Author: stevekuusisto

Los Angeles

By Andrea Scarpino

I would like to write about love. Instead—

This weekend, Dr. George Tiller, one of the only doctors in the country who performed late-term abortions, was murdered (presumably by an anti-choice activist) in his church. In his place of worship. Tiller suffered decades of violence as a result of his commitment to women’s health and performing legal medical procedures, including a prior shooting, a bombing at his clinic and vandalism. He also suffered decades of legal abuse, fighting lawsuits brought against him by abortion opponents. I would have to imagine he also suffered decades of emotional abuse and stress. He was a father. A grandfather.

I am a longtime activist. I’ve walked the perimeters of women’s health clinics when they were under attack from anti-choice protestors. I’ve escorted women through picket lines so that they could keep their appointments inside the clinic. I haven’t done as much as I could have to protect women’s right to choose an abortion, but I’ve done enough to have had many hours of contact with people who disagree with abortion. And I’ve never seen as much hatred and vitriol from anyone—anti-American organizations included—as I’ve seen from certain factions of the anti-choice movement.

Whether or not you agree with abortion, whether or not you think it’s murder, whether or not you grapple with some of its troubling implications, such as its use to choose a baby without disability or with the “right” sex, whether or not—I would hope we could agree that murdering doctors in their place of worship, a place that is supposed to be holy and kind and full of God’s love, is the opposite of supporting life. The opposite of love.

I didn’t know Dr. Tiller and I don’t know why he chose to continue his practice even through decades of abuse and violence. But I do know that hatred cannot be allowed to win this battle. His murder cannot be his legacy. Instead, we must remember that he continued his work in the face of hatred, personal hardship and violence. That he refused to let hatred slow him down. That he took incredible personal risk to ensure women had access to a legal medical procedure. That his legacy is the women he helped, his compassion, his dedication, his many kindnesses. That his legacy is love.

Andrea Scarpino is the west coast Bureau Chief of POTB. Visit her at: www.andreascarpino.com

 

A recent article in Newsweek by Steven Taylor of Syracuse University’s excellent disability studies program highlights the experiences of conscientious objectors during world war II–the “C.O.s” were often housed in mental health facilities and they reported on the squalid conditions they encountered. Taylor’s piece points out the coincidental and aligning features of today’s mental health conditions at many of our nation’s medieval facilities. This excerpt and link are from Inclusion Daily Express:

Steven J. Taylor: Conscientious Objectors Of WWII
(Newsweek)
May 29, 2009
SYRACUSE, NEW YORK– [Excerpt] “Mental Hospitals Are Again Under Fire” read an editorial describing critiques of state institutions for people with psychiatric, developmental, and other disabilities. It was published in a leading mental health journal in 1946. It was written in response to a long series of exposés of state institutions across the country. The editorial acknowledged that the psychiatric establishment had tolerated squalid conditions and brutality at the nation’s institutions for too long. The exposés had been brought about through the efforts of young conscientious objectors (COs) during what is widely regarded as America’s “good war.”

The editorial could have been written yesterday. On May 17, a group of self-described mental health clients and psychiatric survivors staged a rally at the annual meeting of the American Psychiatric Association in San Francisco protesting medical coercion and forced treatment. Ninety-nine disability rights activists were arrested at a Capitol Hill protest on April 28 urging passage of federal legislation guaranteeing the right to receive services in the community rather than nursing homes and other institutions. Groups around the country have endorsed the right to community living for people with intellectual and developmental disabilities.

Today’s struggles give us a chance to recall the heroic works of the conscientious objectors of World War II. About 12,000 men performed civilian public service as an alternative to serving in the military during that war. Initially, they labored at forest, park, and soil conservation camps located in remote areas. Eventually, the Selective Service approved the establishment of “detached” units at which COs served as human guinea pigs in medical experiments, worked on public health projects in the rural south, and performed other forms of service. Approximately 3,000 men were assigned to work at mental hospitals and training schools that faced severe labor shortages during the war.

Entire article:
Conscientious Objectors of WWII
http://www.inclusiondaily.com/news/2009/red/0529d.htm

The photo above was taken by the University of Iowa and like most images of blind persons you will discern if you look closely that I am in effect looking at nothing. I’m doing a good job of it. This is because I am a poet and as Wallace Stevens once famously said, poets are concerned with “the nothing that is not there and the nothing that is.” I am looking at the nothing that “is” and with all due respect to Bill Clinton, there is really only one meaning to “is” and its a transitive meaning–or to put the matter more directly: even a blind person knows that not seeing is a form of seeing. I am seeing expectations and ideas. All ideas are “in vitro” and they are “the nothing that is” and I am about to become the father of an idea in this photo. 

Go find a family snapshot–the one where you have those red eyes as you stare at your birthday cake back in 1965. You are about to become the father or mother of an idea. Your face has a wilful suspension about its features, a matter that’s hard to describe but there it is. You are captured in a moment of belief in possibilities. You are temporarily freed from disappointments. You think the future might be better than the past even if the past is nothing more than life as it was lived just five minutes ago.

Five minutes ago you were playing a game called “pinch and ouch” with your cousin and it wasn’t going so well. Or perhaps (as in the photo above) you were a grown up in the photograph and accordingly you were having a stupid meeting five minutes ago and that meeting was entitled “pinch and ouch” and you know darned well that the secret of enduring such moments has to do with the preservation of the soul. And now someone has taken a photo of you and Lo! you still believe in something though it can’t be seen exactly. The articles of belief are always inexact and rich like flying horses and bread that floats on the water and doors that open in mid air.

Pinch and ouch is behind you. Just look.

S.K.

Years ago (precisely 23) I heard Kurt Vonnegut Jr. give a talk in which he suggested that there were only three kinds of plots for a story: the first, he said, involved a person of great success or good fortune who steps on a cosmic banana peel and falls horribly into tragic misery; the second was totally the reverse–the “Cinderella” plot wherein a “wretch” gains good fortune. The last was a yo-yo affair in which the main character goes up and down and down and up–with lots of variants.  

Although I adore Mr. Vonnegut’s work and treasure his memory I think no one should wholly believe this, especially if you plan on writing creative prose. Plot may be materially limited to the scenarios above but a great piece of writing isn’t driven by plot any more than your car is driven by its tires. In short: plot is simply the incidental journey. Or to put this another way: the frame of the story is the thing that matters.

This is especially true in the fourth genre known as creative nonfiction. The non-fictionist has to write about things that have happened either to the writer or to other people. Sometimes he or she must write about the globe and its hurricanes or about nations afflicted by war. Whatever the subject the thing that matters is what the writer makes of the incidents and not the incidents themselves. In the writing trade this is called dramatic or comic irony. What does the narrator know “now” as opposed to yesterday or a decade ago or even ten minutes ago?  The cultivation of this irony is the literary variant of what Daniel Goleman has called “emotional intelligence”. It is a tricky craft. Done poorly it sounds like Dorothy at the end of “The Wizard of Oz” who tells us she’s learned never to search for happiness beyond her own backyard. Done correctly the voice of the writer assumes a quiet and confident quality–a thing that is often delicate and emotionally quiescent.

Here is a lovely example of the technique from Christopher Buckley’s moving memoir “Losing Mum and Pup”–an autobiographical treatment of his famous parents’ complex marriage and their final challenging years. Its a book that many with ageing parents will take to heart and for those of us who have lost our parents its a superb paradigm of  narrative quiescence to say the least. In sum: all too often there is no good or bad fortune in real life save what we imagine in our times alone. I’ll end with Christopher Buckley: 

“Yesterday, I was driving behind a belchy city bus on the way back from the grocery store and suddenly found myself thinking (not for the first time) about whether Pup is in heaven. He spent so much of his life on his knees in church, so much of his life doing the right thing by so many people, a million acts of generosity. I’m–I shouldn’t use the word–dying of curiosity: How did it turn out, Pup? Were you right after all? Is there a heaven? Is Mum there with you? (Grumbling, almost certainly, about the “inedible food.”) And if there is a heaven and you are in it, are you thinking, Poor Christo –he’s not going to make it. And is Mum saying, Bill, you have got to speak to that absurd creature at the Gates and tell him he’s got to admit Christopher. It’s too ridiculous for words.”

“Even in my dreams, they’re looking after me. So perhaps one is never really an orphan after all.”  

S.K.

Thirty years ago when I was in college we talked about Dr. Rorschach’s famous test. Our professor held ink blots printed on card stock. He resembled someone trying to sell magazine subscriptions. “What do you see?” he said, as if the mystery was deep, so deep that no singular mortal could furnish even a weak answer.

Ah but we were the last students of “the sixties” and accordingly we were by turns truculent and irreverent. One guy shouted that the figure before us looked like shit. “We all know its shit,” he said. “Freud said everything’s shit: money is shit, death is shit. So its just shit.”

We laughed. The professor laughed. He was kind of hip. He was an ageing athlete. “Okay,” he said. “Its shit. But what kind of shit?”

“Well,” said a woman who was famous for stealing the U.S. flag from the college’s flag pole, often in broad daylight. “Its like the shit of Mad King George III–we’re just peering into a 20th century version of the chamber pot.”

That pretty well ended the discussion. The professor became self-consciously engaged in defending 20th century psychology and back in those days if you were over 30 and forced to defend something you were toast. Those were uncomplicated times. 

We were amateur phenomenologists back then.

But I took a walk this morning with my guide dog Nira. As I said yesterday my left eye has been restored from total blindness to a simulacrum of sight and as we strolled down the sidewalk birds were rising out of the grass –birds that were difficult to identify and which I may never be able to name–birds that flew like red and black ink blots and rose and rose before us as we went. 

Unnamed though they might be, the flickering of wings gave up small sparks of reflected sunlight.  One incognito bird was half gold, half the green of the tropics before she vanished in the branches of a sycamore.

I laughed then. Thought of Rorschach. Thought of  the professor now dead who had hoped to teach us that some shit is worth something more than casual analysis.

“Those bird, NIra,” I said, “those birds are some lively, psychedelic shit.”

S.K.

I have been absent from our blog for the past five days because on Friday, May 22 I underwent cataract surgery at the University of Iowa's Ophthalmology Clinic. My surgery was performed by Dr. Tom Oetting who is a widely esteemed cataract specialist. He removed a cataract from my left eye which, post-surgery he allowed was one of the worst he's ever seen. It looked like a black jelly bean all curled up in its little plastic container. My wife Connie couldn't bear to look at it and though he offered it as a memento we urged Dr. Oetting to keep the thing. Connie suggested helpfully that he might want to put it beside the brain marked "Abby Normal."

In an age when having cataract surgery is as common as having one's teeth cleaned I should say that Dr. Oetting was indeed playing with Abby Normal. I believe its safe to say that a considerable majority of American cataract surgeons view their craft as a utility for the restoration of perfect sight. Ophthalmology departments drive this idea mercilessly by means of statistics: "We have restored 20/20 vision in 98 % of our cataract surgeries" is a phrase one often hears. Many cataract specialists will view a procedure as a failure if the patient only has 20/30 vision post-surgery. (If you aren't familiar with the numbers, 20/30 vision is correctable with glasses or contact lenses and possessing such trappings a person could conceivably play major league baseball.)  (Alright, I take that back. Very few people can play major league baseball because hitting a fastball is harder than driving a cement truck through the eye of a cow. So I'm wrong with the baseball analogy. But you get my point.)

In my case our hope was that we could restore 20/200 vision in the eye–a level of seeing that's known as "legally blind". When we say that phrase it means that 20/200 is what you can see "with" your glasses. (Lots of people will say that they're legally blind "without" their glasses but that's simply untrue. If your vision is correctable by means of glasses or contact lenses then you are not legally blind even if without your specs you're helpless.)

The University of Iowa's Ophthalmology clinic is a different kind of place. The physicians at Iowa believe that giving someone 20/200 vision is a huge improvement over having next to nothing. And indeed that's what I was "down to" in my left eye. I was barely able to detect hand motion.

Although I had cataracts in both eyes we chose to operate on the left one first because it was always my "better" eye–in boyhood it was the eye that allowed me to see things up close.

Dr. Oetting wasn't doubtful or pessimistic about our chances of success. While that's certainly a good thing when contemplating surgery I had been to see several cataract specialists over a fifteen year span who were not sanguine about the potential outcome. This is because I have what's called "retinopathy of prematurity" and accordingly I have scarred and mal-formed retinas. Any surgical procedure carries with it the risk of unintended outcomes and with ROP one such outcome was the possibility that my retina might detach–a retina that would be incredibly difficult to repair.

So I represented a tough surgical challenge and yes I was the kind of challenge that lots of ophthalmology departments wouldn't bother with. Even if we were successful I wouldn't improve that bell curve.

But the difference between no vision and having legal blindness is an immense chasm if you will. A legally blind person can read magnified print, use a hand held telescope to read a street sign, see the faces of his loved ones, watch television if he's sitting close to the screen. Over the past 8 years I had not been able to do any of these things. I had put them aside like the other memories of youth. That's what one does. I was more blind than I used to be and that, as they say, "was that".

Dr. Oetting removed the cataract for sure and  five days later I'm seeing some amazing stuff even though the eye is swollen and I have 12 stitches around the implanted lens. I saw my neighbor across the street waving one of those plastic bubble wands for his 4 year old daughter and I watched as she tried to catch those soap bubbles in the Iowa wind. I've been able to see the true colors of the world, the blues and reds and oranges and yellows are back. They keep astonishing me. My clothes have colors. Who knew? My guide dog Nira, a yelow Labrador has rich swirls of honey colored designs going to toffee going to cream. My wife is skinnier than she claims to be. And she has the nicest smile. There are red winged blackbirds and robins and ducks in my yard. Sure: I'm seeing these things imprecisely. But they are announcing themselves. My brain is flooding with  its own black currant vodka and midnight sunlight.

The eye still hurts of course. Its raw, itchy, makes little pin prick sensations when I move it. It will be some little while before it settles down. Some stitches will dissolve. Others will have to be taken out. I get tired. But there's a red winged blackbird beside the lilacs and though I don't see him clearly I know he's there. He's dancing like Jimmy Durante.

S.K.

Note: if you are of strong persuasion and would like to see a video of my cataract surgery click on the link below.

http://www.facebook.com/video/video.php?v=110217361140

The chance to finally reform our nation’s health care system is here. While
Congress moves rapidly to produce a detailed plan, I have made it clear that
real reform must uphold three core principles — it must reduce costs,
guarantee choice, and ensure quality care for every American.

As we know, challenging the status quo will not be easy. Its defenders will
claim our goals are too big, that we should once again settle for half
measures and empty talk. Left unanswered, these voices of doubt might yet
again derail the comprehensive reform we so badly need. That’s where you come
in.

When our opponents spread fear and confusion about the changes we seek, your
support for these core principles will show clarity and resolve. When the
lobbyists for the status quo tell Congress to hold back, your personal story
will give them the courage to press forward.

Join my call: Ask Congress to pass real health care
reform in 2009.

By declaring your support for the three core principles, you have already
taken the first step — thank you. Now, consider sharing your personal story
about the importance of health care reform in your life, and the lives of
those you love.

I will be personally reviewing many of these signatures and stories. If you
speak up now, your voice will make a difference.

http://my.barackobama.com/HealthCareStory

American families are watching their premiums rise four times faster than
their wages. Spiraling health care costs are shackling America’s businesses,
curtailing job growth and slowing the economy at the worst possible time.
This has got to change.

I know personal stories can drive that change, because I know how my mother’s
experience continues to drive me. She passed away from ovarian cancer a
little over a decade ago. And in the last weeks of her life, when she was
coming to grips with her own mortality and showing extraordinary courage just
to get through each day, she was spending too much time worrying about
whether her health insurance would cover her bills. She deserved better.
Every American deserves better. And that’s why I will not rest until the
dream of health care reform is finally achieved in the United States of
America.

Share your personal story about why you too will not rest until this job is
done.

http://my.barackobama.com/HealthCareStory

Last November, the American people sent Washington a clear mandate for
change. But when the polls close, the true work of citizenship begins. That’s
what Organizing for America is all about. Now, in these crucial moments, your
voice once again has extraordinary power. I’m counting on you to use it.

Thank you,

President Barack Obama

I have been thinking hard for over fifteen years about the state of people with disabilities when it comes to the issue of employment. I am of course not alone in this obsession and yes I think its fair to call it that. One way to think about an obsession is to imagine that your world is shaped by the things that occupy its edges. The edge of the world was Christopher Columbus’ obsession; the white whale was Ahab’s–both things were at the corner of the map if you will. For me the daily reminder that people with disabilities are disproportionately unemployed is as terrible as Melville’s whale. And like Ahab my inability to forget the thing has to do with a powerful personal experience. I call it “the plastic lemon” story.

I was a 35 year old unemployed college professor living in Ithaca, New York. I called the appropriate agencies and one fine day a gentleman from the New York State Commission for the Blind came to visit me to talk about job training programs for the blind and visually impaired. He was a good man. He was a really good man. And yet when confronted with my CV and my work experience he was forced to conclude that the way forward for me would be steep if not impossible. He suggested that I make an appointment at a nearby sheltered workshop for people with disabilities–a place where among other things they were busy manufacturing plastic lemons.

Its hard for me to say what kept me from quitting. I think my determination to forge ahead with my hopes had everything to do with the support of good friends, the good luck of having had an excellent education, and a curious desire to write and keep writing. Ultimately even if you don’t have a job you can make productive things happen if you are in love with an art form. And so I bided my time and wrote and as they say in the vernacularI “kept my powder dry”.

So I set out on the ocean of possibilities  and I didn’t let the unknown clobber my psyche. I’d say this is an American story. Its a pull yourself up by your bootstraps narrative. But the difference between what happened to me as a consequence of having some writing ability and some publishing luck and the serious matter of finding employment has very little to do with my abilities. This is an American no-no. We’re not supposed to say that we are the beneficiaries of extrinsic factors that the Romans would have called auguries. We are self made men and women. And of course this is all nonsense. .

Persistence and talents are all to the good but one has to have luck. Someone has to offer you a job. Someone has to say that your capacities and strengths are going to be helpful on a team. Someone has to believe that your evident disability is very clearly a kind of epistemology or way of knowing that affords you some important qualities of mind–things like patience, imagination, empathy for others–those things we all hope we can demonstrate when called upon, especially to our own children.

It is clear to me that more employers in all sectors of our society need to help people with disabilities with that “lucky break” and in a time when we’re talking about national renewal this is the moment to reaffirm this goal.

It is clear to me that a new series of national conversations  has to happen. These roundtables need to invite new people along with the folks who have championed this cause for so long. In effect we need an Aspen Institute  or Renaissance Retreat that brings together those from industry, government,education, social services,and dozens    of other critical areas to imagine collectively how this century, this 21st century can be different from the last one. The last one was a hangover from the 19th century, the century that invented the word disability and tied it to the notion of helplessness and unemployment.

You can train a person how to use raille or a special computer but you can’t give them a job. Only the people in the complex worlds  of employment can offer human beings a place on the team. We know they won’t do this in larger numbers if they have a 19th century play book.

S.K.

Someone asked me not long ago how I became an outgoing and inveterate talker. The scene was a conference having to do with blindness and more to the point it was during the question and answer part of my keynote address on blindness and creativity.

No one who writes literary prose or poetry can say with any certainty how they became a writer but the odds are that in nearly every case it has something to do with poverty or deprivation in a writer’s young life. We are all the children of Dickens in some way or other.

My childhood was a lonesome affair. I’ve written about the isolation of a rural New England boyhood with my long attic sojourns and all my provincial hours of solo play. Yet for all that forced inventionI can’t say that I was in any way unique. My friend the poet Sam Hamill was essentially an orphan. The poet Kenneth Rexroth grew up for all intents and purposes as an orphan alone on the streets of Chicago in the years just after World War I. Writers are forced into early solitudes and they learn how to talk because they have to get out of jams.

I told the conference that I once gave a shelled acorn to a kid who was bullying me on the playground. I told him it was a walnut and suggested he try it. Of course an acorn will ruin your mouth and the kid couldn’t talk or spit and yes I outran him. And given the social psychology of bullies it wasn’t long after that incident that the boy became relatively friendly in my presence.

So that’s the other effect of a writer’s childhood: a rule breaking saucy quasi-belligerant outspokenness mixed with irreverence. I for one never felt like I belonged in a proper group and that has worked out rather well for me. I have always adored this poem by Kenneth Rexroth for indeed, though I never shat on a golf course, I might have done so given half a chance.

Kenneth Rexroth

Portrait of the Artist As a Young Anarchist

1917-18-19,

While things were going on in Europe,
Our most used term of scorn or abuse
Was “bushwa.” We employed it correctly,
But we thought it was French for “bullshit.”
I lived in Toledo, Ohio,
On Delaware Avenue, the line
Between the rich and poor neighborhoods.
We played in the jungles by Ten Mile Creek,
And along the golf course in Ottawa Park.
There were two classes of kids, and they
Had nothing in common: the rich kids
Who worked as caddies, and the poor kids
Who snitched golf balls. I belonged to the
Saving group of exceptionalists
Who, after dark, and on rainy days,
Stole out and shat in the golf holes.

And a beautiful nose it is, Connie.  Congratulations.

Andrea Scarpino muses on a portrait of a face.  Thank you, Andrea, for this very thoughtful contribution to the Planet of the Blind.