THE EQUALITY ISSUE
The week of January 18, 2015
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The way we talk when we talk about stuttering

By Mona Behnaz Maali

There was nothing for me in my hometown of Austin, Texas, growing up. I saw one speech therapist after the next who had no idea what to do with my stuttering. I live with a disorder that is fundamentally misunderstood by the world and impossible to predict. It seems to come and go, almost at random, without my control.

Stuttering is a profoundly isolating and painful experience. It devastated my developmental youth. But in the years since finding help, first at an intensive program in Utah, I have been able to transcend that island state. Stuttering has connected me to thousands of people—and that community is the most rewarding and close network in my life.

We now know stuttering is a neurological affliction, not a psychological one. It usually begins in childhood. Recent research has linked genes to stuttering. Unfortunately, stigma and misinformation persist. That’s part of what we work to overcome in self-help or support groups.

People who attend annual conferences of organizations like the National Stuttering AssociationFRIENDS: The National Association of Young People Who Stutter, and the International Stuttering Association return home with a desire to keep engaging—and we do so on the Web every day.

Each day I see updates from friends who stutter from across the world all over networks like Facebook. Some of us use social media to self-disclose or “advertise” our stuttering; it’s a tool that we learn in speech therapy, and International Stuttering Awareness Day encourages speaking about personal experiences online. Doing so is difficult but it helps. It may sound straightforward, but these things can be a huge stretch for people who stutter.

That’s the first step.

Learning to Hangout

In 1966, Michael Heffron founded the first nationally recognized self-help for people who stutter, the Council of Adult Stutterers, in Washington, D.C. In the newsletter of the American Speech-Language Hearing Association (ASHA), Heffron described his intent: “It would seek to make stutterers proud—not that they stutter, for only a fool would take pride in an affliction—but that they are doing something to help themselves.”

STUTT-L, one of the early notable forums, was established in 1990 as a way to connect researchers studying stuttering. It eventually included daily dialogue from people who stutter from all over the world. (It ran for many years on Yahoo Groups and recently migrated to Google Groups.) Likewise, the longstanding forum Covert-S connects “covert stutterers,” a subgroup of the stuttering population who conceal their stuttering by changing words and avoiding speaking situations—and do so at all costs. For them, this forum is a place to be understood, a means of realizing that they are not alone.

In the last few years, however, there has been an explosion of Web communities for people who stutter, according to Mitchell Trichon, a speech-language pathologist and cofounder of Stutter Social, an international community of stutterers who regularly connect through Google Hangouts to discuss their issues and daily activities.

“I saw people who stuttered severely and doing a lot with communicating ideas,” he told the Kernel. “I realized that even though I was pretty outgoing, I was still letting stuttering hold me back from doing what I want to do.”

Trichon is an assistant professor at La Salle University in Philadelphia and has researched the benefits of self-help groups for those affected by stuttering. Two things were apparent to him about the limitations of in-person, self-help resources, such as the National Stuttering Association (NSA) chapter that he led in Queens. For starters, not everyone has access to these groups. NSA chapters exist in about 120 cities in the U.S., and they usually meet only once or twice a month.

That’s not enough for the estimated 3 million stateside who stutter (to say nothing of the global population). The cost of travel is an obstacle for some, as well as the time that it takes to drive and attend a monthly 90-minute meeting.

Perhaps even more problematic, from his personal experiences and his research, Trichon found many cases in which people who stutter took as long as two years or more to attend a meeting.

“That’s part of what the disorder is. You want to avoid that identity,” Trichon explained. “It’s a shame for people who are thinking about a group, how long it might take them, or they might not go at all.”

Virtual groups are a low-impact entryway into self-help. It’s not as scary to introduce yourself as a person who stutters on the Web, and you can do so in the privacy of your own home and in real time.

Since online groups aren’t always monitored the same way local chapters of the NSA are, there’s a risk those seeking help will be exposed to misinformation—that stuttering is contagious or caused by bad parenting, for example. For countless people like myself, the rewards of Internet therapy outweigh the risks. Research on Web formats of self-help groups is preliminary, but Trichon believes there’s value to both in-person and online interactions, especially considering the immediacy and convenience afforded by virtual groups.

Some speech-language pathologists have moved away from making fluent speech the goal of treatment. (I can tell you from my own experiences and from knowing hundreds of people who stutter, this is unrealistic for a vast majority of people who stutter.) Instead, therapy is geared toward helping people who stutter communicate more easily. Self-help groups become tremendously valuable in this realm, Trichon said, providing role models for others at various stages in their journeys.

“There is just something from learning from another person who stutters—you can’t gain that in therapy,” Trichon said.

Stutter Social offers the closest thing to stimulating the experience of attending a self-help meeting, but there is a different etiquette involved in the online hangouts.

NSA meetings always begin with a round of introductions, where all members are encouraged, but not required, to speak. These are important interactions that serve as an icebreaker at meetings. Stutter Social groups max out at 10 members. The Google Hangouts are hosted three or four times each week by members of the stuttering community who volunteer their time.

Stutter Social hangouts begin with introductions, but people often come in late to the Hangouts, or log in and out. Sometimes this occurs in the middle of hot topics; in those cases, it is up to the host to handle the situation. Since the Hangouts bring in people from all over the world­­, it often makes for interesting interactions to say the least.

Pamela Mertz, a lifelong stutterer who lives near Troy, N.Y., is one of the hosts for Stutter Social. She also runs a blog, Make Room for Stuttering, that addresses issues the minority of women who stutter deal with. Mertz says that women are more apt than men to be open about feelings. Nearly 500 women who stutter converse about their daily experiences on closed Facebook support group affiliated with Mertz’s blog.

“The most common feelings,” Mertz told the Kernel, “are shame, guilt, fear, and feeling inadequate.”

The way we talk

For proof of the strength and commitment of the stuttering community, look no further than the successful funding of Michael Turner’s documentary, The Way We Talk.

Turner, a filmmaker and graphic artist from Oregon, wanted to educate people about stuttering and capture the experiences of a wide variety of people, including his experiences with his own family. (Disclosure: Turner contributed the cover art for the author’s book, Turning Points.)

Turner ran a month-long Kickstarter campaign for the film. He posted a promotional video, which was basically an extended trailer for the film, and did an interview for Stutter Talk, a weekly podcast started in 2007 and produced by and for the stuttering community.

Then something incredible happened. While he was busy preparing for his wedding, the campaign took off on its own, with members of the stuttering community plastering it across the Web. The campaign brought in more than $25,000, exceeding his goal of $16,000, from more than 300 backers.

“That campaign sort of changed my view of stuttering, as much as the self-help group I had gone to, because here was this online community forming around this project,” Turner recalled.

He feels that being “one of the community” was directly responsible for his Kickstarter success. In the campaign’s promo video, he holds the camera and tells his story while stuttering. It had a powerful effect. That was the first time that many of his friends, and people he’d known throughout his school years, learned that he stutters. It ended up opening up a dialogue with his friends about, as he put it, “things in their own lives that had made them feel different or apart or alone.”

Turner says it all comes down to communication, and realizing that speaking up is difficult for a lot of people, not just those who stutter.

“As it turns out, it’s something everyone struggles with,” he said. “It’s just a challenge that’s always there, to say what we want and to not hold back from being ourselves.”

 

Mona Behnaz Maali is the former president of the Austin chapter of the National Stuttering Association and was named the NSA’s 2010 Adult Chapter Leader of the Year. She compiled and edited a collection of essays by members of the Austin NSA chapter for a book called Turning Points: Inspiring Stories of Personal Change from the National Stuttering Association, which will be released this spring.

Photo via Sam Howzit/Flickr (CC BY SA 2.0)