Balancing Hearts

Last evening Connie and I attended the world premier of a documentary film entitled “A Friend Indeed: the Bill Sackter Story” which was held at the University of Iowa’s Hancher Center for the Performing Arts.

The story of Bill Sackter’s life and times first received national attention in the early 1980’s when a TV film with Mickey Rooney dramatized Bill’s journey from neglect and institutionalization to a featured place in the heart of a community.

The documentary, directed by Lane Wyrick, brings superbly forward the archival film footage of the real life Bill who captured the hearts of a Midwestern college town and then the whole state of Iowa and finally the nation.

Bill Sackter’s story provides a series of intersecting narratives about people with mental disabilities and the proscenium stage of America’s streets.

Abandoned to a Minnesota hospital for “imbeciles” when still a young child, Bill grew up experiencing the inhumane treatment that was so often “part and parcel” of America’s residential institutions for people with disabilities.

Through a series of fortunate and almost happenstance circumstances Bill meets a young college student “Barry” who befriends him and who subsequently becomes Bill’s legal guardian—moving him in the process to Iowa City.

These details are likely familiar to anyone who has seen the original movie starring Mickey Rooney and Dennis Quaid.

Lane Wyric’s documentary aims to bring the real Bill—who was affectionately known as “Wild Bill”—the “man in the coffee shop”, purveyor of java and good cheer, impromptu harmonica player, inveterate local talker—and in so doing the film allows those who knew Bill personally to reflect on the impact he had on hundreds of students and residents of Iowa City.

The film is tender, achingly sad, poignant, witty, and altogether charming. I do think that owing to some inexperience dealing with disability as a historical subject, Lane Wyrick misses the opportunity to contextualize the history of disability incarceration and to in turn reflect on the contemporary problems faced by pwds who are still being hospitalized against their wills. The drawback to this documentary may rest in its deep affection for Iowa City’s collective love of this almost forgotten man—and so by turns, it doesn’t delve into the symbolic nature of disability and the industries of medicalization or charity that still haunt many.

Still it is a beautiful film and it helps us to hold a sweet man in our hearts.

S.K.   


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“A Friend Indeed – The Bill Sackter Story”

LINKS:


http://www.billsackter.com/Bills_links.htm

Cross-posted on Blog [with]tv

A Friend Indeed – The Bill Sackter Story

Being fairly new to Iowa City I arranged to have delivered to my Inbox Tomorrow’s Best Bets from GoIowaCity as a means of getting to know the place.  I just read yesterday’s issue and as a result, I’m now making plans to attend the World Premier, yep you heard me, the WORLD PREMIER of "A Friend Indeed – The Bill Sackter Story"

Watch the trailer:

"44 years in an institution, unable to read or write, no family,  no place in society – an unlikely friendship changed his life forever…his story inspired millions…

Bill was really a big leader in a movement, unbeknownst to him, of normalizing people’s reactions to people with disabilities…"

To be honest, I’m not familiar with Bill Sackter’s story.  But as someone interested in how the media portrays people with disabilities, I am curious as to how Lane Wyrick, director/editor, has handled this responsibility – and I do consider it a responsibility. I’ve read Lane’s entry The Documentary Begins on the Bill Sachter Documentary Blog and I have no doubt this is a labor of love.  Let’s hope the audience loves it as well.

Steve and I will keep you posted.

~ Connie

LINKS:

Find numerous links to Bill Sackter on Abilities Awareness; A Friend Indeed Premiers…

Update: Here is Steve’s reaction after having seen the film.

Harriet McBryde Johnson: She will be deeply missed.

Last night over dinner with friends I learned that Harriet McBryde Johnson has passed away.

My first thought was: “How can we tell our sorrow from our bread?”

We had been talking around the table about untimely death. Not so long ago my friend Deborah Tall died young from breast cancer. She was just hitting her stride as a poet and editor. Her memoir “A Family of Strangers” (which was Published just weeks before her death) is a stunning accomplishment.

Now Harriet has died at 50.

America has lost a disability rights leader and a pioneering voice for dignity and justice.

I don’t want to write obituary prose. I can’t bring myself to do it.

Harriet McBryde Johnson’s wonderful memoir “Too Late to Die Young” should be on America’s summer reading list.

She had the unshakable determination to stand up for the rights of the disabled and she took on public figures who would demean or discount the lives of people whose disabilities scare the pants off of shallow “normates”.

When Jerry Lewis opined in a 1990 “Parade Magazine” piece that in his view being disabled must be like being half a person—Harriet McBryde Johnson took him on.

When Peter Singer opined that certain lives are not worth living she took him on.

She took people on in court as an able attorney.

She took on the Democratic party when it couldn’t see why Terry Schiavo’s story was more than just one family’s tragedy.

She fought for the dignity of human life and fought those forces that would diminish our human experience with sophistry and outworn symbolism.

She will be deeply missed.

Let us carry her flag.

S.K.

LINKS:

Yesterday, from Kay Olson’s The Gimp Parade, where you will also find numerous links to her writings:

Nm0900harriet_2
Overwhelmingly sad news today: Harriet McBryde Johnson has died at age 50.

Image
description: The photo shows Johnson in a flowered-print navy dress
looking toward the camera. She sits in her wheelchair, though the image
is a close-up focusing on her and not the chair. Johnson leans forward,
right elbow on knee, chin in right hand. She’s a middle-aged white
woman with dark hair in a very long braid trailing over her shoulder
and into her lap. She’s not quite smiling, but looking interestedly
back at you.

The Post and Courier of Charleston, SC, provides a preliminary notice, with a more formal obituary expected soon

Also:

Beth Haller from Media dis&dat,
at a loss for words,
Sad News,
RIP, Harriet McBryde Johnson

From a Notebook

A friend tells me that his mother can vocalize the sounds of an Indian railway station at sunrise. We’re sitting in a neglected garden when he tells me this. We are drinking champagne. It is spring but not warm yet. We pour champagne into tea cups and we converse.

My friend who is British and who grew up in India is in love with words, but exquisitely in love with them, the way certain wild animals have been known to covet human toys.

"Mother dined out for years on the Indian railway station trick," he says.

S.K.

Flawless Memory

1.

I arrived at the intensive care unit in the early afternoon.

I was shocked to find my mother rising and falling atop a motorized bed with no nurse in sight.

2.

My mother, who resembled Elizabeth Taylor, even as they both aged and who was now unconscious, or partially conscious; terrified, or without a claim to dignity—with her tracheotomy, her heart monitor, I.V. drips, with a macerated open chest cavity, my mother was being tortured to death in the Portsmouth, New Hampshire hospital on an ordinary day in September. Outside you could see the beginning of autumn foliage.

3.

What to do? Stay calm of course. Despite the bungled surgery and the failures of post-operative care you need the nurses on your side. Everybody who has ever been in a hospital knows you need the nurses on your side. Don’t yell at the nurses. Don’t spit in the soup.

4.

"Excuse me, excuse me, sorry, sorry, but you see I’m blind so I can’t make eye contact and I could hear you over there—yes, hello. Yes, is my mother’s bed supposed to be rising and falling since as I understand it she has an open chest cavity?"

5.

Stray, affiliated questions asked over a 24 hour period:

"Why can’t you sew up her chest cavity?"

"Why can’t you find a chalk board so she can communicate?"

"Why did they perform the heart valve surgery if her sternem was too fragile to close?"

6.

Because I travel with a guide dog I discover things. Even the oldest hospital apparatchiks like to see a Labrador wearing its professional harness.

Discoveries:

My mother’s surgeon is called "the Italian Stallion".

He was once the doctor of a famous TV personality but he left New York and fame and glory for rural New Hampshire.

Since he couldn’t sew my mother up, the stallion put a staple in my mother’s chest but it wouldn’t stay in.

They’ve placed a sort of weighted pillow contraption over her breasts.

7.

Autobiography ain’t the movies. When a loved one dies there is only paper work and seemingly endless journeys to the Salvation Army. We gave away my mother’s favorite clothes. We bundled up the bed sheets and threw them away as if we were Victorian charwomen. What the hell else do you do with the landlord breathing down your neck. They wanted to show her apartment before she was in the ground.

8.

The funeral director handed me a black plastic garbage bag as we stood in the cemetery. "I forgot to give you this," he said, "It’s her teddy bear and her bathrobe. You know, left over from the hospital."

I can’t believe that he’s handed me a garbage bag with a teddy bear inside He might as well have handed me a bundle of shorn human hair and a sewing machine.

9.

My mother’s death was so ghastly it’s taken me 8 years to confront the business. She was an old woman. She had congestive heart failure. She was diabetic. Her body was malnourished owing to years of alcohol abuse. She was a high risk patient for heart surgery. Then the Italian Stallion discovered while leaning above the operating table that he couldn’t sew her chest back together.

10.

And so she slowly bled to death while rising and falling atop an electrical bed.

11.

Homer’s Odyssey, Book Eleven, tells of the journey of Odysseus to the underworld. The man requires words from the dead. Everyone knows that if you want to get home you need the dead on your side. D.H. Lawrence said the dead stay around and help. Or something like that. The Greeks were less certain. Ancestors were no more trustworthy than the gods Odysseus leaned into the smoky underworld and put a bowl of blood on the ground. Soon the shades of the dead came forward and Odysseus saw his mother. She was unloved, grieving, bloodless, thirsty, kept from the world of solid form by the two dimensional forces of Hades. The Swedish poet Gunar Ekelof wrote that everything in Hades is flat. The dead navigate there like sting rays.

12.

Is memory real? Yes and no. Longitudinal studies in "memory theory" report that human beings "see" specific incidents poorly; they remember experiences incorrectly; and after time has elapsed they are convinced of their misapprehensions about the past.

Freud saw that we do not remember the past; we re-arrange it in symbolic figuration. In other words we are at every moment re-inventing the personal pastand we are doing so with the signs and symbols that we have absorbed along the road of life.

Just as there is no "true green" in nature there is no "true memory" stored in the human individual.

13.

I used to believe this. Until I found my mother dazed and bleeding, rising and falling in a malfunctioning bed that was designed to prevent bedsores. Her mattress heaved her wounded torso up, then with a merciless sequence of chirps and a grinding of gears it would drop her back down, leaving her flat for twenty seconds, flat with her leaded cushion over her chest,her eyes wide open, her throat blocked with a tube.

14.

"No, no," said the nurse. "That bed isn’t supposed to do that!"

"Well how long has it been doing this?" I asked.

"I don’t know," she said and then quite literally ran away.

15.

A bowl of blood.

Shadows of early morning.

Good bye

Good bye

A Roman carnival spins at the top of the narrow street.

It’s spring and they are honoring the dead.

Look.

S.K.

Summer Hymn

Summer Hymn

–             -after the Finnish of Pentti Saarikoski

1.

I took the long path to the ocean

I had old songs in mind oak trees stood out like people who have come home

& walking I saw it was a folk tale I knew I was crossing a bridge of shadows

& love me or not I said & yellow flowers what are they

(I didn’t know)

2.

as a boy I worked for many months to starve myself the summer I watched the scouts lower the flag & the hospital settled into night. those boys folded Old Glory like Marines I was at the window: 17 and maybe a hundred pounds

a doctor from Ghana asked me what I was singing.

I said it was the holy art of dying for two voices.

I was anorexic smarty pants

3.

we die in summer even though the last thing we see is ice on the pond

& we live again in summer though we can’t explain

4.

the lame God used to live really live sailed up the Nile got dirt on his hands.

his feet were soft metal, gold, imperfect

today, early june

I lay my head down in the temple of the god

Hermes Endendros

first god withered

first broken in the high branches

first god of summer…

                     –in memory of my mother

S.K.

The FFALF Needs YOU!

CALL FOR NOMINATIONS

The Fred Fay Advanced Leadership Forum (FFALF) seeks to identify proven leaders from the disability community and bring them together with pioneers from the disability rights movement and key current figures for an informal, comprehensive weekend aimed at giving participants the background, training, information and expertise to return to their communities and organizations and lead successful advocacy efforts for disability rights.

The goal of the FFALF is for the next generation of leaders in the disability rights movement from across the United States to get to know and learn from the current generation of leaders, and for them to strategize together about the future direction of the movement.

Nominees will have demonstrated strong vision and leadership ability by having either:

· improved the civil rights and delivery of services for people with disabilities.
· led disability rights actions that have achieved significant results.
· enhanced opportunities for people with disabilities to participate fully in all aspects of society.

Selected candidates will participate in an intensive, two day, all-expense-paid retreat in Boston on October 24 – 26, 2008, covering a wide range of subjects critical to the disability community. The Fred Fay Advanced Leadership Forum is presented by the Boston Center for Independent Living and members of the Advisory Council. National leaders of the disability rights movement and noted public figures will also take part in the FFALF.

Applications due by July 1st.

For more information:

Brochure

Application

Cross-posted on Blog [with]tv

Thank You

The kid next door was trying to put together a tent. He had a couple of buddies with him. He was waving the instructions around and reciting the directions: "Insert part "Q" into part w etc." I was standing in my own backyard with my very old Labrador retriever "Roscoe" who was for his own part reading the instructions from the grass.

The kid with the assembly list suddenly said: "That’s why I was never a Boy Scout!"

"Thank you," I said, softly, smiling with a bouquet of rue in mind. "That’s why I was never a Boy Scout, indeed."

I was never a Boy Scout; and never destined to be a railroad engineer or a shortstop…

Still, back in 1962 I begged my mother to let me join the Cub Scouts.

My mother knew that owing to my blindness I was going to have an uphill struggle and accordingly she also joined the Cub Scouts as a "Den Mother". She probably figured that in this way she could foster activities that I might be able to do. She also knew that I had already been the target of bullies who had taken it upon themselves to hurl insults at me because I couldn’t see. I think she imagined she could control the drama if she was the designated mother of us all.

We made our own popsicles with Dixie cups and we dunked for apples. We made "wampum" belts with Indian beads. We sang songs about bears. We played harmonicas. We wore little blue uniforms and we went to assemblies where we received cloth badges that our mothers would sew onto our shirts.

In short: it was terrible.

Pretty soon we were begging my mother to just let us go out into the woods.

My mother had run out of activities that I could do and she was tired of us all. She gave us her blessing. And we were gone.

We ruined our uniforms by crawling through the trees and climbing rocks. We threw pine cones and pretended they were hand grenades and we were deep inside Nazi territory.

When the other mothers came to pick up their sons they saw one boy who was missing a shirt sleeve. Another had lost his epaulets. Several had torn pants. One kid was minus a shoe. We were covered in pine pitch and dirt. We were sweaty and we stank. We were ecstatic. We were still shooting each other with sticks.

Of course those were expensive uniforms and in those days you had to order them from the Sears and Roebuck catalogue and it took several weeks to assemble the whole getup and we had managed to lose our kerchiefs and the little gold rings shaped like wolves that held the kerchiefs in place and one of us had thrown away his expensive belt by pretending it was a flame thrower and not one of us still had his little hat—we had collectively burned a huge assortment of our expensive military regalia.

That was the end of Cub scouts. My mother was summarily dismissed. But I was for one brief dazzling moment on the frontline of boyhood without bullies or tedious rules.

Thanks Mom!

S.K.

On Being Alex Barton

Mrs. Marcia Cully
Morningside Elementary School Principal

Dear Mrs. Cully

My name is Stephen Kuusisto and I am blind. I was born blind in the mid 1950’s—an era when kids with disabilities were not encouraged to attend public schools. Because my mother was tough minded and persistent I went to the Oyster River elementary school in Durham, New Hampshire instead of the Perkins School for the Blind. Nowadays I make my living as a professor at the University of Iowa where I teach graduate and undergraduate courses in creative writing.   

When I heard the story of young Alex Barton who was “voted off the island” known as Kindergarten because he has behavioral problems associated with an autism spectrum learning disability, and that accordingly his teacher and classmates were simply annoyed by his presence, well, aside from my natural incredulity that such a thing can still happen in the United States, I felt a flood of long repressed tears. You see, I was once a kid like Alex Barton.

I still carry deep under my skin the barbs and taunts of mean spirited public school classmates who found ways to bully me simply because of my disability. I wrote a best selling book about my childhood experiences called “Planet of the Blind”. That book has now been translated into 10 languages. I also host a blog called “Planet of the Blind” where I advocate almost daily for the rights of people with disabilities.

Like many “baby boomers” with disabilities who helped to pioneer the concept of mainstreaming for disabled kids I keep hoping that the vicious and ignorant behavior that I experienced in public schools will at last become a thing of the past.

So you can imagine my deep distress upon hearing the story of young Alex Barton and his teacher Wendy Portillo. I won’t belabor the point. I’m certain that your school district and school board has been hearing a good deal about this affair.

I simply write in this instance to say that unlike the media or those who would take sides on this shameful matter, I am grieving for Alex and his family. The history of disability features a long timeline of stigmatization and I know personally how hard it is to overcome the effects of ridicule and substandard teaching.

I wish you and your community good luck and good sense. I hope it’s not too much to ask that your school district will now take this opportunity to think hard about disability with a renewed sense that kids with disabilities are real citizens too. 

As a final disclosure: I am posting this letter on my blog with the hope that I might hear from you in some affirming way. I’m sure we can agree that there are real lives in the balance. 

Sincerely,

Professor Stephen Kuusisto
The University of Iowa

Holy Cow – would ya look at all these LINKS!

Disability and Language: a NY Times Article Review

This comment was left on a post by William Peace on his blog, Bad Cripple.   Therextras wrote " Thank you for an excellent expose of a typical media dissemination of
language and attitudes we would like not only to reform but squelch. I
hope you sent some response directly to the newspaper." 

Team [with]tv would like to second that remark.

Here is an excerpt from William’s post. 

Monday, May 12, 2008

Disability and Language

Yesterday a long article appeared in the New York Times entitled
"Taking a Chance on a Second Child". The article was written by Michael
Winerip, a Pulitzer Prize wining writer. Mr. Winerip is a seasoned
reporter, graduate of Harvard University and a gifted writer. Yet a day
later I remain stunned and outraged by the language Winerip used. The
article in question is about Jordana Holovach, her son Jacob who is
severely disabled, and her decision to have a second "healthy" child.

The
tone of Winerip’s article is shocking. Each and every mention of
disability is overwhelmingly negative. The language is antiquated,
insulting, and devalues the life of a child and by extension all
disabled children and adults. Among the snippets I found particularly
appalling include the following:

In referring to Ms. Holovach’s son: "And as much as she loves that boy
and as hard as she’s worked to make him whole…she felt snake bit"

Ms. Holovach’s son is "confined to a wheelchair".

Ms.
Holovach’s son was responsible for her divorce: "Her first marriage
ended in divorce under the strain" and "Jacob was a big reason".

Before Ms. Holovach’s son was born "they were successful people" (note tense).

Oh don’t stop here.  Keep reading, there is more….

Then stop by Patricia E Bauer’s blog for this additional link.

Cross-posted on Blog [with]tv