This past Thursday, April 4, disability activist and scholar Harilyn Rousso read from her new book, “Don’t Call Me Inspirational: A Disabled Feminist Talks Back” in Ritter Hall.
With more than 100 people in attendance, Rousso, on April 4, read selected chapters from her memoir, focusing on society’s perception of her disability throughout her life and how the disability community in general objects to being referred to as “inspirational.”
In reality, she said, they are just like everybody else and face the same challenges that “normal” people go through: getting an education, dating, raising a family and trying to fit that societal “norm.”
Rousso, 66, has cerebral palsy, a condition that affects the functioning of the brain and its coordination with muscles in the body. It affects her gait and her speech. During her introduction, she admitted that people usually have a hard time understanding her, especially when she speaks in front of a large audience.
Rousso used humor right away to get people’s attention to explain why she is not inspirational.
“I’m damn boring, if you ask me, which you rarely do,” Rousso said. “I worry about paying the rent, eating too much chocolate, and finding telltale wrinkles – sound inspirational yet? I’m addicted to “Law and Order,” chardonnay with a nice bouquet and McDonald’s french fries. And yes, I talk with a disability accent that makes you wonder whether I’ve had too much of that chardonnay… [and] my walk is less than graceful. I know, I know, if you were me, you’d never leave your house and maybe even kill yourself. So I am inspirational because I haven’t committed suicide.”
Carol Marfisi, a professor of disability studies, who also has cerebral palsy and has been a long-time colleague of Rousso’s, said that the reading was “bold and provocative, bringing to the surface many taboo issues and topics people may wonder about, but are too polite to ask.”
Marfisi acknowledged that society has come a long way in its treatment of people with all different kinds of disabilities, but there is still a lot of progress to be made.
“Calling me inspirational is putting my being ‘normal’ as something you would not expect,” Marfisi said. “And in a way, that’s like confessing that you’re expectations are lower or different than they would be for an able-bodied women of the same demographic.”
Marfisi said she believes people have to look at things from a person with a disability’s perspective, and maybe then they will realize while they may have thought that they were being nice with their statement, it still could be construed as offensive.
“It’s like people are saying that they couldn’t see themselves achieving anything or living the same way, had they been disabled,” Marfisi said. “I know that people don’t mean any harm when they say things like, ‘Oh, wow, you’re so brave,’ but at the same time it places us on a pedestal and typecasts us, while also putting a lot of pressure to maintain that ‘inspirational’ role.”
And with her course “Disability Identity,” Marfisi teaches her students the idea that people with disabilities cannot all be lumped into one category.
Marfisi added that “saying someone is ‘inspirational’ also sets a standard for all people with disabilities, when in reality, you have to consider a person’s individual situation, privileges and challenges.”
Rousso’s stories during the reading illustrated everyday struggles that people – disabled or not – go through, especially the pressure society puts on people to fit an accepted perception of “beauty.”
Reading from her chapter “On Not Looking in the Mirror,” Rousso allegorizes people’s desire to be something different than what they see when they look at themselves in the mirror. She explained how she can’t identify with the woman she sees.
“Walking in such a graceless way, with her knees and toes turned in and body off-balance,” Rousso said. “Why in my mind’s mirror do I see myself walking like every woman, like anyone but this woman?”
Throughout the years, she learned to approach this in a different way, choosing to turn that stranger in the mirror into a friend.
“I can’t say that I am ready to claim that stranger,” she read. “But somehow she seems ever so slightly more recognizable, more acceptable. The image no longer has an association with only defect.”
Rousso concluded the event with a story about how her big tuxedo cat Sylvester leaped up on the bed to relax with her while she was watching movies with her significant other. Rousso was worried that Sylvester would not find a comfortable place to lie on top of her, since her body is always in constant motion. Eventually he did, and Rousso joked about how from the cat’s perspective, she probably felt like a waterbed.
“By picking me, Sylvester had reduced my embarrassment about my body,” Rousso said. “Maybe defects – differences – don’t matter all that much when it comes to being lovable. Maybe we can all be the cat’s meow if we choose the right cat.”
David Ziegler can be reached at firstname.lastname@example.org.