Author: stevekuusisto

I went out walking not long ago in the winter snow and crossed the Iowa River which bisects the campus of the University of Iowa. The day was bitterly cold and I moved fast with my guide dog Nira and I passed sullen groups of hunched students who were making their ways toward dorms or dinner. It was growing dark. I told Nira what a good girl she was. She worked through clusters of college kids waiting for the bus. Her harness made a kind of sleigh-horse jingle. We were moving almost effortlessly in the evening darkness.

I'd spent the day talking with undergraduate students about the cruel and arbitrary qualities of disability. Did they know that  the word "disability" came into the English language in the 19th century? That the concept of a body that held no economic stature was a by-product of the Industrial Revolution? That in ages past the sight of a person with a physical challenge was considered to be pretty much the norm?

My students were surprised and troubled to learn that people with disabilities have been accorded second class status as a matter of social policy and that these policies cover a history of forced sterilization of people with disabilities; the so called "ugly laws" that forbade people with physical deformities from appearing on the streets in America in the 19th century and into the 20th; the eugenics movement  and the influence of Anglo-American ideas about disability on the policies of the Third Reich. This is indeed troubling material to learn about.

I was mulling this over as I walked uphill in the snow. The matter of disability is nowadays a human rights concern: the United Nations has adopted disability rights under their umbrella of human rights guarantees. We live in a new century when the rights of people with disabilities are increasingly understood to be central to the furtherance of all human enterprises. No one needs to be ashamed of disability. No one should hide in a corner and suppose that his or her right to be a fully productive citizen is in any way affected by physical difference. The right to be disabled is a part of our age. I did not think I would live to see this.

Yet there I was climbing a snowy hillside at the end of a long day. I was heading to medical "rounds" in the Ophthalmology department at the university's teaching hospital. It felt as though my every step was pushed by a strange irony. I have written in my own nonfiction that when it comes to disabilities "no one has to be cured" –a way of saying that if you have a physical challenge you don't need to submit to the old-fashioned medical and social models of the 19th century and imagine you need to be cured in order to live a good life. I have fought hard for this principle. I still fight for it. I walked in the snow and considered the astonishing events that are occurring in this time and in our lives. I am a part of these events. I am a blind civil rights advocate who is working with physicians and genetic researchers who are very close to curing inherited forms of blindness. The snow was coming down hard. I was moving through a vast warren of medical research buildings on a Big Ten campus after dark. My shoes made a squeaking noise in the fresh snow.

If the cure for inherited blindnesses can be achieved then a scourge of blindness can be avoided in our era. The story is as big as the fight to cure polio in the 1940's and 50's and very few people know about what's happening in the world of contemporary blindness research.

My own form of blindness probably can't be fixed. But conditions like macular degeneration or Stargardts disease or Leber's congenital amaurosis will most certainly be cured and some of the best work in these areas is occurring at the University of Iowa. I feel shoots of joy in the evening snow. I want to defend those who cannot be given their sight and I want to tell the story of the researchers and physicians who are working "full bore" to fight genetically caused blindnesses.

As I walked in the cold I felt the rare privilege of being "of a place and time"–a heightened experience of wonder and intellectual curiosity that's mingled with hope for our human condition. This is a compound experience like reading a poem in Chinese. I thought about what it would be like to put two Chinese ideograms together: one for dignity and the other for new hopes.

S.K.

News flash for dog lovers everywhere: Michelle and Barack Obama have selected the breed of their new dog. While they haven’t picked a dog as of this writing they have decided to go with a Portuguese Water Dog.

This is a fabulous breed and we can’t wait to see our “First  Dog” introduced!

S.K.

It was almost ten years ago and Connie and I were in Helsinki, Finland for the Finnish publication of my memoir Planet of the Blind and our hosts were happily celebrating our visit with talks, press conferences, TV appearances and some memorable private dinners. It was during one of these dinners that a young Finnish opera singer (who was eagerly extolling the virtues of vodka “shots” between each course)turned to my wife and asked: “Why are you not drinking your vodka?” Connie (who is nothing if not thoroughly honest) said she    didn’t like vodka. I heard her say it. She made her remark with all due geniality–even going so far as to suggest that vodka doesn’t agree with her.

Ah but our young tenor (who in truth was not so young–he had completed medical school and was in the process of turning from a medical career to a life singing Tannhauser) –our young singer was not to be palliated with soft disclaimers, no, no. He was likely “into” his 8th or 9th vodka and though a large-ish fellow, he was beginning to sag under the weight of his hippocrene drafts but like all such men his speechifying hadn’t caught up with his body. He looked at Connie (who is 5 feet two inches tall and yes, she’s diminutive) and he puffed up his fleshy and portentous mass and then, as if from the heights of Mount Olypos he looked down his nose at my bride and said with as much disdain as he could muster: “Where are your people from?”

Its nearly impossible to say what his evident disdain was like. It was kind of like hearing a Sunday school teacher inquire which child is passing gas. It was sort of like hearing someone inquire who put the pencilled moustache on the Mother Mary.”Where,” he was asking, “where do such delusional and hopeless people come from?”

“Originally?” Connie asked. (For indeed we Americans must always ascertain what this question really means. I come from Hohokus, New Jersey but my grandparents were Sicilian. I live in New York but my father came from Finland–who knows where we come from anymore? I’ve lived in seven of the United States and I liked them all.)

“Originally my family came from Scotland and from Germany,” Connie said.

“Oh, oh, oh!” said Tannhauser. “You are a poor, weak, southern flower!”

He punched the spondee in “Poor, weak” and the dipthong in “southern” and he sounded more contemptuous than any man I’ve ever heard though I confess I’ve never been to a meeting of the Young Republicans and I suspect I never will.

Connie said nothing. There’s wisdom in saying nothing. I then announced that I had to take my guide dog “Corky” outside and I encouraged old Tannhauser to join me. He thought that was a fine idea. When we were in the little park adjacent to the restaurant I told him with almost no inflection in my voice that my wife is a trained killer and that he had better be careful when comparing her to an impoverished daffodil.

And that was a lovely moment. He didn’t know whether I was serious or not. He was plumb tipsy and he decided to stop talking to Connie after that.

Connie does know kick boxing and I reckon she could have killed him if she’d had to. I wasn’t far off the mark. I figured one swift kick to the wind pipe would have been sufficient.

I love the occasional vengeance fantasy. That’s why God made schmucks. I tend to think of such people as “weight training” for the imagination.

S.K.  

The latest issue of Oprah Winfrey’s “O” magazine carries a story by Amy Hempel which you can read at the website of Guiding Eyes for the Blind. . Think you can’t trust people? Think the world is going to pieces and there’s no community anymore? Go see Amy’s story.

S.K.  

Bad Cripple has an excellent piece today concerning the New York Post’s handling of David Paterson’s blindness and I urge those who may be interested to take a look. What’s increasingly clear is that disability is the  red herring in the Post’s recent sloppy divigations about the state of New York State. We would rather Governor Paterson be called to account for the dynamics and actions of his administration rather than by means of falsehood and the misapplication of his disability.

S.K. 

By Andrea Scarpino

Los Angeles

"Portrait of My Body as Ruin"

The Getty Villa is a museum created by J. Paul Getty, an oil tycoon with an insatiable love of ancient art—or a love of the status that collecting art brought a wealthy man in the 1950’s and 60’s. The Villa showcases Greek, Roman and Etruscan antiquities, many of which were buried by the 79 AD explosion of Mount Vesuvius that covered towns like Pompeii and Herculaneum, and only began to be excavated in the 19^th Century.

Basically, one of the most devastating natural disasters in ancient times led to the preservation of artifacts that probably wouldn’t have survived otherwise. The ruin of entire towns, the loss of entire families, meant that 2,000 years later, we have access to daily Roman life in ways we probably wouldn’t have had otherwise. The ruin of that explosion led to the salvation of ancient art, to cross-cultural and cross-historical study and understanding. So where am I going with this history lesson?

When I was in fifth grade, I was diagnosed with Reflex Sympathetic Dystrophy Syndrome (now called Complex Regional Pain Syndrome) and basically couldn’t walk without pain from then until college. In high school, I had pain treatments twice a week to be able to attend class—treatments that involved anesthesia and IV’s. By the time my RSDS went into remission, I had had anesthesia close to fifty times, was an expert on using crutches, had my own blue handicapped parking pass, and thought of my body as ruined, a site of ruin. It didn’t work the way I wanted it to, the way it was supposed to work, the way the bodies of other kids my age worked. It just sat in frustrating pain.

Of course, I didn’t have Disability Studies then, or any way to understand my difference other than as something strange, less than desirable, uncomfortable, odd. My mother tried to make my life as “normal” as possible, but when you go to a slumber party after having anesthesia leak from your vein into your surrounding skin, well, it’s hard to feel like you’re fitting in with the other girls gossiping about prom. And my pain was invisible—I didn’t have a cast on my foot, walk with a limp. I didn’t tell my friends how many pain killers I consumed to get through the day. In my mind, my body was a site of silent ruin.

This week, I’ve been thinking again about the idea of ruin, and what ruin has to teach. In many ways, I’ve overcome RSDS. I haven’t had a relapse of pain and can walk and run without much thought. But RSDS has left indelible marks on my body, my psyche, how I see myself in the world, how I understand others with visible and invisible disabilities. When I walk through the Getty Villa, I think of my body as a vase excavated from the destruction of Mount Vesuvius, a link to an ancient time that seems so different from the world where I now live. I think of my former body, how I considered it useless, a site of ruin. And I think of how much it taught me, how it survived the pain, the destruction, and emerged on the other side.

The person I am today is very different from the person I would have been without RSDS, for good or for bad. I can’t even begin to imagine what it would have been like to grow up without that constant pain or without constant trips to the hospital. But I’ve reclaimed my former negativity about the idea of ruin, and focus instead on what ruin can bring, what it can teach, how its horror can persist even as it reaches across time to emerge elegant, lovely.

I flew today from Iowa City to Altoona, Pennsylvania and I am now in Huntington, PA where I will speak tomorrow at Juniata College. Today’s travels required three plane flights and my guide dog Nira and I were some ten hours in transit. It was somewhere around the seventh hour of our journey when we found ourselves in the United Express commuter flight gates of Washington’s Dulles airport and we were certainly confused about our whereabouts and wondering what was next when a man who was quite near us said: “It’s nice to pet a dog that you know won’t explode!” Then a woman shouted: “That’s a guide dog don’t pet it!” The guy was seriously petting my dog. He smelled like cigarettes and beer. I knew he was a soldier and let him pet the dog. “Yeah, In Mosul you couldn’t pet the dogs they might be wired to explode.” he said. Nira was wiggling. He was patting her as if she was the love of his life. The woman across the way was indignant. Turns out she was a puppy raiser for one of the guide dog schools. I assured her that dogs from Guiding Eyes for the Blind can break a rule for a soldier coming home.

That stopped her  indignation.

Hell, I’d break a rule any day for the soul of a serviceman and yep, Nira is so well trained that when I asked her to sit and resume her working mantle she was as professional as you could want.

The soldier was coming home because his wife was in labor. She was having twins today in a hospital in Johnstown, PA.

He will be home for two weeks. He will return to Iraq in 14 days. He told me his best friend was killed by a roadside bomb just two weeks ago. “There was nothing left of him,” he said. “I just saw his wife.” “There was nothing left.” Yeah, I’d say he can pet my dog any day of the week. 

S.K.

If you’re looking for a story that’s so far fetched it makes Edgar Poe’s Cask of Amontillado seem like a plot from Leave It to Beaver then you can read the following story at The Des Moines Register. Some days I need a crazy story for the sheer giggling asphyxia of the thing and there’s no help for it: I just have to read about the raw, dark, nay, even pre-historic antics of people who I had quietly supposed were our civilized neighbors. I make this mistake about civilization rather often so there’s no dearth of outlandish stories in circulation but this one is surprising for its evident extremism about blindness by an agency funded by the state of Iowa that’s supposed to help blind people–and that’s just the opening fork’s worth of apalling meat. The larger mouthful is that state money was spent to fight The Americans with Disabilities Act in a time when every nickel of public aid is desperately needed to help people but I digress. I’m having a problem with my oxygen. This story is just too disgraceful for my customary sensibilities.

Here is a brief excerpt from the Des Moines Register’s article that’s linked above:

Woman’s Bid To Take Dog To Classes Rejected
(Des Moines Register)
February 20, 2008

DES MOINES, IOWA– [Excerpt] “Stephanie Dohmen’s six-year fight to take a guide dog to training classes at the Iowa Department for the Blind suffered a setback Thursday in Polk County District Court.

Jurors rejected the Des Moines woman’s discrimination lawsuit and sided with a department policy that bans the use of visual aids, including seeing-eye dogs, in the program.

Dohmen and her dog, Lilly, were caught in a decades-old argument that has divided blind Americans into distinct camps: those who prefer guide dogs and those who consider the animals a poor substitute for learning to function with only a directional cane.

Supporters of the state program who testified at Dohmen’s trial praised the verdict and defended the ban on guide dogs.”

Reader’s note: the excerpt above was provided by Dave Reynolds who produces the disability rights information site called Inclusion Daily Express.

Now back to my own bosky musings, eh?

If you are from a foreign country and you’re not aware of the matter there is indeed a group of blind advocates who believe that using a white cane as a means of navigating sidewalks and streets is a superior method of mobility than traveling with a professionally trained guide dog. Several of these cane only people work at the Iowa Department for the Blind.  

I have no doubt that on appeal Stephanie Dohmen and her guide dog will win their case according to the federal guarantees of access for guide dogs under the ADA though she surely at present feels humiliation and if she’s like many blind folks she doesn’t have lots of cash to throw around and consequently she’s likely feeling exhausted and poor. One wonders if there’s a department within the Iowa Department for the Blind that’s in charge of humiliation and impoverishment, but I digress. Sometimes I can’t help it. Preternatural and projective intolerance does this to me every time.

The real issue is that the Iowa Department of the Blind is influenced in its delivery of services by a group of blind people who are members of the National Federation of the Blind which is headquartered in Baltimore, Maryland. The Iowa folks believe there’s only one way to be blind or visually impaired even though specialists in orientation and mobility training for blind people do not generally agree with their positions. I won’t go into this matter at great length but for the sake of analogy this is like imagining a program for wheelchair users that insists no one can have a power chair–you can only use a manual chair and it has to be of a certain specific type of manual chair sanctioned by a committee of manual chair exceptionalists. Any other form of wheelchair is forbidden and not only that, but if you deign to use one of those other mobility devices you are not a “real” mobility impaired person.

Of course the analogy above doesn’t pass the sniff test. And what if we expanded the argument? Let’s say the Iowa Department of Transportation issued a decision that you can only have a driver’s license in Iowa if you drive a Yugo. Remember the Ugo? Surely there’s a Yugo collector’s group. I’ll even wager there are enough of these cars from the former Yugoslavia to match the population of Iowa. That’s a pretty good guess I think.  

The whole miserable story of the Iowa Department of the Blind has to do with the prevailing and controling idea that people who are blind or who are “legally blind” must adhere to the NFB influenced model of blindness which means that you need to wear a blindfold if you have any residual vision in order to take one of their talking software classes. The idea that a guide dog is some kind of visual aid that needs to be checked at the door is so crazy you can hardly give it credence save that in these United States you will never run out of easily confused people who can serve on local juries. Apparently the Polk county jury was confused by the testimony of a guide dog user at the Iowa Department of the Blind who cheerfuly announced that he always leaves his dog at the door.

The fact is that demanding such a position of a guide dog user is illegal. Period. And the additional galling fact in this case is that state dollars were spent on this offensive discrimination in a time when people need all the help they can get.

Jeez. If they let Stephanie’s dog into the computer lab it might cheat.

S.K.

Ben Smith writes over at Politico that just maybe the problem with New York Governor David Paterson’s unraveling administration rests with his blindness. His argument is buttressed by a similar opinion over at the New York Post. Smith writes:

“New York Gov. David Paterson’s story was, when he unexpectedly took office upon Eliot Spitzer’s fall, told in familiar terms as a triumph over adversity. He had risen to the highest level of government despite being almost entirely blind since birth, and despite not ever having learned to read Braille. This is how America talks about disabilities, and there was no reason initially not to portray Paterson as having risen to the challenge.”

“Now, his administration is in deep trouble, and the consensus in Albany is that the problem is something approaching chaos in the executive chamber. Today, the New York Post — which had been a Paterson ally — says publicly something that’s often said privately: that the governor’s blindness is a disability that makes it difficult for him to do his job.”

The argument above rests on what we in the writing trade like to call “The Aristotelian Pocket Watch” which is to say that something shiny is being dangled in the reader’s face. Let us perform a basic syllogism:

Blind people can’t see.

One must see to read.

Therefore blind people can’t read.   

In this view poor Governor Paterson who doesn’t use Braille is illiterate and accordingly he’s not up to his job as a chief executive. Mr. Smith reminds us that the Governor memorized his State of the State address and proffers this as an example of David Paterson’s sub-Cartesian condition. In effect if we accept this argument the governor is like a talking bird. “Poor Birdie! Poor Birdie! Birdie want some Braille?”

Governor Paterson is “legally blind” which means that he was taught to read by holding books up to his nose. He learned to read with ardor, patience, and quite likely a good deal of physical pain. The fact that he wasn’t encouraged to learn Braille as a child isn’t unusual. Children who are blind but who possess what’s called “residual vision” are still discouraged from learning Braille. There are a hundred reasons for this and they include the lack of resources for teaching Braille in public schools and the advent of screen magnification devices and other accommodations. Being read to does not mean one is illiterate. Absorbing information in an auditory fashion does not mean one can’t absorb information speedily and accurately.

Braille literacy is a good thing and we at “Planet of the Blind” are all for it but let’sbe clear that there are hundreds of kinds of blindness. The public’s unfamiliarity with vision loss is the larger story and Mr. Smith can be excused for imagining that all blind people live like Keebler elves inside trees and read by rubbing the interior bark with their fingers. Why not? The public thinks blind  people are shuffling and groping creatures who live in utter blankness. In the American Public’s view any deviation from this script suggests something dishonest. Both Ben Smith and the Post believe that something untoward and scandalous is occurring: the governor is too blind for his job and decent people don’t know how to talk about it for merely to offer this proven argument is to risk being unfairly targeted as holding politically incorrect opinions.

We call this “the hook” in the literary trade. The American appetite for conspiracy theories is entirely dependent on “the hook” and it differs from a syllogism because (as the Greeks knew all too well) it relies on unreasoned emotions. Aristotle called this state of mind “pathos” and he understood rightly that it was dangerous. Advertising uses pathos and perhaps the most famous example is the political commercial that the Johnson administration foisted on the American public which featured a little girl playing with flowers while a mushroom cloud rose behind her. Yes Virginia if we elect Senator Goldwater we’re going to get blown to bits.”

Pathos isn’t based on facts and it works because facts are tedious. Ronald Reagan once remarked that “facts are stupid things”and I don’t for a minute imagine he believed  this in unilateral terms but yes, when one is aiming for pathos the facts sure are irritating you betcha!

Here are the facts:

Governor Paterson can read and he can process information.

Governor Paterson inherited the worst economic mess in  New York’s history.

He has handled delicate matters like the appointment of a replacement for Hilary Clinton with a clumsy and confused series of statements and mis-statements.

New York is going down the drain because the United States is having an economic collapse that many believe will be worse than the great depression.

It is easier to toss some pathos on the flames and why not take advantage of just how little the public knows about blindness and low vision? Facts are stupid things and surely the blind are commensurately dense.

See how easy that was?

S.K.

Someone wrote me asking why POTB has not been talking about poetry lately. I think the answer is complicated for its not correct to say that we don’t think about poetry like a caffeinated clock maker reciting Rilke as he works. We think about poetry with every little gear and pin. Daylight disappears and the windows grow dark and we’re still thinking about poetry. We even write poems though we’re less on display than we might be in other seasons. Why are we so introverted when it comes to the drums and snakes of the imagination?  

Sometimes we are affected by a freshet of humility. We’re like the 100 year old monk who we met at a Finnish monastery. We were side by side in the sauna. I said to him: “Do you smell strawberries?” He told me that the smell was from his sweat, that he’d been eating only strawberries for about two weeks.

Have you ever sat with a 100 year old man who was entirely happy?

You see, sometimes poetry asks us to admit we know nothing at all.

Try to write about that. Do it with happiness.

Are you happy enough?

Have you given away the proper things in this life?

I promise you that I’m looking always for the answers. I look with my skin. I walk around in the near meadow. I smile at light as it moves over the frozen earth like any blind man. I am lighter by the minute. And you?

S.K.