|About the author: David A. Shapiro, Ph.D., CCC/Speech-Language Pathology, is a Fellow of the American Speech-Language-Hearing Association, a Board Certified Specialist in Fluency and Fluency Disorders, and the Robert Lee Madison Distinguished Professor at Western Carolina University (Cullowhee, North Carolina, USA). For 38 years, Dr. Shapiro has taught workshops and presented papers at professional conferences, provided clinical service, and conducted research on six continents. His book, Stuttering Intervention: A Collaborative Journey to Fluency Freedom (2011, PRO-ED, www.proedinc.com) is in its 2nd edition and continues to find a wide international audience. Dr. Shapiro is actively involved in the International Fluency Association (IFA) and International Stuttering Association (ISA), received IFA’s Award of Distinction for Outstanding Clinician, and served as IFA’s President from 2012-2014. Dr. Shapiro is a person who stutters, has two adult children with his wife, Kay, and lives near the Great Smoky Mountains National Park.|
I have been a person who stutters (PWS) for over 60 years. I have been a speech-language pathologist (SLP) for 38. During this time, I have done my utmost to become the best communicator and the best service provider I could possibly be. Yet, these seemingly compatible aspirations have not been without occasional challenge and even personal discomfort, depending upon the audience in which I found myself. Certainly this experience is not novel. The profession of speech-language pathology was founded by visionaries and pioneers, many of whom stuttered and encountered their own communication disorder daily. Here I will share a few personal experiences as a PWS and then as an SLP, and finally reflect on the uniqueness of being both a PWS and an SLP.
The Line – From Barriers to Bridges
Johnny Cash, known affectionately as the “Man in Black,” was an influential American country music singer, songwriter, actor, and author of the 20th century. From his song, I Walk the Line, one of the repeating lyrics is:
I keep a close watch on this heart of mine,
I keep my eyes wide open all the time,
I keep the ends out for the tie that binds,
Because you’re mine, I walk the line.
All of us walk a line, a path or demarcation, throughout our lives, navigating shared experiences and those that are unique to ourselves. Some lines become more familiar and feel more comfortable; some lines feel awkward because the territory being explored is uncharted.
For example, over 30 or 40 years ago, the line between PWS and SLPs was solid. There was little overlap between the advocacy community (i.e., self-help groups) and that of professionals. Now thankfully, that line is more dotted than solid, uniting us rather than dividing us. It bridges PWS with SLPs, as evidenced by frequent interaction between the advocacy and professional communities (e.g., ISAD Online Conferences, active involvement of professionals in membership organizations of the International Stuttering Association-ISA, and joint congresses of the International Fluency Association-IFA and ISA).
While maintaining the unique mission of each organization, movement toward increased collaboration and communication between ISA and IFA is timely and healthy. Although the line between ISA and IFA is becoming more familiar and comfortable, more work needs to be done. As IFA’s President in 2013, at ISA’s 10th World Congress for People who Stutter (in Lunteren, The Netherlands), I listened to concerns about previous experiences with professionals and a hope that PWS could be in a meeting where “professionals talk with us, rather than about us” and where perspectives of PWS could be heard and received “unfiltered” by professionals. This is a process in progress.
Proponents of ISA and IFA navigate the line as organizations. Also there is a line walked by individuals. PWS walk a line; SLPs walk a line. Some lines are familiar and comfortable; some are not.
Being a PWS – The Line between Rewards and Frustrations
In previous submissions to ISAD Online Conferences (Just the Way You Are, 2004; Being Real, 2007; Stories of People Who Stutter: Beacons of Hope, Portraits of Success, 2011) and in my book (Stuttering Intervention: A Collaborative Journey to Fluency Freedom, 2nd ed., 2011, Austin, TX: PRO-ED), I described rewards and frustrations as a PWS. Rewards included thankfulness for Buddy, my dog, who for years was the only living thing to which I could communicate. Billy, a dear friend, always picked me to play on his team and didn’t care whether I stuttered or not. And my grandfather, walking with me hand in hand by a stream while I stuttered severely, said to me, “I love you just the way you are.” Walking the line included many other rewards too. My ninth grade Spanish teacher smiled during my recitation when I wrote on the chalkboard a word I was unable to say until then because of stuttering. After feeling frustrated because of my stuttering when delivering a speech to a European organization of PWS, many came up to me afterward and said, “You’re one of us!” And Susan, a friend I hadn’t seen in over 40 years, recently asked with both amazement and sincerity, “David, how did you learn to talk?”
There have been frustrations too on the other side of the line. I remember the tension and uncomfortable grin on Amy’s face 45 years ago when I stuttered severely while inviting her to a high school basketball game. I was unable to become a Bar Mitzvah, a cultural and religious achievement, because of severe stuttering. And I received a grade of F (Failure) in the mail after an oral final examination – timed for four minutes on a loud, ticking stopwatch, throughout which I stuttered severely- for a core speech pathology course in my fourth year of college. Some lines are painful to walk and to recall.
Being an SLP – The Line between Rewards and Frustrations
Rewards and frustrations are not exclusive to being a PWS. SLPs walk a line as well. In my writings, I chronicle the remarkable achievements of PWS. Seeing through the eyes of others as they imagine, sometimes for the first time, and realize their dream of communication freedom is truly a joy that defies description. A man who never ordered a meal at a restaurant for his wife during their 40-year marriage now does so and communicates independently. A young woman who looked away and spoke little so that her boyfriend would not see her stutter now looks him in the eye and says, “He’s going to hear what I have to say whether he wants to or not.” A child who stuttered severely and was bullied now speaks without hesitation and is an advocate for others. Not a single day has passed when I have not felt thankful for the privilege and joy of working and learning with PWS and their families. I remain excited and hopeful, having seen positive human potential realized, time and time again, when people commit to each other and share a common interest.
Oddly I am finding it hard to identify the line as an SLP. Surely there are frustrations when some PWS or families cannot devote the time and energy required to realize their best potential. Paperwork always seems to be expanding. And 24 hours available to each day is insufficient. As I continue clinical service, teaching, and research, through which I am fortunate to collaborate with colleagues around the world – and as I continue to see the extent of the human challenges and abject needs that remain – I believe that one lifetime simply is not enough. This frustration is a consequence of loving what I do, with whom I do it, and living long enough to relish every moment and not taking a single one for granted.
Being a PWS AND an SLP –The Line and Bridge Building
Being both a PWS and an SLP invites unique encounters, occasionally creating a tenuous line that feels more like a tightrope. PWS and SLPs hold double responsibility as bridge builders. Sometimes bridges are necessary to walk the line.
Here are a few challenging encounters. As you read and reflect, consider:
- What insights do you have?
- What recommendations do you have for bridge building?
- What lessons are there as we move forward and as respective “truths” of PWS and SLPs are heard unfiltered?
Caution/Distrust from PWS: I have a dear friend who stutters and who is very successful professionally. From previous clinical experiences, he holds resentment toward SLPs. Occasionally, I become the target of his rancor until I remind him that I too am a PWS. Although we have a close friendship, I sense incomplete acceptance from him because I am an SLP, which triggers for him negative associations.
Penalty for Communication/Fluency Freedom: I presented to SLPs who attended a local self-help conference of PWS of all ages. I addressed my clinical methods and clients’ successes. The conference organizer thanked me for contributing to the success of the conference, and then added that she would never ask me to provide a keynote address. When I asked why, she told me that my speech was too fluent. She said, “Other PWS wouldn’t be able to relate to you.” When she saw my chagrin, she countered that she might reconsider but I would have to put a lot more stuttering into my speech.
Understanding and Accepting Divergent Truths: At a large convention of PWS, I presented what stuttering means to me. I explained that I enjoy controlled fluency and communication freedom. While not ashamed of my stuttering, I don’t prefer it or enjoy it. For me, working toward being the best communicator I can be is consistent with my commitment to self-improvement. In such meetings, PWS often come up to me and express their support and indicate that they too are working toward improvement in communication and other challenging areas. Others, however, avoid interacting with me. Some have explained, “I love my stutter and I feel no need to change myself. People will need to accept me for who I am, as I am.” Accepting oneself as one is presently versus accepting oneself as one continually strives to achieve one’s own best are contrastive if not divergent truths.
Being True to Oneself: Some PWS say that they deliberately alter the severity of their stuttering to achieve a desired result with a communication partner. This is different than pseudo stuttering (i.e., creating instances of stuttering in order to maintain fluency control and remain desensitized to the emotional ill-effects). Rather, they adjust their stutter in order to maintain a conversational turn, gain attention, or provide emotional impact.
Impact of Attitudes: Despite measured change of attitudes in a positive direction, negative impressions of stuttering and PWS persist and some SLPs feel less competent and desirous of working with PWS than people with other communication disorders. Daly (1988) proposed that one of the predictors of treatment outcome is the extent to which the SLP genuinely believes the PWS can achieve progress. Given that the clinician’s attitude is predictive and that the clinician’s attitude is negative, how can clinicians gain a more positive view toward working with PWS and their potential for improvement?
Misinformation: Directed toward PWS, I have heard SLPs propose, “My client who stutters would do so much better if he just tried harder.” Some professors have been quoted as directing clinicians away from PWS, saying, “Don’t work with PWS. Work with people who can improve.” Misinformation abounds.
Judgment: Directed toward PWS, Ryan, a proponent of operant principles applied to stuttering intervention, stated, “Research has shown that normal, fluent speech is a realistic goal for all people who stutter. For the professional to accept or to continue to offer less is unthinkable” (2001, p. 202). Directed toward SLPs who stutter, Ryan stated, “It is their right to continue to stutter. But, in light of all the present published treatment efficacy research over the past 30 years … it is a misguided, sad, unnecessary accomplishment and, in my opinion, professionally inappropriate. … These people represent our profession’s failures” (2003, p. 36).
Clinician Suitability: Van Riper stated, “It is difficult for those who have not possessed or been possessed by the disorder to appreciate its impact on the stutterer’s self-concepts, his roles, his way of living” (1982, p. 1). Some PWS and SLPs have stated that clinicians who stutter or have stuttered are better suited to treat PWS. No one can tell those clinicians that they haven’t been there personally. However, some PWS and SLPs have indicated that SLPs who are PWS encounter and must control a degree of personal bias (i.e., the temptation to impose one’s own experience or reactions upon the PWS) and that all clinicians, whether PWS or not, must see the uniqueness of the person being served and relate to the nature of challenge as a human condition.
Additional Questions to Consider
- In what ways – as a PWS, SLP, or PWS/SLP – do you “walk the line”? How have you observed others walking the line? What advice do you have?
- What are the advantages/disadvantages of bringing the PWS and SLP worlds more closely together so that each talks with each other, rather than about each other and so that each hears the perspective of the other “unfiltered”?
- How might suspicion/distrust originate and is this something that needs to be addressed by PWS and/or SLPs?
- What does it mean to “be oneself” and how should being oneself be addressed in the clinical process? Does being oneself take into account how one is perceived by others?
- In what ways might PWS, SLPs, and PWS/SLPs pursue self-acceptance and self-improvement? Are these objectives compatible or are they mutually exclusive?
- What is the objective of the clinical process and how might both PWS and SLPs best contribute to it?
- Understanding and accepting, if not nurturing, divergent truths – that is, conflicting world views – is at the heart of diversity and an enlightened society. How might PWS, SLPs, and PWS/SLPs contribute to such enlightenment?
Daly, D. (1988). A practitioner’s view of stuttering. Asha. 30 (4), 34-35.
Ryan, B. P. (2001). Programmed therapy for stuttering in children and adults (2nd ed.). Springfield, IL: Thomas.
Ryan, B. P. (2003). Response to Coordinator’s Corner (August, 2002). Perspectives on Fluency and Fluency Disorders, 13, 36-37.
Van Riper, C. (1982). The nature of stuttering (2nd ed.). Englewood Cliffs, NJ: Prentice Hall.
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