Means of Expression

Kathleen Bogart, G12, draws on her own experience to help people who develop facial paralysis
illustration of faces
People with the congenital form of facial paralysis find ways to adapt, through vocal inflection, gestures, head movement and laughter. Illustration: iStock
September 18, 2012

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Before babies can utter a word, they smile and frown to let their parents know how they’re doing. Even as adults, we continue to use nonverbal communication: a skeptical friend rolls her eyes at something you say; another raises his eyebrows. Walk by a Dumpster, and you wrinkle your nose in disgust. The way our faces express anger, happiness or sadness is universal, according to social scientists. But what if you were unable to form those expressions?

Kathleen Bogart, G12, cannot. She was born with a rare congenital condition called Moebius syndrome, a paralysis of the sixth and seventh cranial nerves. She can smile slightly and move her eyes up and down, but that’s it—no frowns, no puzzled looks, no sideways glances.

Bogart, who earned a Ph.D. in psychology in May, studies how people with facial paralysis adapt and express themselves in other ways. She is especially interested in discovering how they communicate their emotions and how facial paralysis affects their social interactions. She wants to use her research to help people who develop facial paralysis later in life learn the techniques those born with the condition have already figured out. Bogart is continuing her work as an assistant professor of psychology at Oregon State University.

Facial paralysis, says Bogart, is pretty common. If you consider the many conditions that can cause it, including Bell’s palsy, stroke and Ramsay Hunt syndrome, about 130,000 Americans develop paralysis or are born with it each year. Yet little research has been done on its consequences.

Learning the Hard Way

Kathleen Bogart, center, at her graduation in May, with, from left, her advisor, Linda Tickle-Degnen, chair of the Department of Occupational Therapy; her father, James Rives; her husband, Beau Bogart; and her mother, Ann Rives.Bogart is her own best study in adaptation. She shows animation with shrugs and nods and lowers and raises her voice for emphasis. She varies her tone and uses gestures when answering questions, not so much that she would draw attention to herself in, say, a restaurant, but perhaps a little more than most people. Some things don’t come easy. With her dry sense of humor, for example, she found that people wouldn’t intuit her sarcasm. “I learned I had to laugh it off so they’d know it was a joke,” she says. “I had to cue them in because they weren’t sure.”

She was diagnosed with Moebius syndrome as a baby when she was unable to purse her lips to suck on a bottle. A close-knit group of friends helped her through some of the teasing that came during childhood and her teens.

As an undergraduate, she majored in psychology at Louisiana State University, telling herself it was because she was interested in people. “But when I look back on it,” she says, “I realize my experience with my face had drawn me to psychology.” She was astonished—and angry, she says—at how little research had been done on facial paralysis.

One of her first jobs out of college was as a social worker in Baton Rouge after Hurricane Katrina. She had clients who had been evacuated from New Orleans, leaving their homes and possessions behind. Faced with people who were extremely distraught, she felt she had to use her body and voice to amplify the empathy she felt so that her lack of sympathetic facial expressions wasn’t misinterpreted.

“When someone’s in distress, the first thing that you would do is register sadness for them, and I’m not able to do that,” she says. “I can do it with tone of voice, but it was definitely a challenge in that job.”

While earning her master’s degree in psychology at San Francisco State University and then working at Tufts with Linda Tickle-Degnen, chair of the Department of Occupational Therapy, Bogart began to add to the small body of research on facial paralysis.

It had long been thought, for instance, that if you can’t form an expression on your face, then you can’t recognize it in others. Early in her research career, Bogart studied people with Moebius syndrome to determine if they could, in fact, interpret facial expressions in others. From her own experience, she already knew the answer: they could indeed.

Her work with Tickle-Degnen, who directs the Tufts Health Quality of Life Lab, found that people born with facial paralysis cope better than those who acquire the disorder later on, such as patients with Bell’s palsy. Again, for Bogart, the discovery was not surprising: those with the congenital condition find ways to adapt, through vocal inflection, gestures, head movement and laughter, while those who experience facial paralysis later in life have a tougher time, feeling that the world no longer recognizes their true self because they have lost their full range of expression.

“If you have a stroke,” Bogart says, “there’s a lot of physical therapy to help people build strength in gross motor skills, but little rehabilitation for facial expression. It’s an afterthought, and doctors tend not to realize the importance of it.” The difference is, she adds, that people born with facial paralysis have no idea what it’s like to have facial expression, but stroke patients feel that people interact with them differently and often misread their intentions, and they don’t know what to do about it.

It is that sense of self that Bogart hopes she can help restore. “I think we can learn from people with the congenital condition,” she says, “and teach it to people who are just learning to navigate this situation.”

Marjorie Howard can be reached at marjorie.howard@tufts.edu