Author: stevekuusisto

Poet, Essayist, Blogger, Journalist, Memoirist, Disability Rights Advocate, Public Speaker, Professor, Syracuse University

Disability and the Organized Lie

When I was a kid the boy next door used to throw sticks at me and call me “Blindo” and he even came up with a little song to embellish his measly act. By the age of five I understood how it would be: smug, able bodied cruelties would be run of the mill stuff henceforth. I was reminded of this yesterday while talking with disability studies scholar and blogger William Peace as he described the routine humiliations he experiences every time he goes to the airport and the airline personnel see his wheelchair.

 

I’m just now home from a trip to New York City where I experienced the disdain of several cab drivers–many cabbies hate guide dogs and will drive right by if I attempt to hail a taxi on my own. I have many gambits to thwart this–I get hotel doormen or strangers to flag a cab, instructing them to hold the door handle so the driver can’t hit the gas when he sees he’s been tricked. And I get in the cab, struggling with dog and bags (for no driver helps you anymore) and sit scrunched in intolerable yogic misery of a filthy car with a dog under my feet and endure the patent hostility of the driver.

 

I’ve lived with this patent hostility all my life. I know it like the floor plan of my boyhood house. I try like hell not to live in the world of disdainful assessments, shrug off the ugly stares and snarls–for there’s plenty of snarling as any person with a disability can tell you.

 

The shrugging is fairly easy, customary, a routine. But what really gets on my nerves is organized disability discrimination. On Friday last, while riding in a cab to Grand Central Station I was treated to a blurt of televised propaganda from the Bloomberg administration. If you haven’t been to New York lately you may not know that every cab now has a flat screen TV affixed to the back of the front seat. You’re forced to watch and listen to canned news and entertainment segments–local weather, “Jimmy Kimmel Live”–and then, Lo and Behold I was treated to a protectively false advertisement from the Mayor’s Office for People with Disabilities, outlining a new generation of accessible Nissan taxis soon to appear on the streets. What the casual viewer doesn’t know is that the Bloomberg administration has done everything it can to insure there will be very few accessible cabs and that riders with wheelchairs will experience long delays in calling for one.

 

Disability rights activists have argued that all new cabs should be accessible and I agree.

 

What’s worse than overt cruelty? Dishonesty.

 

Ars Poetica

Here come the old bullies from childhood, limping, unsteady. Me? I look younger than my years. What’s my secret? I don’t hate anybody. It’s the ointment of Jesus. You can’t buy it. I have extensive disdain for Henry Kissinger, Augusto Pinochet, Donald “war isn’t tidy” Rumsfeld. But I won’t waste a second hating them. I’ve got too much smoothing going on.

A Dog Day's Journey Into Night

It’s possible to think by talking with the right person you could together tell all the stories in the world. I spent yesterday in Greenwich Village with Arthur Krieck, musician, raconteur, and guide dog user. Arthur was born in the New York City in1950 to blind parents who as he puts it: “dressed like elegant grown ups every day” and “went out into the city commanding respect.” His mother was quite possibly the first woman to get a guide dog, receiving her first in 1955 back when the guide dog schools still operated on a military model–guide dog trainers were all former military men, clients were often veterans of WW II or Korea, and blind women need not apply. But his mother did apply and by the end of her life she had worked alongside 7 guide dogs, six of them from Guiding Eyes for the Blind. Her first guide was a boxer from The Seeing Eye named “Sugar”–back in the mid fifties several of the guide dog schools were turning out boxers and Arthur, who was five at the time recalls Sugar as both wonderfully loyal and affectionate.

 

“But my mom’s first dog was complicated for me,” he said. “Before Sugar came into our lives I was my mother’s guide. And then one day I realized everything had changed. We were in a grocery and I decided I wanted some OrangeAid. I still love OrangeAid to this day. Anyway, my mother wasn’t having it and told me she wasn’t buying any and I started whining and acting out the way kids do, and suddenly she said, ‘Sugar, forward’ and off she went down the street without me. She didn’t need me as her guide! I was shocked! My mother was independent! I was alone!”

 

Arthur, like me, was a partially sighted kid and wore glasses thick as padlocks, and so being alone on the street had to be a complex experience, especially in the Bronx. As he spoke I could see him navigating through domains of ambient light amid terrible glittering cars, his mother long gone, for guide dogs give their human partners tremendous speed and confidence.

 

Nowadays Arthur gets around the city with his own first guide dog, a cream colored yellow Lab named “Jillian” who is clearly in love with her man. She was also happy to make the acquaintance of my guide dog “Nira” who may very well be related to her as all the dogs at Guiding Eyes come from their Canine Development Center in Paterson, NY. They lay together under a table at Pete’s Tavern while we ate a long lunch and we talked about his parents generation of blind people and our own. I wondered if the dogs were telepathically communicating down on the floor.

 

We talked about the differences between his parents generation and our own. “Blind people could find jobs in New York in the fifties and sixties,” Arthur said. “My dad worked in a radio factory even though he was totally blind.” There was a lot of light industry in the city up until the ’70’s. When Reagan came it all went away. “My dad could alway s get a job in the old days,” Arthur noted. In our era 70% of the blind are unemployed.

 

We talked all day, covering guide dog history, cultural morays, politics, William Sloan Coffin (who Arthur knew at Riverside Church), life in the arts, and the joys of walking with our respective dogs. What a good day.

 

 

What's Wrong with Inspiration Porn?

Yesterday my friend and colleague Bill Peace (who blogs as “Bad Cripple”) wrote a post regarding a young man with a disability named Shane Burcaw who’s been in the national news because he’s been promoting himself as a motivational laugher. Mr. Burcaw has one hell of a disability, a condition called Spinal Muscular Atrophy, a genetic disease compromising the motor neurons of the spinal cord, affecting body movement, and often resulting in total paralysis and early death. Faced with these trials Mr. Burcaw has lately been blogging under the handle “Laughing at My Nightmare”. In addition he’s been using Twitter to garner support for an appearance on the “Ellen DeGeneris Show”.

Disability is the most complicated human subject because it involves cultural and medical calculations. I use the algebraic term because neither culture or medicine can answer what will make a life with disability livable, and in fact both will do a great deal to assure that it isn’t. Faced with the prospect of early death and living with serious paralysis a decision to adopt jaunty laughter as a motto is preferable to deleterious depression, and no one should doubt it.

Samuel Johnson said that “disease generally begins that equality which death completes” by which he means (among other things) that physical deterioration buries everyone equally. But this is only true in a philosophical sense and to believe it is a mistake. I am blind and of the solid middle class; I’ve a friend who’s blind and can’t find a job. I have a dental plan; he doesn’t. Which of us has the worse toothache?

I won’t tell Shane B not to laugh. But people with disabilities “out in the world” struggle with a cultural problem, one that’s familiar to people of color, women, and many other historically marginalized groups. I call this thing the “uppity complex” because white bigots have long used “uppity” to characterize black folks who dare to assert their rights and/or dignity. I walked out of a barber shop in Columbus, Ohio when a white customer, seeing the black mayor of the city on TV said: “He’s uppity!” The barber (also white) agreed and I told them to read a book some day and walked out. Oppressed groups are told in countless ways to remain servile, live on sufferance, and by all means stay cheerful. If you’re prevented from entering a restaurant because of your wheelchair or guide dog and by god, you show honest emotion or principled umbrage, then the ableists can say you probably deserve your crumby fate because you have a bad attitude.

That’s the real problem when you’re oppressed–you’re marked as deserving your crappy maltreatment because you weren’t laughing along with the bigots.

Shane Burcaw is laughing and why the hell not? I happen to know some very dark jokes about Stalin, told to me by Soviets. But there’s a cultural and political component to disability. Inspiration porn critiques the idea you can overcome your disability with a great attitude and a song in your heart or a really good shtick. The public, many of them more than a little bigoted about disability eats this up.

 

Green

Some mornings the abstract weight of the carbon-brain pulls and I feel like Herman Melville after a cup of tea. I hope to make the mind a fit offering for the blue light of morning, but I’m half of love, half of tears and I dress slowly, whispering to my dogs, entering the day carrying what poet Norman Dubie calls “the green sickness of middle age” though just now I can’t find the quote. I’m a green mind alone.

 

There’s no help for it, I feel tight, held together with pins and sealing wax. Yes I could cry at any moment.

 

Waiting for an Amtrak train in Syracuse this morning my small reveries were interrupted by a US Immigration cop who said: “Excuse me Sir, but are you a US citizen?” Of course I said yes, and he thanked me–no he didn’t need to see my identification. He asked everyone in the waiting area. He also boarded our train.

 

Is this a result of Boston? Yes. I sure could cry.

 

The green sickness of citizenship…

Ding Dong! Who's There?

Someone says the darkness is inside you. Another says its in your neighbor. But there is no darkness, only poverty and wanton ignorance. The latter can be seen in daylight: the crowing for death, vengeance fixated on ideology–violent demagogues, "Baby Hitlers" are all over the place. Ding Dong! "Who 's there?" "Ann Coulter" or "Michelle Bachmann" or "The Westboro Baptists".

via www.planet-of-the-blind.com

The terrible violence in Boston gives us a chance to ask "what kind of nation do we want to be?" Stand or roll, wave your stick. But ask.

Posted with Blogsy

Poetry: I Like What I Like

 

It begins with the mosaic standard from Ur: poets writing about poetry. Wallace Stevens puffed air into it like a moist uncle at a children’s party, and nowadays, what with 80% of American poets stuck in university elevators, most poems are about poetry. And the poets eat it up, like Hemingway’s hyena who tugs at his own dangling bits.

 

I don’t like poems about poetry and never have. I like poems about women, men, horses, sadnesses, longings, incipient comedies. “What about children?” you ask. I like poems about children too. Ah but what I like most is what Shelley called “unpremeditated art” for even a Romantic understands spirit does not reside in poems but in the skylark. 

 

What do I like? 

 

“O Wild West Wind, thou breath of Autumn’s being,

Thou from whose unseen presence the leaves dead

Are driven like ghosts from an enchanter fleeing,

 

Yellow, and black, and pale, and hectic red,

Pestilence-stricken multitudes!” (Percy Bysshe Shelley)

 

What do I like?

 

“Come With Me”

 

“Come with me into those things that have felt this

despair for so long–

Those removed Chevrolet wheels that howl with a 

terrible loneliness,

Lying on their backs in the cindery dirt, like man

drunk and naked,

Staggering off down a hill at night to drown at last in 

a pond.

Those shredded inner tubes abandoned on the 

shoulders of thruways,

Black and collapsed bodies that tried and burst, and

were left behind.

And those curly steel shavings, scattered about on

garage benches,

Sometimes still warm, gritty when we hold them,

Who have given up and blame everything on the

government;

And those roads in South Dakota that feel around in

the darkness.”   (Robert Bly)

 

 

What do I like?

 

“Always on the Train”

 

 

Writing poems about writing poems

is like rolling bales of hay in Texas.

Nothing but the horizon to stop you.

 

But consider the railroad’s edge of metal trash;

bird perches, miles of telephone wires.

What is so innocent as grazing cattle?

If you think about it, it turns into words.

 

Trash is so cheerful; flying up

like grasshoppers in front of the reaper.

The dust devil whirls it aloft; bronze candy wrappers,

squares of clear plastic–windows on a house of air.

 

Below the weedy edge in last year’s mat,

red and silver beer cans.

In bits blown equally everywhere,

the gaiety of flying paper

and the black high flung patterns of flocking birds.

 

(Ruth Stone)