Why now, then? Why reveal the tedious process involved in getting comfortable? Why not just forget about all that, and write?
“Just a minute,” I say to Ruth. “Before you go, I need my knees straightened out. And pull my elbows outward and up a little bit. Also, could you scratch between my eyebrows...Good, thanks.”
Why write about this? Why divulge the esoteric secrets of this craft of getting comfortable?
I could, and usually do, write without telling what it takes to get ready to write. I could disembody my writing, let my words stand alone, march across the page, a straight line of characters on paper, of ideas soaring through the ether. Text without context, at least without the physical context of its creation. A pretext of text, sexy or sexless. Text extracted from existence, text that excludes distress. I could write mind-over-matter text. Text expressing the best of the story; text repressing the rest of the story. (Or is it the other way around?)
Now my joints rest in comfortable positions. Each tissue-inch holds its proper share of weight and pressure. I’m breathing easily, my head well supported and turned to just the right angle, my back straight as it’s going to get. Ruth is gone; Robin is in the next room. I sit in a silent space that awaits my words.
Now that I’m comfortable, I can start making choices. Do I start the story here, with my focused concentration and blank screen? Or do I start the story there, with the concentrated effort needed to assemble a body capable of thinking and writing? Do I write as disembodied mind, or discombobulated body?
I could try to write in the voice of a body easily arranged, a body requiring only a thoughtless stretch of limb or a self-controlled fidget to achieve comfort. Since that simple, graceful body is not my own, that would be the same as writing without a body.
If I leave behind my body to write, what (how) does the reader read? Can a reader read a mind without having a body to read?
On the other hand, when I write from, of, about a discombobulated body, how (what) does the reader read? Can a reader read a mind while worrying about a body?
And what about the writer? If I write about my body, will I disappear into the shadow of the taller, stronger, more mobile body of the woman working on my body? Will her quick, easy movements draw the reader’s attention away from my main points? As I highlight my attendants’ contribution to the plot, do I make myself irrelevant?
That sometimes happens in real life. A store clerk will listen to my question, and then turn to face my attendant, replying, “The elevator is at the back. You can take her this way, through the magazine section—there’s plenty of room for the wheelchair—and then turn right and go all the way back.” Some strangers must see my attendants as keepers, as wardens wholly responsible for me, serving alternately as nurse, as guardian, as conduit to the world of the normal.
If these strangers knew about the extent to which I depend on these helpers for the smallest maneuver, for relief from discomfort, and for readying myself for any productive activity, would this not deepen their sense of my utter helplessness?
So why should I be the one to script that stereotype? Why describe the bodily ministrations performed by other people for my benefit? Why not concentrate on my own heroic journeys?
This is my journey, from chaos to order. I locate the stress points and iron them out, shuttling like a diplomat among my brain, my voice, my attendant and my body. My quest carries me to far shores, elbow to toe, neck to tailbone. I do battle with inertia and pressure. No: I negotiate a dynamic peace.
This is also my narrative: I envision an aesthetic of comfort, the parts of my body that do function—eyes and windpipe, tongue and imagination, nerves and ears and judgment—working together to optimum effect. I begin to tell that story, assembling sentences, then rearranging them. My discombobulated body the conflict, my attendant the instrument of resolution. Who is the protagonist? Perhaps we both are. A narrative not linear, but circular.
The process of getting comfortable demands a certain style, both explicatory and poetic: You see, this is the way I want it. This is what I mean. Not quite that far. Left, not right. Pull a little further. Push again. A careful calculation of timing, tune and tempo. This is my language: explication, correction, repetition.
This is my poetry: an incantation for rain, or for a new era of peace, or for the comfort to write. Poetry aims for the thing itself, not just to name the thing. Poetry draws a straight line connecting the desire, the request, the fulfillment. Poetry is power of words to effect change, to move people—in this case, to move me, the author. Literally.
I’ve decided that I needn’t leave my disabled body behind in order to fool and comfort my reader. Instead I’ll violate what Nancy Mairs, that chronicler of her own discombobulated body, calls “the conventions of polite silence,” in order to write, as she puts it, “as plainly and truthfully as the squirms and wriggles of the human psyche will permit” (p.xi).
One day, one reader, or perhaps many readers, will be reading this after—or while—going through a similar process of request, instruction, adjustment, to get comfortable. Such a reader may peer into the page and see herself reflected, at last. This reader may weep with relief, or may snort with relieved impatience—What took you so long? For this reader was way ahead of me, always already knowing that there is no authentic thought that is not born in the thinker’s body’s cells, nerves, secretions, in its kinetic and/or sensate experience.
No real journey can happen without a foot on some piece of ground (or a bottom in some seat) and the wind’s kiss on skin. There is no philosophy in the absence of a sweating fear; no humor without hiccups; no love without blood in a beating heart.
So get yourself comfortable, and let’s begin.
Working Together
Her job: brisk bristle circle on teeth
My job: sneer
open wide
Her job: apply soap
loofah
hot spray
My job: how hot
say stop
Her job: heft my flesh
point a to point b
My job: remind her of our
respective spines and limbs
Her job: what no one thinks of doing
except for self or child
My job: make her forget
help her remember
tell her she can
Telling
What you risk telling your story:
You will bore them.
Your voice will break, your ink will
spill and stain your coat.
No one will understand, their eyes
become fences.
You will park yourself forever
on the outside, your differentness once
and for all revealed, dangerous,
the names you give to yourself
will become epithets.
Your happiness will be called
bravery, denial.
Your sadness will justify their pity.
Your fear will magnify their fears.
Everything you say will prove something about
their god, or their economic system.
Your feelings, that change day
to day, kaleidoscopic,
will freeze in place,
brand you forever,
justify anything they decide to do
with you.
Those with power can afford
to tell their story
or not.
Those without power
risk everything to tell their story
and must.
Someone, somewhere
will hear your story and decide to fight,
to live and refuse compromise.
Someone else will tell
her own story,
risking everything.
Morning
I count on key click
crack swish front door open
bump close
footsteps
my eyes tight
&nb
sp; against daylight
but awake
waiting
I count on whining grinder roar
crush beans
hiss perk roast scent
tickle thirst
Those sounds those smells
signal she has arrived
again
to roll me
realign my hips
wipe deep sleep drool
from my lips
wash blur
from my eyes
Or
I wait
back stiff
throat dry
eyes open
speculate
traffic sick kid hangover
whether she’s not coming
or only late
Thousand Island
I wheel through the line, get my ticket punched—
a perk of dorm living, lunch
or dinner ready on schedule, cold or heated,
with no planning or shopping needed.
And the salad bar: carrots, cottage cheese,
lettuce, sprouts, bacon bits. All these
held together with orangeish, ketchup-sweet,
thick Thousand Island dressing. I greet
an acquaintance or two, then make
for an exit, go down a hall, take
a booth in the snack bar, face the wall,
read my history book, while
my aide feeds me my creamy
salad, small flattened bites, easy
to swallow. Later, in library or dorm, I’ll be more
social, but that’s not what meals are for.
For four years, I eat mostly apart, often silent,
making myself, at least a thousand times, an island.
Jillian Weise
from THE DISABILITY RIGHTS MOVEMENT AND
THE LEGACY OF POETS WITH DISABILITIES
I. BEGINNINGS
No one seems to like people with disabilities,” writes David Pfeiffer in an essay titled “The Disability Movement: Ubiquitous but Unknown.” Pfeiffer considers why such distaste continues to be prevalent today:
Disability is seen as a personal tragedy, a disgrace to the family, and/or a punishment from God. People with disabilities are to be pitied and they are regarded as a burden to society, to the family, and to themselves...These attitudes are due to the fact that people with disabilities are diagnosed. They are viewed as having a deficit named in that diagnosis. Unlike members of other social movements they are not allowed to self-identify.
Given these perceptions of disability and the lack of self-definition associated with disability, it is easy to understand why poets with disabilities might be reticent about self-identifying. Here’s a personal example. I was at the book fair of the Associated Writing Programs Conference in Austin, Texas, standing beside Jim Ferris, who wrote The Hospital Poems, when a woman approached, and without any introduction, asked, “Are you a crip poet?” I didn’t know what to say. I know what a crip is, and I know what a poet is, but I’d never heard the term “crip poet” before. I answered yes because it seemed like that was the answer she wanted, and it also seemed like to answer no might get me in some hot water, perhaps an argument on whether my poems were crippled enough, or whether I was, and these are not typically things I discuss upon meeting someone. I don’t know what would’ve happened if I had answered, “No, I’m not a crip poet.” I answered yes, and then she gave me a big hug and it seemed I had just been initiated into something without knowing what it was.
II. THE TERMS “CRIP POET” AND “POET WITH A DISABILITY”
My reservations about the term “crip poet” are similar to my reservations about the terms “disabled poet” or even the politically correct term “poet with a disability.” What does any of it mean? Ferris published an essay on defining “crip poetry” in the June 2007 issue of Wordgathering, an online journal of poetics. In the essay titled “Crip Poetry, Or How I Learned to Love the Limp,” Ferris writes, “Crip poetry centers the experience of disabled people; it shows disabled people taking control of the gaze and articulating the terms under which we are viewed.” Ferris cites characteristics of “crip poetry,” which include “a challenge to stereotypes and an insistence on self-definition; a foregrounding of perspectives of people with disabilities; an emphasis on embodiment, especially atypical embodiment; and alternative techniques and poetics.”
While it’s encouraging to begin to have acknowledgment of poets with disabilities, I find it also discouraging that these first efforts are essentializing, seeking to brand a common disabled experience, and define the work according to a grid, rather than simply opening the field for disabled poets to enter the conversation on their own terms. For the purposes of this essay, I will dispense with Ferris’ definition. Instead, I define “poet with a disability” as exactly that, a poet who has a disability.
III. POET OF THE DISABILITY RIGHTS MOVEMENT
When I began researching this essay, I was hoping to find a poet affiliated with the Disability Rights Movement. The movement reached its apex in 1977 when the disabled and their advocates took over the fourth floor of the San Francisco Federal Building for three-and-a-half weeks. During this protest, people with disabilities and their advocates received support from the American Legion, the Black Panthers, the National Association for the Advancement of Colored People and the National Organization for Women, among others. The protest resulted in the ratification of Section 504 of the Rehabilitation Act, which prohibits any federally funded program from discriminating against persons with a “qualified handicap.” Section 504 paved the way for the Americans with Disabilities Act of 1990. The Disability Rights Movement has been called “the last inclusion.” I expected to find someone who wrote poems in tandem with the movement, and who appeared at sit-ins and demonstrations, since poets are commonly known for their famous acts of solidarity: Ginsberg walked into the Stonewall Inn and shouted, “Gay Power! Isn’t that great!” After the assassination of Malcolm X, Amiri Baraka packed his bags on the Lower East Side and moved to Harlem and the Black Arts Movement was born. Adrienne Rich refused to accept the National Book Award individually, and instead banded together with Alice Walker and Audre Lorde to accept it on behalf of all silenced women. These examples show two main things that the Disability Rights Movement lacks: 1) poets whose work reflects the time and culture of their movement and 2) a sense of community.
Since the Disability Rights Movement has no such spokesperson, I’d like to consider Josephine Miles as a foremother to the movement. Miles is a poet with a disability whose life and work have been instrumental in my understanding of what it means to be a poet and a woman and a disabled person and a teacher and an activist. “I felt sort of on the sidelines,” Miles says in an interview conducted by Ruth Teiser and Catherine Harmon and published as “Teaching Poet: An Oral Autobiography.”
IV. JOSEPHINE MILES
Miles was the first woman to receive tenure (1947) in an English Department. She taught at the University of California, Berkeley, where she founded the Berkeley Poetry Review. She produced thirty-three books of poetry and literary criticism. In books such as The Vocabulary of Poetry: Three Studies (1946) and The Continuity of Poetic Language (1951), she traced the usage of words as they appeared in poems, and created charts to report which words were in vogue, out of vogue, or recurring.
Mobility was always an issue for Miles, who used canes, walkers and wheelchairs, though she did not address it directly in her poems until her final collection, titled Coming to Terms. She lived at the height of activism in Berkeley in the 1960s and 1970s, but she did not align with any one faction. When questioned about “women’s lib,” Miles said that “They [the feminists] didn’t ask me to be a part of this because, as I say, I think women always take the attitude toward me that if they’d lean on me, I’d fall over.”
In an earlier section of the interview, Miles describes the layout of her high school and how it contributed to her development as a poet:
The high school was divided by floors. The science and the languages were on the second floor. I had to climb up one flight of stairs. English and history were on the third floor, which was really very hard for me to get to. I could climb stairs then, with help, but it was awfully hard. So I postponed as much of English as possible and did a lot of languages and sciences—whatever I could on the second floor. I remember writing a poem at the end of my junior year which was called “To Dr. Edwards, On Going to the Third Floor.”
After high school, Miles encountered resistance when she wanted to attend UCLA. The dean of women advised against it.
The dean said...I’d have to ask too many favors, and she thought it was right that I should go to a small college where I could be protected. So I was weeping heavily as I went out the gate. The cop had let me in, and so this cop—I guess he was waving us on, and then he sort of stopped and said, “What’s wrong? Why are you crying?” I said, “Because the dean of women wouldn’t let me come here because I’d ask too many favors.” He said, “What favors do you have to ask?” The ones that were on my mind, of course, were very trivial. It was just a matter of registering. I said, “I’d have to stand in line to get registered, and I’d have to get permission to drive on campus.” He said, “You get somebody to stand in line for you, and I’ll let you drive on campus.”
Miles’ experiences predate the Disability Rights Movement. And while that movement brought changes to public policy, issues of access are not entirely resolved. Likewise, the attitude that the disabled “ask too many favors” remains prevalent. Perhaps the greatest achievement in 2008 toward access for the disabled happened in June when an appeals court ruled that the government must issue paper currency with Braille.
Beauty Is a Verb Page 12