Year: 2011

Chronic Failure

RX

“On her medical record, she officially became a treatment failure—not someone whom the treatment failed, but someone who had failed the treatment.” So writes Alan Shapiro in Vigil, his memoir of his sister’s death from cancer. A treatment failure. A failure.

Terminal illnesses do that to us, make us feel like failures. So do chronic conditions. We fail the doctors who work so hard to cure us. We come back with symptoms they didn’t expect us to have. Our bodies defy their logic. “This pill works for everyone,” a doctor said to me when I returned to her office telling her it didn’t work for me. “You shouldn’t be losing your hair,” another doctor said when I arrived in his office with a bag full of my hair.

In my teens, I had ovarian cysts. By age 20, I had already had three mammograms. At 30, I was told I was entering perimenopause. These facts don’t make sense. Not to me. Not to my doctors. I have failed treatment after treatment. I continue to fail. And I think of Steve Jobs, who lived with cancer seven years longer than initially expected. But who, in the end, still became “someone who failed the treatment.”

Of course, it’s really the case that medicine is failing us, not the other way around. The entire structure of our medical system is failing us. The entire structure of our society that pretends we’re not all temporarily able-bodied, that pretends we won’t all, at some point or another, experience disability, temporary or otherwise. I know that.

But still, today, I feel failure. My body hurts. I lay awake last night in bed and felt pain. My feet are bloated, my hands. My hormonal system is failing me—situation hormone-all-fucked-up. I know this isn’t my fault. I want to be free from pain—that doesn’t seem like too much to ask—and in the absence of relief from medicine, what am I to make of things? 

 

 

Andrea Scarpino  is a poet and essayist and a frequent contributor to POTB.

The Vortex of Disability

One day you are feeling fine, even festive. You're going to put on your "spring and all" tattered chemise and dance in the kitchen. Then in the time it takes for a cirrus cloud to cross the sun, you feel like an inert thing, some mossy rock for instance. The disability tornado has got you. One minute you were minding your own business, then you're in the funnel of nameless nowhere particles. This is disability. The average able bodied person couldn't make it in this world. Or they'd learn. The worst thing in your day is not the red light that stopped your car. Disabilities represent the anarchy of indiscrete substances. Here comes your grandmother, disguised as a wolf, telling you nature is unfair.  

Blind Photographers Share Their World

The art and Heart of Blind Photorgraphers

(Associated Press)
October 4, 2011

MEXICO CITY, MEXICO– [Excerpt provided by Inclusion Daily] Rodrigo Telon Yucute focuses on the sound of the voices, raises a camera and snaps off a shot, capturing an image of a couple laughing as they sit on a yellow park bench.

He shows it to the subjects, but cannot see it himself. The photographer-in-training has been blind for nearly 30 years.

Telon was a 22-year-old guerrilla fighter in his home country of Guatemala when a land mine exploded beneath him, ripping apart his left forearm and destroying his eyesight.

After years of rehabilitation, he learned Braille and how to use a white cane to get around. Now 51, Telon is fulfilling his longtime wish of taking photographs.

He is one of 30 visually impaired or blind people learning photography with the help of the Mexico City foundation Ojos Que Sienten, or Eyes That Feel.

Photography doesn't come easy. Beginners often leave out the heads or legs of their subject, but with practice they learn to improve their images. In a sense, they're photographing the sounds they hear or the smells they sense.

Entire article:
Mexico City blind photographer share their world
http://tinyurl.com/3zlukut

For more about blind photography visit: http://blog.blindphotographers.org/

Swedish poet Tomas Transtromer wins Nobel Prize for Literature – USATODAY.com

Check out this article that I saw in USA TODAY’s iPhone application.

Swedish poet Tomas Transtromer wins Nobel Prize for Literature

http://usat.ly/rs1ZjL

To view the story, click the link or paste it into your browser.

To learn more about USA TODAY for iPhone and download, visit: http://usatoday.com/iphone/

Sent from my iPhone

Essay on the Politics of English Clarity and Them Folk with Disabilities

 

One can read theories about stigma, or about the cultural formations of difference. These are necessary and instructive but as I grow older I can’t help but feel our efforts to understand disability as a marginalized human category cannot fully bear fruit without accessing the politics of clarity–an Orwellian thought to be sure but more evident to me now. Do not misread me: I believe in talking back to “the man” and believe in the ardor of revisioning dominant or pejorative narratives, how could a so called “disability” writer be otherwise? Yet I think that the rhetorics of opposition concentrate and then recaste difference until the one who cries out is nearly exhausted with effort. Here I think of James Baldwin’s assertion: “A child cannot be taught by anyone who despises him, and a child cannot afford to be fooled.” That there are those who despise people with disabilities seems evident even some twenty years after the passage of the Americans with Disabilities Act. That people with disabilities cannot afford to be fooled is a matter for the politics of clarity. 

The post-human age may yet give us some new places to roll or stand. The evolutions of cyborgian prostheses will likely help to break down the “normative-abnormal” dichotomy that has dominated both the theory and reality of disablement. Aimee Mullins and Oscar Pistorias have redirected the fashion industry which will inevitably embrace the postnormative. This is all too the good. Yet I think it’s a safe bet that while prosthesis may become no different than the brand of automobile one drives, invisible disabilities or those that produce a public misapprehension about intellectual capacity (blindness, apparent deafness) will remain problematic in the town square. While physical difference can become fashionable, disablement as a capacity of mind is more difficult for the public nerve. In Western tradition we tend to believe in the mind as a substance rather than an essence, we cherish thought that is fast and muscular but denigrate neuroatypical thinking. We believe in “mind over matter” and imagine that those with learning disabilities or who are on the autism spectrum are simply not doing enough pushups. 

 

As I’ve already said, a person with a disability cannot afford to be fooled. The nominative and representational characteristics of invisible disability (or any condition that challenges dominant models of identity and attention) will require fresh language in a new century. Enter Orwell. The politics of language demand precision. In one of the best essays in English on the subject of language and physical difference, Nancy Mairs describes how she arrived at the decision to call herself a cripple: 

 “"Cripple" seems to me a clean word, straightforward and precise. It has an honorable history, having made its first appearance in the Lindisfarne Gospel in the tenth century. As a lover of words, I like the accuracy with which it describes my condition: I have lost the full use of my limbs. "Disabled," by contrast, suggests any incapacity, physical or mental. And I certainly don't like "handicapped," which implies that I have deliberately been put at a disadvantage, by whom I can't imagine (my God is not a Handicapper General), in order to equalize chances in the great race of life. These words seem to me to be moving away from my condition, to be widening the gap between word and reality. Most remote is the recently coined euphemism "differently abled," which partakes of the same semantic hopefulness that transformed countries from "undeveloped" to "underdeveloped," then to "less developed," and finally to "developing" nations. People have continued to starve in those countries during the shift. Some realities do not obey the dictates of language.” 

Mairs writes famously, “as a cripple, I swagger” a position that’s unassailable given the economic abjection in “disability”–that Victorian term still tied to the factories of the Industrial Revolution–it was Karl Marx’s noun for those who lacked the economic utility to be useful workers. Surely “disability” does not swagger. Moreover the word carries no degree or standard of completeness. This is its signature problem for if a cripple is entire, singular, and freed from oppositional enactments with ability, a person with a disability is trapped in a triangle of etceteras–unable, etc; incapable, etc; accordingly, vaguely sub-Cartesian–sans thought, etc. Disability disorganizes conduct and places physicality outside of possibility. So the term has less to do with opposition to normal activity and a good deal to do with a prejudicial conspiracy against the mind. Just as nothing in nature is truly broken, just as evolution defies the normal, there is no proper categorical or taxonomic position that can hypostatize variance or give it a name.    

As I’ve said more than once I prefer “world citizen” to disability. I prefer omnimodal essences and motive power.

 

S.K. 

 

Disability, Children, and Human Rights

As a blind child I was treated poorly in public schools on more than one occasion. Stories like this continue to outrage me. Abuses of all children occur in our schools but it's clear from the national evidence that kids with autism are targets for the Dickensian nut jobs who are allowed to enter classrooms across the country. S.K.  

 

Parent Advocates Confront District About Vinegar, Soap, And Exercise Punishments
(Katy Times)
October 3, 2011

KATY, TEXAS– [Excerpt provided by Inclusion Daily Express] Residents concerned about the treatment of special education students in Katy Independent School District asked for the board's consideration of an alleged case of abuse at Exley Elementary as evidence for a new plan of treatment of special education students. 

Leslie Phillips, board member of the National Autism Association and Katy Autism Support, described the dangers of using aversive intervention. 

"The vast majority of education and mental health professionals agree that these techniques are not therapeutic, evidence-based practices," Phillips said. "They are not an effective means to calm or teach children, and . . . cause loss of skills or regression." 

Phillips described the practices as overexertion on a treadmill and putting cotton balls soaked in vinegar and soap in the mouth of nonverbal, autistic students.

Superintendent Alton Frailey responded to the comments, describing the case in question as "not something we want to have in our school district."

Entire article:
'Aversive' procedures ruffle feathers in KISD
http://tinyurl.com/3gjofax
Related:
School uses vinegar to discipline children (The Imperfect Parent)
http://tinyurl.com/3clamzy


 

Disability Employment Proclamation from the White House

The White House

THE WHITE HOUSE Office of the Press Secretary

For Immediate Release October 3, 2011

 

NATIONAL DISABILITY EMPLOYMENT AWARENESS MONTH, 2011 BY THE PRESIDENT OF THE UNITED STATES OF AMERICA;   A PROCLAMATION 

 

Utilizing the talents of all Americans is essential for our Nation to out-innovate, out-educate, and out-build the rest of the world. During National Disability Employment Awareness Month, we recognize the skills that people with disabilities bring to our workforce, and we rededicate ourselves to improving employment opportunities in both the public and private sectors for those living with disabilities.

 

More than 20 years after the signing of the Americans with Disabilities Act, individuals with disabilities, including injured veterans, are making immeasurable contributions to workplaces across our country. Unfortunately, the unemployment rate for people with disabilities remains too high — nearly double the rate of people without disabilities — and reversing this trend is crucial.

 

In both the public and private sectors, we can increase employment opportunities for Americans with disabilities. My Administration is promoting competitive, integrated employment for persons with disabilities and the elderly through the Centers for Medicare and Medicaid Services. Last year, we also recommitted to making the Federal Government a model employer for people living with disabilities. Agencies are working harder than ever to promote equal hiring practices and increase retention, while also expanding internships, fellowships, and training opportunities.

 

We know education is the foundation on which all children can build bright and successful futures, and no child should be limited in his or her desire to learn. In September, we announced the final regulations under the Individuals with Disabilities Education Act, Part C, to improve services and outcomes for infants and toddlers with disabilities and their families during the critical years before kindergarten. The educational environments we are creating for children with disabilities will ensure they are better prepared to succeed in the classroom and later in the workplace, helping position our Nation to lead in the 21st century.

 

Work accessibility is just as vital to success as ensuring educational and hiring opportunities. Public transportation is a service that should be available to all Americans, and rules instated this year by the Department of Transportation require new rail construction or renovations to ensure accessibility to persons with disabilities. We are also improving our compliance with Section 508 of the Rehabilitation Act to make Federal agencies' electronic and information technology more accessible to individuals with disabilities. This will ensure all applicants have equal opportunity to apply for jobs, and it will allow Federal employees to better use technology at work.

 

To win the future, we must harness the power of our Nation's richest resource — our people. Americans with disabilities, like all Americans, are entitled to not only full participation in our society, but also full opportunity in our society. Their talents and contributions are vital to the strength of our Nation's workforce and our future prosperity. Together, we can ensure persons living with disabilities have equal access to employment, and to inclusive, supportive workplaces.

 

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim October 2011 as National Disability Employment Awareness Month. I urge all Americans to embrace the talents and skills that individuals with disabilities bring to our workplaces and communities and to promote the right to equal employment opportunity for all people.

 

IN WITNESS WHEREOF, I have hereunto set my hand this third day of October, in the year of our Lord two thousand eleven, and of the Independence of the United States of America the two hundred and thirty-sixth.

 

BARACK OBAMA

 # # #

 

Recipe for Voice

 

In the old haiku, geese fly through snow, directed by their voices. Now add Gandhi:

“The human voice can never reach the distance that is covered by the still small voice of conscience.” 

Stir in Virginia Woolf: “Masterpieces are not single and solitary births; they are the outcome of many years of thinking in common, of thinking by the body of the people, so that the experience of the mass is behind the single voice.” 

Pour in Audre Lorde: “I write for those women who do not speak, for those who do not have a voice because they were so terrified, because we are taught to respect fear more than ourselves. We've been taught that silence would save us, but it won't.” 

A jigger of Neruda: ”I grew up in this town, my poetry was born between the hill and the river, it took its voice from the rain, and like the timber, it steeped itself in the forests.”

A splash of Marianne Faithfull: “The voice of God, if you must know, is Aretha Franklin’s.”

 

S.K.