“I Walk the Line” – Being a Person who Stutters and a Speech-Language Pathologist

ISAD 2015 (Shapiro portrait)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?

References

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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Comments

“I Walk the Line” – Being a Person who Stutters and a Speech-Language Pathologist — 99 Comments

  1. Hi David. Thought-provoking paper (as always). The Client Suitability issue has come up repeatedly in support group meetings. Usually it begins with people who agree with Van Riper—they only want stuttering SLPs because they believe those are the therapists who will truly understand their plights. It’s probably true that there are thoughts and feelings that a stuttering SLP will instinctively comprehend, but I point out that there are many non-stuttering SLPs who are outstanding in their treatment of stuttering (which, come to think of it, is probably bad for business). We also talk about how easy it is for stuttering SLPs (OK, me) to fall into the trap of what you termed “personal bias” (aka what-worked-for-me-will-work-for-you), even when we know better.

    • Hi Dale, Thanks, as always, for your kind words. I agree that all clinicians, whether PWS or not, need to control for a degree of personal bias. The point is that clinicians must see through the eyes of the person we are committed to serve, rather than be locked into and limited by our own perspective. And perhaps it is that small but significant degree of empathic distance, the “as if,” that enables us to get that close (i.e., “as if” it were our own experience) while maintaining both sensitivity and objectivity as we strive toward fuller understanding. If ever I am “singing to the choir,” I know it is now. You are that type of amazing clinician. Kind regards, David

  2. Thanks so much David for sharing. I am really touched by your experiences. Walking the line, so inspirational. Its really awesome.

    • Hello Jonas, It has been a decade since we visited in Douala, Cameroon at the 1st African Stuttering Congress. I continue to hold special memories. Thank you for sharing your thoughts and encouraging words. I know you continue to do good work in service of the advocacy movement and the larger stuttering community. Perhaps by email you might update me on your activities. Warm regards, David

      • Thanks so much David. Its always a privilege to hear from you. Our past good memories of sharing and working together is what gives us hope. We will be in contact after the conference.

  3. Thank you, David, for a thought-provoking paper. For me, as a non-stuttering SLP and the mother of a young child whose fluency has fluctuated over the last 1-2 years, I believe acceptance and improvement are completely compatible.

    I remember the day, the place, and the time when I looked at my son as he struggled to communicate fluently on one occasion, and I determined in my heart that even if the stuttering persisted, that he would know he was fully loved and fully accepted. Regardless of how he communicates, he is the same bright, active, funny, affectionate little boy I adore, however, I will not deny him the tools he may need in order to become the best communicator he can be, with or without the stuttering. In any area of our lives, we can accept who we are and feel fully comfortable and confident in our own skin while still seeking to grow in areas where we feel change would be beneficial. I believe a growth mindset is always healthy!

    • Hello Ana, Thank you for sharing so clearly your interpretation of what I was trying to say. Indeed self-acceptance and self-improvement are completely compatible and are at the heart of a positive growth mindset. That duality relates to addressing a communication/fluency challenge or any other aspect of life. Truly your nurturing influence will enable your son to achieve both. And your understanding of both communication challenge and the nature of the human condition can only contribute to your effectiveness as a clinician. I am so glad you are an SLP. Kind regards, David

  4. Hello David,

    I was very interested in the part where you talked about your friend who stuttered and feeling like he didn’t fully accept you because you were an SLP. Did something specific happen with him and his own speech therapist that created such a negative perception of SLPs? Is your friend’s attitude toward SLPs a thing you come across frequently?

    • Hi Melissa, Honestly I don’t know the details of this friend’s experiences with the SLPs. I have not probed and he has never fully shared the specifics with me. However, he has made numerous comments indicating his displeasure, noting that SLPs do not fully understand the nature of stuttering and have not changed their clinical methods despite ongoing advances in clinical research. Indeed I encounter initial reluctance and even resentment among PWS at our initial clinical meeting. I don’t challenge such genuine feelings and I don’t try to persuade them otherwise – one’s perception is based on one’s own past experience. Rather I try to understand the client’s world, including their previous clinical experience, through their eyes, without judgment. I help them become fully informed about stuttering and the options they might consider. Sometimes, I even tell them not to believe a word I have to say. This usually captures their attention. Instead, I urge them to believe what they experience for themselves. Then, my job becomes one of creating for the PWS (and their family) opportunities to experience success. Success begets success and is believable and motivating. It is true that actions speak louder than words. You’re asking a good question. Thank you for your interest. Kind regards, David

  5. Hello David.

    Thank you very much for this interesting and timely paper. PWS and SLPs should indeed be working towards bridging the gap between us. A lot of the discussion, of course, in on how to do this, and your paper presents many pertinent concepts for us to think about. Many PWS have such bad experience with SLPs that it is going to take time and effort on our side to bridge the gap. We, myself included, need to recognize the trauma of horrifically ineffective treatment and help guide our fellow PWS to realizing that there are more and more SLPs who are different and more aware of the entire person.

    I am of the opinion that “Accepting oneself as one is presently” is not contradictory to continually striving to achieve one’s best. The question of what is one’s best, however, is entirely subjective, and does not have to include Fluency. What is necessary is the letting go of the need for fluency, and letting go on the side of SLPs (and some PWS) of judgment based on fluency. This is the core of the gap. Sheehan’s assertion that “(1) your stuttering doesn’t hurt you; (2) your fluency doesn’t do you any good” is key. Fluency should not be labeled as Good and stuttering should not be labeled as Bad. The point is how we communicate, and how much we let our stuttering hold us back. For me personally, this approach has worked wonders. I stutter but am no longer full of self-loathing. There are fewer situations in which I stop myself from communicating. And, most important, my Struggle is vastly reduced as I avoid less and less over time.

    Many PWS are unimpressed by “fluent” keynote speakers since the image presented is so remote from what they perceive themselves as able to achieve. The implied equivalence of Fluency with Success is anathema to many, especially considering the significant struggle to speak. This is another gap we need to bridge, that is, appreciation of the freedom to speak that so many PWS have achieved. We should be happy for you, for example, that you have achieved your Freedom. And so, it boils down, perhaps, to Empathy, to learning to listen to each other and to understand each other.

    Thanks so much, David.

    • Hello Hanan (what a wonderful name), Thank you for your thoughtful observations and insights. I see several areas of commonality in our thinking. Know that I would welcome differences as well. I work to understand the best I possibly can the world as each person I serve sees it, through their eyes. You’ll notice in my reply to Melissa just above that I don’t challenge the perspective of others; one’s perspective is one’s reality. Rather I create opportunities for each person/family to experience success – whatever target or objective they have devised or we have devised together. As you say, trauma is real – it is memorable. For me, the best antidote to trauma is success. That success is what we construct clinically – first by the clinician, then by the clinician and client/family, and ultimately by the client/family. And what constitutes success? That must be responded to and defined by each PWS. I have seen so many people become able to embrace their own world, heretofore seemingly out of reach, while striving to become the best communicators they could possibly become. That is the point. Some felt content with their level of fluency control; some continued their own personal quest in this area. Success indeed is not defined by speech fluency alone. I have seen the impact of communication success reflected in those who began to date, who married, whose inward beauty became outwardly observed, who were so fearful that they would lose their job eventually choose to resign and pursue professional options, and more. In short, as a result of treatment, I have seen diverse people elect to say the words they wanted, without fear of listener reaction. Speaking one’s own words is one’s birthright; it is not a lucky privilege. This is the challenge SLPs and PWS face together; this is an SLP’s joy. I have enjoyed this privilege for nearly four decades. I am probably even more excited now about what we do as SLPs than I was when I first began. And yes, our shared challenge is to construct bridges. Doing so is a significant choice, one that can serve as an exemplar to the world for how to communicate, how to find common ground, and perhaps –as I have shared repeatedly, how to achieve peace. Truly I appreciate your thoughts. I hope one day I will meet you in person. Warm regards, David

  6. Hi David, thank you for sharing your experiences and giving us insight into the unique perspective of being a PWS and an SLP. Your experience is truly amazing and inspirational. Although I do not stutter, I can relate to your experience because I had a TBI (received speech therapy as a result) and am currently on my path to become an SLP. As you mentioned, there are definitely rewards and challenges of becoming an SLP with a speech impediment. However, I agree with you that our experiences can truly be a blessing and hope to other people struggling in similar ways.

    I had a question in mind for you. If you see a client who is struggling with their self-esteem and have not come to a point of acceptance, how do you walk the fine line of being a therapist who can help that person come to embrace themselves but yet not impose your beliefs and values onto them. In other words, if you see a greater potential for your clients but they have a hard time following through by devoting their time and energy into therapy, how do you motivate them? Thank you for all your work and I look forward to hearing your thoughts!

    • Hi Angela, Thank you for sharing your personal experience. Indeed we don’t choose certain experiences, but we can choose how we respond and the decisions we make as a consequence of what might befall us. My objective one day was to learn to talk. Never could I have imagined the rich life that resulted. To have a family I adore, a career I cherish, and friends and colleagues all over the world, all of whom share a common interest – people can’t dream this type of good fortune. Truly I wish you all good fortune by embracing your potential and by building bridges with others. I am so glad that you are pursuing a career in Communication Sciences and Disorders. We need good professionals to join our ranks. And you’re asking a wonderful question – In other words, how can we motivate a client, each client, to achieve his or her own unique best. You’ll notice in my replies above that I have spoken to the value of constructing opportunities for each client/family/student to achieve success. As I shared, success begets success and is believable and motivating. In fact, all of my treatment is designed around three key factors – collaboration (doing with not for; creating communication independence and transfer from the very first meeting), success, and fun (the genuine human pleasure of being in each other’s presence and, as a consequence, learning and growing together). What I have learned is that things that seem difficult to achieve take a lot of work and time. Those that may seem impossible may take even more. Keep it up! This field needs you. Kind regards, David

  7. Hi David, Thank you so much for this thought-provoking article. While I do not stutter, I work with SLPs and students who do, and these questions come up a lot. You mentioned being told that you were (at that moment) “too fluent” for PWS to relate to. On the other side of the line are the SLPs who may be told they struggle too much to be good role models for improvement. From my perspective, focusing on the surface features of stuttering does not get at someone’s ability to be a good role model or someone’s ability to support or motivate others who stutter. We should probably be evaluating the person’s message, his/her life impact from stuttering, acceptance of his/her own stuttering as well as other people’s misconceptions. It reminds us that “severity” of the problem can be much greater for someone who stutters covertly (with minimal surface features) than someone who shows visible struggle and participates fully in life. While many reading this would agree with me, there are daily struggles for SLPs who stutter: The school administrators, clinical supervisors and parents who want the SLP to be “fixed” (at least on the surface) or “mild” to work with children who stutter. Unfortunately, this sets up a scenario of “trying to be fluent”, which inevitably leads to more struggle. I would wonder how others have worked through some of these issues. Thanks again, David. Vivian

    • Hi Vivian, Thanks for sharing your valuable insights. It is true that all of us walk a line. I am reminded of a recent presentation I made at IFA’s 8th World Congress on Fluency Disorders (Lisbon, Portugal; July 2015). With professionals and PWS assembled from 32 different countries, I charged all present, among other things, to commit to dialogue. I explained that dialogue might look like talking, but must contain at least three distinct elements: shifting perspective to consider another point of view, talking with people whose world view is different than your own, and questioning. Perhaps dialogue is a key to all who walk the line. That way we can be sure we hear and are heard and, all the while, learn and grow together. My hope is that such a commitment will lead to greater understanding and acceptance of others –and ourselves. Kind regards, David

  8. Dr. Shapiro,

    I enjoyed the paper! As a PWS/SLP, I find myself too walking many lines. Whether it’s recognizing my personal bias in support of Stuttering Modification over Fluency Shaping or attempting to treat clients with non fluency related impairments with as much enthusiasm as I have treating clients who stutter. I often feel like as a PWS/SLP I don’t fully belong to either the PWS group of SLP group. I am somewhere between crossing this line in an attempt to realize “truths” on both sides of the fence. Historically, stuttering Tx was founded by PWS like Wendell Johnson, Charles Van Riper and Joseph Sheehan just to name a few. Over the years, it seems that SLPs have attempted to discredit fundamentals elements that made such clinician’s as these successful. Things like empathy, personal experience, and faith in the clinician-client relationship. Empirical research and evidence based practice fails to account for many treatment techniques as these. In order to bridge the gap PWS and SLPs will have to learn how to respect each other. One size does not fit all. Understanding that all perspectives related to stuttering have some validity may help PWS and SLPs tolerate each other, if not reach a gray area of agreement. I believe that the objective of clinical process is for a SLP to assist a PWS to reach her/his potential for effective communication and success in life. The SLP needs to ask the PWS and her/his family what they hope to achieve in treatment. It’s the SLPs job to figure out how to best reach these goals. Because of who, do we PWS/SLPs walk the line? I say it’s for all PWS and ourselves as SLPs in an attempt to eliminate suffering related to stuttering. Thank you for deeper reflection on a topic that needs to be addressed. Derek

    • Hi Derek, From our previous interactions, I knew you would relate to “walking the line.” It is a challenge all of us experience – PWS, SLPs, PWS/SLPs, among others. Recognizing one’s own bias is essential to ensuring that the decisions we make as SLPs have the individual client’s/family’s best interest in mind. Indeed, notwithstanding our own bias, we must see the client’s world as s/he sees it. I share your concern over narrow interpretations of evidence-based practice. I have found that use of relevant evidence from a broader perspective serves the client’s best interest and the clinician’s commitment to that client. As our field moves forward, some truths remain: the essential element of the client-clinician relationship, the importance of empathy, the value of insights and clinical skill gained from experience, and more. Take a look at what I shared with Vivian, just above. I think you are implying that the clinicians and PWS/family/allied professionals/administrators/etc. need to be in dialogue so that each is aware and respectful of multiple truths, however diverse those truths might be. PWS, SLPs, PWS/SLPs, among others all have perspectives that are worthy of consideration. Keep up the passion; keep up the good work. Kind regards, David

  9. Hi David, congratulations on both your musical taste (I’m a big fan of Johnny Cash) and a fine paper! You’ve had me reflecting on the many (solid and dotted) lines I’ve experienced in my own journey as a PWS and an SLP (a journey that you, professor, have certainly been a part of). Along the way, I have experienced plenty of acceptance and kindness, but also misunderstanding and judgment from people who thought I was either too fluent or stuttered too much. But I will save these stories for another day. I want to address your question regarding understanding and accepting divergent truths, and how we might contribute to an enlightened view. Here, psychiatrist Dan Siegel’s notion of honoring differences and promoting compassionate linkages with one other springs to mind. I am thinking of (and missing, thousands of miles away) my good friend who stutters. Although we embrace the same advocacy community, it appears that on the surface, we have taken divergent paths. My friend stutters openly and regards fluency as a fair weather friend. For him, giving up on fluency and learning to communicate effectively while stuttering have paved the way to communicative freedom (and he is one of the best communicators I know). By contrast, I speak with controlled fluency, to the extent that I am able, and try to accept and manage the stuttering that remains. That is my path toward communicative freedom. For him, letting go of control is the way; for me, embracing control. Where we find common ground is, well, everywhere – in the respect we have for one another; in the honoring of one another’s experiences and stories; in the recognition of the self-acceptance, self-compassion, and committed effort it takes to make changes of any kind in ourselves as communicators; and on and on. When we are together, there are no sides for us to take, except each other’s side. We try to be mindful as people who stutter (and I as an SLP who stutters) to remain open and receptive, to refrain from seeing the world solely through the lens of our own story. David, echoing you, I share this reflection as a hopeful reminder that respect, kindness, and compassion may be extended on both sides of lines and may serve as a bridge between them. Warmest regards.

    • Hi Rob, You interpreted and rephrased the message I intended beautifully. And you’re right – Respect, kindness, and compassion must be extended and received by all, regardless of where the line might fall and the form the line might take. Regarding divergent truths, I think you’re also offering a reminder that one’s own perspective is not necessary shared. Our own perspective is just that; it is a perspective, not the perspective. Your friend within the advocacy community is fortunate to have you as a friend; who wouldn’t be? You seek to understand without judgment; you listen openly; you receive warmly and wisely. One’s behavior, one’s example, often is the best form of instruction. For that reason, you are a fine teacher. I have seen you develop, since we met nearly 20 years ago, into a talented clinician and a remarkable family man and community citizen. Truly this field needs you. I am so thankful you are in it. Let’s keep this conversation going. Warm regards, David

    • Hi Joe, Thanks as always for your kind words. As I remain in touch with several of your former students, I know that you are continuing to do good work. I welcome an opportunity to reconnect with you. Maybe we can consider some plans. Warm regards, David

  10. Wow! You bring such an unique perspective to the world of Speech-Language Pathology! As a graduate student at Idaho State University, we are taught in fluency class and in clinical placements to pseudostutter with our fluency clients. Of course there are advantages to this practice in that we are creating an environment for our clients who stutter in which they might feel more comfortable, instead of feeling like an outcast for being dysfluent. However, I also often think about how a person who stutters might view a fluent person “pretending” to stutter as a negative thing. I sometimes feel as though pseudostuttering could be perceived as mocking by a person who lives with the disorder day in and day out.
    I commend you on your bravery for not only living with stuttering but having the courage to become a professional in a field that treats it. I can imagine that your clients feel an extreme sense of ease knowing that the clinician across the table has personal experience with a communication disorder, instead of just reciting research and “acting” like they understand. I can imagine that this unique perspective, as well as the empathy you are able to convey to your clients allows for more individualized and successful therapy.

    • Hi Jaime, Pseudostuttering often is recommended both for PWS to achieve desensitization and fluency control and for SLPs/student clinicians to help achieve familiarity with the nature/territory/reality of stuttering. As you’ve suggested, there are both advantages and disadvantages in being an SLP who is a PWS. The point is that SLPs, whether PWS or not, must see through the eyes of the person they are committed to serve. Pseudostuttering may be a start. I encourage my student clinicians to talk with their clients; ask them what it is like. Our clients can be our best teachers. Recently in a group of PWS combining self-help/advocacy and modified direct treatment, one PWS responded to a student clinician’s question that the moment of stuttering was like a riptide, where the current totally catches you off guard. Sometimes all the controls in the world, he explained, just cannot compete with this force of nature. This led to a wonderful sharing among the student clinicians, none of whom stutter, and the PWS. You may want to look at an ISAD paper two years ago by Kristen Bragg and Perry Fowler, two former students, both of whom are now SLPs. When implementing an activity they designed (Catchphrase) for a teen who stutters, they became far more familiar with the stuttering territory than they expected. They both have told me that they will never forget that experience. You can review their experiences at: http://isad.isastutter.org/isad-2013/papers-presented-by-2013/catchphrase-a-stuttering-intervention-activity-with-unexpected-benefits/. You’re in a great program at Idaho State. Keep up the good work. A career in CSD is absolutely rewarding. I’ve been at it for over 38 years and I am even more excited to be an SLP today than I was when I first began. When you prepare for classes and clinical assignments, and soon when you are working as an SLP, remember this: Prepare and serve as if there were no tomorrow. Our field – and people with communication disorders – are counting on you. Good luck, David

  11. Hi David – great paper! You shared with such honesty and boldness. It’s important to realize that in many stuttering communities there is still a divide between SLPs and PWS, unlike the NSA which seems to be partnering well with the professional community.
    I was particularly struck by your revelation that a conference organizer remarked that she would never ask you to be a keynote because your too fluent. I’m surprised this person would come right out and say it. But I’ve heard that many PWS don’t like fluent keynoters because they are hard to relate with. Personally, I think it’s important for kids and teens (and parents) to hear stuttering so it can be normalized for them.
    Thanks for bringing up so many good points to ponder. -Pam

    • Hi Pam, Thanks as always for your kind words. Actually I appreciated that the organizer was candid with me. I was only surprised that she seemed unwilling to encourage each person to strive toward his/her own personal best while accepting/respecting that of others. For me, and I know for you, that is at the heart of building bridges between and among members of the professional and advocacy communities. While our missions are distinct, after all we are one. At least that is my view. I truly appreciate all of your efforts to build such bridges and to facilitate mutual understanding. Keep up the good work. Kind regards, David

  12. Hello David…
    It’s been way too long.Beautiful paper. Straightforward and honest. I was thinking that I have witnessed the change of the relationship between the SLP and PWS in the National Stuttering Association (NSA) and feel the gap has been bridged. I do understand people unfortunately still find themselves in the hands of an SLP that might not understand them or understand stuttering. Though we can’t get rid of those who pass judgment or who are misinformed, I know there are enough caring SLP’s who stutter or who do not stutter that speak up and do the best they can to meet our needs. I do hope with the World Congress being hosted by the NSA perhaps more will witness the joining of the two and experience what I have first-hand…a mutual respect, understanding, and the ultimate desire to create a better quality of life.
    Annie Bradberry

    • Hi Annie, Indeed it has been way too long since we have been in touch. Few people have done such excellent work building bridges and fostering mutual understanding as you have. I know you are continuing to do so, and I am personally thankful for that. I too look forward to the 2016 NSA Congress. I think we are on the same page. IFA’s 8th World Congress on Fluency Disorders last summer in Lisbon, Portugal brought together PWS and professionals from 32 different countries for an opportunity to dialogue, to listen, and to learn. It was so rewarding. Plans are underway to continue this initiative at IFA’s 9th Congress planned for 2018. We all have much work yet to do and I know we will achieve more by collaboration and mutual respect. Today is a new day. Thank you for helping to make this possible. Warm regards, David

  13. David –
    Thanks for being real and honest in a professional world that is less than…
    Retz

    • Retz, Few people are as real, honest, and affectively rich as you. You’re leading the way in building bridges. We need you to continue this good work. I am personally thankful for all you have done over the years. I have fond memories of you playing guitar with young PWS at an NSA meeting many years ago. That legacy – for PWS and SLPs – is lasting. That circle is unbroken, thanks to you. Warm regards, David

  14. Dr. Shapiro,

    I enjoyed reading your post about being a PWS and an SLP. Currently, I am a graduate student in Speech-Language Pathology. After reading your article, I thought it was interesting to note that fellow SLPs believe it is less rewarding to work with PWS. Also, I thought it was interesting that PWS may have a negative connotation towards SLPs. I would expect this to occur with older children and adults who have seen a speech therapist. I feel that if the motivation towards speech therapy is absent, it will make therapy that much more grueling. What advice can you give to graduate students to keep in mind while working with PWS if they view speech therapy negatively?

    Chelsea Healey

    Chelsea Healey

    • Hi Chelsea, It is true that negative attitudes toward stuttering and PWS persist, yet things are changing in a positive direction. That is why building bridges must be a shared commitment. And you’re asking a good question – Why do some PWS view therapy negatively and what might we do about it? There might be different reasons predisposing PWS toward negativity – previous unsuccessful treatment, exposure to negative attitudes, etc. I find that creating opportunities for PWS and their families to experience success is the best way to reverse negative attitudes. Nothing motivates better than success. Success begets success. I often tell PWS not to believe a word I have to say. Rather, I tell them to believe what they experience for themselves. Experience, particularly successful experience, is a good teacher. Feel free to contact me by email regarding how we create such successful experiences. You will discover that CSD is one of the most rewarding careers possible. PWS and others are counting on you. Keep up the good work. David

  15. Dr. Shapiro,

    Your article is fantastic with truthful viewpoints and opinions that I have yet to see such as you do not prefer to stutter or enjoy it. Also I am in awe of the hard time that you have been given for being “too fluent” in your speech. If anything I would think a success story of a PWS presenting to a group of others whom stutter as well would be an inspiration, not a hindrance in all of the progress that you have made. Considering you are not only a PWS but an SLP as well I like your approach to trying to achieve the best version of yourself rather than accepting the stutter; that is a unique viewpoint that I would not expect from an SLP. Your insight to the fine line that you walk as an SLP and a PWS poses the question of my mind about how you effectively get your viewpoints across to your clients whom stutter without pushing your own experience completely on them. Thank you for all of your knowledge about this achievement that you have made!
    -Becca

    • Hi Becca, Yes, it is essential that SLPs genuinely view the potential of the the person they are serving as positive. The clinician’s attitude is one of the predictors of treatment outcome. And it is essential that all SLPs, not only those who stutter, be aware of, and thereby in control of, their own personal attitudes and bias. The point is that we must see through the eyes of our clients and their families in order to experience and to enter their world. You will see that doing so is a joy and a privilege, one I have treasured for 38 years. I am glad you are pursuing CSD. We need new ranks to enter this amazing profession. You will see. Kind regards, David

  16. Hello Dr. Shapiro,
    Thank you for opening up and sharing your walk across the line.
    It’s interesting how being a PWS parallels with being a member of the deaf community. Some embrace it, while some do what they can to assimilate to the norm, or even cure it. As PWS may feel that fluent speakers are unable to truly grasp what stuttering is, a member of the deaf community may feel the same towards hearing people. I think this can touch upon many walks of life in understanding the human experience. Again, thank you for your meaningful perspective on the life of an SLP who stutters.
    Tammi ‘Swiss’ K.

    • Hi Tammi, When I wrote the paper, I too thought about the parallels between being a PWS and a person with deafness. The point is that all of us walk a line. We have both choices and challenges. Both present remarkable opportunities that enable us to grow and to learn every day, as we dialogue and interact with others while listening to our own heart as well. Thank you for sharing your insight. Kind regards, David

  17. Dear David,
    Thank you so much for sharing your experiences as a PWS and a SLP. Your paper gave me a lot of things to think about. You shared that one of your friends who stutters has a negative attitude towards SLPS because of past experiences. What would you recommend to SLPs to help clients like this change their perspectives of them? You also explained in the section ”Penalty for Communication/Fluency Freedom” about how you were told you would never be asked to give a keynote address because you were too fluent. Do things like that happen to you often? Your section “Misinformation” made me cringe. I could never imagine one of my professors saying something like that. It’s sad that people like that are educating future clinicians. That sends a terrible message to students, especially ones who do not know much about PWS. Thanks again for sharing your journey. It was a great read.
    – Courtney Lennon

    • Hi Courtney, Thanks for your careful read and your insightful quesitons. Unfortunately, I have seen too often PWS hold negative perceptions of SLPs from previous experiences. I don’t doubt the validity of their perections, however. People believe what they experience for themselvews. You probably have seen in my replies above that I recommend SLPs therefore help create for PWS experiences to experiernce success. Nothing motivates more than success and success begets success. I should add that nothing changes negative perceptions more than experiences of success. About your second question, thankfully I don’t often experience rejection based upon my fluency. I do believe that we need to encourage each to achieve all s/he is capaple of and to celebrate individual victories. All of this said, let me add that you are entering a remarkanble career. We need new, fresh minds and passion in CSD. I cannot think of a more rewarding career than what I have experienced for 38 years. As you prepare for your coursework and for service of others, prepare and serve as if there is no tomorrow. PWS, their families, and many others are counting on you. Kind regards, David

  18. Hi David,

    Thank you for sharing your experiences with the community as a PWS and as an SLP. I was intrigued by your post mainly because of the negative experiences you shared coming from PWS and your profession. I find it admirable that you worked so hard to become an SLP while also being a PWS; I think you show how welcoming and diverse this profession can be and the amazing things it can do for PWS as well as for people who do not stutter. How do you typically handle the negative comments from other PWS about your decision to become an SLP? Even though I do not stutter and have limited information regarding the stuttering community, I would think that other PWS would be encouraging and proud of you for choosing a profession that is almost “taboo” for you; especially when you have proved yourself to be a successful SLP while advocating for this population.
    Also, I appreciated your section about impact of attitudes: “how can clinicians gain a more positive view toward working with PWS and their potential for improvement?” I personally agree with you on this thought because I find myself being a future clinician who is still so unsure about stuttering and would appreciate more knowledge regarding treatment and improvement, one class in undergrad and one class in grad school simply is not enough when stuttering is a fairly common communication disorder.
    But overall, I found your post to be insightful and an exceptional example of the topic of stuttering from several different perspectives. Thank you again for the post.

    Danielle LoCascio

    • Hi Danielle, Thanks for reading the paper. I wish I could say that I only entered the profession of CSD in order to help others. Indeed this is true. However, if truth be told, I entered CSD in order to find a way to communicate. Indeed I had to find my own way. Many years ago, I swore an oath (to myself and to my dog) that if I could find a way to talk, I would do all I could to be of help to others so they could find their way. I’ve been holding to that promise for a long time. About your question, I don’t tend to receive negative comments from PWS/clients about becoming an SLP. Rather, PWS generally appreciate that I have a sense for or an understanding of the territory. They say that an walking the talk. Indeed one undergraduate and/or one graduate course couldn’t possibly be enough to achieve clinical competence. That is why you have your whole career. The process of professional preparation gets you started. It’s like earning a driver’s license. Much of your learning must come “from this day forward” and from professional experience. My advice is to remain positive, knowing that you can make and are making a meaningful difference in the lives of others and, as a consequence, are learning and growing every day. That makes for an exciting, rewarding career. Good luck. David

  19. Dear David,

    Thank you very much for sharing your experiences. I am a student SLT and found your unique insight very interesting. Your message about clinicians needing to believe that their client can make progress has inspired me to ensure that if I ever have a client with a Stammer, that I have confidence in both myself to help them, and their own abilities to improve their fluency. I also did not know about pesudo-stammering, and found this an interesting concept.

    Thank you again,

    Ashleigh

    • Hi Ashleigh (what a great spelling), Thanks for your interest in my paper. Indeed, genuinely believing in the positive potential of our clients/families is of utmost importance. Many of us facing a challenge reflect on the people who have believed in us and/or enabled us to believe in ourselves. That influence is priceless and leads to our own successes. The same is true among PWS. You can be that one positive influence, helping someone achieve that which had seemed unimaginable. And both confidence and competence – beyond academic and clinical professional preparation – comes from clinical experience and success. Actually, pseudostuttering is not a new concept. Van Riper and others spoke of it many years ago. Feel free to contact me by email for some related references. You’re about to enter one of the most rewarding careers imagainable. Hang in there and do your BEST. PWS, their families, and many others are counting on you. David

  20. Dear David,

    Thank you very much for sharing your insight and knowledge as you walk the line between SLP and PWS. I am a student SLT (Birmingham, UK) in my final year and your challenging encounters and the questions you posed here have given me much food for thought. Particularly now as we are focusing on devising suitably-targeted management plans for PWS. Your points on misinformation being widespread and needing to genuinely believe a PWS can make progress are definitely ones I will bear in mind as I step into the therapuetic role. I also found other concepts, ie, questioning what is ‘being oneself’ and divergent truths that are held, really fascinating. There’s so much to reflect on in your paper.

    Thank you again,

    Nicola Davies

    • Hi Nicola, Thanks for your interest in my paper and for contacting me. I have so many good friends and colleagues from the UK, all of whom are committed to understanding stuttering and helping PWS. You’re about to enter one of the most exciting professions imaginable. There is room and need for all of us to make inroads and meaningful contributions. Continue to do your best work. PWS, their families, and many others are counting on you. If I might be of support in any way, don’t hesitate to contact me offline. Kind regards, David

  21. Dr. Shapiro,

    I appreciate you sharing your honest and unique experience of being both a PWS and an SLP. As a first-year SLP graduate student, I found your perspective to be particularly thought-provoking. When I initially clicked on your article, I thought to myself how remarkable and advantageous it must be to “walk the line,” without considering the possible challenges you might face. I cannot imagine how it must have felt to be penalized for having more fluent speech and to be consequently denied the opportunity to provide a keynote address at a local conference for PWS. You should be welcomed with open arms, as living proof that improvement in stuttering is possible. Additionally, your observation of misinformed and negative SLPs is disturbing. It is not only a Speech-Language Pathologist’s responsibility to provide the best quality of therapeutic services, but to also support the PWS with continuous encouragement, motivation, and optimism.

    Thank you,
    Annelise

    • Annelise, What you wrote makes a lot of sense – perhaps even more than you might realize now. We all experience challenges, personally and professionally. How we approach and address those challenges reflects the choices we make and perhaps how we view the world. Indeed it is our shared responsibility to be the source of encouragement, motivation, and optimism – to ourselves and to others. Thank you for sharing your insightful observations. We need people like you with fresh ideas, passion, and positive energy to enter into the ranks of CSD. Continue to do your BEST. One’s own example often is the best form of instruction. “Do as I do” is far more persuasive than “do as I say.” Keep up the good work. Good luck.
      David

  22. Dr. Shapiro,

    As a graduate student and an aspiring SLP, I am thrilled that there are people in your unique circumstances that can help “bridge the communication gap” between PWS and SLPs. It’s fantastic that you can share valuable insight from both perspectives. I wholeheartedly agree that talks need to be WITH one another and not ABOUT each other. I am curious to know what you think about the myriad of fluency shaping therapy techniques that SLPs are taught (e.g. easy onset, slow speech, voluntary stuttering etc.) because I have heard that at times, PWS severely dislike one of more of these techniques and subsequently dislike therapy because of it. I think it is difficult to find that balance where the client is motivated and trusts the clinician, and the clinician is well-equipped and properly informed to truly make progress. However, I think that negative perception/attitude and misinformation from both parties is slowly declining (at least I hope so!). Thank you for sharing your unique story and shedding light on this situation. There is much in your story that both PWS and SLPs could take away from it.

    Max D.

    • Hi Max, Thanks for your interest in my paper. I think you might be asking a few related questions. First, about fluency shaping in general – I too have some concerns when I hear about the occasional overuse or misuse of fluency shaping approaches (i.e., without following the inclusion and exclusion criteria). Note that there are clear criteria for use of fluency shaping, stuttering modification, and combined approaches (see my book, 2nd ed., 2011, chapter 7). But about any particular procedure within an approach (easy onset, voluntary stuttering, etc.), I would want to know more about why a PWS doesn’t like a procedure. Typically when a PWS experiences success from a procedure, satisfaction and motivation follow. If a client is not experiencing success, that may be the bigger question to address. And I find that facilitating a client’s motivation within a trusting relationship to be one of the biggest joys of the profession – now after 38 years. I’m not sure I have addressed your questions but would be glad to interact further if not. Just know that you are facing one of the most exciting careers possible. Good luck. David

  23. Thank you very much for sharing your insights about being SLP and also a PWS. Definitely, by personally experiencing severe stuttering and knowing the moments of trying to prove yourself while often facing people that do not have the time or capacity to understand what PWS may have to go through, you have a lot to offer to your clients and others that want to know about the condition. “I Walk the Line” is a title that does reflect your personal experience with the disorder.
    I also found interesting that you mentioned a possibility of personal bias towards your clients and their capacity to face the challenge of becoming fluent speakers. Since you personally experienced being a PWS, I would say it is possible that you may sometimes unintentionally look at your clients thorough your achievements, strong will and the work you put into becoming a fluent speaker.
    My curiosity is, can you recognize when such moments come and how do you control them? or this is just something that you may time to time think about but it never becomes an issue.
    As a SLP in progress I know there is a lot to learn and a lot to put together to face the future challenge and the process has just barely started.
    Izabela A.

    • Izabela, You’re asking a good question, i.e., how to prevent personal bias. It is unavoidable that we see the world and everything in it through our own eyes and the filters of our past experiences. Nevertheless, I do my best, to the extent humanly possible, to see the world as the person I am committed to understand and to serve sees it, for the time I am with that person. I think doing this is part of the skill set of becoming a specialized or master clinician. That said, I confess that I do understand the nature of personal challenge and, as a result, may interpret the potential of others with both a positive if not tough spirit. There are times when I work with a PWS, a student, or others who, experiencing frustration when facing a challenge, are tempted to give less than their full effort or to give up. I share with them that there is a difference between interest and commitment. I tell them that eating a breakfast of bacon and eggs is clear reminder – the chicken was interested, the pig was committed. Seriously, I have said that “won’t” is in your court and is your decision. “Can’t”? We’ll see about that together. Indeed there is a lot to learn. That is why you have a whole career. I am still learning every day from every client and every family. This field of CSD needs you. Good luck. David

  24. Dr. Shapiro,

    Thank you for sharing your experiences and giving us insight into the unique perspective of being a PWS and an SLP. Your experience is truly amazing and inspirational. As a graduate SLP student at Illinois State University, hearing your perspective as well as other PWS is always thought-provoking and valuable. Although I do not stutter, I have challenged myself and have had many pseudostuttering experiences. I believe pseudostuttering may be a good start for me to see through the eyes of the person I am motivated to help. Additionally, I was particularly struck by your statement “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.” It surprises me that individuals are still unwilling to encourage each person to work toward their own personal best while respecting that of others.

    I can imagine that your clients feel a huge sense of ease knowing that the clinician across the table has personal experience with a communication disorder, instead of just reciting research and saying they understand. I can imagine that this unique perspective, as well as the empathy you are able to convey to your clients allows for more individualized and successful therapy. Thank you for sharing your story.

    Kelsey

    • Kelsey, I am glad that you found meaning in the story I shared. As you pursue your professional training and career, I know you will aspire to the clinical traits you descibed in your post. As you seek to understand the territory of stuttering, remember that PWS and their families are the experts of their own experiences. Learn from them. Ask them to help you understand what stuttering is and how it has impacted them. Too often, I hear from PWS that they have never been asked that before. Why would that be? Every single day is an opportunity to learn and to grow with and from the people we serve. It is up to us to make that happen. You will love this profession. I still do after many years. Good luck. David

  25. Dr. Shapiro,
    Thank you for sharing your experiences as a PWS and an SLP. I am currently in grad school for speech-language pathology and found this paper very insightful. In particular, the section about the impact of attitudes got me thinking about why some SLPs feel more weary and less competent in working with PWS as opposed to people with other communication disorders. If we take a step back and think about the times in life where we have experienced personal growth, there is probably at least one, if not a handful of occurrences that involved dealing with a difficult situation, facing a challenging or unfamiliar circumstance, or making multiple attempts before getting something right. Taking on and overcoming such challenges is what learning and growing as professionals (and individuals) is all about! Perhaps the next time an SLP finds himself or herself with a negative outlook on their new client being a PWS, he or she should take a minute to remember the difference they can make in that person’s life just by being open and ready to take on the ups and downs of the journey together.

    Thanks again for sharing!

    Judy B

    • Judy, Yes, An SLP’s genuinely positive attitude toward the client’s potential is absolutely essential. Without doubt, if an SLP is experiencing negative thoughts or feelings about working with a PWS (or a person with any other communication disorder), that should be his/her first area of concern that should be addressed. About facing challenges, take a look at (i.e., google) Steve Jobs, 2005, Commencement Address, Stanford University. You’ll enjoy it. Notwithstanding the challenges, you’re entering one of the most rewarding professions ever. Good luck. DAS

  26. Dr. Shapiro,

    Your paper on walking the line” between a PWS and an SLP was very inspiring. I am not a PWS, but I am an SLP graduate student. I want to thank you for sharing your experiences. While reading, I noticed a trend that many PWS have not had a pleasant experience with SLPs. I hope that one day when I am working with a PWS that the person has a positive experience. What would be your advice to the SLP students on working with a person who stutters?

    • Hi Holly, Doesn’t it seem unfortunate when PWS (or clinicians) don’t have a positive experience in treatment? Treatment presents an ideal opportunity to work, learn, and grow together. What advice do I have for student clinians to ensure a postive experience? In short, everything I do in treatment is geared toward achieving collaboration, success, and fun. Collaboration is working with rather than for the PWS; success is an important target in every activity with the client and/or family (when the client experiences success, further success and motivation follow), and fun (the genuine human joy of being together and learning from each other). For me, this seems to be a winning combination. Keep asking good questions. Remember that combined with the knowledge and competence you are developing, it is essential that you genuinely believe in the positive potential of your client for change. There is no replacement for that. Good luck. David

  27. Dr. Shapiro,
    I liked how you related Johnny Cash’s song of “Walk the Line” to your personal life and experiences. You speak a lot about different lines you walk in life. In the section where you talk about the line between rewards and frustrations, it is interesting how you talk about being a person who stutters and some rewards (such as Buddy, Billy, Grandfather, Spanish teacher, and Suzan) and frustrations associated with it. I am currently an SLP graduate student and interestingly enough, this past summer I had a fluency client, and she was a person who stutters. She reported that she has never been bullied for her stutter and she feels very lucky to have evaded such negative experiences. She also said that she was rewarded higher grades than she felt she deserved especially in her speech classes because the professors took “pity” on her and gave her extra points that she didn’t feel deserving of. She wanted to be treated fair. The question is… What is fair? Is it fair to treat the child who stutters the same and a child who doesn’t and make the same guidelines and timelines for both? Or is it fair to allow the child who stutters more time and leeway because of their disfluencies? Thank you for for sharing your wonderful insider’s view of a person who stutters. Congratulations on your achievements!

    • Hi Candice, You’re asking a good question – What is fair? I would need to know more about the specific case you mentioned in order to be more pointed in my reply. However, in general, I encourage all of my clients who stutter to pursue and to do all they are capable of. However, in my post just above, I wrote about doing all we can to enable each PWS (and all people) to achieve success. Sometimes in order to achieve success, some modification becomes necesary. For example, is it fair to compare the time it would take to run a 50 yard dash for a person who has two fit legs with one who has a cast? Similarly, is it fair to compare or use the same rating scale for oral reading or a presentation for a person who does not stutter as with a PWS? In my book (chapter 9), I wrote about a number of accomodations that could be made for school-age children who stutter so that they indeed participate while facilitating their individal successes. All of this assumes a dialogue with the PWS and perhaps others (teachers, parents, etc.). I have worked with college students who stutter and who are having a hard time in the public speaking course because of their stuttering. In some cases I have encouraged the PWS to talk with the professor so that there is a shared understanding of the nature of stuttering. In some, we have agreed to have the PWS practice the presentation in the clinic, eventually with the professor present, so that s/he understands what is a victory for the student and all he is doing to achieve it. In some cases, that preparation became a part of the professor’s evaluation of the student. In others, this led up to the the student’s successful presentation in the public speaking course. The point is that each case must be considered individually and that conversation/dialogue combined with understanding and mutual respect must rule. Keep up the good work. Good luck. David

  28. Dr. Shapiro,

    I am glad that I had the opportunity to read your article. It was so interesting to hear your perspective, as a PWS and an SLP. I remember watching a video in undergrad about a particular fluency approach. During the presentation, the SLP made a few references to her stuttering, which I found confusing because I did not realize that she stuttered. Only later in the video did I notice a few disfluencies. I was and continue to be so impressed by her. I think that PWS, overcome their stuttering, and become SLPs are at an advantage as SLPs, although I would not want to have to go through such a struggle. I never realized that there are so many PWS and are SLPs, until I read your article and numerous replies from people like you. I am truly impressed. I feel that people like you can give PWS so much hope. As much as I will try to empathize with my clients, an SLP who stuttered can understand the client’s perspective so much better. You mentioned under “Clinician Suitability” that there is a difference of opinion regarding whether SLPs who are PWS are better or those who never stuttered are more effective. What is your opinion? It seems that you and many others like you have been quite successful. If you feel that you have an advantage as a PWS (as I think you do), do you have any words of wisdom for those of us who are not in your situation but are entering the field of speech-language pathology? I know you gave some advice to other students such as “success begets success,” but I was wondering if you have anything else to tell us students. I am interested in fluency therapy, but I feel slightly discouraged because I have heard it is so difficult and I know that plenty of people do not benefit from stuttering therapy.
    Thank you for sharing your thoughts and experiences.

    Chana Goldberg

    • Hello Chana, Thanks for reading my paper and for sharing your insights and questions. As you said, SLPs who have personal stuttering experience may have an advantage. However, as I expressed in the paper, that advantage is met with a challenge that others who do not stutter may not experience (i.e., controlling for personal bias so as not to impose one’s own experience onto the client). Honestly, I believe the success that an SLP experiences is more a reflection of her commitment to professional preparation and professional development – and her ability to see through the eyes of the person/family she is striving to understand and to serve and to ensure that the objectives and procedures are individually tailored for that one person/family – more than whether or not the SLP has had personal experience stuttering. With or without personal stuttering experience, all SLPs should/must be able to relate to the human condition and to the nature of human challenge and human potential. That, added to clinical knowledge and skills, makes for an effective combination. I am intrigued by your statements at the end of your post. I am wondering why you have heard that fluency therapy is so difficult and that many people who stutter do not experience benefit from treatment. Clearly from my experience, this has not been the case. Engaging in fluency therapy is like breathing. In its focus and at its heart, it becomes timeless and placeless. The opportunity to communicate with another person/family becomes both intimate and an ideal opportunity for shared learning and growth. I wish I could show you what I mean. Would you see if you could take a look at my book (mentioned in the short bio)? In the preface to the first edition (included in the second edition), I described the process as magical. Truly I hope you will discover that magic. It is a joy and a privilege. You will see. That is why you have your entire career ahead of you. Kind regards, DAS

  29. Thank you Dr Shapiro. As a student Speech & Language Therapist I find it helpful to bear in mind that I should talk “with” my clients as opposed to “about” them. Mary

    • Hi Mary, Yes, that is good advice. Professionals and PWS need to be talking with each other for so many different reasons. Last summer (July 2015), professionals and PWS from 32 different countries met at the International Fluency Association’s 8th World Congress on Fluency Disorders in Lisbon, Portugal. Plans are underway to continue this initiative (bringing the stakeholders together) for the 9th World Congress in 2018. You may want to review the work of Dean Williams, who was eloquent in describing how to interact with children who stutter (i.e., talking with them, rather than above, below, beside, or about them). Good luck. David

  30. Thank you Dr. Shapiro.
    This was a really interesting and thought provoking to read. I have found others comments and questions to be insightful to what it is like to be a SLP/PWS. I am currently a graduate student in Speech Language Pathology. In my undergraduate courses one of my fellow classmates and friend mentioned to me that one of our professors told him he would be better staying in research then the clinical aspect of this profession because he stutters. I was so taken aback by this I really didn’t know what to say. Now, reflecting on this I feel terrible that I wasn’t more supportive or engaged in a constructive conversation for change. What suggestions for advocacy do you have when working with individuals in this field who may not be well informed?

    • When I hear such comments made by others, honestly it makes me sad. Such comments reflect misinformation and an effort to put a cap onto someone’s potential. Why do some people feel compelled to do this? Have they lost their youth, their passion, their ability to see dreams and possibility? If you learn nothing else from your graduate education, learn this: Never put a cap on someone’s potential to achieve – including your own. Take a look at my comment above to Izabela. When we see so many exceptions to the rule, we must look back and rethink those rules. Objectively speaking – and in the context of evidence-based practice – wonders, some call them miracles, happen every day. Our job is to see the potential that others may not and to utilize our academic and clinical skills, combined with shared dreaming, to help realize that potential. THAT is at the heart of CCC. Good luck. David

  31. Dr. Shapiro,
    I am a first year grad student in SLP and am currently taking a fluency course. I am also in a placement within an elementary school where one of my clients in second grade stutters. Your story about your friend and client who has distrust for SLPs caught my attention. The client whom I work with told me the other day that he doesn’t anticipate when he will stutter and that he doesn’t even realize he does it. He has a very healthy outlook on life and good self-confidence. Currently we are working on easy onsets through a program purchased by the school. He told me that he can do it just fine in the clinic but he wasn’t interested in using it in real conversations. I don’t want this client to feel like I am trying to make him feel there is something wrong with the way he communicates, nor do I want him to become negatively aware of his stutter to the point that he becomes ashamed or avoids situations. How do I walk the line here? How can I have meaningful sessions with him? Since he says he isn’t aware of his stutter would it be wrong to play a recording of him talking to me spontaneously? He loves to talk to me now and isn’t inhibited. I am afraid if I do that he will be hurt. How can I help this child become an effective communicator if he isn’t aware of his stutter and the impact it may have with his listeners? I would appreciate any advice or direction you can give me. I feel he is getting bored to tears with the strategies for overt stuttering, yet he isn’t aware of his stutter to address covert aspects. I certainly don’t want him to mistrust me.
    Thank you,
    Correne Fabanich

    • Hi Correne, Thanks for reading my paper and for sharing your insights and questions. I am intrigued by the child you described, yet I would need to know more about him to be specific in my reply. Some of your observations seem to contraindicate stuttering (i.e., typically a PWS anticipates where/when he will stutter). Assuming that the child does stutter, the question you raised is important – How to proceed if the child does not see the need to receive fluency treatment. If his emotions are not impacted by the stuttering, he is not trying to hide or conceal stuttering, and he is engaged socially, then a fluency shaping approach, such as you are using, seems appropriate. I wish I knew which program you purchased and are using. I would tend not to share a video of his stuttering with him, for the reasons you shared. Rather, could you focus on identifying characteristics of effective communication, where you review videos of examples of effective communicators? Within that positive context, then you might replay a video of him engaged in conversation when he is exhibiting such positive characteristics. You say he enjoys communication and feels good about himself. Your job is to keep it that way, while helping him to realize his communication potential. How do you walk the line? Consider this. Sometimes we assume that negating the negative results in a positive (i.e., focusing our efforts on eliminating stuttering). However, that is very different than asserting the positive. What does he do that is consistent with effective communication? Can you identify the positive aspects of his communication and fluency? For example, in the speech of most PWS, most of the words spoken are fluent. When someone demonstrates 15% disfluency, this also means that 85 out of 100 words on average are spoken fluently (85% fluency). Can you focus on what he is doing when he is fluent (i.e., heighten his awareness of what is already doing that is facilitative of fluency – gentle onset, even rate, natural inflection) and help him to do more often what he is already doing? That can be a much more positive approach (asserting the positive) than eliminating the stuttering (negating the negative). Both are intended to achieve the same result. However, the former focuses on rehabilitation or correcting something that is being done wrong; the latter focuses on empowerment and validation. You see in my earlier posts that I design treatment around three variables: collaboration, success, and fun. Such a context results in positive change and continued motivation. Can you borrow (maybe inter-library loan) a copy of my book (noted in the bio)? Look at Chapter 9. There I have written at length a reply to your excellent question. Good luck. DAS

  32. Thank you for sharing your experiences as both a PWS and clinician. I was shocked by some of the citations from the literature, and particularly that it had been published in the relatively recent past. I am a few weeks into an SLP degree, and so far a lot of the emphasis has been on a person-centred and collaborative approach, so hopefully the future will be brighter. It just goes to show how important your message and those of the other contributors are. Thank you again.

    • Hi Tracy, Thanks for your interest in my paper. In treatment as in life, we have many choices to make. Creating a context for client/family-based intervention is a good choice. In such a context, remember to focus on a “build up” approach (identifying the positive and successful aspects of communication and using that as a point of departure to approach increasing degrees of challenge in small steps to ensure success) rather than one that “breaks down” (e.g., identifying communication errors and seeking to eliminate them). You are welcome and good luck. David

  33. Hi David,

    I very much enjoyed reading your thought-provoking paper.

    I was interested to learn of your encounter with the SLP who intimated that she would NEVER ask you to provide a keynote address because your “speech was too fluent”.

    Firstly, let me say that I fully understand that it can be useful for PWS witness someone with a visible stutter speaking before an audience. I know many PWS who are effective communicators, yet display distinct dysfluencies.

    However, on the other side of the coin, I feel it is also important for PWS to be made aware (and provided with evidence) that it is possible for PWS to attain (as you describe it) “communication freedom”.

    For most of my life, I held the limiting belief that I could never successfully engage in public speaking. This mental blueprint restricted me from undertaking such activities.

    On April 1, 2000 (Yes, the date is indelibly imprinted upon my memory :-)), I had a chance meeting with a PWS who had successfully embraced greater fluency and public speaking. I listened in awe as he described how he had won public speaking trophies, in competition with “fluent” speakers. That fortuitous encounter sowed the seeds of an empowering belief that would, effectively, change the course of my life. I found myself wondering if maybe (just maybe) I might be able to emulate his actions.

    Inspired by his example, I plucked up the courage to join three public speaking clubs (similar to Toastmasters international). Within a relatively short period of time, I had demonstrated to myself that such a role did NOT (after all) lie outside my compass.

    During the past 15 years, I have been actively involved as a public speaker – fulfilling many hundreds of engagements on three different continents. Public speaking has now become an exciting and integral part of my existence. It is relevant to mention that 99% of my audiences comprise persons who DO NOT stutter.

    Had I not heard that PWS speak about his public speaking successes, I would never have been motivated to embark upon a more expansive lifestyle. I derive immense satisfaction from now performing widely on life’s stage.

    David, it was a pleasure to see you in Atlanta, in 2012, where I was invited to present at the annual ASHA Convention. It was disappointing that our respective schedules did not allow us to spend longer in each other’s company.

    Hopefully, our paths will cross again in the future.

    Incidentally, I wrote (in greater depth) about my life-changing experience in a previous ISAD Online paper:

    Sporting Milestone Helps To Set My Stutter On Right Track

    https://www.mnsu.edu/comdis/isad15/papers/turning15/badmington15.html

    Kindest regards

    Alan

    • Hi Alan, I too remember with fondness our first meeting in Australia and our visits since. In each one, which I cherish, I reflect on how remarkably nourishing you are, both by your manner (what you say and how you share yourself with others) and by your medium (your exemplary communication skills). You have achieved so much. At least as important, you are encouraging to others and see potential where others may not. That is a gift you give freely. Thank you for sharing the experience that “sowed the seeds of an empowering belief that would, effectively, change the course of my life.” This, I hope, is the influence of SLPs on PWS (and vice versa) and, perhaps one day, the influence all people on each other. I just returned from an international stuttering research conference and am now reading the many wonderful papers. I look forward to reading yours. I too hope our paths will cross again soon. Warm wishes. David

  34. Dr. Shapiro,

    My name is Hailey Warzonek. I am a second year graduate student at the University of Minnesota Duluth. First of all, I enjoyed your reference to Johnny Cash’s hit “Walk the Line” because I am an avid fan and it truly encompasses the journeys we all take in life. Your article was a great read and I found your explanations of the different roles you play individually and collectively to be so informative and informational. I enjoyed reading your views on speech therapy and how they are different from other PWS. How old were you when you began therapy, and had you accepted your stutter at this point in time? I ask because after attending a stutter group, a member expressed his disapproval to attend therapy for a long period of time. I believe it is critically important for speech-language pathologists to acknowledge the PWS perspectives concerning their stutter. I am also wondering what is your biggest challenge is, if any, when providing services to people who do not stutter?

    • Hi Hailey, Thanks for your interest in my paper and for your questions. While I don’t remember the exact age when I began treatment, I know I was old enough to read. The reason I remember that is each treatment began with directions for me to read orally (i.e., one of the major behavioral programs establishes fluency in a series of contexts that are interpreted to be of increasing degree of challenge – reading, then monologue, then conversation). Unfortunately I could not read orally. Although reading for some people is easier than the other contexts, for me this was the hardest. Therefore I experienced fluency failure at each initiation. Indeed I have since learned, as a PWS and an SLP, that there are many different approaches designed to create collaboration, success, and fun. You’re asking a good question about what might be my biggest challenge. I enjoy working as an SLP so much that the challenge might be to slow down the passage of one’s career. It simply goes too fast. People say that time passes quickly when you’re having fun. Surely this is the case. As I wrote, 24 hours per day simply isn’t enough to do all I might wish to do – as a clinician, as a teacher, and as a researcher. This is a good “problem” to have. I wish upon you the very same problem. This field needs you, Hailey. My advice: Continue to prepare and renew yourself professionally and serve each PWS and family (and all clients) as if there is no tomorrow. You will love this discipline. Good luck. David

  35. Hello Dr. Shapiro,

    What a unique combination of being a PWS and an SLP too.

    I am taken aback at the penalty for your fluent communication when you presented to SLPs who attended a local self-help conference of PWS. The conference organizer thanked you for contributing to the success of the conference, and then added that she would never ask you to provide a keynote address because other PWS would not relate to you! I would have thought she wants you to speak to motivate other PWS that they would one day be able speak fluently.

    As a first year graduate student pursuing SLP, I am interested in learning more about what techniques worked for you.

    Thank you for sharing your experiences and opinions.I learned a great deal from your presentation.

    Kind Regards,

    Faiza

    • Hello Faiza, Thanks for your interest in my paper. I am interpreting that you are asking about what techniques worked for me as a PWS rather than as an SLP. My story might be a bit atypical. In my post to Hailey just above, I shared that the behavioral approach was not appropriate for me. Typically a fluency shaping/behavioral approach is indicated when the person stutters openly, does not avoid speaking, perceives no personal penalty from stuttering, and feels positively about himself as a communicator. Clearly this was not my profile. I needed to address not only the stuttering behavior, but the thoughts and feelings related to me as a person and as a communicator. So how did I achieve my fluency control/communication freedom? It’s kind of a long story, but it involved Buddy, Billy, my grandfather, and a best friend for life. You might want to take a look at one or more presentations of that story – “Being Real”: https://www.mnsu.edu/comdis/isad10/papers/messages10/shapiro10.html; “A Way Through the Forest: One Boy’s Story with a Happy Ending”: https://www.mnsu.edu/comdis/kuster/PWSspeak/shapiro.html. You will find that the field of CSD is absolutely rewarding with so many opportunities to learn with and from the people we are committed to understand and to serve. Good luck. David

  36. Thank you so much for your honest and well-written article, David! I always enjoy reading your material. One reason out of many, is because you dare to be authentic and real. Let us continue building bridges between SLPs and PWS, in all parts of the world. I believe by sharing perspectives, we all become more insightful and wise, even though we are a SLP or a PWS – or both.
    Best wishes,
    Hilda

    • Hi Hilda, Thank you, as always, for your support and encouragement. I treasure our friendship and our colleagueship. You are the portrait of authenticity and wisdom. You will notice in my post just above to Faiza that I shared my story, “Being Real.” Communication, real communication, is about sharing perspectives, considering alternative points of view, and being willing to listen, to hear, and to learn and to grow with and from each other – every single day. Let’s keep building bridges within and across countries. Therein lies hope and possibility for all. Warm regards, David

  37. David,
    I am a graduate student pursuing an M.A. in communicative disorders. I want to thank you for sharing your insightful article. I found it intriguing to read about your personal experiences with other PWS: a) How you’ve experienced rancor and incomplete acceptance form your friend who is also a PWS, b) how you have been penalized by peers for being, in their opinions, “too fluent” to be relatable by other PWS, and c) how you’ve experienced backlash from PWS whom love their stuttering and feel it unnecessary to act upon their stuttering, or accept themselves as one continually striving to be one’s own best self. You’re experiences further reinforce the importance of treating each PWS as an individual, and to talk with them rather than about them. To me this statement emphasized the importance of taking the time to talk with the PWS, to gain insight into how their stuttering makes them feel and what they would like to take away from therapy, rather than wrongly assuming their stuttering is something they would like to change. Thank you again for sharing your perspective and wisdom.

    Kind regards,
    Avalon Scopellite

    • Hello Avalon (what a beautiful name), Thanks for your interest in my paper. You’ve done a nice job summarizing several of the main points I hoped to get across. You are correct – each person we are committed to understand and to serve is an individual with unique experiences and a unique life story. Let them share their own story. Within that inviting, positive, and comfortable context, we indeed can focus on fluency controls (even rate, gentle onset, natural inflection) or any other objective that is appropriate for that person. You will discover that our profession is remarkably rewarding. Make the most of each day – prepare and serve as if there is no tomorrow. Our own example is the best form of instruction. Good luck. David

  38. Hello Dr. Shapiro,
    I am a current graduate student in a speech pathology program and I found your article very informative and interesting. I enjoyed reading your perspective of being both a PWS and a SLP because you can give real, thought-provoking insight on both experiences. As a student, I am taught to relate to my client and try to understand his/her past. Reading this article was interesting because you may relate to your clients on a deeper level. You can target the negative perceptions of stuttering that people may have because you have accomplished so much in both personal and professional settings. I appreciate the metaphor of “the line” that we all walk because it recognizes the unique differences that all people, specifically PWS, present with. You emphasize the idea that we have to regard each PWS as an individual and find strategies that will benefit that specific person. Reading about your life makes me realize that our “lines” are not concrete, they are ever-changing and may even be intersecting, depending on the current phase of life each one of us are in. How do you overcome the initial hesitation or mistrust that a client may have of you because of your history of stuttering, regardless whether he/she is a PWS or not? Thank you for your time.

    • Hello Toni Rose, Thanks for reading the paper and for sharing your questions. You are correct that, as an SLP and PWS, I comfortably target the negative perceptions that PWS may have as a result of previous experience. I do this by constructing opportunities that enable the PWS and family to experience success. There is no greater motivator or antidote to negative past experience and hesitation/mistrust than the experience of success. I am a little puzzled, however, by the premise in your question (i.e., that the client’s hesitation/mistrust is a result of my history of stuttering). In contrast, frequently I find that when PWS learn that I am an SLP and PWS, they feel relieved. They tell me that they appreciate that I have been there and am familiar with the territory of stuttering. Although our experiences always are unique, we start with a commonality, which we can discuss and to which we can relate. You’ve got a great career ahead of you. Enjoy every minute and do all you can to become as familiar with the territory of stuttering as you possibly can. Keep these good questions coming; that’s a good start. David

  39. Dr. Shapiro,
    Thank you so much for sharing your knowledge,thoughts and experiences. I am very happy to see the number of PWS who have gone on to become Speech and Language Pathologists. I think it is so important to bring that experience to the table and the inside knowledge possessed to academia. I am empowered by your thoughts and presentation. Many of do have a line we walk, and finding that balance is often frustrating and sometimes disheartening. I appreciate that you continue to bring your compassion for others and passion for knowledge and contribution to the profession. I often think that the compassion for others and passion for helping others is lost in the paper work and productivity. It is not surprising to me that people are guarded when confronted with an SLP. I have seen the process of this happening and as a Graduate Clinician, hope to strive on, through those moments possessing the compassion, passion and knowledge I need to be a good a clinician.
    Thank you so much for sharing!
    Kendra S
    SLP Graduate student

    • Hi Kendra, Thanks for reading the paper and for your kind words. I have always interpreted compassion as one of the Cs (in ASHA CCC); passion is an indication both of youth (which does not have chronological boundaries) and of life. Indeed clients often are guarded initially when they meet an SLP. When we learn their stories, their hesitation/caution typically is understandable. You will see in my reply to Toni Rose just above that I discussed the importance of SLPs constructing opportunities for PWS and families to experience success; that is the best antidote to negative previous experiences and the best facilitator to achieving motivation and continued success. You are fortunate to be a graduate student in SLP; you will soon be a servant of others. It is a big and wonderful responsibility. Good luck. David

  40. Hello Dr. Shapiro,

    Thank you for sharing your thoughts on being a PWS and an SLP. I found it particularly interesting because I’m also a PWS and have recently started SLT training here in the UK.
    I found your comments about potential bias and how this might impact your practice really interesting. Even at this early stage of training I’ve experienced a situation, listening to a PWS recounting their personal experience of stammering, where I’ve felt the urge to jump in and express my own experiences and therefore I was very aware of the need to not interpret others experiences through the lens of my own. How do you manage this? How do you go about determining when, for example, your personal experience might be useful to a client and when it might be impacting your decision-making unhelpfully?
    Thank you again for the fascinating paper and I look forward to reading more of your ISAD contributions soon!

    Very best wishes,
    Ben

    • Hi Ben, Thanks for reading the paper and for your kind thoughts. You’ve asked two good questions. Indeed I do occasionally share a personal experience for instructional purposes and to which my client can relate. In fact, I did this just today. I recently returned from an international research conference on stuttering, at which I introduced a number of speakers. To my surprise, I experienced a bilabial block without anticipation, which challenged my ability to implement the fluency controls. I was more caught off guard by the experience than upset. When I mentioned it in the group treatment session today, several of the participants expressed that they appreciated my honesty and acknowledgment of the fact that I too still monitor my speech occasionally. This led to a good discussion about long term maintenance of fluency. Your caution, however, is well taken. In order to remain objective, I collect and regularly interpret objective data, both for each session and pre/post, that reflect change in the client’s fluency behaviors and communication-related thoughts and feelings (in addition to changes in pragmatic language, community engagement, quality of life, and more). SLPs need to remember that the client’s experience and the client’s story are primary. Years ago, Van Riper instructed SLPs to become aware of their own personal needs and bias so as to be able to control for them before ever meeting with a client. That way the SLP is sure to serve the client’s needs. You’re facing a remarkably rewarding career. And you have so many excellent stuttering specialists/mentors in the UK. Good luck. David

  41. Dr. Shapiro,
    I really enjoyed reading about the unique perspective you have in regards to being a PWS and an SLP. Your thoughts and personal experiences were very insightful and thought provoking. I was surprised a conference organizer felt your fluency made you ineligible to provide a keynote address. Fluency at the surface doesn’t mean an individual is no longer relatable to other PWS. In my graduate fluency course, we are taught there are many contributing emotional and environmental factors which impact a person’s fluency, and the level of fluency for a PWS is only the tip of the iceberg. Just beneath the surface, there is a deep ocean of personal experience that makes you completely relatable to other PWS.

    I also want to commend you on having the courage to join this field as a PWS. In my undergraduate program, a friend of mine who stutters was told she should consider a different field of study, but her stutter won’t stop her from pursuing a dream to becoming a SLP. If necessary, she will apply year after year until she gets accepted into a Master’s program. I will share your inspirational story with her, and it will give her hope.
    Sammy

    • Sammy, Thanks for your insights and for your positive comments. I like the way you interpreted and applied Sheehan’s iceberg analogy; I wish I had related this as you did when I was confronted by the organizer and when I wrote the paper. Also, I really hate when I hear stories of PWS or people with other challenges being discouraged from entering CSD – or any other field. I personally know this experience too well. Please explain to your friend that although there are always obstacles in life, no one can squelch someone’ dream. Tell her to keep her dream in sight and to work even harder toward it. She may find support from the advocacy/self-help community. There is also legislation in place to prevent discrimination, if that is occurring. I have written words of encouragement that she might consider (google my name and A Way Through the Forest, Being Real, Just the Way You Are, and Portraits of Success, among others). I would be happy to talk with your friend directly if she wished to contact me. Know that if it weren’t for pioneers who had a communication disorder of their own, mostly PWS, we wouldn’t have a discipline/profession of CSD. We need you and all qualified candidates in this field. Good luck. DAS

  42. Hi Dr. Shapiro,
    I enjoyed reading your thoughts on being a PWS and an SLP. I am a graduate student and am enrolled in a fluency class. One thought that really stood out to me, is the idea that PWS have ill feelings or a lack of trust toward SLPs. This thought makes me concerned for my future roll as a clinician working with PWS. Only recently in my class did I encounter the idea that PWS may have negative feelings toward their SLP and therapy experience. Reading your article confirmed that notion. I hope that in my practice I am able to make a difference when working with this population of clients without causing the negative side effects. One suggestion in my class was to focus on the covert aspects along with the overt aspects of stuttering. Another suggestion was to gain rapport with the client and focuse on their overall communication abilities. Do you have any other suggestions that may help me in my determination to become an effective SLP?
    Thanks,
    Dorene Tanner

    • Hi Dorene, It sounds like you’re getting some good instruction from your fluency course. I do have some other ideas for combating the reluctance PWS may experience when beginning treatment, for gaining rapport, etc. In previous posts, I described treatment with three distinct foci: collaboration (working with rather than for each PWS/family), success (creating opportunities for the PWS/family to experience success), and fun (sincerely enjoying the opportunity to be with PWS/families and to learn and to grow together). I believe this is the best answer to your question. Also, I explained how success is the best antidote for negative previous experience and the best facilitator of motivation and continued success. How to become an effective clinician? Wow! That is a big question. You see also that I have urged graduate clinicians to do all they can to come to understand what it means to have a communication disorder, to get as close as they can to the territory of stuttering, to prepare professionally and to serve as if there is no tomorrow, and to commit to being a servant of others as a calling, not a job. Good luck. DAS

  43. Hello David,

    I am currently a second year graduate student studying SLP at Idaho State University. I enjoyed reading your insightful paper regarding your experiences walking the line as a PWS and a SLP. I admire your perseverance in the pursuit of becoming a SLP after having the negative experience which you did in your oral examination. I think that ticking clock would have caused me to exhibit difficulties expressing my complete thoughts as well, even as a person who does not stutter. That must have been frustrating! Your experiences with walking the line in your profession have inspired and supported many clients to achieve their goals of becoming the best communicators possible, something to be proud of!! In response to your comment regarding building a bridge between PWS and SLPs, it is my hope that our profession continue to focus on a person centered therapy approach in which our role is one of therapist, confidant, and counselor. I believe this type of approach is beneficial to most PWS.

    Best wishes to you,
    Kari Pascoe

    • Hi Kari, Thanks for your kind words. You certainly have an excellent professor at Idaho State – Dr. Dan Hudock. You’re insights are spot on. As you continue to develop professionally, you may want to look back at your post from time to time to be sure that you are being true to your commitment to building bridges, client-centered approaches, and more. Being that therapist (i.e., from the Greek, therapeuein, meaning “comrade in a common struggle”), confidant, and counselor is a calling – it is a joy and a privilege that I have enjoyed for nearly 40 years. We need you in this discipline. Do your BEST always. PWS and others are counting on you. DAS

  44. Hi David,

    I really enjoyed reading your post and found it to be really insightful. I was saddened to read about the conference where someone told you that you would not be a keynote speaker again because your stutter was not severe enough for people to relate to. If anything, I think it is important that people who stutter are able to see your success and internalize that it can be possible to control your stutter. I especially think its great that you became an SLP. I’m sure that you bring a level of knowledge that someone who has never stuttered cannot have. You have the personal experience that best allows you to relate to your clients. I was wondering if any of your clients or parents of clients ever had a problem with the fact that you were an SLP who stutters?

    • Hi Vicki, Thanks for your kind words. I’m not sure I agree that a PWS necessarily has a level of knowledge that someone who has never stuttered cannot have or that a PWS is better suited to serve PWS. In the paper, you see that I addressed the benefits and challenges of being a PWS and an SLP. There is an important role to be served by talented SLPs, whether they stutter or not. Have I ever worked with PWS/families who had a problem with the fact that I am a PWS? You’ve got me thinking, but I don’t think so. Anyway, keep working hard. Do your BEST. The field of CSD needs good, competent SLPs. Good luck. DAS

  45. Bridges! Yes what a fantastic bridge you have built. I don’t think you said where/what ages you work with as an SLP. I think you would connect great with kids and parents in providing hope. I think stuttering can be a gift in such a profession, I am glad you are using it as a strength and an asset. Wonderful.

    • Hi Maria, You’re correct. I don’t think I indicated the ages of the PWS I serve. I work w/ PWS across the lifespan – from the preschool years up to and including senior adults. And yes, in hindsight, stuttering can be a gift (as expressed so well by Alan Rabinowitz). Regarding challenges that can become gifts, you might want to take a look at (google) Steve Jobs’ 2005 commencement address at Stanford University. Good luck. DAS

  46. David,

    I really enjoyed reading your paper.
    In regard to the misinformation section, how would you (or did you) respond to comments such as, “My client who stutters would do so much better if they just tried harder,” and “Don’t work with PWS, work with people who can improve.”? As a future SLP, I would value your input about how to handle such situations.

    Thank you for sharing your unique perspectives.

    • Hi Brittany, The comments you recalled indeed reflect misinformation. Clearly commitment is an essential ingredient of the treatment process. Nevertheless, my intention as an SLP is to enable each PWS to achieve all s/he is capable of. That cannot be predetermined or rated in comparison to another person’s achievement. And it is well documented that PWS can improve within diverse objectives. Please look just above at my post to Ben regarding the many areas that might be among those identified for improvement including and beyond fluency. Good luck. DAS

  47. Hi David,
    My name is Karen. I’m a first year graduate student attending Edinboro University in Edinboro, PA. I am presently taking a Fluency Course. Your responses to Jaime B. were enlightening. You discussed how you encourage your student clinicians to ask clients what it’s like to stutter and how important it is that they see through the eyes of the person they are committed to serve. I will most definitely keep this excellent advice in mind when providing interventions throughout my career. Thanks so much!

    Karen

    • Hi Karen, I’m glad you found the paper – and particularly the posts – to be useful. Thanks for reading all of it. It is true that our clients/families are our best teachers. Our aim is to do and be all we can to understand the reality of another person and to apply our knowledge and skills to enable another person to achieve his/her dreams. The responsibility is huge, but that is what we are committing to when we become an SLP. Years ago, Walle (1974) distinguished between qualifications and suitability for clinical practice, noting that “it is easier to become a therapist than to be one.” Good luck – for the long haul. This field needs you. DAS

  48. Thank you for sharing your story. It is very inspirational to say the least. I am currently training as an SLP and have a family history surrounding stammering so your words really resonated with me. Thank you once again.

    • Jay, I am glad that you found the story to be useful. Many of us have family histories that include numerous people who stutter. That might serve to give us even greater motivation to do and to be all we can. As I have said numerous times, prepare and serve as if there is no tomorrow. PWS, families, and many others are counting on you. We need you in this profession. Remain committed; remain passionate; remain young and energetic notwithstanding the passage of years. I remember Joel Stark saying to an audience, “I am older than most of you here – and younger than every one of you.” You’re about to enter one of the most challenging and rewarding of careers. Good luck – for the long haul. DAS