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Stephen Kuusisto
 


 

 

STEPHEN KUUSISTO
Through his teaching, writing, and outreach, a faculty member strives to create an academic culture that celebrates and explores the experience of disability.

It’s been 32 years since Stephen Kuusisto earned his bachelor’s degree from Hobart College, a small liberal arts school in New York, but the University of Iowa professor still sports an emerald class ring from his alma mater. Blind since birth, he wears the ring as a reminder of how few individuals with disabilities earn college degrees—a reality he is working to change.
 
Kuusisto was born three months premature, and he 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. The incubator allowed him to survive, but the forced oxygen he received inside it destroyed the developing capillaries in his retinas, a condition called retinopathy of prematurity. The result was blindness.
 
“College for me was a tremendous breakthrough experience. I graduated with honors, and it led me to the Iowa Writers’ Workshop for graduate school,” Kuusisto says. “But only one in five students with a disability graduates from college. I think about that every day. It makes me eager to help students with disabilities thrive.”
 
Kuusisto joined the UI faculty in 2007 with appointments in both the Roy J. and Lucille A. Carver College of Medicine and the College of Liberal Arts and Sciences. He’s working with physicians and researchers at the University to help promote awareness regarding issues of disability. Nationally, he’s reaching out to people with a rare form of blindness to let them know that researchers are on the cusp of a cure. And, he’s developing courses to improve students’ understanding of disability.

“We highlight the experiences of people with disabilities through the lens of disability studies, an interdisciplinary field that explores what disability is and isn’t,” Kuusisto says. “Our goal is to bring disability into the academic curriculum just like other areas of human concern, such as the African American experience or issues of gender.”
 
Kuusisto believes it’s especially important to create an academic culture that celebrates and explores the experience of disability now, when the number of disabled veterans attending U.S. colleges is expected to quadruple within four years. This summer he plans to teach a new course on disabled veterans’ fight for civil rights and rehabilitation.
 
“The Americans with Disabilities Act was made possible by the hard work of military veterans who came home from the Vietnam War and were angry when they had trouble accessing public facilities,” Kuusisto says. “Seeing eye dogs, now called guide dogs, were conceived by the German Army after World War I. Soldiers were blinded by gas attacks in the trenches, and the dogs were trained to carry messages and supplies. After the war, the dogs were retrained to guide the blinded soldiers through the streets.”
 
Last summer Kuusisto taught the University’s first course on disability in film. Students examined the pros and cons of Hollywood representations of disabilities. The class studied films like Rain Man, the Tom Cruise and Dustin Hoffman movie about autism, Children of a Lesser God, the 1986 film starring deaf actress Marlee Matlin, and The Miracle Worker, the 1962 Helen Keller film starring Patty Duke and Anne Bancroft.

Last summer Kuusisto taught the University’s first course on disability in film. Students examined the pros and cons of Hollywood representations of disabilities. The class studied films like Rain Man, the Tom Cruise and Dustin Hoffman movie about autism; Children of a Lesser God, the 1986 film starring deaf actress Marlee Matlin; and The Miracle Worker, the 1962 Helen Keller film starring Patty Duke and Anne Bancroft.
 
In the Department of Ophthalmology and Visual Sciences, Kuusisto is assisting Professor Ed Stone in finding ways to bridge the gap between the humanities and science. Programs and meetings allow him to spend time with physicians, students, and the occasional patient, as well as donors on behalf of the Carver Family Center for Macular Degeneration.

In doing so, Kuusisto helps to highlight the many ways people with visual impairments can be assisted. For instance, he says, to treat someone with vision loss it’s important to know a lot about their lifestyle, support system, and interests in order to offer them full assistance.
 
“It has become clear to me that ophthalmologists have a very poor understanding of profound vision loss, that we as a group seem to be uncomfortable thinking about it because it represents failure of our subspecialty,” says Stone, who was instrumental in bringing Kuusisto to campus. “Steve has encouraged us to continue our work to reduce blindness through surgical or medical treatments while being sensitive to the needs of people who are visually impaired and working to help them in every way possible. He put into perspective that these are not separate things, that they’re actually aligned.”
 
Kuusisto works closely with Stone, who is researching cures for inherited forms of blindness, including one called Leber congenital amaurosis (LCA). Through an effort called Project 3000 they are collaborating with others to locate the estimated 3,000 people in the United States affected with LCA and let them know that researchers believe they are within a decade of potentially curing the disease through gene therapy. Kuusisto’s role is to raise awareness and help educate people about future possibilities.
 
As an accomplished author and faculty member in the UI Nonfiction Writing Program, Kuusisto is also spreading the word through writing. He’s working on a nonfiction book called Cure: the Race to End Blindness in Our Lifetime. His blog, Planet of the Blind, has a faithful following.

His 1998 memoir, also titled Planet of the Blind, was named a New York Times notable book of the year. His latest nonfiction book, Eavesdropping: A Memoir of Blindness and Listening, relays his experiences traveling the planet to sightsee by ear.

Kuusisto’s writing has pushed him into the national media spotlight as an advocate for people with all types of disabilities. He’s an occasional guest on National Public Radio and was invited to write an opinion piece for the New York Times when David Paterson became the first blind governor of New York. Recently Kuusisto has been asked by the National Endowment for the Arts to speak at a July summit on disability and the arts at the Kennedy Center in Washington, D.C.

“Steve is an incredibly energetic and creative person,” Stone says. “Everything he does is more of a physical challenge than it would be for you or me, yet he walks into the room with his dog, always 100 percent intellectually ready for the issue at hand. You look at him and say, ‘Boy, I wish I could respond to every challenge that came my way with the same amount of vigor and optimism.’”

Story by Nicole Riehl; photo by Tim Schoon. 

Related links:

Audio slide show—Kuusisto and Nira get acquainted with UI campus, each other

Stephen Kuusisto's commentaries on National Public Radio

April 27, 2009

 

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