Category: Uncategorized

There’s a fine story about Ontario’s Lieutenant Governor David Onley at the Milton Canadian Champion (an excellent name for a newspaper–eh?)  Mr. Onleyhas had polio and post-polio syndrome for most of his life and he spoke last week at an Ontario Rotary event about the need for everyone to get involved in the effort to help people with disabilities find jobs. This is a speech that I too have delivered to many groups around these United States from Lions Clubs to Rotary to civic and educational organizations. I sense that Mr. Onley is my brother.

I believe that higher education needs to get involved with this campaign to help people with disabilitiesfind good jobs. Right now (at least in America) most colleges provide fair to passably good accommodations in order that students can attend classes and take tests. That’s about it.

But what if colleges took seriously the possibility that people with disabilities have far more potential than is customarily imagined?

By this I mean that PWDs are profound and aggresive alternate learners. They know a lot about assistive technologies. They are tireless when it comes to the art of “thinking outside the box” and isn’t that the truth?

What if the Big Ten universities brought together their considerable prowess in engineering and their muscular programs in critical thinking to actively promote internships for their graduates with disabilities?

Why help people with disabilities? Because if we’re serious as a nation about entitlement  reform than our first order of business should be helping the most vulnerable achieve success. Its just plain common sense.

But in order to achieve this revolution in thinking colleges need to see that students with disabilities are not a burden but a promise and that promise is embedded in our nation’s potential for success and resurgence.

Imagine if Apple which makes mostly inaccessible products actually employed lots of people with disabilities and accordingly their i phones could talk and in turn these devices could be used by blind people to scan the labels of groceries as well as play a song or call friends? Why not?

employing people with disabilities is about imagination and we can all agree that this nation needs as much imagination as we can muster.

 

S.K.

 

I remember a taxi in Finland in late February . A friend said: “That’s a taxi for dead people.”

It was snowing hard. The cab that pulled up was a Russian “make”. My pal (for all bystanders in fierce snow after the buses have stopped are “pals”) wouldn’t ride in a Soviet automobile.

I got in the thing. So what? I got home. I talked to the driver who had two children. He was hoping they would go to college. We talked about poetry. He loved the Finnish poet Lauri Viita who wrote a famous poem about being buried alive in winter.

I was glad for that ride on what was otherwise a gloomy evening.

Tonight snow is falling in Iowa.

Lights blaze in the houses.

The people take off their wristwatches and put them aside.

A father tries to explain algorithms to his daughter.

My neighbor puts her kids to bed then talks on the phone to her cousin who has breast cancer.

Neighbors three houses down are discussing the coming layoffs. Who will keep his job?

The snow is present and ancient as always. It has no heart and it asks for none.

You can hear trucks far off on the interstate.

The nation used to glide on servility. Now it moves in terror.

The governor of Louisiana appears on the nation’s TV screens and his eyes wander as he talks about the failings of government. He tries to sell the public on the idea that their ruling classes are friendly.

The local university is discussing the furlough of its employees–this in an era when the nation needs educational programs more than ever.

Americans are unfamiliar with the concept of neighborhoods. Neighborly feeling is in part what got us through the great depression. Can we “make it” on suburbanly feeling?

The snow is coming down and the houses are glowing where people are still up and watching E.R.

 

 

S.K.

I’ve been thinking this morning that serious work requires a check list. We might think of this as the kind of diagnostic list they use at the doctor’s office. We know that matters of life and death are serious. We like it when the medical technician has a check list. Of course we do.

And so perhaps the Iowa Department of the Blind which recently denied access to an educational program by a woman who uses a guide dog needs to have a diagnostic list because, after all, these are serious times. The list would look something like this:

1. Is the person asking for assistance a human being?

2. Does this human being experience blindness or substantial vision loss?

3. Do they live in the state of Iowa?

4. Does the state of Iowa meet the requirements of the Americans with Disabilities Act in the provision of state services?

5. Is it or is it not true that service animals are guaranteed rights of access to all venues that are open to the public?

6. If a guide dog user cannot take a computer class sponsored by the state of Iowa what reasonable accommodations are being made so she can take the class elsewhere at public expense?

 

We expect to have much more to say about these matters but of course there’s not much more to be said about seriousness.

 

S.K. 

This is a simple check list. The aim of all serious lists is to promote a good outcome. We believe that other kinds of lists can be constructed but they are not designed for good outcomes. We believe that serious individuals unilaterally reject  facile and anti-social lists, which are, as we’ve suggested, not serious at all.

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.