Aphasia victims find a voice in UA group

By: April R. Ford

Posted: 10/12/07

Stroke and disease can sometimes cripple a person's ability to use and understand basic language. But a UA communication group offers a way for people with aphasia, a severe communication disorder, to re-establish who they are on their own terms.

"Aphasia is a language disorder, meaning it affects our ability to understand or use our words, vocabulary, grammar and all the pieces that go into framing a message," said Barbara Shadden, a professor at the College of Education and Health Professions.

The National Institute of Neurological Disorders and Stroke estimated that about a million people across the U.S. are affected by aphasia, which results from damage to the language parts of the brain.

Every person has their own sense of who they are, Shadden said, but the problem for victims of aphasia is that the idea of a self depends on how you use language.

For people who have suffered stroke or other disease, aphasia can hinder their ability to tell the world who they are, Shadden said.

"We all believe in our sense of self," Shadden said, "but the problem is it depends on others, and communication is the key."

A communication group was created at the UA's Speech and Hearing Clinic in 2004 to provide therapy to individuals having trouble telling their story because of aphasia. The group's focus centers on recreating the individual's sense of self through the development and communication of a life story, Shadden said.

Telling that story on their own terms is a crucial part of the communication group, said Patricia Koski, associate professor of sociology and criminal justice.

"People recreate a self," Koski said. "Although, if they don't have the tools to recreate that self, they are in danger of losing it in the sense that somebody else decides for them who they are or what they are capable of."

Members of the UA communication group use tools such as beliefs, gestures or words to share their life story with others.

"Even if they couldn't say words, they brought pictures, they brought notes that someone helped them construct," Shadden said. "They were able to authenticate themselves by sharing those pieces of who they are."

Participation in the group also gives aphasia victims validation, Shadden added.

"There are other people with aphasia," Shadden said. "You realize that you can move forward in constructing and revising your sense of self."

One important factor of the communication group is the breakdown of power levels between professionals and clients, said Koski, who has worked with Shadden to illuminate the processes of the communication group through sociological theory.

"People have to interact as humans on the same level of power," Koski said. "They have to both present themselves in the same setting at the same time."

The group emphasizes the importance of remembering that a person exists outside of the disorder, Koski said, and aphasia only forms part of that person's story.

The group was established after a graduate student suggested a patient at the clinic might benefit from more time spent around other people, Shadden said.

"Several students were at the core of creating the first group," Shadden said.

The groups have since continued in different forms, but Shadden said there is always one group dedicated to the sharing of life stories.

For now, the group receives no funding, Shadden said. Group members who can afford to pay are charged about $10 each meeting.

"We made it that way because we don't want to discourage anyone," Shadden said. "Most of them have used up their insurance benefits, so we wanted to be very accessible."

The group includes four individuals with aphasia, but Shadden said she hopes more people will join as the health care community becomes more aware of what the clinic is doing.

"I think just now people are beginning to realize that we're doing these groups," Shadden said.

At meetings, group members share their ideas about topics that are usually selected in advance, so they have time to prepare, Shadden said.

"People would come in with an article and share that," Shadden said. "It was meaningful. It was something that caught their eye and reflected their interest."

However, group discussions rarely stay on the chosen topics, and Shadden said group members are encouraged to talk about anything they want.

"Sometimes I really do believe that what we selected for the topic is just a tool to get things going," Shadden said.

One discussion in particular, Shadden said, involved how deeply the individuals missed working; something they had done up until their strokes.

"One person in the room can't say any meaningful words, but we all understood what he was telling us," Shadden said. "They were really sharing it amongst themselves, because they're the ones who have experienced it. It was very passionate."