“Strangers pat me on the head, they whisper… things about courage and inspiration. They declare me special.”
Eli Clare, a writer and activist, spoke these words on Jan. 30 in Memorial Field House at the University of Toledo to a crowd of different ages, abilities and sexualities. Clare used parts of his memoirs to explore the idea of being “defected” and needing to be “fixed”.
“Strangers ask me what is my defect,” Clare said. “To them, my body mind just doesn’t work right.”
Clare, who identifies himself as “white, disabled and genderqueer,” was brought to UT by the Disability Studies Program and Jim Ferris, Ability Center Endowed Chair in Disability Studies.
“Eli Clare has been an important thinker in disability culture since the 1990s,” Ferris said. “We first met in Ann Arbor in 1995 at the groundbreaking This/Ability conference on disability and the arts, and Eli has been giving me things to think about ever since.”
The Disability Studies Program hosted Clare just before the release of his new book, “Brilliant Imperfection: Grappling with Cure.” Ferris said Clare’s book examines “the prominent place that the cure holds in thinking around disability.”
Clare began his lecture by ensuring that people in the back of the room could hear him and also see the Powerpoint at the front of the room. He encouraged the audience to let him know if they needed something.
“If you need to knit to listen, do that,” Clare said. “If you need a wall to lean on, there’s one there. If you need to lay down, there’s floor space up here.”
In his lecture and upcoming book, Clare investigated the ideology of cure and the deeply held belief that bodies and minds considered “broken” need to be fixed. He finds that this ideology is ultimately rooted in two concepts that are fundamental to contemporary life: the “normal” and the “natural,” Ferris says. Since these concepts or ideologies are so basic to 20th and 21st century American life, Clare’s message addresses issues pertinent to everyone who has a body in the contemporary world.
“More than 25 years after the Americans with Disabilities Act, people with disabilities continue to occupy a significantly disadvantaged position in society,” Ferris said. “Yes, of course we should work to change this.”
Politics and society were one of the very first topics Clare touched on. He said that is doesn’t matter who you support or what your values are, but we need to understand that we are in a time of political upheaval. As a disabled man, Clare finds President Trump dismissive of those with disabilities.
“A man who has frequently and publicly dismissed people who have the motions like my hands and makes fun of disabled reporters,” Clare said describing Trump.
While reading from passages of his book, Clare told the story of playing tag with some other children. When it was his turn to be ‘it,’ he was never able to ‘catch’ his friends. Clare said the children taunted him, calling him ‘retard.’
“Frustration, shame, humiliation swallowed me. My body mind crumpled,” Clare said. “It could’ve been seconds or hours.”
Clare said although this kind of taunting and bullying is far less today, he still comes across people who treat him like he is ‘defective.’
“Think of what is defective,” Clare said, “the mp3 player that won’t turn on, the car that won’t start.”
Trying to change this mindset of ‘defectiveness’ is the goal of UT’s Disability Studies program, which is the first major of its kind in the United States.
“This degree is truly interdisciplinary, centered in the liberal arts and social sciences while drawing on insights from across the campus,” Ferris said. “The DST major and minor emphasize critical thinking in an accessible framework of creative problem-solving. Today’s graduates will have to solve problems that we cannot even imagine yet.”
After five decades, Clare said that he still struggles with replying to those who say he is ‘special.’
“How to tell them the simple truth,” Clare said. “I am not broken. I have no idea who I would be without my tremor.”