I tried to work these corrections into my face muscles but I could never see my mom’s smile in enough detail to craft my own to look like everyone else’s.

Crystal Structures of Tyrosinase

I have albinism, a recessive genetic condition that results in skin, hair and eyes that are paler than pale, and legal blindness. An enzyme called tyrosinase that converts the amino acid tyrosine into melanin pigment is inactive in albinism and this leads to the whiteness and blindness. The visual impairment of albinism, though steady and consistent, is murky territory—I’m too blind to drive or read any of the letters on a standard eye chart except that top “E” but not so blind that the world isn’t intensely, sensually, visual. In the blind community, I am what they call a “high partial.”

Around the same time as smile training, my blindness was a dull but ever-present emotional ache. On the playground, kids ran up to me and called out “whitey” and “snowball” and “ghost,” waved their hands in the air and asked me how many fingers they were holding up, mimicked my ambling eyes. As I got older, the teasing involved spitballs, a kid who jumped out in front of me in the hallways and yelled, “Watch out, brick wall!” and the boys in eighth grade who stole books out of my locker and set them on fire.

Sometimes, in my room, away from the teasing by my peers but alone with the scenes replaying in my head, the ache would erupt into a scalding, white-hot rage. It was so unfair that out of all the people I knew in my family, in school and around town, I was the one who ended up albino. No one saw anything beyond my albinism. I felt like a ghost.

~~~

Another sample from my essay “Seeing and Not Seeing.” Here’s the previous excerpt from the same essay. I have to say, this piece above is the very beginning. The essay doesn’t end in this same place or mindset.

~Chrys

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Blindness and Disability, Samples, Writing

Reading Eyes and Faces – Seeing and Not Seeing 1

Chrys Buckley

eyeimagesAnd faces—nothing has given me more trouble. Eyes, those most important details of a face, are too small to make out unless I am close enough to make out with someone. I didn’t know what color my last boyfriend’s eyes were until after we had been dating for almost six months. Whenever we were close enough for me to discern their color, he kept his eyes closed. I didn’t see his eyes until we were riding a city bus on our way to a concert on an early May evening, squished next to each other on the seats. He turned slightly to me, the light was just right, and I finally saw out of my right eye that his left was brown with textured traces of gold, simultaneously soft and hard in color.

Last year, I was watching TV on my 24-inch computer monitor, sitting less than a foot away, and saw a close-up of someone rolling her eyes. At thirty, I was seeing that gesture for the first time and it was nothing like I had imagined. Inspired, I wanted to get a glimmer of what it is to read feelings in eyes, so I watched Grey’s Anatomy, scrutinizing characters during emotionally wrought scenes, their faces taking up my whole screen. Though I felt all the feelings from the context, the music, the minute changes in pitch and inflection in their voices and the larger facial gestures, I could see nothing in the eyes.

~~~

This is an excerpt from an essay in which I explore a few different aspects of albinism and blindness.

You can check out other Friday Samples here. And don’t forget you can always check out Published and Older Works for more samples.

~Chrys

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Blindness and Disability, Samples, Writing

My Face

Chrys Buckley

I can’t read the nuances of faces but mine is a direct display of every undulation in my emotional current. My face is a one-way mirror.

Still, others often don’t see my personal, particular face.

People sometimes asked if my albino friend and I were twins. We were nine years apart and my face was longer, drawn while hers was rounder, more full. Worse yet, at an albinism conference, my dad came up to the girl next to me and told her it was time to go, mistaking her for me.

My face is at once expressive, transparent and invisible.

~~~

This is from a class I took called Personal Essay Writing. The assignment was to write about your face in EXACTLY 100 words. No more, no less. It led to a lot of obsessive editing.

You can check out other Friday Samples here. And don’t forget you can always check out Published and Older Works for more samples.

~Chrys

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Blindness and Disability, Science, TV, Writing

Foraging Into the Blogosphere

Chrys Buckley

My name is Chrys. I’m a writer, dabbling in different forms and genres, and I’m starting this blog in hopes of connecting and talking with readers, other writers and interesting people of all flavors.

I plan to blog about writing, whether it’s about the primal creative flow; crafting that flow into something more, well, crafty; the love of language and letters; fitting writing into a busy life; getting writing insights from TV, movies, books, music and art; writing groups; the publishing process; or my pet favorite topic, the importance of story. We might do some writing exercises on here, take some polls, have some guest blog posts by other bloggers and writers, discuss our writing favorites and just overall have some freakin’ fun with the written word. A lot of it will be really interactive so I hope you’ll all join in and have some lively discussions, recommendations, opinions, debates, throw-down drag-out flame wars (kidding) and inspiration.

A little about my writing: One of my earliest memories is of sitting on my dad’s lap at age three or so, while my parents went over the letters in the alphabet and what sound they each make. Not long after that, they got a Wheel of Fortune board game. I didn’t know enough to be able to really play, so my parents would make up puzzles out of simple words I did know based around my favorite letter, W: winter, window, flower, snow. And thus began my lifelong love affair with words. In elementary school, I was writing little “books” that were just a few pages long and thinly-veiled mimics of Nancy Drew and The Baby-Sitters Club, and making my family read and rank them.

In high school, I wrote a bunch of short stories, usually with a sci-fi-ish twist, some involving ridiculous characters (there was one who was named after the lead singer of Alice in Chains and spoke in grunge music lyrics) and they’re almost all at least somewhat mortifying. Still, I posted some of the stories, for entertainment under Older Works in the Samples and Excerpts section. After that, I got into a lot of memoir writing, including a full manuscript (which needs some reworking, more about that in future posts) and personal essay writing. Recently, I’ve also started dabbling with screenwriting and TV scriptwriting. I want to continue to explore all these different forms and how they inform each other. I’ll put up some writing samples (don’t worry, they won’t all be from the bowels of my high school-era treasure trove), descriptions of current projects, and snippets and pieces from works in progress.

A little about myself: I have albinism, which means I have really, really pale skin, hair and eyes, and that I’m legally blind. It’s made for an interesting life, to ya know, understate it just a little. Since this is a major topic in my personal essay and memoir writing, and something that the average person doesn’t know a lot about or may have drastic misconceptions about, blindness will definitely be a recurring topic here. I’m already thinking of some potential guest blind bloggers that I hope you’ll enjoy.

Another main theme here will be TV. I watch way too much of it, but there is a lot that us writers can learn from all that watching. TV is a major way that stories are told these days. I watch a handful of shows, but I will give you a heads up from the start that I’m currently really into (read: pretty freakin’ obsessed with) AMC’s Breaking Bad and in my mind, it’s just rich and brimming with insights for writers, or storymakers of any sort, so there’ll be a lot of that type of dissection going on here on this blog. Seriously, if you haven’t already, go watch it. Best show on television, though definitely not for everyone.

There are a few other topics that I expect will play a lesser but not wholly insignificant role here. One is science. I’m a science student right now (and should really be studying organic chemistry right now, instead of trying to cajole you into watching a show about a badass kinda evil organic chemist) so science will no doubt seep in. Plus, David Foster Wallace made it cool to let that inner nerd slide into the writing. On an almost opposite note, I’ve spent a lot of time dabbling in the metaphysical–I’ve done astrology and tarot readings for years–so that’s bound to come up too. As will music, movies, books and other random crap, I’m sure.

But I always want the underlying theme (for the most part, anyway) to be the written word, and story.

~Chrys

Blindness and Disability, Science

Applying to Jobs with a Disability

Chrys Buckley

ADAFax from the Future: So, looking back at this post is a little disheartening.

I did not get the volunteer opportunity that the post centers around. But what is really shitty is I mentioned in passing later in this post a job that I really wanted, and I also did not get that job, which was almost definitely due to my disability and the company was really shitty about it, and it was a job I was super, super perfectly qualified for. Even the person at the Career Center who was helping me with my resume/cover letter for that job, was sure it was a sure thing. It was awhile ago, but it honestly still really bugs me, a lot, because it was so blatant and unfair, probably one of the times I felt most openly discriminated against. And maybe I’m a little mad at myself for not somehow confronting the situation (though I’m not sure how I could have in a productive way), I just feel a little shitty that I “let them” get away with it. It’s exactly this repetitive experience that makes me feel so weary and unmotivated to keep trying sometimes. This one was a pretty bad one. There’s a separate post about it somewhere in here, maybe I’ll post that next.

Now, for the original post:

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Blindness and Disability, Science

I Just Had the Coolest Afternoon!

Chrys Buckley

cookeWow.

Okay, I just had an awesome afternoon. Today I met with a woman who works as a naturopathic physician who is totally blind. I mean, WOW. It’s one of those times that reminds me that my visual impairment is NOT an excuse to not do things! I mean this woman is a doctor! She went through classes like gross anatomy and diagnostic imaging with no eyesight at all. How amazing is that?!?! It makes me feel like, yes, I can do science stuff, and there are all kinds of alternative techniques to do visually-intense things, in school and in life.

She also invited me to a group of blind and visually-impaired knitters and I’m going to do it. I’m good with my hands, and that is something that I’ve always felt that if I were taught how to do, I could really do by feel. So I am going to go get my knit on and be a stitchin’ bitch! It’ll be really nice to get connected with the visually-impaired community too. I’m psyched about that!

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Blindness and Disability, Science

The Big Move

Chrys Buckley

PdxtripOct2009 048-2Fax From the Future: (First off, BTW that is going to be my catchphrase for whenever my current 2015 self wants to interject some thoughts into these old posts from much longer ago. This one was from September 2009. And the catchphrase is a reference to The Office) It is so weird to look back on this now. I have such a clear memory of walking into my first class. It was a night class, and it was still light out when I walked in, not knowing a single person or if I would be any good at science, kinda waiting for someone to tell me I shouldn’t be there b/c of my eyesight, and having all this excitement and fear. I had never gone to a school with such big classes and just had no idea what to expect. I remember I walked in listening to my iPod Classic (still have it, what else could accommodate my massive music collection?) and Radiohead’s “No Surprises” was playing as I walked into Hoffman Hall. It was the beginning of a really amazing time of my life that is still going on.  Anyway, on to the real post:

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Blindness and Disability, Science, Writing

Yes, this is my Final Answer…

Chrys Buckley

166696_10151441891358872_563138313_n…for the million dollar question in the game of What the Fuck Am I Doing with My Life?

Anyone who’s been following my blog this summer knows that I’ve had some back and forth thoughts about whether to start school in the fall or to attend a training center for the visually-impaired in Denver. But what you don’t know unless you’re one of the unfortunate people to have spent a lot of time with me in recent months is how intense and unending this indecision has been. I thought for sure I would go to school no matter what. Then I was unsure. Then I was certain about the center. Then indecision. Then school. Then the center. Then back and forth again and again, ad nauseam. And each time, I was SURE that I had come to a final decision.

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