Extra Curricular

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Voicing Support

What do Tiger Woods, Johnny Damon, Joe Biden, Julia Roberts, James Earl Jones and Carly Simon have in common?

Yes, they're all famous, but that's not it.

They are among the 1 percent of adults and 5 percent of children who stutter.

"It's a lonely disorder to have, and often, it's hidden, covert," says Marybeth Allen, a speech language pathologist and graduate student supervisor in the University of Maine's Department of Communication Sciences and Disorders.

To help make things a little less lonely for Mainers who stutter, Allen coordinates two monthly support groups in Belfast and on the UMaine campus. At the national level, she serves as the National Stuttering Association (NSA) cochair for family programs. Each week, she spends hours editing NSA's Family Voices newsletter, sorting through and responding to e-mails, and vetting and helping people who want to start support groups for youths and their parents.

This outreach is both a personal and professional mission for Allen, who grew up stuttering and also has a son who stutters.

"We all share the common challenge of stuttering and how it affects our lives, how it affects our participation in life," Allen says. "We all have parts of who we are that are challenges, but NSA says, ‘Don't let stuttering define who you are.'"

Because of the multifaceted nature of the disorder, Allen says, it's important for people who stutter to get together with others who understand what they're going through. Therapy can work wonders, but therapy is not the same as support. Often, people have days — or even hours — when they're fluent and times when they aren't.

In the past decade, good research is leading to the understanding that childhood onset stuttering is a neurophysiological disorder, Allen says. A person who stutters and one who doesn't may say the same words in the same tone of voice, but their mouths and their brains are going through completely different processes. Add a little tension to the mix, and fluency can break down quickly.

"A lot of people experience a fear of public speaking, and with someone who stutters, you get this anticipatory fear," Allen says. "Stuttering is like an iceberg. Observers of stuttering see the tip of the iceberg, they hear the observable speech, but nobody sees what's underneath the water — never knowing when you're going to stutter. I experienced that growing up, not knowing if someone was going to make fun of me."

For children and young adults, support groups can be critical. But they're equally important for adults, which is why Allen and Shaleen Jain, a UMaine professor of civil and environmental engineering, started the on-campus forum. Jain has led similar groups in Utah and Colorado.

For Allen and the participants, the support groups provide an opportunity for sharing. The groups also are a learning environment where graduate students in speech pathology can gain invaluable understanding.