In the midst of a conversation about disability science, student research projects and her own scholarly endeavors, Kathleen Bogart pauses. How will the world be different if she succeeds in her work, the interviewer asks. What will change?
A social psychologist at Oregon State University who studies the stigma of being viewed as “disabled,” as less than whole, Bogart hopes to see more scientists tend to this neglected aspect of her field. But when she turns to the emotional benefits of developing a positive identity as a complete human being, her voice rises.
“Disability isn’t seen as a social identity with the same validity as other conditions like race or gender. But it is. It’s a really important identity,” she says. “People with positive identity have pride in their community and disability. They are less likely to have anxiety and depression. They tend to have higher satisfaction with life.”
These observations stem from Bogart’s research and guide her current thinking. She and her colleagues in the United States and Denmark have worked for the past decade to understand how people viewed as being disabled respond to the social stigma that often accompanies their appearance or behavior. And they have developed methods for educating people who don’t face that challenge — the feeling of isolation or rejection — but may unwittingly foster it in others.
Although humans are well-equipped to communicate through a variety of channels (voice, gesture, words, expression), being presented with an unusual situation can be uncomfortable, Bogart says. “If a person with facial paralysis walks into a room, people can tell that something is different, but they can’t quite figure out what it is,” she explains.
So they may fall back on assumptions. For example, people may think that someone with a disability isn’t intelligent or that she’s unfriendly. Educating the public about rare conditions helps to change such reactions, Bogart has found in her research, and to generate more positive interactions.
“There are realities in the ways our bodies work, but society has the power to create a disability or not. When you say the problem of disability is in an individual’s body, and when the people who diagnose that problem are medical professionals, then the problem is specific to one person and can only be fixed by experts. It belies the long-term problem that disability is also socially constructed,” Bogart explains.
There Must be a Textbook
Bogart’s commitment to her research stems from an experience she had as an undergraduate at Louisiana State University, not far from her childhood home in Baton Rouge. She was preparing to do a paper for a psychology class, one that focused on an aspect of her own life. She was born with facial paralysis, a condition that, in her case, stemmed from Moebius Syndrome. As a student, she assumed naively that people had studied the psychology of people with Moebius, that there would be textbooks on the socialization, identity formation and other features of people with this condition.
Although facial paralysis from all causes (head injury, stroke, Parkinson’s disease, Bell’s palsy) affects about 130,000 Americans annually, she discovered a grand total of two papers on the topic.
“I realized this was something I could do, that I was motivated to do,” she says. It was a life-changing moment. The young woman who had been majoring in both psychology and English, who had worked as an intern at The Southern Review, a top literary journal, talked with her professors and chose the less traveled path. She dedicated herself to delving into “ableism,” discrimination against people on the basis of their physical abilities.
In her graduate programs at San Francisco State and Tufts University, Bogart found mentors who helped her navigate through the impact of facial expression on communications. She studied the many ways in which people with disabilities compensate to make themselves understood, to share their thoughts and feelings, to make social connections. She encountered a professor who championed disability rights and the development of a positive group identity for people with disabilities.
As an assistant professor in the School of Psychological Science at Oregon State, Bogart directs the Disability and Social Interaction Lab. With funding from the National Institutes of Health, she and her students have looked at how people with facial paralysis compensate for their inability to communicate through raised eyebrows, a narrowing of the eyes or a smile. They have found — by making videos of people with facial paralysis talking about their lives — that providing information to people without facial paralysis can lead to more positive perceptions of people who have the condition.
Power in Identity
In one of the first quantitative studies of disability identity, Bogart and her students focused on people with multiple sclerosis. Having a positive identity as a member of a group with the disease, the researchers found, tends to reduce depression and anxiety.
The power of developing that feeling of community came home to Bogart in a study that she conducted with Amanda Hemmesch, a colleague at St. Cloud University in Minnesota. The researchers surveyed attendees at a conference for people with Moebius Syndrome.
“In general, people are in contact with others on the Internet, but they don’t often have a chance to meet others face-to-face except for that conference,” says Bogart.
There was a “clear feeling of pride in being surrounded by other people who look like me for the first time in my life. They experienced a significant reduction in stigma and an increase in social comfort. That was a really powerful experience for them. It was transformative.”
See an Oregon State news release (2-23-16) about the lack of attention to disabilities in college psychology curricula.