Stories of People Who Stutter: Beacons of Hope, Portraits of Success
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About the presenter: David A. Shapiro, Ph.D., CCC-SLP, is a Fellow of ASHA, a Board Recognized Fluency Specialist, and the Robert Lee Madison Distinguished Professor of Communication Sciences and Disorders at Western Carolina University in Cullowhee, North Carolina, USA. In his fourth decade of providing clinical services for people who stutter and their families, Dr. Shapiro is a regular presenter at state, national, and international conferences. His book, Stuttering Intervention: A Collaborative Journey to Fluency Freedom, has found a wide international audience; the 2nd edition was released in 2011 (PRO-ED, www.proedinc.com). Dr. Shapiro is the 2006 recipient of the International Fluency Association's Award of Distinction for Outstanding Clinician. He is a person who stutters, has two young adult children with his wife, Kay, and lives near the Great Smoky Mountains National Park. |
Stories of People Who Stutter: Beacons of Hope, Portraits of Success
by David Shapiro
from North Carolina, USA
Although it seems like yesterday, many years ago my daughter asked me to read her a book entitled A Story, A Story, which she described as one of her favorites. It is beautifully written and illustrated and tells how "Spider Stories" came to exist. Spider stories are tales of how small, defenseless people and animals outwit others and succeed against great odds and adversity.
Once, all the stories in the world belonged to Nyame, the Sky God. He kept them in a golden box next to his royal stool and refused to let them out. But then Ananse, the old and frail Spider Man, wanted them and agreed to capture and deliver three dangerous creatures, the Sky God's seemingly impossible price. Determined and focused, Ananse accomplished his objectives, to which the Sky God proclaimed, "My stories belong to Ananse and shall be called Spider Stories." Ananse then took the golden box of stories back to earth, to the people of his African village, and scattered the stories to the corners of the world. Ananse conveyed, "This is my story which I have related. If it be sweet, or if it be not sweet, take some elsewhere, and let some come back to me." This is how we got our own stories to tell.
This conference is about stuttering and people who stutter. People who stutter, like all other people, have stories to tell. Some of the stories are sweet, some of them are not sweet. The stories shared between people who stutter and their families, friends, clinicians, and others provide a web, a network, a system of communication that connects people to each other in a shared focus that transcends time and place. The stories, some of which are yearning to be told, provide a basis of commonality and dialogue between people.
Stories convey a message or a lesson. Stories told within a clinical context are no exception. However, no less significant within the clinical context is the actual telling of the story. Telling, sharing, and exchanging stories express hope, trust, courage, and faith. These entities are not given. They are earned and nurtured by the clinician. They express the client's developing belief that the world of communication can improve, that good things can happen to good people, and that good things can become even better.
Achieving fluency freedom. This is our mission - to enable each to find and share his or her stories, be they sweet or be they not sweet, with the strength and confidence of Ananse, expressing hope, trust, courage, and faith. Such freedom cannot be reflected or constrained by fluency counts; ultimately it is a joy that is internal, aesthetic, personal, and lasting.
My purpose here is to share and reflect on a few stories of people who stutter. Such stories, which could be told every day, are tales of inspiration around the world:
Stories
Jennifer first came to me as a freshman at the university. She was 19 years old and had dark, bold, beautiful eyes. Previously, Jennifer had only discussed stuttering with her mother. That she came to talk with me reflected courage. Jennifer was adept at concealing her stuttering; she rarely spoke. She looked down at the floor, at the wall, anywhere, instead of at me; she never laughed. She responded minimally to questions and talked infrequently. When it was her conversational turn, Jennifer closed her eyes and put her head back in frustration, relinquishing her turn. Frequently, she told her boyfriend, "Never mind" or "Whatever," rather than let him see her stutter. "Why can't I talk like others," she asked. After being provided early opportunities to experience fluency success, Jennifer confided to her mother, "This is the hardest thing I'm ever going to do, but I know I can do it." This is success. Jennifer wanted to be able to talk in class, on the phone, and to her boyfriend. Also, she also wanted to be able to order fast food at McDonalds from the microphone outside. Indeed she accomplished her objectives with controlled fluency. She succeeded in all of her classes, including a public speaking class; she was employed part time during the last two years of college at McDonalds, taking orders in the restaurant and through the microphone outside; she regularly used her phone for social and professional purposes. And now, she looks everyone in the eye and, about her boyfriend, says, "He's going to hear what I have to say whether he wants to or not." Jennifer graduated and is employed at a medical clinic near her family's home. This is success; this is fluency freedom.
George was brought to me reluctantly. He was a bright young man but had failed out of a major research university because of his inability to communicate with his professors and classmates. In the ensuing two years, George was unemployed and uninvolved socially. This was a difficult time for him. At our initial meeting, I advised George that he need not believe anything I told him; he had a history of previous treatment and felt abandoned by former clinicians. "Believe what you experience for yourself," I told him. After creating initial opportunities for George to experience fluency success, I was pleased when he returned for a diagnostic evaluation. I was even more pleased when he decided to re-enroll at a university. George pursued treatment. Initially, George's stuttering was characterized by nasal flaring combined with upward rolling of both eyes, facial grimacing, and hard bilabial and laryngeal blocking, word and part-word repetitions, and prolongations. He was very specific regarding what he hoped to accomplish. That included speaking fluently in job interviews, class presentations, ordering at a restaurant, talking with strangers, speaking with family, using the phone, and in predictable phrases with perceived time pressure (e.g., hello, thank you). George was involved in group and individual treatment, initially exploring "What is effective communication?" and using three fluency facilitating controls (even rate, gentle onset, and natural inflection). With some success using fluency controls, George confessed, "Now that I can talk fluently, how do you know what to say?" This insight was important, generating a focus on conversational pragmatics (i.e., how the language we use varies according to the conversational context). George accomplished his objectives with controlled fluency and significantly reduced his disfluency. George graduated with honors from his university, is employed at a major software company, and is engaged to be married. He refers to going to fluency treatment as "the turning point in my life." This is success; this is fluency freedom.
Jonathan came to me when he was 20 years old. He had many interests. He was the manager of his high school baseball and football teams; he was a fisherman; he was enrolled on the roster of volunteer firemen. He was fond of his parents and grandparents and John Wayne movies. He had excellent social skills and a good sense of humor. He had a black Labrador retriever service dog, was enrolled in a special university program, and was employed at the local sheltered workshop. And he was a person who stutters and had cerebral palsy, epilepsy, and cognitive and neurological deficit. After our first meeting, I recorded "I cannot imagine a better or more supportive family." Jonathan demonstrated a unique stuttering behavior - rapid tongue protrusion and retraction, combined with rapid speech of increasing loudness. Jonathan's treatment was behavioral in nature to eliminate the noticeable tongue movements. Jonathan was directed with "no rush" and "no shout" in order to achieve, as he described, "speaking normally, slowly, and quietly." Asked to self-evaluate upon elimination of tongue protrusions, Jonathan observed, "They're gone." Jonathan continued to succeed, receiving praise from family and friends. However, progress reverted after each unpredictable seizure. I attended Jonathan's high school graduation and university ceremony. I was included in Jonathan's family system and circle of professional support. I have never met a person who was more responsible or committed to the task at hand than Jonathan. In a letter about Jonathan, I wrote, "Meeting, working with, and learning from Jonathan and his family have been, for me, professional and personal highlights. They are rare people. I am convinced that Jonathan is not a person with special needs. Rather, he has uncanny special abilities which, in several instances, I can only hope to emulate." This is success; this is fluency freedom.
Lessons
As a speech-language pathologist and as a person who stutters, I have learned so much from others who demonstrate the strength of Ananse, facing their challenges head-on, thereby conveying and inspiring hope, trust, courage, and faith. I have learned that success takes time and commitment and that success may be perceived differently by different people. Many years ago, a little boy I worked with said, "I can't know" when he meant "I don't know." That led me to think about the distinction between what is known and what cannot be known. Sometimes one cannot know a victory for another person. Jennifer came and talked with me about stuttering; George re-entered treatment and re-enrolled in college; Jonathan continued to work to regain his fluency control with a sense of humor after each seizure; these are successes. Opportunities for success abound every day. I can only hope that the people I serve, including people who stutter and their families, gain at least as much from me as I do from them. They inspire me to dream. Here are a few of my dreams.
Dreams
My Dreams for People Who Stutter
I have two primary dreams for people who stutter, both of which have been life-long pursuits for me. First, I want you to know that speaking freely is not just a freedom - which it is, but is your natural right. It is your right to speak in your own words or to choose not to speak, as long as the decision is your own and not affected by concern over listener reaction or whether you will be able to master your fluency controls. Second, as a person who stutters, I know the experience of feeling less than or not equal to others. As I have professed to my children, my clients, and my students, I wish for you to learn and find the confidence to feel equal to and as good as any person past or present, and the humility and civility to feel better than not a single one. Last, I wish for you to realize your dream, to find your pot of gold, whatever it might be, at the end of your rainbow. I wish for you to realize that stuttering does not need to define who you are. Only you can define who you are; that is within your control. Who you are is not defined by your percentage of fluency, but by the choices you make, how you treat others, and your character values of discipline, hard work, and kindness. I wish for you success in being an instrument of joy so that you create and nurture a life of lasting meaning and value, one filled with love and both personal and professional satisfaction.
My Dreams for Speech-Language Pathologists
I wish for you to continue to set an example for how human challenges can be lightened when diverse professionals come together to learn and to share their skills. My dreams with you are to continue to develop our professional and personal collaboration with others, both local and global. An African proverb translates to "One hand cannot tie a bundle." We are stronger and wiser together.
My Dreams for the World
Finally, my dreams for the world are these: To learn that by focusing on a common purpose, the differences that are viewed by some as potentially divisive (e.g., political, geographic, economic, religious, ethnic, etc.) simply drop away. What we are left with are diverse people working together for a common purpose, growing and learning together, as one people, as one family, setting an example for how insoluble problems can be addressed by constructive and positive means, indeed by communication.
Closing
In closing, stuttering and understanding stuttering is a message of great import. However, the beauty of stuttering intervention is that, at some point, the message of stuttering becomes a medium for a much larger message, indeed one of harnessing and achieving positive human potential. I dream that our quest for fluency freedom, indeed our thirst for freedom of speech, unites us in a greater understanding, a more harmonious existence, and a more peaceful world. That is my wish.
