About the presenter: Ken St. Louis, Ph.D. is a specialist in fluency disorders at West Virginia University. Having grown up with stuttering, he has experienced many of the difficulties faced by those who stutter. Ken's current research is in stories, public attitudes toward stuttering, and the problem of cluttering.

You can post Questions/comments about the following paper to the author before October 22, 2005.

The Story of Living With Stuttering

by Ken St. Louis
from West Virginia, USA

I stutter sometimes, but maybe not enough in front of my undergraduate and graduate students learning to become speech-language pathologists. I learned that I could teach them to recognize facts about stuttering, identify the obvious symptoms of stuttering that anyone can recognize, and appreciate some of the foggy complexity surrounding this unique speech disorder. What I seemed often to fail to do was to give my students an appreciation of the human condition lived by those who stutter.

Ten years ago, an idea popped into my mind that I should have all the students talk to someone who has experienced stuttering personally. More than that, they should hear, one-on-one, one person's unique story of stuttering. For the graduate students, I inaugurated the following assignment. "During the semester, find someone who stutters, or used to stutter, or the parent of someone who stutters, or used to stutter. Interview them for no more than 30 minutes with the lead request, ŚTell me your (child's) story of stuttering.' Use as few prompts as possible, and tape record the interview. Then type up a verbatim transcript of the interview and write a short summary of what you learned." Many of the students did not know anyone who stuttered. Before I helped them too much, I asked them to talk to their parents, relatives, and friends to see if any of them knew someone who stuttered or had in the past. Most were able to find someone "back home" and arrange to do the interview. Surprisingly, several ended up interviewing a parent whom the student never knew stuttered!

Students have almost uniformly found this to be the most memorable part of their class in fluency disorders. That was reason enough to continue the assignment, which I have done. More important, however, I was amazed and humbled by what the students turned in. Almost every story overflowed with details and anecdotes about suffering and triumph, discouragement and accomplishment, fear and courage, and all of the very stuff of human struggle. I knew before I had read ten interviews that there was something here worth pursuing. Since that time, I have carried out numerous qualitative analyses of the data for which we had permission to analyze. I looked at themes, words, and content categories, and each of these procedures revealed that these interviews were a rich source of information about stuttering. But each qualitative procedure ended up losing the most valuable part--the story itself.

If I were to capture and share the amazement and humility that I experienced from reading the stories, I decided that I would have to publish them in their entirety. Therefore, with the help of Crystal Hightower, a very capable undergraduate student at the time, we selected twenty-some upbeat interviews or those that specially portrayed how people successfully learned to cope and live with their stuttering. (Of course, there were others for whom stuttering continued to be a serious burden, handicap, or source of extreme difficulty.) Some, like that of Ann Jaffe who started to stuttering after the age of 90, were chosen for their special interest. I contacted the people and asked if they would want their stories in a book written to people like themselves--ordinary people who happened to stutter or know someone who did. All but two or three agreed. I also included my own story and asked two or three stuttering friends who were not interviewed to write their stories. We all signed publishing agreements, and Crystal set about to clean up the interviews, which by nature are often disjointed, into the authors' own language but in an organized format. Each author then read, offered suggestions, and eventually approved the final stories for the book.

The 25 stories comprise half of the book. Yet, because this was to be a book to and for people who stuttered, I wanted to provide useful, accurate information as well, especially since some of the stories contained some home-grown suggestions that might not be helpful to everyone. I wrote a chapter called "Stuttering 101" wherein I tried to summarize current information about the nature and treatment of stuttering both for children and adults. I also wrote an appendix on "Taking Stock" which includes telling and recording one's story. "Taking Stock" could also involve filling out the St. Louis Inventory of Life Perspectives and Stuttering (SLtILP-S), also featured in the appendix. This is a short questionnaire that can be used to track how one's story has changed‹or might change--as one better learns to live with stuttering. Additional appendices feature "Rights and Responsibilities for People Who Stutter," stuttering terminology, and resources for learning more about stuttering and finding competent help.

In retrospect, it is probably no accident that all this happened. My wife Rae Jean Sielen and I have a publishing company, called Populore Publishing Company, which specializes in collecting and sharing stories of ordinary people. Until I wrote the book, I did not connect Populore's mission with my story research. I soon realized that, in addition to the healing that telling one's story can foster, the story itself is a legacy that can and sometimes should be passed on to one's children, grandchildren, and to society.

Stutterers (and clinicians) have told me that they have found that specific stories speak specially to them (or their stuttering clients). For example, one SLP confided that it was through reading a story from a female stutterer that her female stuttering client found the courage to pursue speech therapy. Teachers of stuttering classes (including me) use Living With Stuttering as a primary and/or secondary text in university classes in fluency disorders. Like me, many have found that the stories really do put a human face on the problem of stuttering.

People interested in Living With Stuttering: Stories, Basics, Resources, and Hope can contact the National Stuttering Association on-line bookstore or Populore’ Publishing Company (www.populore.com or 1-866-667-8679).

You can post Questions/comments about the above paper to the author before October 22, 2005.

August 8, 2005
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