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First let me say that anyone who has known discrimination also knows that going forward is steep. You have, after all, been told you don’t belong and worse, you’ve been instructed to get the hell out of town. As a blind person I’ve been in that spot throughout my life. Grade school teachers, high school principals, college professors, graduate school instructors–even a college president–have told me that because of my visual impairment I should go away. Perhaps the worst moment was in 1985 when I was enrolled in the Ph.D. program in English at the University of Iowa and two senior faculty along with the department chair told me I didn’t fit, that my need for extra time to complete assignments was ridiculous, and that I was a whiner.

This is a familiar story among people with disabilities. Even today (over 20 years after the passage if the ADA) only one in four college students with a disability will graduate. The unemployment rate for pwds is still estimated at 70%.

If you’re blind you can’t wait tables, drive a cab, or do most of the available jobs that are perfectly honorable. In 1985 all I could imagine was reading and writing vs. nothing. Nothing would mean living on Social Security Disability checks and moving in with my parents. If i embraced Nothing it would be an admission of failure so great that I would have to retire from my life, live as a kind of back room invalid, a prospect that terrified me since my mother was an alcoholic and slept all day with the shades drawn– would that be my life?

As it happened, I did move home and lived for quite some time in my parents’ basement. I had a beat up typewriter, an exercise bike, and a tape machine and that’s when I began listening to Bob Marley in earnest. I’d been gently listening to Bob ever since his first US album “Catch a Fire” appeared in 1973 but now I was soaking in his rare and utterly astonishing combination of rage and redemption, a combination you will not customarily find in the arts–a combo like milk and iodine. In poetry very few possess this–Yeats comes to mind and Nazim Hikmet, and Neruda. In popular music almost no one has Marley’s quality of the sword in the cloud–the rage is just rage or the milk is just syrup.

In my basement with the volume up I began working. Bob Marley’s voice and lyrics moved through me and I felt a half weightless sense of a pending disembodiment and then the authentic tears of deep deep discrimination salted with hope came to me. I could go on and on about the songs, the lyrics stitched from sublime wing shadows of the soul that fans the body, but it’s enough to say that Bob Marley remains for me the most authentic voice of “becoming” that I have ever heard.

 

Henry “Hoby” Wedler, a graduate student in chemistry at UC Davis, was one of 14 individuals honored Monday at the White House as Champions of Change for leading the way for people with disabilities in the fields of science, technology, engineering and math. See full story here.

Overcoming a learning disability to become a physician will actually help in being compassionate toward patients, writes a medical student of his struggle with a severe reading disability in CMAJ (Canadian Medical Association Journal).

See full story here.

“We all know that for years our state services have not been doing what they should be doing in this field,” the governor said in a news conference crowded with advocates and a number of people with disabilities, adding, “It’s an unfortunate microcosm of the deterioration of state government, in my opinion, over the past 15 years.”

See full story here.

 

By Andrea Scarpino

 

Once before I read Gregory Orr’s Concerning the Book That Is the Body of the Beloved. I was still in graduate school, and while I had experienced loss—one grandmother died when I was in kindergarten, and after that, several family friends—I didn’t know loss. Loss as an ache deep inside my chest. Loss as a constant friend. I didn’t know grieving’s most perilous moments. I didn’t know how grieving keeps the lost one close.

I read Concerning the Book That Is the Body of the Beloved and I liked it. I typed up several poems that I still keep taped above my desk even after two cross-country moves. But I didn’t yet know loss. I didn’t yet understand beloved.

Several weeks ago, I decided I needed to read the book again. I am mired in the end of the semester, in the stress that comes from grading and late papers and the management of panicked student emails. This is my least favorite time of the year—no teaching happens, no joy of sharing and muddling through ideas. Just anxiety and personality management and the deep sense that a system producing this much stress is flawed.

So I read Orr. The first poem of the collection ends, “That death not be oblivion.” Yes, I thought. I now know grief. I now know loss. I know what it means to think of death as oblivion, to long for another understanding. But there is something else in these poems besides loss. Hope, maybe. A belief that loss is not all there is to know. A belief in words, in poetry. A belief in the beauty of the world, even amidst loss. A belief in the beloved, in the body of the beloved.

In one poem, Orr writes:

 

            I’ve known grief. I don’t

            Take it lightly. Know how

            It gnaws your bones hollow

            So you’re afraid to stand up,

            Afraid the lightest wind will

            Knock you over, blow you away.

 

Yes, I thought, this is it, exactly. The way grief becomes bodily, the way it consumes everything. But the poem doesn’t end there; it continues:

 

            But maybe the wind is supposed

            To blow right through you;

            Maybe you’re a tree in winter

            And your poem translates

            That cold wind into song.

 

A tree in winter, I thought. Yes, I would like that. I would like to translate cold wind into song. I would like to feel the cold wind moving through me. That way, loss doesn’t win. Grieving isn’t all there is. It is one thing, a cold wind. But it doesn’t get to be all the wind. It doesn’t get to be all the seasons.

And isn’t this one of poetry’s greatest gifts? That it teaches us to understand something as large and complicated as loss in entirely new ways. That it helps us to remember beauty. To remember that loss is “the place/ Where beauty starts. Where/ The heart understands/ For the first time/ The nature of its journey.”

I wasn’t ready for Orr the first time I read his book. I thought the words were lovely, the movement from one poem to the next an important study. I liked the poems. I felt something important happening in them. But now that I know loss—an indelible marker—now that I know beauty, I am reading an entirely new book. And it is changing me, changing my thinking—hopefully for the better. 

 

I want to tell a small story. In ancient times when the wind spoke to men and women it also spoke to dogs. When an ancient dog heard the wind he heard everything. I believe this is not customarily understood. Anthropologists say that dogs came to the human realm because we were throwing out the bones. But you can’t understand a creature just by its appetites. Dogs have always understood that the air is enchanted all around us. They have always understood the telegraphy of swallows crossing and recrossing the sunbeams between trees. Like an arrow they came just to tell us the good news. And dogs know the darkening tunnel inside the wind. I tell you they know who lives there. That is what you hear when a dog is dreaming. I tell you, dogs pour out in choirs their dreamy souls. 

 

 

In 2002, a special needs student named Andre McCollins was allegedly strapped down and electrocuted for hours, leaving him with permanent brain damage, all because he refused to take off his jacket. The people torturing Andre were officials at his school. You can watch what happened on video. The video was shot at a Massachusetts school for special needs kids called the Judge Rotenberg Center (JRC). Gregory Miller used to be a teacher there, and he says electrocuting kids as punishment is extremely common — even for minor offenses like raising your hand to go to the bathroom. “A non-verbal, nearly blind girl with cerebral palsy was shocked for attempts to hold a staff member’s hand — her attempts to communicate and to be loved,” Gregory says. Gregory desperately wants to help the kids at the JRC —that’s why he started a petition onChange.org demanding that the JRC stop using electroshock to punish kids. Click here to add your name. Gregory says the JRC’s founder created electroshock devices which are even stronger than police stun guns to punish students for bad behavior. An official at the United Nations said that using these devices on children is considered torture. According to theBoston Globe, the JRC’s founder resigned after being charged with misleading a grand jury by destroying video footage of other students being shocked. Gregory believes that if thousands of people sign his petition, his former bosses will capitulate in the intense pressure generated by a national spotlight. Click here to sign Gregory’s petition demanding that the JRC immediately cease its practice of punishing special needs kids with electroshock devices. Thanks for being a change-maker, – Jon and theChange.org team

Thanks to Chris B whose blog Through Alien Eyes is a thoughtful and lovely place for disability reflections. He heard me speak recently on disability and poetry at The Ohio State University and has written a kindly analysis of my presentation.

When I am In New York City with my guide dog the happiness of the city is mine. Swiss tourists want to tell me about their Labradors at home. Doormen call out as we walk by. It's a different city for us, communal, improbably humane even at moments ecstatic. This must go into the living poem of physical difference.

So too the damages and the ugliness. What I like to call the mercenary labeling of ableism. People with disabilities experience the crackling, unspoken diminishing glares of strangers. Until they are spoken. Then the day tilts like a bad amusement park ride. This must also go into the living poem of physical difference.

What the guide dog schools won’t tell you, or by turns, tell you imperfectly, is that guide dog teams will encounter public incomprehension and outright discrimination as they walk around. In my case this discovery came 18 years agoin New York City when I tried to get into a cab and the driver began screaming expletives. Despite this I got into the car. His language and mine became an instant study in art for all the ingredients of creativity were present: tension, incomprehension, passion, and spontaneity.

 

Sitting stern as a tree in the backseat, I told him that the law permits guide dogs for the blind in all taxis–in fact guide dogs are allowed everywhere. Hell, I even had an ID card from the school with my picture and the dog’s picture and all the appropriate legalese. But the driver, my driver, did not believe in the bravery or happiness of others. He began revving his engine and revving up his shouting.

 

What can you do? My driver hated me and my dog and was refusing to budge. I was reciting the law. Oh the godforsaken wilderness of human rage. When you have a disability every moment of discrimination evokes all the others: you’re again the boy who was told he couldn’t play with others, couldn’t go to school with them, sat alone in a room. This must also go into the living poem of physical difference.

 

Then again, the shy, unanticipated joy: in Central Park a man says to me, "You can't tell, but I am the statue of liberty." "Me too," I say.

You just gotta love Ed Sanders! 

I found the following story on the NPR iPad App:

http://www.npr.org/2012/05/05/152029486/fug-you-the-wild-life-of-ed-sanders?sc=ipad&f=1008

'Fug You': The Wild Life Of Ed Sanders
by Jon Kalish
NPR – May 5, 2012
Ed Sanders likes to refer to himself as the only beatnik who can yodel. A countercultural icon, he co-founded the raunchy, avant-garde rock band The Fugs and was instrumental in the Youth International Party — commonly called the Yippies.
The 72-year-old is also a classical scholar who wrote a best-selling book about the Manson family. His latest book is a memoir, Fug You, about life on New York's Lower East Side in the 1960s — a slum, back when Sanders lived there.
"It didn't take much money to live," Claudia Dreifus recalls. "You could live poor, you could have a lot of fun. People didn't need a lot of stuff. And when rents were cheap, all kinds of creative forces ended up here."
Dreifus is now a science writer for The New York Times, but she cut her teeth at a counterculture newspaper called The East Village Other. She calls Sanders, who was a neighborhood fixture and fellow writer at The Other, a hero.
"That word is used loosely and stupidly these days," she says, "but he really was. He showed us how to be free … by showing us there was a way to say what you wanted to say."
Sanders put out a literary journal with a pretty unprintable title. He hand-cranked it on a now archaic bit of technology called a mimeograph machine.
"I did everything myself," he says. "I drew all the stencils, I made … what I called glyphs, which were based on Egyptian hieroglyphs, and I carried on a big correspondence with writers to get manuscripts. And it just seemed like turning that handle was
a kind of religious experience. I don't know, it seemed to work. I put out all these magazines that I gave away free."
He gave them to writers and artists, some of whom would soon gain fame in the underground comic book scene. And he opened the Peace Eye bookstore, near Tompkins Square Park, where he recalls The Fugs drawing crowds of thousands to free concerts.
"The bookstore became pretty famous. It was the stopping off point for all visiting librarians and professors because I had a lot of well-known writers hanging out there — William Burroughs, Allen Ginsberg," Sanders says.
In his memoir, Sanders refers to the Lower East Side as a "little zone of revolution." He and several other founders of the Yippies lived there, and played key roles in the anti-war movement's "exorcism" of the Pentagon and the protests at the 1968 Democratic
Convention in Chicago.
Sanders says much of the political and cultural activity of the era was fomented on the Lower East Side. In addition to political activists, writers and artists, the neighborhood was full of musicians like Peter Stampfel, a member of both The Fugs and The
Holy Modal Rounders.
"The main thing about the scene back then was that there was this amazing feeling that something wonderful and amazing was going to happen inevitably," Stampfel says.
But the '60s faded into the '70s, and Sanders disbanded The Fugs. He went on to write The Family, about the Manson family, and release a solo record. He also decided to leave the Lower East Side.
"We saw a couple of people murdered in the streets outside of our house," Sanders says. It was time to go.
Eventually Sanders landed in Woodstock, in upstate New York. His modest house is crammed with books, tapes and his wife Miriam's mineral collection. A two-car garage that once served as his writing studio is now packed floor to ceiling with banker's boxes
full of files and photographs; Sanders jokes about appearing on a reality show about hoarders.
Among the collections is Sanders' archive devoted to The Fugs. He takes out a leaflet for one of the band's shows, advertising a 1965 extravaganza called "A Night of Napalm." Sanders describes it as "songs against the war, rock 'n roll bomb shrieks, heavy
metal orgasms. Watch all The Fugs die in a napalm raid."
He's received offers for the archive from several major universities, but for the time being, he's going to hold on to what is clearly a valuable record of a pivotal chapter in American history. "It was just a very fervent, fermenting era," Sanders says.
"The surge of creativity and movies and dance and theater and poetry and literature was too big to stop."
And Ed Sanders was right at the heart of it. [Copyright 2012 National Public Radio]
To learn more about the NPR iPad app, go to

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Stephen Kuusisto 

Director

The Renee Crown University Honors Program 

University Professor

Syracuse University

Thanks to Alan Greenblatt of NPR for writing today about the issue of Chen Guancheng's blindness and the overtly dynamic positioning of the "b" word in the press coverage of the Chinese dissident. Greenblatt's piece, entitled "A Factor in a Much Larger Life: Debating Chen Guancheng's Blindness" does a nice job of arguing that people with disabilities are not, in fact defined by those disabilities, and I'm glad to have been asked for some comments on the subject. Kudos to the folks at NPR for bucking the media's fixation on the blindness as a determinant symbol of what is indeed a much larger life.