The journalist was pitching a story about stuttering to a national magazine. "The editors are looking for a good story angle," he said. "I've heard that some people in the stuttering self-help movement are opposed to any kind of speech therapy and believe that people should just accept their stuttering." I explained that a few people held this view years ago, but there's a broad consensus today that self-acceptance and speech therapy are a winning combination. "How about the conflict between covert stutterers and people who stutter openly?" No conflict there, I explained. Covert stutterers are an accepted part of today's stuttering community.

After a long phone call and several emails, the writer agreed that there's a good story in how support organizations and speech professionals are helping people overcome the obstacles of stuttering. A few days later he sent me an email: "Sorry, the editors aren't interested. There's no conflict."

Explaining things is what I do. I started out as a newspaper reporter, explaining to my readers what was happening at city hall and in the community. My career in public relations included countless hours helping reporters understand complex subjects such as fiber optic technology and labor negotiations. I use this experience in my volunteer role as the National Stuttering Association's media spokesperson.

Why stuttering is complicated

Even though the incidence of stuttering is higher than disorders such as autism, it's less likely to be on the public radar screen. Nobody dies from stuttering, happily. No celebrities are clamoring for a cure and, most important, the vast majority of people who stutter don't talk about it. So the nature of stuttering is new information to most reporters: that stuttering is physiological in origin and often genetic, and that there is no cure or universal treatment.

What sets stuttering apart from other disorders is its social stigma and resulting emotional baggage. Reporters are surprised when I tell them that the majority of people who stutter avoid speaking situations, one-third of us never discuss our stuttering with friends or co-workers, and eight out of 10 children who stutter have been bullied or teased about it. Sometimes it seems that stuttering is the only disability it's still okay to ridicule.

Stuttering treatment requires some explaining because most people assume that treatment eliminates stuttering. I emphasize that completely fluent speech is elusive for most people who stutter: 84% of people who improve their fluency in speech therapy relapse later. The assistive devices that were such a hit on Oprah's show have fallen short of expectations. Pharmaceutical research shows promise, but nobody envisions a miracle pill in the near future that will eliminate stuttering for everyone.

It's also news to reporters that most speech therapists have little training and experience with stuttering. Other forms of stuttering treatment are completely unregulated, and misleading advertising claims are common. To make matters worse, nearly one-third of parents of children who stutter get bad advice from pediatricians and other professionals.

I hasten to add that there's plenty of good news about stuttering treatment. Speech-language pathologists who specialize in stuttering have made a lot of progress, particularly in therapy for pre-school children who stutter. Early intervention can even improve the odds that a child who stutters will outgrow stuttering. Expert clinicians can help most adult stutterers improve their fluency, or at least stutter more easily, especially when the therapy also addresses emotional issues.

Medical journalists usually lose interest by this point in my pitch. Speech therapy is a lot less "newsworthy" than a new drug or assistive device, and physicians and pharmaceutical companies don't listen to speech-language pathologists.

Explaining stuttering support

Stuttering support is a fuzzy concept even for people who stutter. I explain that when you've grown up hiding or denying your stuttering, talking about stuttering with other folks who stutter is a satisfying and often transforming experience. There are some tangible benefits, too: Support groups help us gain self-confidence, practice speaking in a safe environment and build positive attitudes about speaking and stuttering. In fact, a survey by the NSA shows that support group participants are less likely to avoid speaking situations and more likely to have successful speech therapy.

Then there's that acceptance thing. Yes, we accept our stuttering, but that doesn't mean we're not interested in speaking more fluently or becoming better communicators. My explanation is that acceptance changes the rules about stuttering. When we bring our stuttering out in the open instead of trying to hide it, we're no longer fighting the fear, guilt and shame that get in the way of communicating. Once we shed that emotional baggage, we're better equipped to improve our fluency if we choose to do so.

What makes this easy and fun

My biggest asset as the National Stuttering Association's media spokesperson is our members. The best way to demonstrate the impact of stuttering support is to let people who stutter tell their stories. When I was a corporate media relations manager, preparing executives for interviews was an exacting job. Making sure they stayed on-message required briefing binders, spokesperson training and rehearsals. In a few cases I still had to call reporters afterwards to explain: "What he meant to say was...."

None of this is necessary with NSA members because they get it. When a reporter visits a NSA conference, I can collar any member who has been around for a while and shove him or her in front of a TV camera - and I have. They're eager to tell their stories and talk about how they are living successfully with stuttering. Whatever they say is right on target, and usually more eloquent than any talking points I can devise.

Reference:

National Stuttering Association, 2009. The experience of people who stutter. Full report available at http://www.westutter.org/stutteringInformation/NSA_Survey_Results.html

You can post Questions/comments about the above paper to the author before October 22, 2010.