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

Song

            –Elegy for the folk singer Bob Gibson

I’ve got joy in my shirt and joy in my hair,

Got joy in my apple tree

Got joy up the stairs—

It’s just that kind of day.

Got rhubarb in my back seat

Got bananas in my trunk,

When I’m driving on the freeway I’m never in a funk

It’s just that kind of day.

Some people tell you all about their blues

As if they haven’t got a dime—

I tell them to stuff some grapes down their shoes

The dance turns funny every single time.

Bring on the tombstone, bring on the mule;

Turn your lamps down low.

When you’re gone you’re gone—that’s the rule—

Why carry on like a tired old Shmo?

I’ve got joy in my shirt and joy in my hair,

Got joy in my apple tree

Got joy up the stairs—

It’s just that kind of day.

You might hate me for singing this song,

But that’s okay with me:

You’ve got your job and me? I’ve got to get along

I’ve got joy in my blossoms and bees.

I’ve got joy in my shirt and joy in my hair,

Got joy in my apple tree

Got joy up the stairs—

It’s just that kind of day.

It’s just that kind of day…

(Sung to the tune of Bob Gibson’s "Joy, Joy, Joy")

S.K.

Exploring the Empty Nest – on horseback!

Although I have ridden a few times since then, it’s been many years since I’ve actually taken horseback riding lessons.  (Dare I say close toConniearthur_3
20?)  One of Steve’s arguments, or should I say "incentives", for moving to Iowa is the close proximity to the countryside – and horses.  I took his argument seriously and yesterday I took the first of what I hope will be many more lessons.  Meet "Arthur".

I arrived at the stable (Wyndtree Farm) and greeted by a very young lady named Winter.  And I do mean young – as in 11 – and maybe 4′ tall.  Winter had been instructed to meet me and help me get ready for class.  "I’ll go get Arthur" she said.  The next thing I knew she was leading this HUGE horse (16+ hands) down the center aisle.  I’m not sure these photos do him justice.  Just trust me when I say "huge".  It was rather comical watching this supremely confident, tiny young lady handle this gentle giant.  Tossing the saddle pad on his back was a huge stretch for her.  I assisted with the saddle.  It was the least I could do.

I’m pleased to say the lesson was uneventful and most delightful (thank you, Denise!)  My form, it turns out, was not too bad after all these years, or so I was told. Holding it took some effort, however.  Never mind.  I look forward to working on it!

Arthur2Photo descriptions: Arthur is a dapple-gray gelding, 16+ hands.  I was told he’s part Percheron, part Thoroughbred.  In the top photo I am standing by his right shoulder, an indication as to just how big he is (I’m 5′ 2").  In the bottom left photo we see him standing alone.

Top Ten Reasons Why the Blind Can't Get Ahead

10. The public still thinks blindness is a great misfortune.

9. Vocational and orientation-mobility training are horrifically funded—that is, its left up to the states and nonprofit organizations when it should be offered by every eye clinic and billable to Medicare.

8. Blindness advocacy organizations fight amongst themselves like the characters in “Gulliver’s Travels” who start a civil war over the question of which end of the hard boiled egg to break first—the big or small one.

7. Just try using a cell phone or a Macintosh pc. I mean “off the shelf” “ready to go”—just try it.

6. Just try using a PC “off the shelf” without expensive “third party software”—just try.

5. Just try going to a movie and asking for audio description.

4. TV can’t be watched—probably a good thing.

3. Bank machines; vending machines; signage; endless roulette of incomprehensions…

2. Blind students drop out of college at higher rates than other disabled student groups. See above problems.

1. Access to printed or electronic information remains highly provisional. Thank you Google; Microsoft; Apple; Adobe; Mozilla; Sun Micro Systems; and all the rest of you bongo whacking Information Technology designers who continue to think of the blind as “add on” people. In Disability Studies we call this principle “the defective people industry”.

Why am I posting such a riposte on Memorial Day?  Ask the Blinded Veterans of America.

S.K.

"Welcome to the 38th Disability Blog Carnival!" says Kathryn

The theme of this carnival, organized by Kathryn on her blog: Ryn Tales Book of Days, is "Spirituality and Disability"

"Many philosophers have thought
along with Descartes that "the unexamined life is not worth living".
And Shakespeare said, "Know thyself!" To that end the topic for this
carnival is about the spiritual meaning of experiencing disability
either first or secondhand in this life. I think you will find some
very thoughtful and in many cases poetic examinations of lives being
lived by the carnival’s contributors."

A great deal of thought and work is put into these Disability Blog Carnivals.  Take a few minutes, will you, to stop by, read some great posts, and say hello.   

Cross-posted on Blog [with]tv
 

Of Parchesi and Blindness

Do you remember playing "Parchesi"?

You’d roll the dice and move your wooden nubbin up a row of squares until you jumped a row and arrived at another identical and deterministic block of squares.

Parchesi, like most board games was originally invented as a soft way to kill time.

Basically it was a pastime for palace courtesans who had to wait around until the King came home.

It’s what you played while you wondered if your head would be cut off at sundown.

Lately the news has been filled with stories about the decision by a Federal Appeals court in favor of a lawsuit calling for the U.S. Treasury to issue "blind friendly" money.

I think any reasonable person would agree that having currency that the blind can identify is a good idea. Heck, those Europeans (you know, those people who make better hair care products and automobiles) have been issuing "blind friendly" money for years.

The Parchesi game starts when one group of blindness advocates disagrees with another group.

The lawsuit calling for accessible money was filed by the American Council of the Blind, a national blindness advocacy organization located in Washington, DC.

Continue reading “Of Parchesi and Blindness”

Iowa blind advocates (Steve being one of them) disagree over court ruling on paper money

Advocates Disagree…(click for complete article)

Updated May 20. 2008 6:04PM
By Diane Heldt
The Gazette
diane.heldt@gazettecommunications.com    

A federal appeals court ruling Tuesday that paper money — indistinguishable by touch — is discriminatory to blind people was hailed by some advocates as a long-awaited step forward, while others said a change is unnecessary and plays into negative stereotypes about the blind.

Blind people have adapted and often fold money to distinguish the bills, but no longer would have to rely on others to help them if the Treasury Department makes bills of different sizes or prints them with raised markings, supporters of a change said.

"What’s at issue here is the ability to identify money without other people helping you," University of Iowa English Professor Steve Kuusisto, who is blind, said. "My view is, the most accommodations possible help the most people. To be opposed to accommodations that help people is narrow."

The American Council of the Blind sued for such changes, but the government has been fighting the case for about six years. The U.S. Court of Appeals for the District of Columbia ruling could force the Treasury Department to alter money, though the ruling is subject to appeal.

Continue reading “Iowa blind advocates (Steve being one of them) disagree over court ruling on paper money”

New Book: The Lolita Effect

I was out of town – As the mother of two I’m sorry I missed this reading… ~ Connie

University of Iowa News Release
April 25, 2008

Professor: profit motives behind sexualization of ‘tween girls

At Abercrombie & Fitch, little girls were sold thong underwear tagged with the phrases "eye candy" and "wink wink." In Britain, preschoolers could learn to strip with their very own Peekaboo Pole-Dancing Kits — complete with kiddie garter belts and play money. And ‘tween readers of the magazine Seventeen discovered "405 ways to look hot" like Paris Hilton.

This kind of sexualization of ‘tween girls – those between the ages of 8 and 12 — in pop culture and advertising is a growing problem fueled by marketers’ efforts to create cradle-to-grave consumers, a University of Iowa journalism professor argues in her new book.The_lolita_effect

Gigi Durham will read from "The Lolita Effect" at 7 p.m. Thursday, May 8 at Prairie Lights Books, 15 S. Dubuque St., Iowa City.

"A lot of very sexual products are being marketed to very young kids," Durham said. "I’m criticizing the unhealthy and damaging representations of girls’ sexuality, and how the media present girls’ sexuality in a way that’s tied to their profit motives. The body ideals presented in the media are virtually impossible to attain, but girls don’t always realize that, and they’ll buy an awful lot of products to try to achieve those bodies. There’s endless consumerism built around that."

Continue reading “New Book: The Lolita Effect”