Author: stevekuusisto

There’s a welcome post at Change.org’s Autism site.

Meg Evans writes about a recent legislative victory for families with disabled parents in the State of Maryland.  

Evans writes:

“Governor Martin O’Malley has signed new legislation, following its approval by the state House and Senate, to prevent discrimination against people with disabilities in Maryland family law proceedings by ensuring that an individual’s mental or physical disability cannot, in itself, be sufficient grounds for denying custody of a child to that individual.”

The victory above would seem self-evident but alas, all too often people with disabilities are denied the rights described above.

There is still a ghost in these United States–a Victorian figure replete with Dickensian chains and dark robes. Its the ghost of Eugenics and it haunts 21st century America as surely as the ghost of Christmas past.

Accordingly the news described above is no small matter. This represents a strong “shot across the bow” that families with disabilities are “real families” pure and simple.

I take heart from stories like these.

S.K.

The following article from The Guardian comes to us via Inclusion Daily Express.

S.K. 

Susan Boyle Is Great For The Learning Disability Cause
(The Guardian)
June 8, 2009
GLASGOW, SCOTLAND– [Excerpt] As someone with a learning [intellectual] disability, it’s been great to see Susan Boyle getting so far on a talent show. You rarely see people with a learning disability in the media, and in the last few weeks Boyle has rarely been out of it.

But, like anyone who is put in the media spotlight, she has found it hard to deal with her new fame and growing media attention.

The main problem is that the general public don’t understand what a learning disability is and how it affects a person’s life. And that includes the producers of Britain’s Got Talent.

Some people have suggested that people who have a learning disability, such as Susan Boyle, should be stopped from going on Britain’s Got Talent. This would mean denying 1.5 million people with a learning disability in the UK the chance to take part and have the same opportunities as everyone else. This makes no sense and is discriminatory.

Entire article:
Susan Boyle is great for the learning disability cause
http://www.inclusiondaily.com/news/2009/red/0608a.htm
Related:
Kelly Clarkson: ‘People Have Been Vicious About Susan Boyle’ (Entertainment Wise)
http://www.inclusiondaily.com/news/2009/red/0608b.htm

First: become the characters you are writing about.

This morning I am Roskolnikov, capable of cruelty but still able to fall in love with women and with Jesus. I am Russian at this hour. I drink my tea from a glass and carry a Finnish knife in my boot. I thank the scribes of Patmos for the New Testament because it says  Christ will forgive me. Where’s my damned landlady?  I have only fifteen minutes if I’m going to kill her.

Oops.   

Time’s up.

The landlady wasn’t in her usual place. Generally she sits in the glorified closet beside the entry and chews cardamom  seeds and gives the evil eye to children on the street. I’ll have to kill her tomorrow. Now I have to go to a lecture on French philosophy. I need a drink.

On the way to the bar I become woozy with sentimentality. I love the awnings over the small shops and the sad paint of my city. I love the brave urbanized Russian grass. I must sit. Alas I am out of tobacco. I now love strangers.

Step Two  

Stop being the characters you are writing about.

This is a Jekyll and Hyde thing. (Yes, that story really “is” about finishing your novel.)

Now you are free to be even more unpredictable.

Sobriety is not sobriety.

The one who never drinks understands Roskolnikov feels the tenderness of God when he sees the pink roof of a dog’s mouth.

In the next class we will discuss why poetry is better than the newspaper.

S.K.

Los Angeles

By Andrea Scarpino

Often, now, on important days related to World War II like this weekend’s D-Day, a local Utica journalist contacts my Uncle Lindy to ask him about fighting in a tank division during the war. Usually, Uncle Lindy tells the journalist he lied about his age to join the army early, about the sounds he heard while landing on the D-Day beaches, about what it was like to pass German soldiers while on patrol at night and just nod his head in their direction, no shots fired by either side. The story journalists like the best is about a concentration camp survivor Uncle Lindy met after helping to liberate his camp. Lindy gave him a cigarette and always remembered his face. Years later, in upstate New York, that same man walked into the grocery store Lindy owned with his brothers. The two recognized each other immediately, cried and hugged, and became the best of friends for the remaining decades of the camp survivor’s life.

But when I think of D-Day, part of an honorable war, I think about how Uncle Lindy kept his war stories secret for forty years. He returned from the army after war’s end, after seeing his friends killed right next to him as a 17, 18, 19 year-old man, and opened a grocery store, got married, raised a family. For decades and decades, he didn’t tell his wife or closest friends about everything he had seen.

Maybe ten years ago, he visited my father, his brother-in-law, and brought some of his war memorabilia to share. In my father’s living room, he unrolled an enormous Nazi flag that he had taken from the side of a school in Germany, showed us Nazi medals he had taken from the bodies of dead soldiers, kept wrapped in bolts of cloth. My father, who had known Lindy for the better part of fifty years, had never seen these items before, had never before heard Lindy’s war stories. Even now, when he talks about the war that ended more than sixty years ago, Lindy will sit at the kitchen table and cry. Even now, even sixty years later, what he witnessed and remembers still brings him to tears. And this was an honorable war.

When I thought about D-Day this weekend, I couldn’t help thinking of all the soldiers returning from Iraq who have seen worse than Lindy could have imagined, who have worse injuries, who will live the rest of their lives with disabilities our medical systems and public spaces aren’t equipped to support, who will live the rest of their lives with psychological trauma, with terrible, terrible memories.

And this, to me, is the biggest tragedy of the Bush administration: that hundreds of thousands of American soldiers, Iraqi soldiers, Iraqi civilians—hundreds of thousands of people have been irrevocably changed by what they’ve seen and done and heard as a result of a war many people now understand as needless, unwarranted. The opposite of honorable. I can’t even begin to imagine how many years this trauma will reverberate in families of American soldiers, in families of Iraqis.

So on this D-Day, I grieved for my Uncle Lindy, for all that he’s suffered these sixty-odd years, but also for all who have fought in our current wars, whose lives are only beginning to be shaped by what they’ve seen.

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

People recall exactly where they were when history touches their lives. In 1945 my father heard the news of President Roosevelt’s death on the Armed Forces Radio Network. He was in the U.S. Army Air Corps and stationed on Guam. His job was to send coded messages to American submarines. “F.D.R. dead” he tapped and the first reply came back: “Say it ain’t so.”

Of course these stories are legion. Where were you when France was liberated, or when President Kennedy was assassinated? What were you doing on 9-11, or when you heard that Nelson Mandela was elected President of South Africa? Not only do we tell these stories, we need to tell them: it’s a building block of culture to share feelings that arise from the collisions of public and private experiences.

This need for suffused stories is in fact what poems are about though poets will argue about the ways and means. Robert Frost wrote intricate, metrical verse about rural Americans and accordingly his poems are stylized reinterpretations of what common folk might have said alone on their farms when the 20^th century was still new. In turn William Carlos Williams sought to create poetry that was freed from the classroom and sounded like the spoken language of common people. Still, whatever the approach, poetry finds the marriage between public and private, and while it is seldom reliable in the ways of journalism it tells us how the affairs of history become particulate and personal.

Now that we are some five months into the Obama administration it may be easy for some to allow themselves to forget the willful and dark effects of the prior presidency on what we might call the public’s morale. But for my part I will never forget those hopeless years because my solace in those days came in part from a sonnet by Percy Bysshe Shelley:

England in 1819

An old, mad, blind, despis’d, and dying king,

Princes, the dregs of their dull race, who flow

Through public scorn–mud from a muddy spring,

Rulers who neither see, nor feel, nor know,

But leech-like to their fainting country cling,

Till they drop, blind in blood, without a blow,

A people starv’d and stabb’d in the untill’d field,

An army, which liberticide and prey

Makes as a two-edg’d sword to all who wield,

Golden and sanguine laws which tempt and slay,

Religion Christless, Godless–a book seal’d,

A Senate–Time’s worst statute unrepeal’d,

Are graves, from which a glorious Phantom may

Burst, to illumine our tempestuous day.

Shelley’s poem, written in a time of national exhaustion and extreme political corruption spoke to my subjective feelings about George W. Bush’s war in Iraq and the associated adoption of legalized spying on American citizens by a senate that neither saw nor felt nor cared what it was doing to our nation.

The poem continues to speak for my horror at the spectacle of the Christian fundamentalists who cry for the blood of abortion doctors or who call for the elimination of social programs that help the poor. One can still hear them daily. And one can hear the corporate media spinning right wing opposition to President Obama’s health care proposals and economic policies as if the United States isn’t really experiencing the greatest wave of unemployment and human suffering since the great depression; as if health care for our citizens should be a privilege and not a right; as if the bible should never be open to the New Testament but only the old—say a book like Leviticus.

And so Shelley’s poem is my poem in mind on many days. It reminds me of our recent national despair and of our present peril.

S.K.

In On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss by Elisabeth Kubler-Ross and David Kessler one reads the following conclusion:

“The time after a significant loss is full of the feelings that we usually have spent a lifetime trying not to feel. Sadness, anger, and emotional pain sit on our doorstep with a deeper range than we have ever felt. Their intensity is beyond our normal range of human emotions. Our defenses are no match for the power of the loss. We stand alone with no precedent or emotional repertoire for this kind of loss. We have never lost a mother, father, spouse, or child before. To know these feelings and meet them for the first time brings up responses from draining to terrifying and everything in between. We don’t know that these foreign, unwelcome, intense feelings are part of the healing process. How can anything that feels so bad ever help to heal us? ”

“With the power of grief comes much of the fruits of our grief and grieving. We may still be in the beginning of our grief, and yet, it winds its way from the feelings of anticipating a loss to the beginnings of reinvolvement. It completes an intense cycle of emotional upheaval. It doesn’t mean we forget; it doesn’t mean we are not revisited by the pain of loss. It does mean we have experienced life to its fullest, complete with the cycle of birth and death. We have survived loss. We are allowing the power of grief and grieving to help us to heal and to live with the one we lost.”

“That is the Grace of Grief.

That is the Miracle of Grief.

That is the Gift of Grief.”

Watching today’s ceremonies marking the 65th anniversary of the D-Day invasion I was struck by the inadequacy of the speeches by Presidents Obama and Sarcozy and by Prime Ministers Harper and Brown.

If indeed there are “fruits of our grief and grieving” they surely must reside in the stories of the veterans themselves. As the television cameras turned from the somber presidents and prime ministers to display the surviving old men of D-Day, some of them in wheelchairs, many with canes, I found that I wanted to hear from them–if not “instead of” the politicians, then certainly beside them. Only those who have lived with the arc of grief and grieving, what Kubler Ross calls the “intense cycle of emotional upheaval” can truly tell us what it means to discover and embrace reinvolvement with the world.

President Obama does have personal connections with D-Day and the battles that followed. His grandfather Stanley Dunham marched with General George Patton’s army. The president incorporated abbreviated stories of American soldiers in his speech. Yet only veterans can tell us of the human cost of defending freedom and of the struggle to make something productive from grieving. Surely in these times when America is experiencing difficulties serving its wounded warriors we need to hear from those who have fought to live with the power of grief and grieving to help us heal.

Stephen Kuusisto

This article appears in full in the Denver Post. The excerpt is from The Inclusion Daily Express.

Denver Public Schools Puts Preschoolers With Disabilities Into Inclusive Classes
(Denver Post)
June 4, 2009

DENVER, COLORADO– [Excerpt] At first, Patricia Valdez was not sure she wanted her 4-year-old daughter, Arianna, in a full-day preschool classroom with typically developing children.

Doctors suspect Arianna may have autism, her mother said. The girl’s speech is delayed, and she sometimes has trouble communicating.

Until this year, Denver Public Schools would have placed Arianna with other preschool kids with disabilities in a self-contained classroom staffed by special-education teachers and therapists.

This year the district tried out a pilot program to include 50 kids with disabilities in six of its preschools, and Arianna is in one of them.

“It has speeded her up,” said Valdez as she dropped off Arianna at Trevista at Horace Mann, in northwest Denver. “She’s made great improvements. She knows her colors and numbers. She is starting to express herself more and is not all blank.”

Entire article:
DPS puts preschoolers with disabilities into inclusive classes
http://www.denverpost.com/technology/ci_12498084

S.K.

In his memoir Point to Point Navigation Gore Vidal argues that “the novelist” is no longer a public figure of any notoriety. One may say that Gore Vidal has earned the right to say such things for his literary career has spanned an age in which both novelists and their art have passed from considerable attention and into the shadows. I like what Mr. Vidal has to say about how this diminution of the novelist’s fame has almost nothing to do with literary merit though I will say more about this “on the other side”. Here is what Mr. Vidal says:

“Recently I observed to a passing tape recorder that I was once a famous novelist. When assured, politely, that I was still known and read, I explained myself. I was speaking, I said, not of me personally but of a category to which I once belonged that has now ceased to exist. I am still here but the category is not. To speak today of a famous novelist is like speaking of a famous cabinetmaker or speedboat designer. Adjective is inappropriate to noun. How can a novelist be famous–no matter how well known he may be personally to the press?–if the novel itself is of little consequence to the civilized, much less to the generality? The novel as teaching aid is something else, but hardly famous.”

“There is no such thing as a famous novelist now, any more than there is such a thing as a famous poet. I use the adjective in the strict sense. According to authority, to be famous is to be much talked about, usually in a favorable way. It is as bleak and inglorious as that. Yet thirty years ago, novels were actually read and discussed by those who did not write them or, indeed, even read them. A book could be famous then but today’s public seldom mentions a book unless, like The Da Vinci Code, it is being metamorphosed into a faith-challenging film.”

“Contrary to what many believe, literary fame has nothing to do with excellence or true glory or even with a writer’s position in the syllabus of a university’s English Department, itself as remote to the Agora as Academe’s shadowy walk. For any artist, fame is the extent to which the Agora finds interesting his latest work. If what he has written is known only to a few other practitioners, or to enthusiasts (Faulkner compared lovers of literature to dog breeders, few in number but passionate to the point of madness on the subject of bloodlines), then the artist is not only not famous, he is irrelevant to his time, the only time that he has; nor can he dream of eager readers in a later century as did Stendhal. If novels and poems fail to interest the Agora today, by the year 3091 such artifacts will not exist at all except as objects of monkish interest. This is neither a good nor a bad thing. It is simply not a famous thing.”

Vidal reminds us of the serpentine intersection of technology, history and the discernment or apprehension of the public mind in the making of noteworthy culture. Between 1850 and 1970 the novel was a widely discussed public “thing” –a “famous thing” as Vidal would have it but that “FT-ness” was in no small measure a reflection of improvements in printing technology. The novel was serialized in inexpensive popular magazines that were in turn widely read and swapped in public which is to say that the art form was the Agora’s currency. But when widely read coffee table magazines vanished in the mid 1970’s the novel immediately went on life support where it remains. Its not that novels and poems fail to interest the Agora today its that the Agora no longer has a mere handful of culturally dominant and easy to find delivery systems that present literary writing in every living room and coffee shop. (A notable exception is represented by the work of Oprah Winfrey who has used  her popular daytime TV show as a pulpit for good literature. But even Oprah can’t save the novel when the Agora is distracted and when it turns distractedly to more TV since that same exhausted Agora has almost nothing to read.) Where in America will you find literary magazines at the supermarket check out line? (I’m not talking about progressive food co-ops in university towns where you might find the latest issue of The Utne Reader.) 

“Ah, but Mr. K,” you may conceivably ask, “How come romance and thriller writers sell tons of books?” To which I would (presuming I heard you) reply that selling books isn’t the issue. Books are still being sold and read. I know several contemporary novelists who are selling books including Russell Banks, Ethan Canin, and Michael Cunningham. The point that Mr. Vidal is making is that writers are no longer culturally recognizable figures because the Agora isn’t being introduced to them the way its introduced to sports figures or politicians or notable scoundrels. Television used to look to the magazines and the press for cultural guidance but it no longer does so, indeed it cannot do so when the magazines and newspapers have gone the way of the telegraph and when the blogs and Zines have not been wholly successful at taking the central place of popular magazines that once sold fiction to the public. (Let us recall that Ernest Hemingway was famous because of Life Magazine long before Hollywood got ahold of him. In the mid 20th century Life Magazine  was the equivalent of TV and the internet and in turn it was a machine for introducing Americans to novelists.)

Well okay we all know this –we who love books or who deign to write books or at least profess such arcane interests. We also know that the novel is not going away for the art is not “of little consequence to the civilized, much less to the generality” as Vidal would have it. The appetite for good writing remains undiminished in America. Of course it does.

Yet by God the enfeebled spotlight still trails the contestants of reality TV shows and try though you may, you will not discover novelists on The Tonight Show. In fact I predict that Conan O’Brien will be as much a failure in this regard as was Jay Leno. In Mr. O’Brien’s case this will be all the more disappointing given his Harvard background. (I do not flatter myself imagining Mr. O’Brien will see my blog.) The point is clear though: TV needs to step up and reintroduce Americans to writers even as it tosses us paste for the eating and its vinegar for drink.

S.K.

Continue reading “Lots of Rhetoric But Little Action Where Veterans are Concerned”

The following article is excerpted from Inclusion Daily Express. Our contention at POTB is that all contestants on performance based television programming are not performatively value neutral like the people on a sing-along in your front parlor but are instead presented as gladiators. It is no surprise that in such environs both art and humanity are throttled.

S.K. 

Should TV Show Have Treated Susan Boyle Differently?
(The Telegraph)
June 1, 2009
LONDON, ENGLAND– [Excerpt] The makers of Britain’s Got Talent are facing a possible Ofcom inquiry into their handling of Susan Boyle after she was admitted to the Priory clinic amid fears for her mental health.

Producers only provided a counsellor for Boyle at the beginning of last week, despite the strains of the media spotlight mounting far earlier in the show.

The 48-year-old, who suffers from learning [intellectual] disabilities as a result of being starved of oxygen at birth, became an international sensation after her first audition was televised on April 11.

Matters came to a head after Boyle lost Saturday night’s final and was reported to have thrown water over a producer backstage. On Sunday, she was seen by a private GP at her hotel before being taken by ambulance to the north London clinic, suffering from “emotional exhaustion”.

Ofcom, the media watchdog, has received a number of complaints about Boyle’s participation in the show. John Whittingdale MP, chairman of the Commons culture, media and sport committee, said the programme-makers had questions to answer about their duty of care to such a vulnerable contestant.

Entire article:
Susan Boyle: Makers of Britain’s Got Talent facing questions over her care
http://www.inclusiondaily.com/news/2009/red/0601f.htm
Related:
Opinion: Susan Boyle Should be Given Accommodation for Her Disabilities (Digital Journal)
http://www.digitaljournal.com/article/273343
The media can’t diagnose Susan Boyle – and we shouldn’t try (The Guardian)
http://www.inclusiondaily.com/news/2009/red/0601h.htm
Susan Boyle fairy tale sours as she enters clinic (Associated Press)
http://www.inclusiondaily.com/news/2009/red/0601g.htm