The forgotten minority

In discussions of diversity and identity, disability is often left out.
Post-Doctoral Associate Misa Kayama takes her glass of water back to her desk to work on Monday, Sept. 30, 2013 on the St. Paul campus. Kayama stopped her chemistry PhD studies in Japan after an accident left her in a wheelchair.
October 02, 2013

John Wilson doesn’t consider his lack of hearing a disability. It’s a language barrier.

Misa Kayama is a minority in two ways: she’s Japanese and uses a wheelchair.

And Abdirahman Hassan, whose legs are slightly different lengths, has become proud of his disability.

For many, disability — or varied ability — is simply another aspect of identity, akin to gender, skin color or nationality.

But in discussions of diversity, in coursework or in the broader community, ability is often left out.

None of the 131 undergraduate courses fulfilling the Diversity and Social Justice in the U.S. requirement at the University of Minnesota focus primarily on disability. Only three mention the topic in their course descriptions.

“We have whole departments for African-American studies, women’s studies,” said Jeanne Higbee, professor and director of graduate studies for postsecondary teaching and learning. “But when we’re talking about diversity and multiculturalism, somehow, disability as another aspect of social identity gets completely ignored.”

The University’s Disability Services program is known for its quality and inclusivity. But, like many other universities across the nation, the cultural and social aspects of disability are often ignored in the broader community. The University’s Disability Services program is known for its quality and inclusivity. But, like many other universities across the nation, the cultural and social aspects of disability are often ignored in the broader community.

“I think that, in general, disability is just not on people’s wavelengths in the same way that race, ethnicity, gender, sexual orientation have been,” Higbee said.

People with disabilities are one of the largest minority groups in the U.S., comprising 12.1 percent of the population in 2011. In comparison, African Americans made up 13.1 percent, Asian Americans 5.1 percent and American Indians and Alaskan Natives 1.2 percent in 2012.

“The vast majority of Americans really don’t understand this huge minority population that we have in the United States,” said Rachel Garaghty, a University alumna. “If that were to be the case with another cultural group, it would be totally unacceptable.”

A 'first-person' approach

Wilson, a sociology senior who is deaf, said he’s like any other student at the University.

“I go to class, I hang out with my friends, I’ve got homework — I do everything that a normal student would do,” he said through an interpreter.

Wilson has interpreters and a note taker with him in classes but for the most part is independent.

Some people are initially awkward speaking through a translator, Wilson said. Others say they feel sorry for him.

“People in sort of mainstream environments tend to see disability as an imperfection, as a problem,” said Tammy Berberi, president of the Society for Disability Studies. “We choose to see disability as an aspect of life that enriches life for everybody.”

Wilson, using his hands to speak, can talk through windows or underwater. In noisy environments like concerts, sign language allows Wilson to casually converse where others would have to yell.

 “Many people are not aware how to interact with people with certain disabilities and that can be a barrier to developing new relationships and communication,” said Luka Krmpotich, a psychology senior with low vision. “So, to have something like a disability studies course or program to look at some of these more social aspects would be
really helpful.”

Rather than focusing on services or medical solutions, disability studies approach the subject from a cultural or social justice angle, exploring diversity and identity.

Currently, the College of Education and Human Development offers undergraduate courses on disability and has a Disability Policy and Services Certificate Program, but they don’t center on social or cultural aspects.

The cultural studies approach “flips the discourse on disability to more of a first-person perspective,” said Christopher Johnstone, CEHD international initiatives director and senior research associate at the Institute on Community Integration.

“Like any cultural studies discourse or academic endeavor, if you don’t have a first-person voice, the field really lacks credibility,” he said.

Many University faculty and researchers focus on disability studies.

Architecture professor Julia Robinson teaches about environmental accessibility. Higbee’s work applies universal design to higher education. And music professor Alex Lubet’s research centers on music as a universal human right that’s accessible to all.

Lubet is heading an interdisciplinary graduate group working to unite his and others’ efforts in a disability studies program.

“I think people really need to understand that there are civil and human rights issues and not just health-related issues involved in life with a disability,” he said.

Lubet is finding an appropriate collegiate home for the program and hopes to have a graduate disability studies minor established in the next two years.

A number of committees and task forces have made similar attempts in the past, but no program has materialized.

“People tell me that this has been going on for 25 years,” Lubet said. He’s been involved for 13.

“Every time,” he said, “some way or another, things were just curtailed.”

Few universities across the country have disability studies programs. At Ohio State University, it’s the third-largest undergraduate minor.

“I think courses in disability studies are terrific,” Berberi said, “because they’re going to transform everybody’s mindset about where people belong and how we think about their capacity.”

In 2011, 21 years after the Americans with Disabilities Act took effect, only 33.4 percent of people with disabilities were employed.

The act prohibits discrimination based on disability, defined as “a physical or mental impairment that substantially limits one or more major life activities of such individual.”

Berberi said the act hasn’t done much to change people’s outlook on disability.

“I think education is such a liberating piece of that puzzle,” she said. “And I think, as a public university, we have an ethical responsibility to make our facilities and our curricula and our classrooms and our teaching open to as many people as possible.”

'A level playing field'

Misa Kayama had to stop her chemistry PhD studies in Japan after an accident left her in a wheelchair. She could no longer get to laboratories to complete her experiments.

So she moved to the U.S. and is now a postdoctoral associate in social work at the University.

“My first reaction when I came to the U.S.: I feel free,” Kayama said.

Minnesota winters and the hilly St. Paul campus can be challenging, she said, but for the most part getting around isn’t a problem.

“Usually, I don’t even remember I have a disability,” she said.

Title II of the Americans with Disabilities Act requires public entities to provide universal access to all of their programs and services.

Since the University was founded in 1851, most campus buildings weren’t designed with accessibility in mind.

The University has since altered its campus to include ramps or wider doors and incorporates universal access in newer buildings, like TCF Bank Stadium.

Architecture professor Robinson, however, said unless all primary entrances are accessible, it’s discriminatory.

“We used to make the African Americans sit in the back of the bus,” she said. “Well, it’s the same idea: If you have to go in the back door, you don’t have the same status as people who go in the front.”

The conversation surrounding accessibility now centers on universal design — creating environments that can be used by the greatest possible range of people, regardless of age, ability or status.

Disability Services Director Donna Johnson said for faculty, universal design means teaching in a way that can reach students with different disabilities, ethnicities or ways of learning.

On the physical side, universal design means incorporating things like curb cuts, ramps or media captioning into design, not retroactively.

“In the long run, [it’s] far more practical and efficient than having to go back and make changes,” Krmpotich said. “Having spaces or materials accessible puts everyone on … more of a level playing field.”

Currently, University students must disclose their disabilities to Disability Services in order to receive appropriate accommodations.

“With universal design, we don’t put the student in the position of having to share very personal information that would not be expected of any other students,” Higbee said.

Medical student Erica Warnock disclosed her chronic illness to receive various accommodations. She does her rotations in hospitals on bus lines, and absences for medical appointments are excused.

“They’ve been really good,” she said. “It just helps to have that official stamp of approval.”

But Warnock said some of her classmates have chosen to not use Disability Services because they don’t want to disclose their disability, even though it could be helpful for them.

“For a student with a disability to receive the academic accommodations that are needed, that student has to disclose that aspect of social identity,” Higbee said. “Whereas I don’t have to tell you my sexual orientation or my religion in order for me to be successful in your class.”

Defining disability

Beth Fondell, coordinator for the Disability Policy and Services Certificate program, taught a night class that met on the third floor of a building with a temporarily broken elevator.

When a student using a wheelchair couldn’t get to the room, Fondell said classroom management suggested she “try to make accommodations to the student for missing class.”

“[That], from my perspective, was unacceptable,” Fondell said.

So she moved the class to an office on the first floor.

“Many of the difficulties that people experience with a disability are ones that are imposed by systems and by prejudice, rather than by things in one’s body,” music professor Lubet said.

Hassan, chair of the Disabled Student Cultural Center board, said the group aims to educate the greater student body about disability topics and bridge the gap between disabled students and non-disabled students.

“I was born with this disability,” he said. “I’m no different from you or anyone else.”

Office for Equity and Diversity Associate Vice President Kristin Lockhart said thinking about diversity involves thinking about who’s at the University.

“These barriers that we’re focusing on when we do diversity work really involve the barriers that come from assumptions about who can and cannot be successful,” Lockhart said. “They result from stereotypes and biases that are linked to one’s identity or individual differences.”

Shifting perception

Garaghty, the recent graduate who uses a wheelchair, said she and others with disabilities sometimes deal with a lack of respect from other people and “hurtful attitudes.”

“Fighting that on a daily basis can be really exhausting and demoralizing,” she said.

Wilson said the most important step to learning is knowing someone who has a disability. Kayama said if people interact with someone in a wheelchair, they’ll hopefully have a more positive perception of them.

“How people look at my wheelchair changes over time,” she said.

Garaghty said she thinks disability studies courses should be available to anyone so students could take a one-semester introductory course.

“Even just having that little bit of exposure, that one positive course, can change a person’s entire attitude,” Garaghty said.

The Disabled Student Cultural Center, Disability Services and individuals across the University are striving to change perceptions about disability through events and discussions, including a spring 2012 concert by Finnish deaf rapper Signmark and roundtable lunches.

“Accessibility isn’t just about having a ramp,” Garaghty said. “Accessibility is about living in a barrier-free environment, and that means living in an environment where people don’t stare at you, where people treat you respectfully.”

Professors and students agreed that when those societal barriers are removed, a disability creates very few
limitations.

“If we’re really going to move toward inclusive excellence, we need to shift out of models that look at any identity as being rooted in a deficit,” Lockhart said.

“Without everybody bringing all of who they are to the University every day, we can never achieve our most ambitious goals.”

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