Tag: Albinism

Noisy (creative nonfiction)

~ M. Ashley ~ 2 Comments

“Feel the delight of walking in the noisy street,
And being the noise.”
-Rumi, “A Community of the Spirit”

I bet the world would take Gen Z a lot more seriously if they knew the difference between “everyday” and “every day..” There is, at least I think there is, a correct way to make noise in this math we call writing.

Words mean things.

I once got in an almost fight with a therapist because she thought “heigth” was a word. That would have been an unholy kind of noise. A rumbling fist fight behind the closed doors of confidentiality. I may have come out bloody, she looked like she could have been a scrapper, but dammit, I would have been right. I am right. There is no h at the end of the word.

A lady in my group therapy had an albino husband. There was some drama with him at the behavioral health clinic. The therapist leading the group said she heard about him coming in and “acting a fool.” Part of his foolishness being that he whizzed in the corner of one of the therapists’ offices and had to be carted out of there by the po po. He was making all kinds of noise—shouts, grunts, tinkles.

I was embarrassed for my people. When the secretaries for the crazy house see me, do they now think, there’s another noisy albino ready to piss in the corner. Somebody get the gloves on. Somebody get that powder that sucks up hazardous liquids. Somebody get a mop.

I speak quietly, still embarrassed for my people. Lack of pigment doesn’t mean lack of decency man, be a human for fuck’s sake. Be a little quieter, in a dignified way. You are not the kind of spiritual noise Rumi was talking about.

That same lady, married to the peeing albino, in my therapy group, looked ratty all the time. Not throwing stones. I can rat it up in fine style myself. Just a matter of fact she looked ratty all the time. And once she said she didn’t take care of herself because her albino husband couldn’t see her anyway and I didn’t disabuse her of her excuse to look ratty, but unless there was something extra wrong with his eyes that isn’t wrong with mine, yes… yes he can see her in all her ratty inglory..

I’m sure that’s not what made him make the loathsome noise and piss in the corner, but it’s just one more stressor, or an indication of a relationship already stressed because the woman cares more about what he can’t see than what she sees in herself.

I wanted to shout in the street that she should be un-ratty for herself, and damn the pissing albino with his not that bad eyes. Be your own woman. Be you for you. Be beautiful for your own liking. But then I realize, shouting at her in the street would be me making the noise at myself mostly because I too, as I said, can rat it up a lot of the time and don’t like looking at myself in the mirror and I don’t look and the internal noise is something like well, if I can’t see the rat tunes that well, I can’t blame myself for being ratty, which is the same argument this lady had but at her other, which is infinitely better than me having this discussion and blaming my quiet rattiness on myself.

-M. Ashley

NaPoWriMo: I Am an Albino

~ M. Ashley ~ Leave a comment

Unrequited lover of the light
Longing for west and east facing
Curtain-less windows wide open

But built to be shy of the light
Take it all in unrestricted
Get sick from it

My skin cancers
I faint
My iris-less eyes
Twitch in pain

God comforted me once
He said, “Perhaps the light
Is maladapted—not you
Nor your love of it.”

-M. Ashley

Exceptional Vehicles

~ M. Ashley ~ Leave a comment

Let’s talk about driving. What goes unnoticed? What do we take for granted?

All you people take driving for granted.

I can’t drive because I’m legally blind and it is one of the most horrible kinds of crippling, or at least I imagine it is. Having never been an independent driver, I wouldn’t know.

I don’t know what it’s like to have a notion to go somewhere and just go. Cold night, playing Freeze Out like my dad used to do with us girls in the car—all four windows down, whoever rolls theirs up last is the winner—but with only myself as competition. I’ve never had to keep myself awake with only myself and the double yellow lolling out endlessly before me in the dark dark desert between here and Las Vegas.

I don’t know what hitting 100mph is like on that same highway, in the middle of the night, when I’m sure the CHP isn’t watching.

Yellow line, lulling you to sleep. Blaring the radio to fight it, Botts’ dots rumbling your eyes open again. The danger. The responsibility. The irresponsibility. The win when you get there somehow, miraculously, safe.

I wish I could stand somewhere alone that I drove to alone that I decided to drive to alone, and that no one but me, alone, would know about it.

Freedom. A grass is greener freedom as my side of the fence is on foot or riding the bus or in a cab or mooching rides from patient friends.

It’s hard to be independent when your broader movements are, by necessity, dependent—when, at the very least, the bus driver is going to know where you came from, where you went, and, if you ride enough, most of what your story is.

I sound bitter.

I am a little bitter.

No one to blame but the DNA. I was born wing-clipped in Southern California. Apparently my genetic material never heard the song “Nobody Walks in LA,” or heard it and thought we would be the exception.

Special genes do make one exceptional.

I am exceptionally half-sighted. I am exceptionally good at scheduling my errands around my friends’ errands so I don’t trouble anybody too much.

I am exceptionally blessed with the gift of the gab and, by lack of automotive freedom, have gained masses of unlikely friends all over the country because of it. There is not much else to do when you’re stuck in transit together, breathing each other’s air, than to become compatriots.

Rwandan refugee cab drivers in Nashville—that ride share guy in DC who asked me what color palm trees are—the Uber lady whose dog just died yesterday—the bus driver who wouldn’t take my ticket without putting on gloves first (she was new and we weren’t virus-stricken yet)—the disability cabbie who brought his family along at eleven at night to pick me up from work, his wife sweetly piping up into the conversation from the back—the Pakistani guy who asked me to marry him—the Russian guy who also asked me to marry him—that other guy who asked me to use my employee discount to buy him a coffee pot “for church.”

I suppose all of these, in truth, are my own kind of exceptional vehicle and, once-in-a-while bilious drivers’ envy aside, my clipped-freedom grass is brilliant green because of them.

-M.

On Being Albino in Southern California

~ M. Ashley ~ Leave a comment

Photo on 2012-06-07 at 18.06Last week, out to lunch with a friend, a pack of neo-valley-girls blustered in and sat down in our section. Not too long after, one of them pointed at me, they whispered to each other, then all laughed loudly. It happens. It is an extreme unpleasantness that goes with the albino turf.

As galling as it was, however, I think the thing that galls me most is realizing that these idiots, obviously students at CSU Berdoo, are probably the same type who shout diversity and inclusion from the rafters all day, every day, as they flit from class to class. I see tolerance only goes so far. Only certain types are worthy.

One interesting thing is that in the thirteen years I lived in Nashville, I never encountered that. Not even once. Since I have been back in California, however, it has happened several times, and has always come from adults. In Nashville, if someone were curious, she or he would just walk on over, strike up a conversation, and ask. They’d most often want to touch my hair and ask whether I preferred “an albino” or “a person with albinism.” I found this pleasant and endearing.

While I’m not prepared to make any sweeping conclusions about the virtues of southerners as opposed to the vices of southern Californians—individuals are individuals after all, and hypocrites can be found under any slimy rock you care to turn over, regardless of geography—in my heart, I feel those conclusions beginning to boil.