Planet of the Blind

Could It Be?

My "baby" is all grown up now!

Tara, Congratulations!

Click the thumbnail above to view montage of Tara's graduation from the University of South Carolina, May 9, 2008.  (Summa Cum Laude I might add...)

Photos are of Tara, her brother (Ross, in black), Rick (Tara's Dad) and Jan, Tara's grandparents (Bill and Norma), and myself.  I'm sorry to say Steve couldn't be there for the ceremony.

Needless to say, we're a proud family.

~ Connie

*Oh gosh, I forgot to mention Tara's beau, Ryan (in blue).  He's in some of the photos as well.  Sorry 'bout that Ryan...

Blind professor helping UI students, doctors see disabilities in a new light

Steve Kuusisto, an English professor at the University of Iowa in Iowa City, Iowa, also has a joint appointment in the Carver College of Medicine as a "humanizing agent," helping educate doctors about disability issues. In this video, Kuusisto talks about his blindness, interacts with his students and discusses his current career ventures. GazetteOnline video by Michael Barnes.

LINKS:

Project 3000

May 16, 2008 

EDUCATION 
Opening others’ eyes 
Blind professor helping UI students, doctors see disabilities in a new light

By Diane Heldt
The Gazette

IOWA CITY — Blindness is thought by many to be a great calamity, still viewed in 19th-century Dickensian terms, says University of Iowa professor Steve Kuusisto.

  But the reality, says Kuusisto, who has been blind since birth, is that his talking computer, his guide dog and public transportation allow him to do most anything sighted people can.

  “It’s not an obstacle to having a good job and a full life,” he said. “Nobody has to have a second-class life. Really, the sky’s the limit.” That philosophy, the 53-year-old Kuusisto said, fuels a new vision of disability that is emerging. That vision moves away from viewing people with disabilities as “defective,” he said, to finding ways for technology and society to help them lead the richest, fullest lives.

  It’s a vision Kuusisto (pronounced COO-sis-toe) brought to the UI last fall when he joined the faculty as an English professor with a joint appointment in the Carver College of Medicine.

  At the medical college he is a “humanizing agent” who helps educate doctors about disability issues. UI officials hope Kuusisto bridges the goals of disability advocates and health professionals.

  “I’m probably the firstever poet named to a faculty of ophthalmology,” Kuusisto says with a smile. 

 

UI contributes to gene therapy breakthrough for blinding eye disease

University of Iowa News Release

April 28, 2008

UI contributes to gene therapy breakthrough for blinding eye disease 

Researchers at the University of Iowa played a key role in a landmark gene therapy breakthrough reported Sunday, April 27, in an online article in the New England Journal of Medicine. 

The study reported improvement in vision following gene transfer to the retina in three patients with an inherited form of blindness known as Leber congenital amaurosis or LCA. The study was carried out at the Children's Hospital of Philadelphia by an international team led by the University of Pennsylvania, the Children's Hospital of Philadelphia, the Second University of Naples and the Telethon Institute of Genetics and Medicine (both in Italy), the UI and several other American institutions. 

This is the first report of successful gene therapy of an inherited eye disease in humans. Although the patients have not achieved normal eyesight, the preliminary results set the stage for further studies of an innovative treatment for LCA and possibly other retinal diseases. Patients' vision improved from detecting hand movements to reading lines on an eye chart. 

Edwin Stone, M.D., Ph.D., UI professor of ophthalmology and visual sciences and a Howard Hughes Medical Institute investigator, led the genetic testing portion of the study. Stone's group developed a method for distinguishing disease-causing mutations from benign genetic variants, and this method was used to choose the patients who were treated in the gene therapy study. The Iowa group also developed a highly efficient nonprofit testing strategy that has allowed genetic testing for LCA to be offered on a national scale. 

"This is a very exciting day for everyone involved in caring for patients with inherited eye disease," Stone said. "We are very pleased that the Carver Lab at the University of Iowa was able to contribute to this important step forward." 

Among those recognizing the breakthrough were John and Marcia Carver, members of the family who donated $10 million in 2005 to create and name the John and Marcia Carver Nonprofit Genetic Testing Laboratory and the associated Carver Family Center for Macular Degeneration at the UI. "We were very happy to hear of this extraordinary scientific result and excited that the Carver Lab had an important hand in it," John Carver said. 

The UI is also home to Project 3000 (http://www.project3000.org), a philanthropically supported grassroots effort to find all 3,000 people in the United States affected with LCA and to offer them a genetic test whether or not they have insurance coverage to pay for it. 

Project 3000 was created in 2006 by Stone, Derrek Lee, who is first baseman of the Chicago Cubs, and Wyc Grousbeck, who is co-owner and CEO of the Boston Celtics. Lee and Grousbeck have children affected with LCA.

The Basic Facts Writ Small

What do you know? Aristotle’s Ethics; Ted Williams lifetime records…

Know how fresh water salmon can be caught…

Joseph Stalin’s favorite gramophone record

Was a recording of wolves…

There are certain facts upon which you can’t improve…

They used to feed pigment through the bodies of earthworms back in the middle ages,

Just to produce a certain shine

In the paint used when making stained glass…

And Detroit automakers destroyed the world’s greatest passenger railway system in under 4 years…

S.K.

Getting Lost

The following “prose poem” is from my book in progress entitled “Mornings With Borges” which will be published by Copper Canyon Press in the Fall of 2010 if we are still holding our own on this mad planet. Like most of the poems in the book this is about being lost in multiple and oddly productive ways.

S.K.

Helsinki, Labyrinth, 1982

I got lost in the library last night and like most blind people I touched walls and the spines of books.

“Hey Borges,” I said to myself, “Where do I find the entrance to Uqbar?”

(When I was a kid I used to climb in secret on the roof and sleep up there.)

So lost as I was, I pulled a book from a shelf and held it like a royal pillow.

I saw I was full of utility

Like a designer of fountains

Who does his best work in winter.

Flying Boogers

In his column the "Middle Seat" for The Wall Street Journal, Scott McCartney writes about the state of the airline industry and what that means for all of us as we rely on this mode of transportation for business and for pleasure.  Let me rephrase that.  We rely on the airline industry to take us to places for business and/or pleasure.

Today I happened to catch Fresh Air on NPR as McCartney explained in disgusting detail why to avoid the middle seat on an airplane and were I near a phone I would have called in to state my case as to "why to avoid any and all seats..."  I was unable to make such a call but that won't stop me from sharing my latest experience with all of you should you decide to continue reading this post.  Consider that a warning...

Rudely Lucky

I am a lucky man because I own several rotten wood piles and an abandoned outhouse.

Yes. I’m a New Hampshire land owner and Jeezum Crow I have some God Awful things out in the woods.

I have a discarded septic tank that looks like a Soyuz space capsule.

I have a shaggy carpet of moss and a migratory flock of wild turkeys to stand on it.

I am in these ways what you might call a wealthy man.

Last summer a raccoon took up residence in the septic tank. I nicknamed him Yuri for obvious reasons.

I track the weather in New England from Iowa City. They say that today will augur fierce winds and heavy rain and I hope that my dear old outhouse will endure.

I am mindful that if my only worry is the disposition of my abandoned outhouse I’m in good shape.

I hope Yuri is okay.

Summer is coming.

A man’s thoughts turn to his outlying septic tank and spiders, mushrooms, loons, and cinnamon ferns in sunlight.

The Psychopathology of the Rotary Telephone

I recall it as an imperial thing: heavier than an encyclopedia, squat as an animal.

I remember fearing it somewhat. When I picked up the receiver there was a woman’s voice—a dark inquiry from a stranger. She said I shouldn’t play with the phone.

Now, in my fifties I dislike the damned instrument.

I see college kids walking all over town and chattering into cell phones. They seem to be nothing more than mannequins granted the gift of speech.

I understand everything!

We require the fearsome Operator more than we knew.

In the good old days the Operator kept our conversations honest and short.

Honest and short! Imagine!

Yes and in the good old days one had to have a reason for placing a call.

I heard a college student on the bus just the other day telling her friend: "I’m on the bus. I’m eating popcorn on the bus. I’m going home on the bus."

God help us!

I dial an imaginary phone with my index finger.

S.K.

Victor Mature Has a Bad Hair Day

A Queen with rubies and a man

In a tunic swap hormones

Til they spin like dancers and Lo!

Its a short life pure hypnosis…

Love—no love—troubador scarves—no

Matter—lovers go.

“I cannot fail but for your honesty.”

“I have loved you for years.”

“I’m home today, washing my toupee in Woolite.”

“Give me a call…”     

S.K.