Feb. 18, 2008
Watch an audio slideshow of Kuusisto in the current issue of FYI at http://www.uiowa.edu/~fyi/issues/issues2007_v44/02182008/fyi_story/.
A related photo slideshow may be viewed at http://www.uiowa.edu/~fyi/issues/issues2007_v44/02182008/photos/photofeature021808/index.htm.
Blind professor helps others see another side to disabilities
Earlier in his career as a writer and college professor, Steve Kuusisto lost his job in a round of budget cuts. Blind since birth, Kuusisto contacted an agency that served people with impaired vision to ask for help transitioning to a new academic position. Their advice to him: "There's a factory down the road that makes plastic lemons. They hire blind people."
Kuusisto managed to avoid the plastic lemon factory and unfold an impressive career as an author, educator and advocate for people with disabilities, a path that recently led him to the University of Iowa. He shares the story to illustrate a point: sometimes even those working to help people with disabilities consign the disabled person to a second-class, defective status.
That thinking is something Kuusisto is working to change. He joined the UI faculty in fall 2007 with a joint appointment in the Roy J. and Lucille A. Carver College of Medicine and the College of Liberal Arts and Sciences.
In the Department of English, he's teaching creative nonfiction, memoir and essay writing, and developing courses in the area of "disability studies" -- an interdisciplinary approach to the humanities that examines how cultural and historical forces shape the way the public thinks of disability. This summer, Kuusisto, a graduate of the UI Writers' Workshop who developed a disability studies program in his previous position at Ohio State University, will teach the first UI course on disability in film. He's serving as an advisor to UI alumnus and playwright Rinde Eckert for a play about blind people receiving treatment at the university; the show will premiere at Hancher Auditorium.
"We're looking at the prospect nowadays that disability is simply a social construction. In other words, if you made the right accommodations, disability would disappear. The only way you can have a disability is to create environments that disable people," Kuusisto said. "I'm interested in teaching courses on disability public policy, but also through a humanities perspective, looking at nonfiction, autobiography and movies about people with disabilities."
On the health campus, Kuusisto is working to educate doctors about contemporary disability issues. Each week, he attends multi-hour teaching sessions with ophthalmologists, residents, medical students and scientists researching aspects of vision loss, bringing a face to their understanding of blindness.
"It troubles me greatly that 75 percent of blind people of working age in the United States remain unemployed, regardless of their education level," Kuusisto said. "The old-fashioned physician would say, 'Sorry, there's nothing more we can do for you.' The person with the disability was then sent to live on food stamps, live on disability Social Security, or live in an institution. Today, we understand that you can have an equally advantageous, remarkable life whether you're disabled or not. But doctors don't necessarily know how to help people with a disabling condition get the full range of rehabilitation, social services and accommodations they need."
Dr. Edwin Stone, a professor of ophthalmology in the Carver College of Medicine who was instrumental in bringing Kuusisto to the UI, said having Kuusisto on board helps bridge the goals of disability advocates and health professionals.
"The evangelical disabled person might adopt the attitude, 'Why do I need to be cured? I'm fine as I am,' while the evangelical curing person might adopt the posture, 'Why spend any resources on figuring out ways to accommodate visually disabled people? We ought to spend time trying to cure them,'" Stone said. "It's grossly inappropriate that these two concepts are so separate. There's no reason we can't pursue both: aspire to reduce blindness through surgical or medical treatments, while simultaneously being sensitive to the needs of people who are visually impaired and working to help them in every way possible. That notion that it is 'all one thing' evolved out of that first meeting with Steve."
Blind since birth
Born three months premature, Kuusisto weighed just 2 pounds, 2 ounces, a situation that would challenge medical professionals even today but was even more dire in the 1950s. His twin brother died a day after birth, and Kuusisto was placed in an incubator, a new technology at the time. While the incubator allowed him to survive, the forced oxygen he received inside it destroyed the developing capillaries in his retinas, a condition called retinopathy of prematurity, or ROP. The result was blindness.
Kuusisto grew up in New Hampshire and his father's native country, Finland, and fought hard to attend public schools, something disabled children weren't always able to do at that time. In high school, he took a course taught by a UI Writers' Workshop graduate who introduced him to "jazzy, contemporary poetry." Kuusisto went to college planning to attend the workshop, and he did in the 1970s; he has been preoccupied with literary writing ever since.
Influence on writing
Blindness affects what Kuusisto writes about and the way he writes it.
"When I write about the moon or a field of strawberries or a cornfield, I'm writing about a thing I cannot see, so I bring my imagination and the joy in the application of language to bear," he said. "I'm not writing about the real thing, I'm writing about the Utopian, imagined thing, and that's a different kind of writing."
Realizing that blindness mystifies the sighted population, Kuusisto decided to write a memoir, "Planet of the Blind." The bestseller, published in 1998, remains in print today and has been translated into 10 languages.
Kuusisto's latest nonfiction book, "Eavesdropping: A Memoir of Blindness and Listening," is about his experiences traveling the planet to sightsee by ear.
"It's an odd book, a book without a plot -- like Seinfeld," he said. "There are passages where I'm describing incredibly random and tiny sounds that other people aren't hearing. I'm paying attention to the fringes of the soundscape. We could be sitting outside on deck chairs talking, and I'd be hearing three blue jays fighting a half-mile away. I'm listening to how they rhythmically talk to each other, and all the while I'm carrying on a conversation about Tom Brokaw."
'You can't be shy'
Students in Kuusisto's creative nonfiction writing class were clearly surprised and intrigued when he strolled in the first day of class with his new guide dog, Nira, and a trainer from Guiding Eyes for the Blind who was helping the pair work together.
But Kuusisto took their curiosity head-on, explaining how he became blind and fielding questions about guide dog etiquette and how he does everyday things. Yes, he told the class, it's rude to pet the dog when they're crossing the street; the dog is working. And, yes, he can check e-mail, using a talking computer. He used the opportunity to educate his students about blindness and also to introduce his sense of humor.
"One thing you never want to do with me is raise your hand and wait to be called on," he said with a laugh. "What I hope you'll do is just barge right in with a question. Or maybe I should get you whistles, or better yet, kazoos."
Kuusisto warns his students that he tends to be loud, admitting that he got in a little trouble for disturbing other classes last semester. But, he said, an outgoing personality is a plus for a blind person.
"You can't be shy," Kuusisto said. "It's a terrible disability for people who are shy because you have to be able, in an unfamiliar airport or an unfamiliar part of town, to stop strangers and ask for advice. You've got to have great trust and faith in your fellow humans, and they never let me down."
STORY SOURCE: University of Iowa News Services, 300 Plaza Centre One, Suite 371, Iowa City, Iowa 52242-2500
MEDIA CONTACT: Nicole Riehl, 319-384-0070, firstname.lastname@example.org