Planet of the Blind

 

Some years ago when I was working for a famous charitable organization I had the chance to visit with the movie actress Mia Farrow and several of her adoptive children. Mia was giving a new life to some amazing kids who hailed from the far corners of the earth and who also had disabilities. We had some fun together on that morning because I showed the kids how my guide dog “Corky” –a big yellow Labrador retriever, could guide me around obstacles. Soon we were making a long human chain and having Corky guide us all together in a kind of fabulous “conga line”. Some of Mia’s children were blind, others had developmental disabilities. All of us were laughing and following Corky as she made her way around the grounds of the guide dog school.

That memory stays with me because it represents two essential characteristics of living”with” or “without” a disability. Principle One: sometimes it’s crucial to break the rules. Principle Two: We can’t always be healed but we can live well.

Guide dogs are trained to guide only their single human partner. If you’re blind and you allow other blind people to latch onto you for guidance you are putting an unfair burden on the dog. Part of every guide dog’s job is to make evaluations about the combined width of the team. But on that morning with Mia Farrow I saw that Corky could safely give all those kids a lift. The result was a moment of pure momentum and group joy. “Group Joy” is a funny thing. You can’t always count on it. The “rule book” doesn’t have a chapter on this.

Principle Two is harder to think about. We are all hoping to “get well” when we are fighting an illness or a disability. I recently attended a conference on writing and “healing” and heard lots of literary writers talking about how important their creative work was in terms of “healing” from illness. What was fascinating was the way every one of those writers assumed the easy use of “healing” or “being healed” as being analogous to the purpose behind human creativity. This is an old fashioned idea that many otherwise sensible people are still attracted to. Who would want to argue against this idea? Isn’t the goal of every therapeutic encounter to be healed?

Well no, not always. People who have disabilities or who are enduring an intractable illness are often faced with a different challenge, one that defies healing but which requires us to think about being well just the same. As a teacher with a disability who is increasingly researching the ways that culture influences our ideas about “ability” and “disability” I have come to prefer the old metallurgical term “tempering” to “healing” because it suggests that we are getting stronger without denoting a complete physical transformation.

Not every disability can be healed. I learned long ago that being “incurable” and being well are possible. But don’t go looking for this anomaly in the rule book. In effect what you need to do is break the rules that have long been established for how to think of being well. I am for instance the best blind sailor in my family. Never mind that I’m the only blind sailor in my family. I did in fact teach my sighted wife how to dock a boat. There’s no rule book for this.

I should add that I’m not opposed to healing. I believe in curing illness and in eradicating diseases. But I also believe in being tempered by physical difference and that it’s possible to lead a vigorous life. Some ophthalmologists would see me as a patient who represents the failure of their profession. They weren’t taught about how its possible to live well when you can’t see. They don’t know about the human equation that links imaginative direction and the unknown together in joyous motion.

It is interesting to note that the word “disability” didn’t turn up in idiomatic English until the 19^th century. The economist Karl Marx used the term to signify people who could not work in the factories. If an economic model of bodily motion is the normative language of physical acceptance in the modern state then it becomes easy to see why the idea that having a disability and living well would be impossible in the mind of the public.

A recent New York Times article highlighted the fact that many of America’s largest companies are now hiring people with disabilities to work from their homes. The internet and assistive software on the pc and the mobile phone make it possible for the disabled to be wonderfully productive workers in today’s economy. What has changed? The rule book has changed. This is why disability studies and the architectural term “universal design” are increasingly linked. I think my guide dog Corky had a good idea: a conga line for all those kids. All of us are going somewhere these days.

 

S.K.

Back in the 1970’s many of my women friends used to say: “a woman needs a man like a fish needs a bicycle” and back then I thought the phrase was pretty clever. One day I said to a woman friend that fish need bicycles because they have to stay ahead of surrealism. “There’s nothing worse,” I said, “than being chased by Salvador Dali.”

Nowadays it seems that absurdity has been overtaken by the machinery of big business and politics–and by this I mean “successfully” overtaken, overtaken to such a degree that the fish “is” the bicycle. The poor fish. Fishy fishy fish. Commodified, bleached of imaginative possibilities, stripped of its scales and ironies.

Madison Avenue absorbed the fish, the bicycle, and Salvador Dali’s mustache long ago. Then the schools of religion and of politics followed like bottom feeders, eating the rubber off the tires, chomping on the dorsal fin and the tiny, nearly invisible legs of our fish.

Do you need an IPad? No you do not. Do you need to round up immigrants and deport them from Arizona? No you do not. How are these things connected? America is now swept up in a post-industrial hangover in which people are so thoroughly divorced from the sensible satisfactions of making things, of living in neighborhoods, of understanding what they need and what they don’t, that nearly everyone is susceptible to believing in things–to desiring things they don’t need.

I was put in mind of this last night when I saw that Sen. John McCain had appeared on the Bill O’Reilly show, claiming that illegal aliens are causing traffic accidents in Arizona. McCain presented this as if this is a movement: illegal immigrants acting in consort, like Bolsheviks, wildly plotting to attack innocent Arizonians. “We have to secure our borders,” he said.

No one needs hatred and xenophobia. No one needs an IPad or a talking mop. But if you live in a gated community and you don’t know the locals and you’re insufficiently imaginative, well, you might buy anything that seems like it accords with both novelty and with emptiness.

The entire Tea Party movement and the selling of thousands of objects and ideas we don’t need are connected in a new engine of exhaustion. The scene now is different from McCarthyism or from the anti-establishment fervors of the 1960’s because the rage of the neo-neo-right is built on nothing. They wear the emperor’s new clothes with a brown shirt retro look.   

I want my fish back.

 

S.K.

I was standing in Milan’s great railway station and found that I wanted to become something else, a mythological bush or tree perhaps. There in that Milanese crowd, clutching my slippery suitcase, a man among thousands, one with an ache at the base of his skull, I saw that I needed to become Daphne. Ovidian Daphne. Formerly a thing of flesh and then a flowering thing. “Bring on the metamorphosis,” I thought. “Gods, help me for once!”

An old woman saw I was talking to myself and she gave me the stink eye. I smiled as if she was a beloved relative. They hate that, the stink eye people. She scurried off bobbing her head like a magpie.

“Oh bring on the disambiguation! Come on, Apollo!”

Standing in that middling and aggressive throng I knew that it would be better to be a laurel tree: a laurel with a soul inside it.

“Let us,” I said, “become vaguely Rabbincal about the matter rather than Greco-Roman.”

“My small metempsychosis, my wee soul wandering should be reversible like a good garment.”

The Rabbins called this “ibbur”—the belief that a soul can occupy a body temporarily, without passing through life and death.

“Alright,” I said. “Right here in this train station I am a laurel with a soul inside it.”

And though no one noticed I felt better.

 

S.K.

 

This is the question that St. Peter will ask me, though he might not be St. Peter–he might be a Norse God like Odin (who had one eye). The gate keeper to the after life might be nothing more than a child, one who has been granted immortality because she or he, back on earth, was killed by Teddy Roosevelt’s marines who as you may remember massacred whole families in the Philippines under the banner called “the white man’s burden”. One thing’s for sure: the gate keeper asks you what you knew. There’s no book of days. They don’t calculate your “sin to virtue” ratio. And in my case they will ask me about disabilities because not only did I have one but I fought for strangers who also had them–fought poorly, inelegantly, often in discouragement. Anyone who’s an advocate for people with disabilities knows this sense of being always in a long, roller coaster, topsy turvy, fight or flee struggle to express the rights of citizenship and inclusion. And my St. Peter who will be a little girl from the Philippines who was executed in the courtyard of a church will ask me what I knew. You see, getting into the afterlife is about thinking on your feet, just as it was down here.

 

So what I know about disabilities, rendered on the threshold, is that one must be able to think quickly and often when one’s own dignity or the dignity of others is at stake. “You can’t come in here with the dog,” said a door keeper at Barnes & Noble on 6th avenue in Manhattan. A lovely irony since I’d given a reading in that very store, a reading that had been filmed by NBC’s “Dateline”. “You can’t come in here.” And thinking on my feet I just went in. I let him scrabble after me like a drunken crab. I called loudly to get the manager. Shoppers gaped. It was suddenly nice and hot under the proscenium arch of that flagship bookstore. The manager of course agreed that I could be there but he was rude. I decided that his rudeness had nothing to do with me–that is, I saw that he was universally rude, that he probably had hammertoes or tight underwear. The point is, dear gate keeper, I saw that beyond my inclusion I didn’t need the approval of a suffering man. “That’s how it was down there,” I’ll say to the immortal girl or boy.

 

“They had poetry down there,” I’ll say. “They worked hard, those with consciences and hearts.” “We gave our lives to seeing what is far off.”

 

I know that we treat veterans with disabilities poorly or well, depending on where they get their medical care; that we treat the elderly with disabilities with care and concern or with disrespect depending on their wealth; that we treat children with disabilities with courtesy and with proper ambition depending on where they live. I know that there are innumerable colleges and universities in the United States that are failing to meet even the basic requirements for accessibility as outlined by the Americans with Disabilities Act. And so we are still seeing what is far off. We see that we are in a world of suffering. We do our best. We see disability as a central concern in the fight for universal human rights.

 

“Was that too much to ask?” I will ask.

 

S.K.

 

I am heading today to St. Catherine’s University in St. Paul Minnesota where I will be teaching creative writing over the course of this next week. According to my Blackberry “Weather Channel” application it will be sunny in the twin cities; the average “high” will be 70 degrees. There will be birds in the half green trees though my phone doesn’t say so. There will be people at St. Catherine’s who love poetry and literary writing though again my phone doesn’t say it. My phone doesn’t have a poetry “app” and it can’t locate imagination though its the thing you want if you’re looking for a nearby Irish pub. Meanwhile I am packing my spring apparel which looks like my winter apparel because I am a dull man when it comes to appearances. All my cinctured, ruby caftans are inside. On the inside I’m Coco Chanel meets Kandinsky. And this brings us back to creative writing. You see, my inner Coco Kandinsky is not a snob. S(h)e believes that everyone can write. S(h)e also believes that most people don’t have access to good ideas and/or scintillating examples of imaginative writing. S(h)e is not an aesthete though s(h)e could be.

 

The point is that one may write about anything. Poetry is always with us. It may be a homely thing that gives us the poem. The Swedish poet Lars Gustafsson once saw a house fly while he was riding on a night train. He writes:

 

Puzzled fly

shut in a night express

 

still trying to fly

and doing remarkably well

 

From the south end of the train it arrives at the north

already a far wiser fly

 

and the train roars all the faster into the night

 

**

 

Of course it isn’t enough to say one can find poetry in anything; it is better to say that all conditions, random, slippery, half-formed, minor–all these present the background of our lives. Chance things give us words and words ex nihilo give us clues and clues are lyrics. Does poetry make you better? Probably not. But it makes you a wiser fly on the night express.

 

S.K.

By Andrea Scarpino

 

Los Angeles

 

The shuttle from the airport filled with writers—What’s your next project? . . . . When I was doing my undergraduate at Stanford . . . . This is my fifth book . . . . Do you know who I’m on a panel with?. . . . I hand out mints, hope that calms the egos, trip. An hour later, hotel after hotel, writers climb over one another to exit the van. Denver air pours in the opened doors, crisp and with a hint of winter.

Book fair: knee high boots, funky tee shirts, suits, two men drinking bottles of beer, a woman with her resume. Here, she says, pushing it to me. I try not to fold it up until she walks away. Postcards, magnets, pens, free issues of literary journals, free chocolates, cheese plate, grapes. Do you write fiction? . . . . Do you like poetry?. . . . Are you interested in an MFA? . . . . The aisles are long and wide but packed. Fluorescent lights. Blue fabric booth dividers. Industrial carpet on the floor.

And in the conference sessions: discussion of craft, poetry readings, readings of fiction, memoir. Discussion of online reading series, research for creative writing degrees. Discussion of modern, contemporary. I study the tattoos of the people sitting around me: tree branches climbing a shoulder blade, stars up and down a calf, a fist in a woman sign, a face in a top hat.

Then Rita Dove. All men are beggars, white or black. And the thudding dirge of his heart. Her shoes are much too fashionable for a writer. Her hair is perfectly done. She is glamour, this poet I’ve long loved. Glamour and sass. When questioned about her subject matter, she fires back, It’s clear he hasn’t read very much of my book.

Hotel lobby cocktail hour. Clinking of ice in glasses, clinking of toasts. Clinking of jokes, pick-up lines. A giggle, a man pulling down the side of his pants to show a stickered tattoo, hurried descriptions of work-not-quite-finished, book tours, grumblings about agents, publishers, prizes almost-won, the selection process. Upstairs, the whirlpool—even as night falls, people in swimsuits sitting in the water, lounging on chairs all around. The whir of exercise equipment. Whir of chatter, gossip, talk.

 

Andrea Scarpino is the west coast Bureau Chief of POTB. You can visit her at:

www.andreascarpino.com

My telephone rang this morning and I heard my aunt’s voice. She was calling to say that one of my dad’s oldest friends had passed away. My aunt was terribly sad. And I was terribly sad. My father died ten years ago. Together we miss him. And his friend’s death feels akin to the old sorrow—though it is a new sorrow. My aunt is a religious woman; I play at religion but have my nautilus chambers of nihilism. Whatever you believe, mortal life is oh so painful and April seems to always be a steep month. My father died on April 21, 2000. His best friend died yesterday. Forget T.S. Eliot. April is no crueler than any other month. But it stirs the heart afresh in these cold regions and tragedies may feel more tragic in such places. I know this much: my garden spade is more useful than prayer, or so it would seem. I think I shall go and plant some flowers even though I have a brown thumb. The salt reserve of my heart is turning over. My heart is very busy.

What should we plant first?

 

S.K. 

 

  

 

Since I’m a visually impaired person the images above are arranged without art. In general terms I think this is okay. My life as a writer has been informed by multiple rough hewn inelegancies–a word that Microsoft doesn’t want me to type. I am not cowed. My rough hewn stuff is around my neck and I wear it jauntily since that’s the way to wear it.    

 

I am home in Iowa City after a trip that took me first to Meramec Community College in St. Louis  where I read poetry and nonfiction and taught a class of terrific students. Then I traveled to Hobart and William Smith Colleges in Geneva, NY for a festival on disabilities and the arts. HWS (as they like to call themselves) has long published Seneca Review a top tier literary journal that was founded some forty years ago by my dear friend Jim Crenner who is now an emeritus professor at the colleges. As the photo above suggests, Geneva, NY is a lovely place in spring. The campus at HWS is among the most beautiful in the nation. More lovely was the fact that we were there to honor April as disability awareness month and to talk about the latest issue of Seneca Review which is devoted to writing about disabilities and/or bodies of difference. I served as a guest editor for the magaizne along with Ralph Savarese (pictured above) and we’ve entitled the issue “The Lyric Body”. Also pictured above is the essayist, memoirist, and poet Susanne Antonetta who also goes by the name of Suzanne Paola. Susanne joined Ralph and yours truly on a panel discussing the power of disability and imagination to shape literary work that exemplifies rich and atypical inventiveness. We also taught a poetry writing class together.

 

This latest issue of Seneca Review contains extraordinary work from writers as diverse as Gregory Orr, Mark Doty, Adrienne Rich, Jim Ferris, Laurie Clements Lambeth, Rafael Campo, and many more. It’s also a feast for the eye as it contains brilliant artwork by artists with disabilities. Get yourself a copy!

 

We are off now to walk our beloved dog who has been in many airplanes and fair wondrously patient withal.

 

S.K.     

By Laura Castle

 

Each April child abuse awareness activities are encouraged throughout the nation. The first child abuse awareness month was proclaimed in April 1983 by then President Ronald Reagan. Last year President Barack Obama continued this tradition stating that “Every American has a stake in the well-being of our nation’s children” as he proclaimed April 2009 as National Child Abuse Prevention Month.

Our nation’s statistics are revealing: there were 905,000 cases of reported child abuse in 2006. Of these, 794,000 were confirmed by Child Protective Services as being abused or neglected. In the United States children under six years of age are more likely to die from violence and neglect than from accident or illness. Although anything can trigger an attack on a child, the most common triggers are crying during toileting and feeding.

In Florida, last year (2009), 198 children lost their lives to abuse, a shocking increase in the number of deaths in one year. Across the country, the incidence of child abuse was up 20% last year, possibly due to the economic recession. 
Child abuse takes a terrible toll not only on individual lives, but on society as a whole as survivors who have not learned better behaviors fill our prisons. One out of three abused or neglected children will grow up to be an abusive parent. (I love to turn statistics around – two out of three of us will break the cycle of abuse through either non-parenthood or by learning good parenting skills. Hooray- there’s cause for hope!)

Many of us wear a blue ribbon throughout the month of April in honor of those who did not survive child abuse, a tribute begun by a Virginia grandmother in 1983, who tied a blue ribbon to the antenna of her car in honor of her grandson who died from abuse. By wearing a blue ribbon, we bring attention to the prevalence of violence against children and the harm it causes.

Let us all strive to educate the public about child abuse and encourage individuals and communities to work toward providing safe and healthy homes for children. My heartfelt thanks to all of you who took the time to read this!

 

Laura Castle is a survivor of childhood abuse. She lives in Florida and serves as an advocate for human rights.

 

By Andrea Scarpino

 

Los Angeles

 

This week, Zac defended his dissertation in Ohio, which means he can now officially call himself a Doctor of Philosophy. The afternoon before he defended, I went with his parents to euthanize their dying cat. And the day after he defended, his mother retired after 19 years at Ohio State.

Zac’s been working toward his Ph.D. for as long as I’ve known him, first getting his Master’s Degree, taking coursework, passing gate-keeping exams, spending the last three years hunkered down with writing and revision. Tuesday, after a two-hour defense, his committee chair shook his hand, congratulated him, signed paperwork, and that was that. No words of praise, no fireworks. Other people on campus went about their lives.

We had dinner with his committee, of course, and lots of drinks, but for a moment as big as passing the last big hurdle on the way to his career, the marking seemed a little insufficient. And so, too, his parents’ cat’s death. Last weekend, her kidneys started to fail and she yowled whenever she was left alone for even a minute or two. But it was an easy, nondescript death. She lay on a warm blanket and the vet gave her one clear shot. Then her body let go. Other people in the vet’s waiting room took no notice of us.

And Karen’s retirement, too. She’s worked most of her life in some capacity, and now, she’s done. She doesn’t have to work again unless she wants to. Her office had a party with a cake and balloons, then we went out to dinner to eat. But how do you really celebrate such a significant thing?

It seems to me that big moments of passing, of celebration, are so important to us that no honoring really seems worthy, no celebration really captures all the work and life that has led to that point. Indeed, maybe if it were possible to capture a sufficient marking, that would indicate the moment wasn’t important enough. When my father died, I remember thinking the news should have taken notice, his funeral should have been packed with thousands of people, something huge and important should have marked his death. But even if the Earth had stopped rotating, I’m not sure that would have felt big or important enough for the loss I felt. This week’s colliding of two milestones and a death seemed apt, somehow, even so. Each event carried a loss of some sort, a change, a moving on to other things. I’m not sure we marked them well enough, sufficiently enough to do them justice, but I’m also not sure we could have, what we would have done differently. I am sure, though, that it was one helluva week.

 

 

Andrea Scarpino is the west coast Bureau Chief of POTB. You can visit her at:

www.andreascarpino.com