Stephen Kuusisto takes pride in being part of a global community eager to work for disability rights. He is also proud to be alive in a time when progress is being made for those with disabilities — a group in which he’s included.

Kuusisto, director of Syracuse University’s Renée Crown University Honors Program, has been blind since birth. But that did not stop him from writing books of poetry, memoirs and editorials for The New York Times and The Washington Post.

SU hired Kuusisto in April from the University of Iowa. Though he said he was sad to leave the ‘vibrant and rich’ writing community there, he was eager to work with SU’s disability studies institution. Kuusisto said the Center on Human Policy, Law and Disabilities Studies is one of the best in the nation.

‘It’s a wonderful, progressive community here for disability culture and rights, and that attracted me,’ he said.

Kuusisto was also hired as a University Professor in disability studies. He tries to spend at least half the day in the honors office before venturing out with his guide dog, Nira, to visit different areas of the campus, meet people and study the new community he has joined.

Kuusisto said he will teach an honors-level poetry writing workshop in the spring and two disability studies classes next fall — one regarding disability, literature and film, and the other focusing on disability and memoir.

Kuusisto has already received praise from co-workers at SU during his short time here.

‘Steve has a generous nature, a keen intelligence, and tremendous drive,’ said Eric Holzwarth,   deputy director of the honors program, in an email. ‘He’s also very funny. Honors is enjoying the energy and leadership he is bringing to the program.’

Peter Blanck, a professor in the SU College of Law and chairman of the Burton Blatt Institute, said he thinks highly of Kuusisto as a leader in the disability community. Kuusisto is not yet involved with BBI, a disability rights organization, but Blanck said they have been in touch.

‘He adds just a depth and a richness to our university community,’ Blanck said. ‘And it’s an exciting opportunity for many of us at the university to learn with him.’

The progress for disability rights being made right now is exciting, Kuusisto said. The 1991 Americans with Disabilities Act prohibits discrimination against those with disabilities in public accommodations and the workforce — so, unlike when Kuusisto was younger, people with disabilities no longer have to fight to get in the door.

‘When I was younger, the question was why? Why should disabled people even be on the street?’ he said. ‘But now it’s: ‘How do we make sure that the bathrooms in the library are really up to code?”

In the pre-ADA generation, many children with disabilities fought their way forward relying on stamina, luck and other talents, Kuusisto said. He tried to do things other kids did, like riding a bike and playing football. Now, the idea that people with disabilities are remarkably different is old-fashioned, and it is just another dynamic, like hair color or height, he said.

Though there is progress for those with disabilities, there is room for improvement even at SU, Kuusisto said. Some websites are inaccessible to the blind and need to be brought up to ADA compliance, and there is more faculty education on disability necessary. The question is no longer why facilities can be improved, but how it can be done, he said.

Each morning, Kuusisto wakes early and writes a post on his blog, Planet of the Blind. He said it is a place for him to share what’s on his mind — ranging from personal anecdotes, the experiences of others with disabilities or something he found intriguing from the Internet or news.

Though sometimes blogging every day gets exhausting, Kuusisto said he thinks it’s important to keep doing it, as many people read it from around the world.

This is not the first time his work has been in the public spotlight. His 1998 memoir, also titled ‘Planet of the Blind,’ received nods from ‘The Oprah Winfrey Show’ and other media outlets, something he said he wasn’t prepared for. Though he was grateful for the attention his writing received, he felt it was misrepresented by some big TV shows.

‘One of the things I learned about being on TV is that TV has its own narrative. It frames its own narrative in order to sell its story,’ Kuusisto said. ‘I had to learn a lot about ‘public relations 101.’ For instance, on Oprah, to be honest, many of her questions weren’t particularly thoughtful about disability.’

Kuusisto said Oprah wanted to focus on what he could see — for example, ‘How many fingers am I holding up?’ — and he found that to be unhelpful, so he instead changed the topic and spoke to the audience about things he considered more important, like organizations to help parents of visually impaired children.

‘I didn’t answer Oprah’s questions. And I don’t think she liked it,’ Kuusisto said. ‘But I tried to raise the level of conversation.’

Kuusisto was also interviewed on ‘Dateline NBC,’ in which he noticed his story was propelled into a ‘sensational media’ story that claimed while ‘pretending to be sighted, he was living a lie.’

‘The book is about overcoming a sense of alienation, of disability. But it doesn’t say I was living a lie. Nowhere in the book does it say this,’ Kuusisto said. ‘The media can run your story in its own direction. Every author wants to say this, but I think it’s true in this case. The book is really much more complicated and thoughtful than that.’

Kuusisto is working on two books, one being a book of poetry, the other a memoir about the changing nature of blindness. At this time there are more cures for blindness, something that wasn’t thought to be possible, he said. Two years ago, Kuusisto had surgery that restored him from total blindness to legal blindness. He can now see things up close.

‘Once I could see again, all of the colors in the world were wrong. Barack Obama was green on my TV,’ he said. ‘That was because my brain had taken the visual centers and used them for hearing. It took many weeks, but my brain fixed things.’

Kuusisto’s work doesn’t stop at being a professor and honors program director. He and his wife, Connie, started Kaleidoscope Connections LLC, a company for which they consult businesses to provide a better understanding about disability. They have worked with Beaches and Sandals resorts to help them serve customers with disabilities. Kuusisto said he and his wife generally don’t get paid for the consulting, but instead receive a vacation from the resort.

One of his goals as director of the honors program is to help it grow and become intimately connected with the mission of the university. He said he is pleased to have so many students and colleagues in a community that leads the nation.

‘I think SU’s efforts in socially relevant education are a big deal,’ he said. ‘It’s a great time to be here.’

brvannos@syr.edu

Published on October 5, 2011 at 12:00 pm

Contact Breanne: brvannos@syr.edu | @bre_vann