Category: Uncategorized

by Andrea Scarpino

Los Angeles

 

Last week, I attended the annual conference of the Association for Death Education and Counseling. I presented a paper on elegy, a poetic form that deals with death, dying and grief, but I also attended a very interesting presentation on Lucy Grealy’s memoir Autobiography of a Face. I’ve read Grealy’s memoir (and highly recommend it) but was struck in this presentation by the very idea of a face—what our faces present to the world, the assumptions people make about us because of our faces and the way we look, and the ways our faces can tell the truth about us, as well as the ways in which they misconstrue the truth.

Grealy was disfigured as a child because of her battle with a type of cancer called Ewing’s sarcoma. One third of her jaw was removed as doctors attempted to save her life, and chemotherapy and radiation treatments weakened the bones in her face. She subsequently underwent some 30 facial reconstruction surgeries but never seemed to be able to make peace with her face, and ended up dying of a drug overdose at the age of 39. Hers is a terrible story for many reasons, and the conference presenter was using it in part to examine how Grealy was treated by medical professionals throughout her initial illness and subsequent surgeries.

When I returned from the conference, I found that a British woman by the name of Susan Boyle had become an internet sensation in part because her singing talent doesn’t seem to “match” her physical appearance. I watched the youtube clip of Boyle auditioning for the British talent competition Britain’s Got Talent and was struck by the meanness of the judges and audience members when Boyle initially walked out onto the stage. There were snickering and catcalls from the audience, and the camera panned to show audience members rolling their eyes at Boyle’s admission that she was “trying to be a professional singer.”

Apparently, Boyle didn’t look like what we assume someone should look like to sing on television, although she did have all the trappings of femininity including a lovely dress and high heels. As the youtube clip progressed, Boyle began to sing in such a lovely voice that even the meanest judge, Simon Cowell, couldn’t hold back the look of shock and surprise on his face. Gradually, he even smiled. And as she sang, one of the show’s sidekicks looked at the camera and asked, “You didn’t expect that did you? Did you? No.” By the end of the audition, the audience and judges all stood and applauded wildly. Clearly, basing their expectations solely on her appearance, no one in the audience expected Boyle to be able to sing.

What puzzles me is how, even in the year 2009, we as a people still believe that a face means something important about the person it contains. This is the foundation of racism and sexism, of course, as well as ableism, classism, etc. Those of us interested in Disability Studies specifically and activism more broadly argue constantly that “just because” a person has a visible disability or a darker skin color or appears to be a woman or wears fancy suits, “just because” of those things, we can’t make assumptions about their abilities, their kindnesses, the people they love and who love them. Whether they can sing or write or cut hair or work at the post office. It’s just such an old argument that I get tired making it, and assume, I guess, that most people have learned it by now.

Unfortunately, Lucy Grealy’s story and the sensation around Susan Boyle have reminded me that we still have a lot of work to do to convince the world that faces don’t tell us much in the grand scheme of things. A face certainly can’t tell you that a woman can sing a moving rendition of “I Dreamed a Dream” or that another woman’s heart is breaking, over and over again.

 

Andrea Scarpino is the west coast Bureau Chief of POTB and you can visit her at:

 

www.andreascarpino.com

 

Now that he’s out of retirement the “Landshark” of ’70’s era TV fame has been busy. Besides eating suburban poodles and stray cats and advising local school boards and Sunday schools on how to mistreat children–besides these usual pursuits the Landshark has now decided to join Karl Rove as a phony news analyst on Fox.

 

“Its time to do Satan’s work,” the shark said in a phone interview with Planet of the Blind. “Nowadays its not enough to hang out under the Tree of Knowledge, you have to give up on knowledge and just go where the preternaturally uninformed spend their time. For me the answer is simple: just appear on Fox. Those people haven’t told the truth about anything for a decade and they’re sufficiently mean for my ilk.”

 

The sharks spokesperson who resembles Bill the Cat said that no one should be confused about the shark’s appearance on TV alongside Karl Rove: “He’ll still be off camera behind a door, he’ll just be his usual charming liminal lying self.”

 

S.K.

At the age of 94 Studs Terkel finally sat down and wrote his memoir “Touch and Go” –a book so capacious in its varied carols and its assemblages of American curios that reading it is like falling down a flight of stairs while pasting rare stamps in an album. One is astonished by the worlds revealed and simultaneously affected by the simplest details. One is tempted to cry out: “Let me too be 94 if by God I can sound like the American Henry Mayhew.”

But its the small details that really get me. Writing of one of his brothers Terkel points to an American street tradition born in Italy and Ireland which has utterly vanished today. The street song which persisted until the 1950’s but which is now gone forever like the Studebaker. Here’s Terkel on a casual street corner opera and a local boxing match without rules:

“My brother Ben was a true neighborhood boy. Schooling was not his true love; his mentors and patrons were the big guys on the corner. There was little doubt that of all the kids Ben was their runaway favorite. I can still hear their requests for his throbbing rendition of “Break the News to Mother.” They tossed nickels and dimes at him, though there was nothing patronizing about the gesture. It was as though sentimental passersby were paying tribute to a street singer. He picked up enough change in that manner to occasionally take me to a Saturday feature and a Pearl White serial. The Civil War song was to Ben what “Casey at the Bat” was to DeWolf Hopper, or “Over the Rainbow” to Judy Garland. Just break da noos to mudder Y’know how deah I love ‘er Tell her not tuh wait fer me F’r I’m not comin’ ho-o-me. Now and then, Dutch or Irish or Greek would engage Ben and Quinton, the ten-year-old wonders, to box a wild round or two. Winner take all–a dime. It would usually wind up in a draw and each warrior would be a buffalo nickel richer. Neither Ben nor Quinton knew of the Marquis of Queensberry rules nor did they much care. They aimed for each other’s groin; they rabbit punched. And even pivot punched, a maneuver that was outlawed a half-century before.”

Of course this isn’t a good paragraph and yet I couldn’t care less.The man is talking aloud on audio tape and he’s remembering the vitality of provincial culture–we were a land of neighborhoods until the auto really took over and for the sake of argument I’ll say that you can’t find anyone singing on a street corner in America nowadays unless perhaps they’re selling something out of desperation like religion or spurious free merchandise. No one has permission to be moved in public anymore though fighting persists but not as sport.

IN fact what you feel reading Terkel’s Mayhew-esque reminiscences is nothing like nostalgia but more a wonder or a fear that local culture can’t be resuscitated in a time of ear buds and i-phones. Nowadays if a crowd assembles on the street they’ve been told to go there by Fox news or they’re hoping to see a celebrity but no one’s going to stand on a soapbox and talk about anthroposophism or anarchy or sing a slave song or even something by the Coasters.

But you canread Terkel’s  memoir the way I read Whitman’s “Leaves of Grass” as a literary museum in which you can see how America was supposed to be.

S.K.

I am so American I must hold my head. Last night while dreaming I held a shot gun in my arms and discussed its beauty with a medical doctor–though not a real doctor–he was a TV Landdoc but I don’t remember   which show he comes from. We were standing together outside the dream world hospital and we each had a gun and we were mutually excited about the prospect of duck hunting. I remember my gun was oddly shaped like a golf club. It was probably a white cane before it became a Remington. Then the doors of the hospital flew open and a gruesome retinue appeared. There was a former boss of mine (who will remain nameless) and a life long friend who I first met 30 years ago at the Iowa Writers Workshop. There were several people who I knew I “knew” from various periods of my life but they weren’t clear. And then the dreamland camera focused on a character who I can only call “the central scrutinizer”–a tall, thin man with a small wooden box over his head with a square slit where his eyes would be. His  job was to interrogate my friend from the Writers Workshop and my pal had to sit in one of those little tents you see as the backdrop for a Christmas creche but there was no manger or baby Jesis. The rest of us were told to stand far away while the scrutinizer with his box head and eyeball slit was given the okay to cross examine my friend about his life. We all sat far away like passengers in an overcrowded airport whose flights have been delayed–we sprawled on the floor and leaned against walls. Box man asked my friend if he had written anti-American poetry. You could scarcely hear him. My friend who in real life has a hearing impairment couldn’t understand the question. I got to my feet and walked straight up to box man and stared into his little eyevall slit and told him that he had to speak up because there were lots of hearing impaired people. The others were horrified that I dared to confront the scrutinizer. But then he was gone. My friend came out of the creche and made a joke about feces. Say what you will, authority counts on the public to obey its orders to sit down. In real life I have never gone duck hunting.

 

S.K. 

 

The excerpted article below is from Inclusion Daily Express.

Disabled Riders Protest Proposed Bus-Fare Hike, Service Cuts
(Salt Lake Tribune)
April 15, 2009

SALT LAKE CITY, UTAH– [Excerpt] The Utah Transit Authority’s boardroom overflowed with wheelchairs, walkers and assistance dogs Wednesday evening as disabled bus riders bashed a plan to cut paratransit service and raise fares.

Dozens applauded each time a rider took the microphone to register opposition. Many speakers echoed a common theme: More than a ride, UTA’s “flextrans” vans give them life.

“We have a right to an active life,” said Bountiful resident Mickey Adelhardt, who uses a wheelchair. She suggested that instead of reducing the service area or adding $1.50 to the fare, as proposed, the agency crack down on light-rail riders who take advantage of honor-system ticketing.

Some cried during their testimony or asked others to speak for them.

UTA has offered paratransit services at an affordable cost for years, blind Salt Lake City resident Robin Doyle said, and riders have built their lives around them. The agency should trim other expenses, she argued, not services to those who need them most.

Entire article:
Disabled riders protest proposed bus-fare hike, service cuts
http://www.sltrib.com/news/ci_12151781
Related:
Disabled Utahns Say Paratransit Cuts and Fare Hikes a Bad Plan (KUTV)
http://www.inclusiondaily.com/news/2009/red/0415d.htm
Disabled Utahns fear imminent budget cuts (Salt Lake Tribune)
http://www.sltrib.com/ci_12120916

Like hundreds of thousands of other wringled people I swim laps in a pool as a means of staying limber and as a further means of boosting my anti-depressant drug . I make no bones about it: having one disability can indeed induce situational depression and I’ve been depressed most of my life. I take my meds and swim my laps and in turn I walk long distances with my guide dog.

The great thing about swimming is that you can’t hear a damned thing  except the beating of your own heart and the aqua-graphic bubbles that make their own mystic alphabet in one’s head. Sometimes I hear my hair rowing its own boat. And sometimes when I’m swimming fast enough and starving for oxygenI hear Amelita Galli-Curci, star soprano for the Metropolitan Opera  circa 1908  singing an aria from Madame Butterfly.

I have better dreams when I am swimming regularly. Last night I dreamt that I was living in Brooklyn, New York, circa 1935and I was happily writing a novel. I didn’t own much. I had a typewriter that resembled a pipe organ and a tea set with a lovely pitcher that had hand painted yellow roses. I had a cathedral radio with glowing tubes. I had some pencils.

I woke this morning all dried out and smelling of chlorine but I knew that we’re swimming in larger pools than we daily can conceive of.

I have a desire for tea.

S.K.  

 

Last night at a school board meeting in Iowa City, a meeting where it was announced that special education teachers are going to be cut from one of our city’s high schools I stood up and asked the simple question: “What strategies do you have in place to assure that IEPs and basic services will be provided to students who need special education support?” I was greeted with silence from the school board.

After the silence had grown embarrassingly long a representative from the school administration got up and explained that they now have fewer special ed students than they did last year and therefore, with this in mind, they don’t need the teachers.

I pointed out that two years ago there were too many special ed kids for the teachers and guidance officers to manage.

I was assured that these students have now left the school district.

By my lights that assertion means that people got fed up and left town. That’s not an unreasonable conclusion to draw.

I lost my temper. I told the school board they should feel ashamed of themselves. I told the school administrator that the apparent disappearance of special ed students from the rolls doesn’t speak well of a school system that is anecdotally not doing a good job when it comes to special ed support.

I looked bug eyed and aggressive. My wife told me so on the way home. And as always she was correct.

My problem is that I can’t escape the knowledge that there are real lives in the balance; that people with disabilities are all too often accorded the dregs of whatever happens to be at hand; that there are parents and kids who don’t have my advantages and who cannot speak for themselves.

John 14:23, ”If a man love Me, he will keep My Word: and My Father will love him, and We will come unto him, and make our abode with him.”

I console myself that I’m keeping my word. My anger is righteous which means its driven by love for those who are weak.

 

S.K.

There’s an excellent column in today’s Des Moines Register by our friend Ralph Savarese which is concerned with disability and sexuality. Kudos to the Register   for publishing a quality essay on a subject that makes many folks uncomfortable.

 

S.K.

Back in the 1970’s when Saturday Night Live was new viewers were amused by a running gag that featured nothing more than a man in his apartment and a closed door. You know the rest. It was the dreaded Land Shark.

Now the Walking Shark has come out of retirement to work with the National Defective People Industry  Standards and Practices Association to make sure that defenseless people–those who rely on the kindness of strangers–are summarily eaten alive. 

“We felt that the recent upturn in the abuse of children in Sunday schools and the cruelty to the developmentally disabled and the elderly needed a boost,” said Urho Aho, president of the Defective People Industry Standards and Practices Association. “You can’t just leave abuse up to chance, you really want to promote it.”

Enter the Land Shark.

Nowadays he looks more like Charlie the Tuna than the fearsome sprinting dentata of old but he’s still quite nasty.

“I ate two pugs and a kitty cat on my way to this interview,” the shark said when we met him at a secure location in Minneapolis.

The shark (who has no arms) has a retinue of exophthalmic attendants who clean his teeth with silver tooth picks and adjust his glasses.

The shark got straight to the point.

“America treats the poor and the developmentally disabled and the elderly like shit,” he said while Trixie adjusted his beret.

“But they never just flat out get the job done–that’s where I come in. I teach care givers and night nurses and such how to tear off  legs and noses without remorse. Its the remorse you really want to get rid of. You’ve got to celebrate viciousness and appetite and quit screwing around.”

The shark, who is a big fan of fascism says that the disabled and the elderly are just “useless eaters” and as a predator he can’t imagine anything worse than that.

According to Mr. Aho the Land Shark is booked solid for the next 12 months.

“He’s doing more with legislatures these days,” Aho said. “The shark says that when you slash supervisory care budgets  to the bone you can devour people with impunity.”

 

S.K.

There’s a compelling and timely post over at Bad Cripple that outlines the dark and discordant emotional dynamics of the comedy skits concerning New York Governor David Paterson’s blindness on Saturday Night Live. We have written extensively about the wilfull and objectionable “ableism” that was inherent in those NBC skits that depicted the blind governor as a stumble bum who in turn couldn’t understand the fundamentals of basic architecture.

The New York governor’s current low standing in the polls has everything to do with his handling of the NY government during a depression and there’s plenty to be said about that. But on a human scale the derision of the media where David Paterson’s disability is concerned has had a very real and very human cost.

I too recall being taunted in the schoolyard; bullied; singled out by teachers because I couldn’t focus my eyes in the proper direction or read a standard printed page. I carry the remembrance of scorn and the concommitant internalized shame to this very day.

The post over at Bad Cripple is singular for its human portrait of what ableism can do to even the most talented people with disabilities.

 

S.K.