Category: Uncategorized

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.

“Time will say nothing but I told you so,” wrote Auden. At first one is tempted to think of time as being shrewish–but then Auden adds: “Time only knows the price we have to pay.” Time is sad. Time is very sad indeed.

It was a gray day in Iowa. I wrote letters for students; answered e-mails ; and I wondered why people with disabilities are still without basic accommodations at major American universities. Apparently lots of colleges and universities think that making disabled staff and students compel them to meet the basic required accommodations under the ADA is an acceptable policy. Time only knows the price we have to pay. We drink tea. We play Mahler on the HI Fi. We talk to the trusting dog. We go forward.

I’m middle aged and I have a good job. I teach at a Big 10 university in the heart of the United States. I have excellent students and colleagues. And yet I’m mindful that 20 years after the ADA people like me are barely on board in higher education. I think often of African-American faculty some forty plus years ago who had to withstand the piercing scrutiny of a white professoriate and college administrators. And of course one doesn’t have to stop there.Young faculty of color are struggling even as I type–diversity is a very hard road and I know something about it as I chaired the Ohio State University’s     Diversity Committee and got to hear some hair raising things. Time only knows the price we have to pay.

Disability is still thought of as being outside the cultural core of many institutions of higher education. Its a “rehabilitation” model enterprise at such institutions: they will grudgingly provide test taking services or paper work outlining for faculty that students need accommodations. But imagining that the faculty might also need accommodations–or the staff or returning veterans or that these issues are part and parcel of the intellectual history and momentum of American pluralism is beyond most campus administrations. This isn’t strictly the case but its all too often a matter of “the same old same old”. Time only knows the price we have to pay.

I was interested to read the following over at the Department of Justice ADA website concerning a small private college. If people with disabilities stay the course they can make changes at their respective colleges and universities. The price is your sense of graceful inclusiveness which Time can tell you about in full measure.

 

Here’s the announcement from the Department of Justice:

CHATHAM UNIVERSITY WILL INCREASE CAMPUS ACCESSIBILITY

On December 9, 2008, Chatham University, a private university in Pittsburgh, Pennsylvania, entered into a settlement agreement with the Department under which the university will make its campus and services more accessible to individuals with disabilities. The settlement resolves an investigation during which the Department found violations of the ADA Standards for Accessible Design in newly constructed buildings, architectural barriers in existing facilities, and inaccessible circulation paths throughout the campus. The university has agreed to undertake specific remedial steps over the next five years to remedy these and other barriers to full accessibility on campus.

The agreement addresses the major facilities on campus and related services, including administration buildings and faculty offices, assembly areas, classrooms, skill labs, cultural facilities, science facilities, dining areas, student housing and lounges, the library, the athletic center and playing fields, and parking. It also requires the university to modify policies, practices, and procedures when necessary to afford access to services and facilities for individuals with disabilities.

S.K.

Lance Mannion has a most excellent post today entitled A Matter of Principle in which he fulminates about the mysterious praise being offered to the GOP for its wholesale lack of cooperation with the Obama administration. Of course “the praise” isn’t all that mysterious for indeed there are plenty of bootlicking “I’ve Got Mine, Screw You” exceptionalists in the news media. I won’t digress and proferr an alphabetical list of journalists and talking heads for that would put me at risk of further aggravating my tennis elbow but you can see some of the miscreantswith their links over at Lance’s site.

I still stand by my earlier observation  that the GOP is in The Charnel House alongside Victor Frankenstein. The Reaganite addiction to a bad idea is its own justification in the minds of the House and Senate Republicans. If you remember the novel, Victor Frankenstein is only moved to admit his mistakes after his creation attacks his own family.

Lance’s assessment is that the GOP is afraid of its own right wing which is to say that there’s evidence that some pols would have liked to vote for the stimulus package but they were afraid of the reactionary elements on the far right. I like that point of view but I’m still banking on the Frankenstein Theory. They’re just not haunted in their own private homes.

Shallow is as shallow does?

 

S.K. 

 

There’s an interesting article over at the Ithaca Journal that highlights three high school athletes who have disabilities who are participating in mainstream sports in the small upstate New York town of Waverley. One of the kids is a legally blind student named David Briggs who is both a placekicker on the football team and a member of the track squad. I am so excited about this I can’t make the verbs and nouns go into the corral.

You see, I was a high school kid in upstate New York who wanted to be on the track team. They let me practice for a couple of weeks–even gave me a uniform–and then they called me into the Principal’s office where I was told in summary fashion that I couldn’t be on the track team because of the terrible risk I presented for the school’s insurance liability. I was crushed. I tried to argue my case. I asked why the school’s insurance liability was any different when I was running around a track as opposed to walking down the stairs in a student stampede between classes. The Principal (who didn’t like me because of course I needed accommodations and his crummy school hated providing accommodations, even simple ones like large print tests) told me that “it was out of his hands” etc. etc. and of course I got him with the old zinger (for I was the child of academics) saying: “Well yes, but didn’t Eichmann say that?” (Even at 16   I knew that there’s a cut off point–if the sub-Cartesian numb-skull is going to hate you then so be it, you might as well take your parting shots.)

The really painful part of the story happened about two days later as I was walking home from school. The track coach who was also the student driving teacher. pulled up alongside me with a car full of students, leaned out the window, and demanded I return my uniform. And of course there was laughter from the back of the car.I walked home feeling approximately four inches tall. I had to climb the sheer walls of gutters and pavements.

This story in the Ithaca Journal makes me feel like running in my high school track suit, which I never returned in case you’re wondering.

 

S.K.  

I am not opposed to bringing up unplanned kinder so let’s not get off on the wrong foot here and let’s not pretend that I’m surreptitiously advocating for abortion though you’d be correct to surmise that I’m not immune to arguments in favor of forestalling pregnancies particuarly in cases where children are having children but let’s also be clear that Sarah Palin’s daughter who has been interviewed by NBC is in fact just a baby herself and yes, she looks like a deer caught in the headlights as she attempts to reassure viewers that she’s never been happier. Yes she’s never been happier though neurological studies tell us that 17 year olds aren’t fully developed intellectually or emotionally. She’s never been happier though she’s forgoing the last years of her own childhood in the service of her parents’ impacted moralism with a side dose of sectarian claptrap about the unrestrained goodness of families “pitching in” though no one can say just what that means. Apparently the idea is that children who bear children are fairly and appropriately sustained by their families though the Palin’s have no advice about how poor and/or working class single mothers might garner the same familial support. Like so many other ideas brought to you by the neo-conservatives the underlying idea is to turn the clock back to the 19th century. Children having children fits nicely into social   nostalgia for the 1870’s when children had children and expected little more from life save having the fully bridled opportunity to serve their ministers and their fathers. Why, children having children is just God’s way doncha know? And you, you smug, progressive stinker, you would propose abortion, the sin of sins because you do not value life like all us good Pilgrims and how dare you look askance at our moral commitment to serving our Lord  and all his children.

No I don’t believe in abortion in all circumstances. I don’t believe that people who are likely going to have a blind or deaf child should be granted automatic abortions and I’m opposed to abortions for the sake of convenience but I can’t get over the sight of a frightened and grandly uncomprehending child talking like a Stepford teen about the joys of parenthood while her eyes are desperately searching for something off camera and yes, my video description is unimpeachable. This is a scared child and I’m not buying the Palin’s line of the day.

 

S.K.

We are pleased to introduce Andrea Scarpino our West Coast “Bureau Chief” who will be sending us posts from time to time. We are delighted to have her on our roll of contributors.

S.K.   

“Chick-Fil-A and Jesus”  

by Andrea Scarpino

Los Angeles, California

I forgot my iPod and headphones at home. That much was my fault. Wearing headphones is a very clear social signal that a person isn’t interested in talking. And I tend to smile too much, which friends tell me makes me look much more eager to converse with strangers than I really am. But when I boarded my flight home after a writing conference, I brought out the stack of student papers I planned on grading during the four and a half hour flight and hoped the man next to me would get the hint. Of course, he didn’t.

American men often assume women are eager to hear their every thought, no matter if the woman in question is a family member or stranger. And I smile too much. So my row mate on the plane started asking me questions about Los Angeles, about whether or not I like to eat at Chick-Fil-A restaurants. It turns out he was flying with 1,400 other Chick-Fil-A franchise owners from around the country to attend their annual conference in Long Beach, a conference at which Rick Warren was going to speak and the 80-something year old founder of Chick-Fil-A would be present to unveil new product lines.

So I gave in and talked awhile between papers, asked the man questions about his franchise and how Chick-Fil-A was faring with the downturn in the economy (he says quite well). When he asked me if there’s a Chick-Fil-A restaurant near my house, I told him that I’m vegetarian, so probably wouldn’t have noticed if there were. I don’t think so, I said, but I don’t really know. Then the conversation turned to Jesus. I went back to a paper, but my row mate spoke even as I wrote comments to my students. He goes on missions to Romania, sets up projectors in the middle of jungles to show children movies about Jesus’ life. He clearly wants to do well in the world, but didn’t explain how showing children films in the middle of a jungle would help improve their lives. If, in fact, their lives need improving. That wasn’t even clear.

I finished my grading and tried to look enthralled with the Sky Mall catalogue in my seat pocket, cursing myself for forgetting my iPod and headphones. The pilot announced our initial descent into Los Angeles, and my row mate began rooting around in his carryon bag. Billy Graham has a church near you, he said, handing me a pamphlet called, “Steps to Peace with God.” You should really go check it out. And here are some Chick-Fil-A free meal cards. He handed me three cards to receive a free Chicken Sandwich Meal complete with Waffle Potato Fries and a medium soft drink. Didn’t I already tell this guy I was vegetarian? I thanked him, took the Jesus pamphlet and cards.

And now, the question I ask myself: why didn’t I politely tell the man I didn’t want to talk? I just finished a conference with 5,000 writers and was tired of schmoozing with strangers and old friends. Why did I worry about hurting his feelings or ego? Of course, I know the answer: I’ve been trained as a woman to take men seriously, to listen when they talk, even if I have work to do, don’t eat at their restaurants and don’t want to hear about Jesus while hurtling through space in a metal cylinder 30,000 feet above the ground. I’m trained to listen, smile nod. And I do it well. My row mate, of course, doesn’t. He didn’t listen when I said I’m vegetarian, didn’t listen to my body language when I kept returning to my student papers, didn’t listen to my silence around his Jesus-talk. Women are taught to listen to men, and men are taught to ignore women. Even my row mate’s free Chick-Fil-A coupons didn’t listen: they’re only good in Florida. I live in LA.

 

Andrea Scarpino is the West Coast Bureau Chief of POTB and the author of a brand new chapbook of poems. Visit her at: www.andreascarpino.com