Blindness and Disability

Blind Encounters

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?!

Continue reading “Blind Encounters”

Blindness and Disability, Samples, Writing

Albino – Seeing and Not Seeing 2

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

Blindness and Disability, Samples, Writing

Reading Eyes and Faces – Seeing and Not Seeing 1

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

Blindness and Disability, Science

A Blind Girl in Science Labs

I belong to a lot of mailing lists for blind and visually-impaired members, including blind students, blind people interested in science and engineering, the blind of Oregon, the blind of Portland, and so forth.

One thing that comes up over and over again on these lists, especially the student and science ones, is difficulty with science labs. Maybe a student needs a year of a lab science for their general education requirements. Maybe someone wants to go into science but doesn’t know how to handle labs. Maybe the students know they can find ways to do the labs but the professors or the schools don’t.

It can be really intimidating so I thought I’d take some time to write about this here. I also think a lot of sighted people, once they see or hear about a blind person doing science labs, want to know how it’s done but might not feel comfortable asking. So this is for blind and sighted alike.

Continue reading “A Blind Girl in Science Labs”

Blindness and Disability, Samples, Writing

Possibilities – Blind Conventions 1

NFB Convention, Detroit 2009

The first few days of convention are filled with Division meetings, meaning that instead of meeting as a huge assembly (that will come later), at any given time there are several different special interest groups meeting at once. Parents of blind children, blind parents, seniors, diabetics, piano tuners, ham radio operators, lawyers, antique car enthusiasts, crafters, technology buffs, they all have divisions and meetings. There are also meetings for new members, presentations from different schools for the blind, presentations by guide dog schools where you can “test drive” a guide dog, meetings on how to build up local chapters, demos of new adaptive technology, plays put on where the directors and actors are all blind, salsa dance classes taught, attended and deejayed by blind folks, a mock trial put on by blind lawyers and the list goes on. We take frequent breaks in our room because the stories are true, it is a little overwhelming.

There’s also the Independence Market, a technology and adaptive aid exhibit hall in one of the hotel ballrooms and it is something to behold. Along every inch of every wall, and through several makeshift hallways in the center, there are endless tables and displays, each draped in a different company logo. Most of the booths feature technology items—braille notetakers, digital book readers, screen-reading software packages, handheld iPhone-shaped gadgets that act as magnifiers and also play music and videos. Apple is there with the real iPhones, which are accessible right out of the box, the new technology rage among the blind. There are several flavors of talking medical supplies, every size and shape of magnifier and audible GPS devices. There are random non-techie booths, like the FBI doing job recruiting, and a booth selling Braille Bibles brailled in over 27 languages, including several Indian ones like Hindi and Malayalam.

I go by myself to the science and engineering division meeting, where I meet people who are interning for NASA and a totally blind girl who’s majoring in biochemistry who guesses people’s heights (while they are sitting down) by voice. Even though I’m slightly slouching, she guesses my 5’7” spot on. The NASA thing gets me. When I was younger, I thought I wanted to do something like that when I grew up, but back then my visual impairment would have been a deal-breaker. That’s one of the great things about a convention like this: you get to really see that things are changing, that blind people are making inroads and finding success in all kinds of careers and hobbies.

~~~

This is an excerpt from the essay “Blind Conventions,” a recounting of my first experience at a blind convention held by the NFB. This piece is apropos because I’m currently en route to my 2nd NFB convention. I’m sure there will be lots of fun crazy, funny, weird and inspiring stories that I’ll be tweeting along the way! These conventions are always surreal.

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

Blindness and Disability, Samples, Writing

My Face

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

Blindness and Disability, Science, TV, Writing

Foraging Into the Blogosphere

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

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:

Continue reading “Applying to Jobs with a Disability”

Blindness and Disability, Music, Science, Writing

I Am Not Your Touch Tank Sea Star

IMG_0335So, for whatever reason, I’ve been feeling like putting some of my writing up, so here is a poem I wrote a few years ago, followed by the story of how it came to be.

I Am Not Your Touch Tank Sea Star

When I’m a sea star
I hold the sea’s mystery in my purple
Yet I live at the tips of my spines
Erected like walls to protect
My soft center from being hurt or feeling
The hurt I’ve already been.
As I scavenge along the bottom
For bull kelp and sea lettuce
I cling to any steady surface
With tube feel like a miser who knows
I don’t deserve the water
And I don’t let anyone touch me

Sometimes I’m a sea cucumber
Spikes only ward my demons off for show
I let them go tender
And as I lay exposed
My past creeps up behind me
Slithering inside my open sores
Carrying their torches of truth
I feel them settle in my gut
So I twist it around them, bunch it up
With a hurl I eviscerate my organs
And scramble to grow new insides

Once I was an octopus
Used eight arms to lift the top of the holding tank
Squeezed out, dropped to the floor and crawled
Through the crack under the door
Famished on the sand, inching forward
Telling myself I will not let them
Make me let myself die
If I can give me a little slack and a lot of love
I might make it
Back to the deeper seas I knew before captivity
Where they can’t coax me back
To put me in the big tank, captive
For their audience
I am free

On a blue moon I’m a blue dolphin
On waves with deeper frequency
Intelligence unfocused on rational thought
Feel no shame for stranding myself
To help a member of my pod in need
Sensed out with echolocation
Weathered harsh, howling storms
By surrendering to their windblown frenzy
I know the patterns of Earth’s turning
I have been to blue depths

Today I just want to be
Myself
Deep down
I am
The sea.

Continue reading “I Am Not Your Touch Tank Sea Star”

Blindness and Disability, Science

I Just Had the Coolest Afternoon!

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!

Continue reading “I Just Had the Coolest Afternoon!”