Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=220409
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Harilyn Rousso, left, speaks as at the University of Illinois at Chicago while a translator for the deaf and blind offer aid to the audience


Disability rights activist discusses advances, hope for what’s next

by Andrew Holik
Apr 23, 2013


Harilyn Rousso doesn’t want to be called inspirational.

She has published three books, holds two master’s degrees and is a certified psychotherapist. She has accomplished this despite living with cerebral palsy, a disorder that impairs speech, posture and movement.

“People who don’t even know me will stop me on the street and say, ‘Oh, you’re so inspirational,’ ” Rousso said. “I don’t mind being called inspirational for real achievements, but don’t call me inspirational for not jumping out the window. Set the same standards for me.”

Rousso, who recently published her memoir “Don’t Call Me Inspirational: A Disabled Feminist Talks Back”, spoke at the University of Illinois at Chicago Friday, discussing both her book as well as what’s next for disability rights in America.

A lifelong New Yorker, she was born in 1946 with cerebral palsy, a disorder of movement, posture or muscle tone caused by abnormal development in the immature brain. Due to potential rigidity or lack of muscle coordination, people with cerebral palsy may have difficulty speaking, walking, overall slower movements, or tremors.  Severe symptoms of cerebral palsy may include incontinence and difficulty with vision and sight.

There are 764,000 Americans estimated to have symptoms of cerebral palsy, according to United Cerebral Palsy. An estimated 56.7 million Americans, or nearly 20 percent of the population, are estimated to have a disability, according to the latest U.S. Census results.

However, growing up Rousso said she felt isolated by the lack of acceptance and understanding of debilities in her community.

“For the first 30 years of my life I was heavily into denial about my disability,” she said.  “I was very far into the closet.  I didn’t relate to it at all.”

Rousso did not want her disability to be identified as a negative, “a source of teasing and staring.”

In her 30s, Rousso immersed herself in the disability rights movement following. Ryan Parrey, 34, a doctoral candidate in disability studies at UIC, said the visibility Rousso and others created was invaluable.

“We’re way better than we used to be,” he said, “but the cultural work people like Harilyn and others are doing is taking disability beyond something that’s just okay.”

“Now it is okay to say you have a disability and it’s almost cool,” he said. “I think that’s where we’re going.”

Rousso said that things have improved for disabled people since she grew up.

“We’re more visible in general,” she said. “There is more inclusion in general.”

She said many of her friends with disabilities had to fight to even be allowed into public high schools growing up.

Now Rousso believes a growing number of people with disabilities hold advanced degrees.  One such person, Kelly Munger, 35, Parrey’s wife who also has cerebral palsy, said Rousso’s was the first book she read about people with disabilities when she was 12.

“My mom bought it for me and thought it would be helpful to have a woman role model with disabilities,” Munger said. “I think Harilyn helped inspire a generation of people with disabilities.”

Munger, who holds a Ph.D. in disability studies from UIC, said Rousso and other’s disability rights work inspired her to do whatever she wanted and helped her learn disability was not limiting but a way she could make a difference.

“I’m more disabled by people’s attitudes than anything related to my body,” she said.  “I can be proud of my body.”

Rousso said the fact that more individuals like Munger and Parry can get into graduate programs is a positive step, but that disabled people are still under-represented in higher education.

“It will take a lot of time--I don’t think it will happen in my generation--but as more and more people with disabilities are in the workplace and schools it will help,” she said.

Going forward, Rousso said understanding disability and increasing disability awareness will be a necessity for the baby boomers.

“As most people age, they will develop a disability,” she said, “and if they don’t know how to embrace that part of themselves it will be difficult.”

Even at nearly 67 years old, Rousso said she won’t slow her efforts to increase disability awareness.

“I’m not nearly finished with this,” she said.  “I don’t know where it’s going to take me, but I’m going to be promoting the ideas and issues in the book and continuing to move attitudes along.”