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Johns Hopkins UniversityArts and Sciences Magazine

Research Meets Real World

Glenn Ross and students

By volunteering with aphasia sufferers, Simon Fischer-Baum has put a “face” on his data.

Photo: Will Kirk/homewoodphoto.jhu.edu

Simon Fischer-Baum has spent hundreds of hours studying subjects who suffer from aphasia, an acquired communications disorder that impairs a person's ability to speak, read, and write.

The fourth-year graduate student, who investigates the brain processes used to produce and understand language, might ask his subjects to spell words back to him, name pictures, or repeat words. Because such research is highly individualized, Fischer-Baum can spend years working with the same handful of people, many of whom have developed aphasia as the result of strokes. The work has its limitations. "I like the research, and I like the fact that we get to have personal relationships with our subjects," he says. But he wanted to help them in a more immediate way.

That realization hit him six months ago, when one of his research subjects died unexpectedly, leaving Fischer-Baum with a strong desire to do more to aid this patient population. So he signed on as a volunteer communications partner at the Snyder Center for Aphasia Life Enhancement in Baltimore. The center, which opened earlier this year, offers resources, classes, and support to people with aphasia and their families.

Every week, Fischer-Baum comes to the center for a few hours not to study those with aphasia, but to help them communicate. He does that by drawing out their stories word by word, either with the use of assistive devices like computers or just by sitting and listening. On a recent day, Fischer-Baum listened to Howard Snyder tell the story of his Bar Mitzvah. Snyder, who had a stroke in 1999 and has difficulty speaking, recounted the event using photographs of himself and his family as cues. Fischer-Baum listened patiently and let Snyder talk, even when a well-meaning listener would have jumped in to offer the word Snyder was struggling to find. "Howard knows what he wants to say," says Fischer-Baum. "It's just that sometimes it takes him a long time to say it."

A researcher in the lab of Cognitive Science's Brenda Rapp, Fischer-Baum says he enjoys seeing people as more than research subjects and he values the time he spends volunteering at the center. "My research is about the ability to use language precisely, but this is about having a conversation," Fischer-Baum says. "I like that I get to use some of the skills that I have to help people communicate better and do the things they want to do."

Rapp, who in addition to being Fischer-Baum's advisor also serves on the advisory board of the Snyder Center, sees a benefit in cognitive science students having hands-on experience helping people who have aphasia. She's currently organizing internship opportunities for undergraduates in cognitive science to serve as communications partners at the Snyder Center.

"For the researcher, this kind of volunteering makes it clearer to them how their research relates to the real world," Rapp says. "I also think it's a wonderful way for the subjects and the public to see that science is not so completely disembodied. We learn a lot from these people whose lives have completely changed as the result of their disorder, from how they respond and rebuild their lives. It's a very gratifying part of the work."