Beyond the Stares
The day poet Kenny Fries was born, his grandmother ran through the hospital yelling, “A freak, a freak, my daughter gave birth to a freak!”
Fries, the second son of a lower-middle-class Jewish couple in Brooklyn, was born with only three toes on each foot, and his undersized legs, lacking the requisite number of bones, were twisted like pretzels.
Hearing the news, his father fainted.
“They didn’t have any medical name for it,” said Fries, 37, during an interview in the Office of Disability Services at UC Irvine. “It was just called ‘congenital deformities of the lower extremities.’ ”
Fries, on campus last week to do a reading in the student bookstore, chronicles his life as a disabled person in “Body, Remember,” a brutally frank memoir dealing with what Fries calls his “co-existing identifications of being gay, disabled and Jewish.”
It’s also about a loving father who nevertheless would burst into rages and an older brother who abused him. And it’s about learning how to ignore society’s reaction to his disability and live his life.
Published by Dutton ($21.95) earlier this year, “Body, Remember” is a journey into Fries’ past, which he charted by using the surgical scars on his legs as his road map.
“I know my past by knowing my scars,” he writes. “Where once a surgeon tore my skin and entered my body for reconstruction . . . now these scars have become the points of entry into my past, into those places, where, as a child, I was unable to go safely.”
Fries is an associate professor in the graduate writing program at Goddard College in Plainfield, Vt. Through his writing, he has become an increasingly visible presence in the national disability community.
Ron Blosser, director of Disability Services at UCI, first met Fries in July at the national conference of the Assn. of Higher Education and Disability in Boston, where Fries appeared on a panel on the literature of the disabled.
“His writing is really much more progressive about disability and the disability experience,” Blosser said. “It’s what I would call new thinking about disability and moving away from a medical model. . . . It’s not so much just a focus on limitations in the disability but the ways that people do adapt and that they’re independent.”
Sitting in one of the empty rooms in the Office of Disability Services for an interview before his reading, Fries hooked the crook of his short wooden cane onto his leg and grinned.
“I guess I can start talking about being born with a disability in a very strange way,” he said. “When people give birth, the first thing I ask is, ‘Was it born disabled?’ They say no, and I say, ‘Oh, darn.’ ”
Another grin: “People just think I’m out of my mind. I mean, most of the time when people are born with a disability, they’re looked upon as if it’s a tragedy, a horrible thing. And though there’s a lot of difficulty, the difficulty doesn’t come from the disability or the impairment.”
What causes problems, he said, “are the structures of society that make it difficult to be disabled in that society. It’s the lack of access, the lack of financial support--because having a disabled child is going to inevitably cost more money--and things like that. Really, that’s the tragedy, not the fact that somebody is born with a difference.
“And disability is not such a fixed category. Almost everybody is going to be disabled sometime in their life. And sometimes you go in and out of the category. The label, without the oppression from the outside, is meaningless, in a way.”
Fries’ UCI appearance was part of an eight-city publicity tour for his new book, an anthology, which he edited and which is receiving critical praise for its literary excellence.
“Staring Back: The Disability Experience From the Inside Out” (Plume; $15.95) showcases the fiction, nonfiction, poetry and drama of 38 writers with disabilities, including “Dateline NBC” correspondent John Hockenberry, New Yorker staff writer Ved Mehta and poet Adrienne Rich. Fries, who contributed three poems and wrote the introduction, said he borrowed the book’s title from a play by Susan Nussbaum, one of the contributors to “Staring Back.”
“Disabled people are used to being stared at,” he said. “It’s something I deal with in my memoir, and I think it’s time that the people that are looked at as ‘other'--a category that I don’t really ascribe to--have the opportunity to describe the world from their point of view.
“I also chose the title because it was a very strong stand, because disabled people are usually not seen as strong, and I wanted something with some power in it.”
Fries got the idea to compile the anthology in 1994 after participating in “A Contemporary Chautauqua: Disability and Performance” at the Mark Taper Forum in Los Angeles. Organized by Victoria Ann Lewis, director of Other Voices, a professional development program for writers and actors with disabilities, it offered two days of readings, performances and workshops by prominent dancers, visual artists, writers and scholars with disabilities.
“It was an amazing weekend,” said Fries, who, in meeting “a group of writers I had never encountered before” realized he was not alone in his struggle to give voice to the disability experience.
Fries knows what it is to be stared at. Walking with him across the UCI campus, it’s obvious that he attracts the extended gaze of those he passes.
He stands 5 feet tall, wears stubby brown leather orthopedic shoes molded to fit his feet. His right foot juts out at a 90-degree, angle and his right leg is 3 inches shorter than the left. For the past seven years, he has used a cane because of lower back problems caused by his leg length discrepancy.
He’s never gotten used to the stares.
“Sometimes, I’ll be really good with it, and I’ll talk to someone if they have a question,” he said. “Other times, I’ll just scare them and want them to get out of my life. It really depends on how I feel.”
In “Body, Remember” Fries opens with a scene in which every day he comes home from school and passes a young boy who always asks him, “Why are your legs the way they are?”
“I would never go down another street,” Fries said. “Somehow I needed to have that question planted in my brain. And, of course, there’s no answer to that question because nobody knows.”
When Fries was an infant, numerous doctors advised his parents to have his legs amputated. Instead, his parents followed the advice of a prominent New York City orthopedic surgeon who was convinced Fries could walk.
From the time he was 6 months old until the fifth grade, Fries was in and out of hospitals for surgeries on his legs.
While he was growing up, he said, “I got around fine. I played sports when I was young. And I was always in a mainstream school, which was rare for the time.”
His parents, he acknowledges, did a lot that was right for him.
“It’s very strange,” he said. “They never really thought of me as disabled, which had a lot of pluses and a lot of minuses.”
The minuses “were that I felt that I could do anything, which is not true. When I was young, I wanted to be a basketball player for UCLA, and they would say, ‘Yeah, you could do it.’ I mean, it’s ridiculous. . . . I knew I couldn’t, and how could I believe what my parents said to me about the things that I could do if they tell me this nonsense?”
Still, his parents’ insistence that he could do anything created a positive attitude.
“I talk about this in the introduction to ‘Staring Back,’ about how in our culture and in our literature the ‘survivor cripple’ is a real big thing: the person that overcomes their disability or ignores their disability like FDR did. But it comes at great psychic and physical cost.
“How would I come out if it was another way? Who knows? But for the last 20 years of my life, I’ve had to deal with extreme amounts of emotional turmoil because of those mixed messages I was getting.
“No one ever sat me down or my brother and said, ‘You know, Kenny’s physically disabled. He has this difference in his leg. . . .’ And to this day, my parents still haven’t come to terms with what it actually means in my daily life. I mean, for all the things that they are reconciled with, they’re not reconciled to a lot of things.
“They never thought of putting extra money away for me that I might need for medical stuff when I get older. They never thought of things like that. It was almost as if, ‘He’s going to be OK,’ and I think a lot of my emotional battles have been between ‘I’m OK’ and ‘I’m not OK’ and finding that balance.”
After graduating from high school in 1977, Fries went to Brandeis University, where he majored in English and American literature. He attended graduate school at Columbia University and received an master’s degree in playwriting.
None of his four early plays dealt with disabilities. It wasn’t until 1989, when, prompted by the progression of his own disability, he began addressing it in his poetry.
The poems have been collected in “Anesthesia: Poems,” published last fall by Avocado Press. The book includes “The Healing Notebooks,” his 19-poem sequence about AIDS, which earned him the Gregory Kolovakos Award for AIDS Writing in 1991.
“Writing gives me more of a confidence in the world,” Fries said. “It also enables me to see where I was and where I’m going. Now, when I read things from my memoir and from ‘Anesthesia,’ there’s a lot of self-hatred in there that I wouldn’t go to anymore. My feelings have changed, and sometimes I get embarrassed a little bit. But people always say, ‘But there’s people that are still going through that, and they need to have the work,’ so. . . .”
Though the publisher of “Staring Back” refers to Fries as an activist in the area of disability rights, Fries considers himself an activist only “by default.”
“I’m not one to make phone calls and write letters and attend protests,” he said. “My activism is really through my writing and teaching.”