A World that Understands Stuttering: Bridging the Gap between SLPs and PWS (Chani Markel)

About the author: Chani Markel is a person who stutters, a school-based speech-language pathologist and certified children’s yoga instructor currently living in Manhattan.  She is very involved with the NYC self-help community and has attended four National Stuttering Association annual conferences. She enjoys combining her passions for yoga, mindfulness and creative writing into speech-language pathology.

My name is Chani. I am a young adult, a daughter, a friend, an Orthodox Jewish woman. I’m a native East Coaster and grew up in New York and New Jersey. Just as essential to my identity is that I am both a speech-language pathologist (SLP) and a person who stutters (PWS).  

I am constantly navigating between two different worlds- the world of an SLP and the world of a PWS. Sometimes, there seems to be an entire universe separating these two worlds. The world of an SLP: treatment techniques, technical jargon relating to speech and language disorders, data collection, assessments and progress monitoring. The world of a PWS: the world of perceived imperfect speech, struggle, inner turmoil, as well as the world of courage, vulnerability and authentic communication. Straddling between two very different worlds is certainly a unique position to be in, but it can also be very challenging.

I am, first and foremost, a PWS. I lived in this world long before I even considered becoming an SLP. From age six until the present, I have stuttered. Sometimes I repeat sounds or syllables in words, sometimes I have hesitations and blocks. I spent most of my childhood and adolescence trying to conceal my stuttering. For years, I lived with anxiety and fear about letting others see and hear my stuttering. After first receiving speech therapy as a teenager and becoming active in the stuttering community in my early 20s, I now speak openly about stuttering to my friends and family. I am no longer ashamed of my stuttering and with all that I accomplished in my personal and professional life, I can even say that I am proud to be a PWS.

Speech therapy during my senior year in high school was the catalyst that not only changed my perception of my own stuttering, but changed my life. With the combination of speech management techniques, desensitization, avoidance reduction and cognitive behavioral therapy, I learned that stuttering does not always have to feel like an out of control wild animal that could not be tamed. Stuttering did not have to be the bossy friend that I had to listen to for fear of being rejected. For the first time in years, I felt like anything could be possible. I entered speaking situations that were challenging for me and faced those fears head-on. Communication, even in the presence of stuttering, became joyful. I was told for the first time that it is okay to stutter. This message felt revolutionary, especially coming from a mindset of covert stuttering. And at eighteen-years-old, I decided that this work was too significant, too valuable and too life-changing for me to keep to myself, and I decided to become an SLP.

Usually, I feel pretty comfortable in both my worlds. I went through the rigors of grad school coursework in a competitive SLP master’s program and sailed through clinical externships. I currently balance a large caseload of elementary school students in two fast-paced public schools in NYC. I have presented at district-wide professional development workshops and lead Individualized Education Program (IEP) meetings for staff at my school. Yet I am also very active in the world of PWS. For the past few years, I have attended annual stuttering conferences and monthly support groups, been involved in stuttering advocacy in the NYC stuttering community and even formed a creative writing group for PWS to share their writing about stuttering.

To an outsider, my personal and professional life may seem like a stuttering utopia of sorts. But at times, I feel like an imposter in both worlds. I break the perceived mold of an SLP having perfect speech. Like any individual who stutters, my stuttering is highly variable. Some days I stutter more frequently and noticeably. I am not always fluent like many SLPS and to this day, communication can be very challenging. I am the only SLP who stutters in my school district and the only PWS on the staff in the elementary schools where I work. I found that even among the SLP community, there are still misconceptions about stuttering. I have been asked by well-meaning SLPs if I am nervous, unsure of what I want to say or shy around new people.

Yet sometimes I feel out of place in stuttering community too. I can be very fluent at times. And during the situations where I do have outward moments of stuttering, I don’t struggle physically or emotionally the way that I used to. Yet, I very much still consider myself to still be a PWS and very much relate to struggles of PWS. And I sometimes question: where do I fit in?

When I attended my first National Stuttering Association (NSA) conference four years ago, I met many passionate, outspoken and talented SLPs who stutter. I saw that I wasn’t alone with reconciling being a part of these two worlds. Throughout my 3+ years working as an SLP and 4+ years involved in the stuttering community, I have come closer to personally being able to integrate both sides of my identity.

However, there is one thing that still troubles me: the disconnect between PWS and SLPs. After speaking with many people in the stuttering community, it is clear that there is still distrust or even animosity among many PWS toward SLPs. Some had negative experiences with stuttering therapy as a child, feeling singled out by a school SLPs who pulled them out of class, or clinic-based SLPs who were not very well-educated about stuttering. Other individuals even had stuttering therapy as adults when they were more intrinsically motivated, but their SLPs did not target the “below the surface” components of their stuttering and felt fluency shaping therapy pushed on them. And there is still significant lack of understanding among SLPs about stuttering. For example, when polled, over 30% of school-based SLPs reported they do not feel comfortable treating children who stutter (Brisk, D. J., Healy, H.C. & Hux, K.A., 1997).

So how can we bridge this gap between PWS and SLPs and reach a greater level of understanding on both sides?

Today, in 2017, we are definitely making strides in the right direction. Organizations like the National Stuttering Association of America (NSA), the International Fluency Association (IFA) and The Stuttering Foundation of America (SFA) make it easy for SLPs to receive accurate, affordable and accessible resources about stuttering. There are more SLPs than ever involved in stuttering self-help groups. Speech-language pathology Master’s programs regularly have PWS speak on panels to help their students achieve greater understanding of the stuttering experience. Graduate students are given the assignment to voluntary stutter in their communities as an empathy-building exercise and podcasts like StutterTalk makes it easy for SLPs and the rest of the world to hear honest stuttered voices.

Nevertheless, there is certainly more work to be done. As both a PWS and SLP, I have some suggestions for how we can bridge this gap between both worlds

Advice for SLPs who work with PWS:

  1. Go where the stutterers go! Enter their world in their “natural habitats.” Observe stuttering support group meetings and attend stuttering conferences. At these conferences, don’t just go to workshops by SLPs for SLPs, go to the workshops given by PWS for PWS. This is where to find the most valuable information about stuttering.
  2. Treat PWS -not professors, diagnosticians or researchers- as the leading experts about stuttering. As SLPs, it can be difficult to sit back during therapy, but don’t be so quick to give advice or judge. Open your hearts and minds, ready to learn. Ask your clients what they think their goals should be, what they do during moments of stuttering, where they feel tension in their bodies. Treat them as the experts of their stuttering.
  3. Be honest with yourself and intuitive – if during stuttering therapy, something doesn’t sit quite right with you or if you feel like you are giving your client mixes messages…you probably are! Whether you have one year of experience working as an SLP or 50, ask questions and do your research before treating, if you are not familiar with stuttering. Think of stuttering therapy beyond a set of techniques. Learn about holistic approaches that can be integrated with traditional therapy, such as mindfulness, meditation, acceptance-based treatments and creative expression (writing, dance, drama).
  4. SLPs should be the number #1 allies to PWS. The NSA recently published a wonderful resource about how to be an ally to PWS. Get involved in stuttering advocacy. Even in 2017, PWS experience education and employment discrimination and mistreatment. I strongly believe that SLPs who work with PWS should be on the forefront in helping reduce public stigma about stuttering. Protest, education, and contact with other PWS have all been demonstrated to be valuable strategies for reducing negative stigma about stuttering (Boyle, M. P., Dioguardi, L., & Pate, J. E., 2016). SLPs can condemn politicians who outwardly mock stuttering or television shows or films that portray stuttering in a negative light in the media by issuing press releases or public protest. SLPs can work with large businesses and cooperation to educate employers and HR professionals. They can replace myths with facts about stuttering and ensure that employers interact with PWS and hear their personal stories.

Advice for PWS:

  1. Have an open mind toward SLPs. In many ways, stuttering therapy has changed since the field of speech-language pathology was founded. So many more 21st century SLPs have comprehensive approaches to stuttering therapy that go beyond the behavioral components of stuttering and also include work on thoughts, attitudes and emotions.
  2. Be educated consumers of stuttering therapy. Just because an SLP has experience treating PWS or even specializes in stuttering, it does not mean they are the SLP for you. If you are interested in pursuing therapy, do your research before seeking out your SLP. Think about your priorities and goals and find an SLP who is aligned with them.
  3. Partner with SLPs to create change you want to see in world. With education, SLPs can become some of our best fluent allies. Share with your SLP your personal stuttering goals, as well as your aspirations for the wider stuttering community. Find projects meaningful to you to help PWS out there, especially those that may not have the resources to advocate for themselves.

We PWS who are also SLPs are perfect candidates to bridge this gap. This is our charge, our personal and professional mission. As PWS who work in the field of speech-language pathology, we have to put our stuttering out there in our workplaces and show our colleagues and clients that it is ok to stutter (we can’t make our clients do something we won’t do ourselves, right?!). We need to talk openly and candidly about our strengths and challenges relating to stuttering. Additionally, I believe that we need to be doing more training in our schools, hospitals and private practices to fluent SLPs. It is vital that we take a leadership role in educating the profession about stuttering. And finally, when interacting with our friends who stutter, we can implicitly or explicitly show them that SLPs are here to love and support them. It is through these efforts, I believe, we can create a world that greater understands stuttering.

 

References:

Boyle, M. P. (2011). Mindfulness training in stuttering therapy: A tutorial for speech-language pathologists. Journal of fluency disorders, 36(2), 122-129.

Boyle, M. P., Dioguardi, L., & Pate, J. E. (2016). A comparison of three strategies for reducing the public stigma associated with stuttering. Journal of fluency disorders, 50, 44-58.

Brisk, Deborah J., E. Charles Healey, and Karen A. Hux. “Clinicians’ training and confidence associated with treating school-age children who stutter: A national survey.” Language, Speech, and Hearing Services in Schools 28.2 (1997): 164-176.

What does it mean to be an ally to people who stutter? (2017, August 15). Retrieved from http://www.westutter.org/wp-content/uploads/2017/08/Allies.pdf

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Comments

A World that Understands Stuttering: Bridging the Gap between SLPs and PWS (Chani Markel) — 67 Comments

  1. Hi Chani – this was such a great paper and an important perspective to be shared. I have always found it interesting to learn and understand what it must be like to “straddle” two “different worlds.” I love the advice you share to help bridge the disconnect between SLPs and PWS. For there is one, definitely. I have given talks and inservice trainings to SLPs, especially those practicing for 25 years or more, and sometimes it seems like they have no clue how to work with someone that stutters. In April of this year, I spoke at the NYSSHLA Conference and gave a talk about covert stuttering. Towards the end, after sharing how for me it was a breakthrough to be able to openly stutter comfortably, an older SLP asked me why I didn’t want to try and be fluent. Someone else chimed in, agreeing with her, suggesting that fluency could be had if I gave therapy a try. I was so discouraged by this and totally felt that disconnect that you speak. I feel that it’s up to the new generation of SLPs, like you and your peers, to help bridge the gap create one world where everyone has a better understanding of stuttering.

    • Hi Pam! Thanks so much for commenting. I am so sorry that you had that experience at the NYSSHLA Conference. Clearly the SLP that asked why you didn’t try to be fluent missed the entire point of your talk about covert stuttering. I haven’t really polled older vs. younger SLPs about their attitudes about stuttering, but I have a conjecture that the younger generation of SLPs may have a more balanced perspective- or so I hope. Thanks for doing all your great work for the stuttering community! I believe that it is imperative that the new generation of SLPs partner together with the stuttering community to achieve a greater understanding about stuttering and spread awareness.

  2. Hi Chani, I very much enjoyed your paper. I am a SLP graduate student, and it was very helpful to understand how to be an ally to PWS. I was wondering when working with young children who stutter, what do you feel is the most important thing to say to the child’s family as a SLP?
    Thank you so much for your insight! I’m hoping to be a part of the generation of SLPs with a better understanding of stuttering.

    • Thanks for writing! It’s always great to hear from SLPs (and future SLPs) who are committed to being allies for PWS and gaining a better understanding of stuttering. In terms of talking to families of children who stutter, it is tough to say what is the most important thing to share with them because all families are so different in terms of where they are at with their child’s stuttering. Some may really benefit from education about stuttering tips how they can help facilitate communication at home. Others may not be ready for all the “facts” and really just want you to listen and be there for them. Regardless of the family, I like to tell parents that I am working with them as a team to help their child. So many parents look up to the SLPs as the expert and it’s important that they are very involved in the treatment.

  3. Hi chani!
    Thank you for this insightful paper. I couldn’t agree with you more that we have to close the gap between SLP’s treating PWS. As a current Speech Language Pathology Graduate student, I have a few questions:
    You mentioned that you provide therapy services in an elementary school. Do you only treat PWS, or treat a vast amount of communication disorders? If so, have you ever gotten teased/made fun of by the children for your stutter?
    Also, in regards to the parents, do they ever show you mistrust or doubt your therapeutic techniques because of the stutter you exhibit? How does that make you feel? Do the parents ever worry that your stutter will “rub off” on their children who originally exhibit a minor speech disorder? Or, do parents trust that you are doing your job in helping their children become better and more effective communicators?
    Looking forward to hearing your response,
    Esther Mizrahi

    • Hi Esther! I treat children with a variety of speech and language disorders in a public school in NYC. I currently have 2-3 students on my caseload who stutter. It is rare for students to mention my stuttering (many are oblivious), but I’ve had a few students ask why I talk the way that I do. I then give them an age-appropriate explanation for what stuttering is. I had only one student in my 3+ year career to mock my stuttering, but she had severe psychiatric issues so I knew not to take it personally. I used to be very concerned about how parents would react to my stuttering. When I am at larger meetings with a variety of professionals present, I often self-advertise that I am a PWS. That helps me feel more present during the meeting, rather than being so focused on my stuttering. Since most of the time, parents are so focused on their children and their speech/language issues, my stuttering rarely is the topic of conversation. My guess is that some parents trust me even more as an SLP because I can better relate to the struggles of my students with communication disorders- especially those who stutter.

  4. Thank you for sharing your unique perspective with us. You mentioned the distrust and animosity that a PWS can sometimes direct towards and SLP as a result of being pulled out of the classroom for therapy. How do ensure a child’s communicative needs are being address fully while keeping them from feeling singled out or isolated?

    • Thank you! At the elementary level where I work, there is little to no stigma for the students being pulled out of class since students leave the classroom for so many different services and programs (e.g. OT, PT, counseling, gifted and talented testing, ect). For older students and teenagers, if a student mentions that he or she is feeling singled out for attending speech therapy, it is important to have an open and honest conversation with the student and problem solve the situation. For example, maybe the student can come to your office rather than being picked up by the SLP or the student can be placed in a group speech therapy setting to be with his/her peers. Hope that answered your questions!

  5. Chani-

    Your perspective is exceptionally helpful to those of us that are currently still in school as well as practicing SLPs. Too often professionals want to push for ‘correct’ speech without considering the client’s perspective. I have to say that the disconnect between SLPs and PWS is evolving in the right direction though, and it is thanks to people like you advocating and educating those unaware of the damages one may potentially cause by trying to hide stuttering. With that being said, I feel in any situation as sensitive as this that it is most important to build a sense of trust between you, the SLP, and your clients as well as with their families. How would you suggest going about this with a parent that may only be concerned with suppressing their child’s stutter? The power of education can only go so far with parents that are willing to listen.

    • I totally agree that for parents exclusively focused on fluency, it can be so challenging to share a balanced perspective of stuttering therapy, incorporating discussions regarding/attitudes and emotions. My best suggestion is baby steps! Don’t expect to change the parent’s perspective over night. Slowly educate them about stuttering. Maybe having them speak to or meet other parents who stutter or introduce them to a stuttering support group for parents may help. Good luck!

  6. Hi Chani!

    Thank you so much for sharing. This writing on your experiences gives a unique and vital perspective as someone who truly understands both how PWS feel and how SLP’s feel. I am a graduate student studying speech pathology, but I am also very interested in the counseling side of our profession. I majored in psychology in college and thought a lot about becoming a counselor before deciding on speech pathology. You mentioned some PWS feeling frustrated that the SLP did not target the “beneath the surface” components of stuttering as well as your own experience with cognitive behavioral therapy. I know some may be referred to cognitive behavioral therapy or other psychological counseling as a separate service, but I wanted to hear more about how you incorporate counseling into your therapy for PWS? Did you ever pair with a counselor or have a mentor in the counseling field who helped you implement tools to help with the “beneath the surface” components of stuttering? Or were you able to use your own life experiences and education to understand and help your clients with these struggles?

    Thank you,
    Danielle

    • I think that while SLPs are often the best people to counsel PWS, I have heard from many PWS that they benefited from speaking with a psychologist or other type of mental health counselor to help them with their stuttering. As an SLP in the schools, I incorporate a lot of counseling into my therapy for children who stutter- both counseling the children, as well as counseling the families. Being a PWS myself, I feel like the counseling piece of therapy does come slightly more intuitively to me then to other SLPs, but we all have our tricky cases where we have to consult with other SLPs or, if need be, professionals in other fields. Great questions!

  7. Chanti,

    My name is Tori and I am a speech pathology graduate student at Appalachian State University. I currently have a professor who is both a PWS and a SLP so I am lucky enough to be taught our fluency course from the viewpoint of both those roles. I throughly enjoyed reading your piece especially the advice portion for SLPs who work with PWS. I was curious as to your opinion on the terminology we use with parents and clients regarding stuttering. I noticed that you yourself use “PWS” to identify your self and refer to it as being a part of your identity. As you know being a speech pathologist when a diagnosis becomes a part of your identity terminology can become tricky. In an education setting we are most often taught to use person first language but this can be offensive in some communities such as the Deaf community. Have you experienced or do you anticipate experiencing this reaction from the stuttering community as counseling and acceptance-based therapy grows in popularity?

    • Hi Tori! Wonderful questions. I refer to myself as a PWS (person who stutters), which is considered person-first language. Stuttering is definitely a part of my identity, but it no longer takes over my life like it used to. So I consider that a step in the right direction for sure. 🙂
      Other PWS that I know refer to themselves as “stutterers.” The word “stutterer” never really resonated with me personally, but I know plenty of PWS who use it and are empowered by it. I have never heard anyone offended by PWS vs. stutterer, but it will be interesting to see as the stuttering community intersects more with the Disability Rights community. Best of luck in grad school!

  8. Chani,

    I really enjoyed your paper, thanks for sharing your thoughts with us! I loved hearing about your positive experience with SLP services. This just goes to show that when the clinician gets stuttering, it opens doors for our clients. No one wants to go to therapy and feel judged or expected to become something they are not. This is relatable to all types of therapy, not just stuttering. I have to agree that the best way to understand stuttering is listen to PWS. I feel like after listening to podcasts and different experiences and stories, I finally understood. I was better able to connect with stuttering, although I don’t stutter. And that’s what we want after all, right? A world that understands stuttering.

    Best,
    Alison

    • 100%. I know plenty of fluent SLPS who have AMAZING connections with their clients who stutter and know way more about stuttering than your average PWS. Listening to podcasts and talking to PWS is honestly the best way to learn about stuttering. Thanks so much for writing and expressing interest in learning more about stuttering!

  9. Hi Chani,
    Thanks a lot for your insightful paper. Bridging the gap that you discuss is a large part of the rationale for the joint ICA-IFA-ISA world congress to be held in Hiroshima in July 2018. If there is any way you could attend, I would strongly encourage you to submit a paper based on what you write here. More researchers, clinicians, and PWS, need to hear from you.

    • Hi Hanan! Always wonderful to hear from you. I really admire all the work that you do for the stuttering community! I wish I could go to the world congress in Hiroshima, but I don’t think it will be happening- way too far…though I am definitely planning to attend NSA in Chicago this summer! Hope to see you there. 🙂

  10. Thank you so much for sharing! I am a speech pathology graduate student and I am inspired by FAU’s determination to provide SLP services to people who would otherwise not have access to it. I really enjoyed reading about the journey and development of the distance therapy program. Does FAU ever work with any children who stutter in Rwanda or other parts of Africa or is it typically only with adults? In class we have read about the counseling piece of stuttering therapy and I am curious to know if counseling is incorporated into the telehealth therapy sessions and if the individual’s family members are ever included in the sessions?

    Thanks so much!
    Sophie

  11. I read your paper and I loved hearing the perspective of someone who has experienced both sides as the clinician as well as a PWS. I think your advice to SLPs of experiencing the world of stutterers in their natural habitat is priceless advice! I am a graduate SLP student and attended a teenage stuttering support group and it was so insightful to hear from the teens’ experiences first hand. I would not have been able to get that experience and gain that knowledge from reading it in a text book or hearing from another SLP. Thanks so much for sharing your story!

    -Sophie

    • No problem. Teen support groups are an awesome learning environment to enhance your knowledge and experience with stuttering therapy. Thanks so much for writing. Best of luck in grad school!

  12. Hi Chani,

    What an amazing paper! There were so many aspects of it that I loved–you have such a flair for language! Your comment: “Stuttering did not have to be the bossy friend that I had to listen to for fear of being rejected” is one I am going to steal–I will reference you. I think your outline to bridge the gap are spot on and should be mandatory reading for all grad students and all SLPs. My favorite was treating the PWS as the expert. It is a pleasure to have you part of our community!

    • Rita, thank you very much for the kind words about my paper. It means so much to me that you enjoyed it (especially coming from you!). It would be fantastic for more SLPs and SLP grad students read some of the ideas that I suggested. Aside from the ISAD conference, I wonder how we can make that happen?! It would be especially useful for SLP grad students who may not have worked with many clients who stutter in their clinic/externships thus far. Thanks again for writing. I really value your contributions to the stuttering community as well! I learned so much from your workshops at the last NSA conference and I look forward to speaking with you again this summer!!

  13. Hi Chani,

    Thank you for sharing your unique perspective with us. I am currently a graduate student at the University of Tennessee Health Science Center in Knoxville. As a first year grad student, I have not had extensive coursework in stuttering yet. However, I am glad I read your insightful paper prior, as it will affect how I approach the material. I am interested in how/if adults who stutter differ from children who stutter, in regards to stuttering behaviors, emotional, cognitive, and social reactions, etc. Would you say a majority of PWS come to a realization like yourself that it is ok to stutter? You reached this moment in your life as a senior in high school, when adulthood is just beginning, which made me consider this question.

    Thank you again for sharing this piece with us. I looking forward to hearing from you,
    Katelyn

    • I don’t know if the “majority” of PWS come to the realization that it is ok to stutter, but it was a turning point in my stuttering journey for sure. In my experience many PWS, especially those who are not involved the stuttering community, don’t necessarily know that it is ok to stutter! For both children and adults, targeting stuttering behaviors along with the emotion, cognitive and social components is crucial. For children, sometimes it’s easier because you don’t have to undo decades of shame and avoidance. For other children, it is more challenging- especially if they have been bullied…that’s just what I’ve need in my work. Best of luck in grad school!

  14. Chani, this was a really great article that opened my eyes to the position of a PWS and an SLP. Good for you that you took a challenge and channel it into helping others in similar challenges! On that note, you mentioned certain techniques/therapies that were beneficial in controlling your stutter. As an SLP, is it difficult to use methods in therapy that totally didn’t work for you? Do you tend to begin with the techniques that were most helpful for you?
    Thank you,
    Liana

    • Great question! I try to separate my experience in stuttering therapy from my clients’ experiences to an extent so I don’t project on them what I found helpful without fully listening to what they want from therapy. However, key messages that were instrumental to my therapy experience, such as being told it is ok to stutter, “feeling the fear and doing it anyway” (desensitization), and the benefits of self advertising, are usually components of therapy that I would introduce to older children/teens/adults who stutter. Hope that helped!

  15. Thank you for sharing your experiences, Chani. I am in grad school working toward my M.S. in Speech-Language Pathology and am currently enrolled in fluency this semester. Much of the content we have covered so far is reflected in what you have shared, especially in how to address the experience of PWS and what that means to them as they navigate through the communication landscape. Your experience as both a PWS and SLP gives you a unique vantage point from which to assess both the experience of being on both sides of the therapy table, so to speak, which I can only imagine is an advantage as and SLP and truly understanding the client’s point of view. In response to the idea about SLPs as having perfect speech and the comparison creating anxiety, it is an interesting assumption and makes me think that, because of their expertise in the field, SLPs are potentially perceived has having perfect speech and language, but might not necessarily be the case, on the whole. Because SLPs could perceived this way, might PWS who encounter SLPs might feel even more judged or their disfluencies feel more pronounced, becoming barrier in therapy? Kind of like going to the dentist and admitting you haven’t been flossing regularly 😉 I appreciate point three under advice for PWS in partnering with SLPs to understand not only what they want to see in therapy, but how they feel and understand that SLPs, even if fluent and educated in speech and language treatment, can be prone to imperfect speech and feelings of communicative inadequacies as well. Finding this common ground might help facilitate rapport and alleviate resistance to therapy.

    • Interesting question. I can definitely see why you think that may be the case. When I saw an SLP for my own stuttering, it was the reverse- because I knew that she knew that I was a PWS (and she told me that stuttering was ok!), I was very comfortable stuttering in front of her. Thus, I actually was way more fluent during speech therapy than in other situations in my life!

  16. Chani, what a great paper! Your advice to SLPs and PWS is spot on. As you suggest, treating the PWS as the expert on his or her own stuttering is so important in being the best allies we can be. I, too, walk that line between PWS and SLP, and I know exactly what you mean when you write that you sometimes “feel like an imposter in both worlds.” But trust me, it’s a privilege to count you as a professional colleague and member of the stuttering community!

  17. Thank for your great insight! As a future SLP it’s great to hear an authentic perspective on how we can connect with our clients in genuine ways. This paper also illustrates how important it is to remember that PWS or any client aren’t just a list of symptoms on a piece of paper but rather people we as the treating “professionals” should engage with to figure out best practices.

  18. Thank you so much for this input. As a graduate student in an SLP program at the University of Minnesota Duluth, this advice and knowledge will impact how I treat individuals who stutter and understanding how my clients may be feeling due to previous experiences with SLPs. Textbooks can only teach us so much, so reading your article and these comments from you and PWS is so beneficial to my future clinical career. Thank you so much for this insight.

  19. Chani,
    I am a first-year graduate student, currently taking a Fluency course. Your paper caught my attention, as I was very interested in learning about your unique perspective.

    My class has discussed the animosity between PWS and SLPs, so it excites me to hear that your therapy experience is what inspired you to become a SLP. I hope to influence somebody’s life like that one day. I think your tips will help both parties better understand each other and bridge the gap.

    You mentioned that graduate students often voluntarily stutter to build empathy. My class was given this pseudo-stuttering assignment. Do you thinking faking a stutter helps students better understand the covert characteristics that accompany fluency disorders?

    • I think it’s a great assignment. I had that assignment too when I was in grad school. Most of the students in my class mentioned covert-like behaviors to avoid “stuttering” during this assignment. However, it is important to make a distinction between pseudo-stuttering, where the individual is in complete control over his/her own “stuttering” vs actually stuttering, which is often characterized by a loss of control on the behalf of the speaker. Thanks for writing!

  20. Thank you so much for your presentation. I really appreciate your perspective as an SLP and PWS. I am currently a graduate student on the road to becoming an SLP. My professors and program are really encouraging us to seek out PWS and having us attend NSA meetings and use resources such as this online conference. I am really appreciating getting to view stuttering from multiple perspectives. I appreciate the pointers you gave for SLPs. They were honest and digestible. Thank you so much!

    • That’s so great that you’re professors encourage you and your classmates to seek out meeting PWS. It’s definitely the best way to learn about stuttering. I wish every grad program would have a requirement that every student must meet at least 5 PWS.

  21. Chani,
    I love this paper so much. I have shared it with all the SLPs I know and I’ve pointed SLP students to it as well. I would love to collaborate with you on something : )
    Elizabeth

    • Thanks so much, Elizabeth. As you know, I admire your work very much and would LOVE, LOVE, LOVE to collaborate with you on something. Keep up all the awesome work that you do for the stuttering community!

  22. Chani,
    Thank you for sharing your story and providing advice on how SLPs can work better with PWS. As a first year graduate student I do not have any experience working with PWS. This is the first semester I have taken a class on stuttering and I found your advice very helpful because it solidifies what I am learning. Thank you for being an advocate for both SLPs and PWS and leading the way to bridge the gap!

  23. Chani,
    I really enjoyed reading your paper. It was very interesting to hear about a point of view from a SLP and PWS. You are in a very unique position and I am happy to see that you did not let stuttering stop you from becoming an SLP. You are very inspiring. I am a currently a Speech Language Pathology graduate student and I love getting advice from fellow SLPs on how to approach stutter therapy because, like many others, I am not confident in providing therapy for PWS. I think it would be a good idea for myself and other SLPs to take part in the “stuttering world” by attending stuttering support groups and workshops given by SLPs and PWS. I really liked what you said about treating your client who stutters as the expert of their own stuttering, because they are! Bridging the gap between SLPs and PWS is definitely needed and I hope that the world is able to gain a better understanding about stuttering and acceptance for those who stutter. The one question I have is: What were some therapy techniques that you feel was the most beneficial when you were in therapy and do you have any “go-to” techniques that you implement in therapy with your own clients?

    Thanks for sharing!

    Anna

    • I found a combination of techniques helpful, but probably the ones I use on a regular basis are self advertising, open stuttering, voluntary stuttering and pull-outs. With my own students, it really depends on their age, developmental level and their goals for therapy. Good luck in grad school!

  24. Hi Chani,
    I really enjoyed your paper. I am a SLP graduate student, so it was very helpful to read your perspective and try to understand how we can become allies to PWS.
    As a bilingual (English is my second language), I am sometimes told that I have an accent or pronounce things differently. Because of this, I have been questioned whether becoming an SLP is the right career for me. I had speech therapy (only worked on /s/ production) myself when I was in elementary school, but do not remember much of it since it didn’t last long. Sometimes, when I need to talk to an authority figures or professors, I have trouble expressing myself because I don’t want to mispronounce words in front of them. Most of the time, I get really nervous when speaking to them, which makes me have word finding difficulties. This makes it even harder to express myself.

    I also have a friend who is an SLP graduate student and has been questioned the same way because of her voice. She has a very different voice (would be described as hoarse, rough, and even too low for a women) and was told that she should look for “a back-up career”. Did you ever run into this sort of comments from your classmates, professors, or even family members because of the stutter you exhibit?

    I do believe that some parents must trust you as an SLP because you can relate to the struggles of students with communication disorders, especially those who stutter. But how would you respond to parents (or even your own clients/patients) if they expressed mistrust or doubt on your therapeutic techniques, or in fluency therapy in general, because of the stutter you exhibit?

    Thank you for sharing!

    • I can definitely relate to your experiences with expressing yourself in front of authority figures. I was really fortunate to have attended a small, very close knit grad program with very supportive professors and supervisors. No one in grad school questioned my ability to be an SLP due to my stuttering. I belive I’ve been very fortunate because I heard some grad school horror stories from some SLPs who stutter! If a parent expressed doubts that I can be a good clinician to their child due to stuttering, I would explain to them how my stuttering does not impact my ability to communicate effectively and as a clinician, can even be a strength. But ultimately it’s the parent’s decision, of course. Hope that helped!

  25. Greetings Chani,

    As a first year graduate student, when reading your post, I felt as if your advice was speaking into the future me as an SLP. First of all, kudos to you for being willing to share your own experience for the purpose of helping other PWS. Although I have not yet entered the field, I can see how some SLPs are unsure how to appropriately react and treat a PWS. It can be scary and uncomfortable. Those are some of the feelings I have felt so far when listening to a variety of video clips of PWS, however that is no excuse. I have been lucky enough to be enrolled in a Fluency Disorders class for both my undergraduate and graduate coursework, although I feel that these courses have only scratched the surface. What I have learned so far is that much of what we will provide to our clients who stutter will be learned right along with them. The importance of understanding etiologies, techniques, and approaches is very high, so is the openness of our minds and hearts just as you described. Allowing a PWS to show us as SLPs what their worlds look like and what they feel like in every situation imaginable is key to success. All of this is a lot easier said than done, but I am so glad you called attention to it. I hope that one day when I have a PWS on my caseload I can utilize the wonderful advice you have given and be the best clinician possible for that PWS, and maybe even someone else will be able to learn from it too.

  26. Thank you so much for writing about your experiences-You have such a unique and valuable perspective! As a speech language pathology graduate student, I am excited to learn more about how to provide the best support for PWS of all ages. I can definitely understand that PWS may feel less than excited when speech therapy is mentioned based on how it has been treated throughout history. I am glad that philosophies surrounding treatment are now more focused on managing those covert aspects and promoting self-advocacy rather than just trying to manage fluency alone.
    Thank you so much for your advice and your story!

  27. As graduate students that will soon go into the field and have clients on our caseloads who stutter, your article was very insightful into understanding the world of a person who stutters as well as how we should go about treating our future clients. It’s a shame that this disconnect between people who stutter and speech-language pathologists exists, as it prevents the establishment of rapport between client and therapist and can hinder therapy progress. We found it interesting that you suggest that speech-language pathologists enter into the “natural habitats” of people who stutter so that we may gain insight into their world and walk a few steps in their shoes. This will allow us to better treat our clients who stutter because we will have a more thorough understanding of their primary and secondary stuttering behaviors as well as their personal goals, allowing us to create an individualized treatment plan for them. It is crucial for us to learn that we must get involved and start advocating for the stuttering community, because even though we have come a long way, negative stigmas are still present. Thank you for sharing, we hope that we as the future generation of speech-language pathologists can work to bridge the gap between the two worlds by spreading awareness and acceptance.
    -Emmie, James, Brittni and Sarah Beth

  28. Chani,
    Thank you for your very insightful article!
    As a method of bullying prevention, what do you think is the best approach in teaching children about stuttering?

    • I believe education about stuttering (e.g. Whole class presentations, handing out pamphlets about stuttering, creating posters about disabilities/differences) can help prevent bullying for CWS. I’ve also done role plays with my students about how to respond/not respond to bullies and how to approach a teacher when there is a conflict. Great question!

  29. Hi Chani,
    Thank you for sharing your experiences. Bridging the gap between PWS and SLPs is something that needs to be talked about more often. I am currently a graduate student and I think about this gap and what I can do to change it. Getting insight and perspective from a PWS always helps me to think about stuttering in a new light. You mentioned that you work in a school and I was wondering how you manage your caseload and if you feel like you have an adequate amount of time with the kids on your caseload who stutter? Also, I am currently learning about the direct and indirect interventions and I was wondering if you favored one over the other? Or use one method more with your caseload?
    Thanks,
    Michelle

  30. Thank you, Chani, for the wonderful paper. It made me reflect upon the historical significance that caused a disconnect with SLPs and PWS, and how I want to be an advocate for PWS through out my life. I recalled tending bar and having an older gentleman discuss the career I had just chosen. He mentioned having a stutter as a boy and discussed how terrible therapy was, I shook it off because I didn’t know the internal struggles he went through. Years later, I still think about this man and wish I could have said something more. Something more to tie the gap between SLP and PWS-but mostly to show more compassion. At the time I didn’t know his challenges. This makes me want to be an advocate and help destroy the preconcieved ideas about stuttering and continue to fill my head with as much information as I can so that I can aid a misunderstood population by informing others.

  31. Hi Chani,

    Thank you for sharing your thoughts in this insightful paper. I am a first-year graduate student at Western Carolina University. As someone who will enter the SLP world in a few years, I think it is extremely important for all SLPs to be fully informed on stuttering and the effects it can have on PWS. I am currently in a Fluency Disorders class with an amazing professor who is a SLP and a PWS. He has taught me to be aware of the feelings that come along with stuttering, however, I never thought of attending a stuttering support group or a stuttering conference to gain more information about stuttering. When I become an SLP, I strive to be an advocate for PWS and to encourage my fellow colleagues to become informed about stuttering. How would you suggest I accomplish that goal? Thank you for sharing your story!

    -Allison

  32. Hi Chani,

    Thank you so much for sharing your thoughts and experiences. As a graduate student studying speech-language pathology, it is so important to have as much information and knowledge about stuttering from PWS and SLPs. You listed such great advice for SLPs who works with PWS and for PWS to help bridge the gap. What is the most important piece of advice for an SLP who works with PWS to help bridge this gap?

  33. Chani,
    What a wonderful and important message you have eloquently typed out. As a graduate SLP student, this article was endlessly fascinating for me. I found your tips for SLPs and PWSs to be useful and I liked that you had advice for both of these groups of people – there was no blame-shifting. I will also be sure to keep in mind that the PWS is who we should turn to for questions about stuttering and that they are most certainly the expert when it comes to their own stutter. This notion is liberating.

    Thank you for your advice,
    Blaire Mertz

  34. Hi Chani,

    Thank you for sharing your perspective on what it is like to be an SLP and a PWS. As a first year graduate student, I found this post extremely helpful and reassuring as to what can be done in the therapy setting with clients who stutter. I absolutely agree with you that PWS should be the experts on stuttering and not other SLPs, professors, doctors, etc. Fluency disorders are something that I still have so much more to learn about, but I loved being able to read about the experiences of stuttering from a person that is in my field as well as a PWS. I look forward to taking your advice with me as I continue through graduate school and beyond. I hope that in 2017, we can continue to bridge the gap between SLPs and PWS. On an individual level of bridging the gap, I plan to start attending the stutter support group at my school and learn more about the personal experiences of the PWS that attend.

    Thank you for sharing,

    Ali Peterson

  35. Hi Chani,
    I loved your paper! Thank you for sharing your unique perspective. It is unfortunate that even SLPs can misunderstand stuttering and/or be uncomfortable working with PWS. I also felt sad when you mentioned that there is a perceived mold of SLPs having perfect speech. It is easy for people to assume that they are fluent simply because they do not stutter, and completely miss the fact that everyone is disfluent to some degree. There are a lot of myths about stuttering out there, and it makes me realize the need to educate the public and help them increase their understanding of stuttering. It makes me very glad that I am fortunate enough to take a course on stuttering this semester! (As a first-semester graduate student in speech-language pathology, I just wanted to mention that I did complete the assignment you mentioned about voluntarily stuttering in my community, and it was definitely an empathy-building experience that more people should try.) Thank you for the advice; I look forward to using it!

  36. Hi Chani,

    Thank you for sharing this wonderfully written paper with your personal experience in both realms. I am very interested in understanding your perspective as someone who understands and has experienced life as both a PWS and an SLP. Your paper made me wonder about how your belonging to each group impacts your perspective as a member of the other? In other words, how has being a person who stutters impacted your therapy practice, and how has being a speech-language pathologist affected your viewpoint on stuttering? I am very intrigued at how you coexist in both of these interrelated (yet sometimes seemingly opposing) worlds simultaneously. Thank you again for sharing this; it really opened my eyes to a more complete, holistic perspective on the relationship between PWS and SLPs.

    -Jacki

  37. Hi Chani,

    Thank you for sharing your personal experience as being both a PWS and SLP. I am a graduate student studying speech-language pathology and I think it is very important that future SLPs become comfortable working with a wide range of clients, including PWS. I found your advice for SLPs who work with PWS very beneficial, especially the idea about treating the PWS as the expert. Many other individuals have commented, asking for advice on how to work with parents who want to eliminate their child’s stutter. I thought of that as well, because it is not only the client’s perspective that maters, but their family’s as well. Your suggestions about educating parents, understanding that it may be a slow progression, and informing them about support groups they could attend was helpful.

    -Amber

  38. Chani,

    Your paper was insightful and I could feel you heart and personality throughout reading it. I am a graduate student studying speech-language pathology, and my professor this semester for Fluency is a PWS and an SLP just like you. He opened my eyes to this perspective to address this gap between SLP’s and PWS, through one of the very things you mentioned, SLP’s should be the number one allies to PWS. I think a misconception comes from how SLPs used to treat stuttering, through techniques that put the PWS in the background and the treatment in the foreground. Treatment should in my opinion, deal with helping the PWS accept themselves as a communicator, providing instances for success with fluency, and most importantly, teaching PWS that it is okay to stutter, and to stutter fluently. Treatment should not be about 100% fluency for the client or it’s a failure. I think it is our job as SLPs to know we gained success in treatment when we reached the client’s goals for therapy, whatever they may be. Thank you for letting me take a look into your personal experience, and thank you for trying to bridge this gap, and not letting your identity define you, but rather embracing it.

    -Chelsey

  39. Chani,

    Just to go off my previous post, I was wondering why do so many SLPs hesitate to work with PWS. I understand why PWS hesitate to work with SLPs due to the stigma of past treatment, but could not come up with a valid reason why so many SLPs avoid the realm of fluency. Is it merely the lack of understanding?

    -Chelsey

  40. 10/20/17 10:48 PST

    Chani,

    Your intake on this topic is both eye opening and admirable. I personally find myself having greater respect to those who take what some consider a ‘flaw’ and turn it to a positive, fearless, quality of one’s persona. You for instance will always identify as a PWS, but your stuttering was also the inspiration to your decision in becoming an SLP as well as an advocate. Reading about how you outgrow your covert stuttering was wonderful to hear, considering it must have been a huge leap- as it may be for many. Overall, your story is gratifying and we need many more individuals such as yourself to progress our field, such as with the following examples. For one, SLPs can learn that there are multiple methods to speak on behalf of PWS. More importantly, we need to reveal to SLPs and PWS that they all already possess the tools needed to evolve stuttering therapy. Together, therapy can incorporate more appropriate counseling components compared to the current procedures. Also therapy can increase equal collaboration so to customize SLP techniques with the goals raised by the PWS. Furthermore, public education should be prioritized in order to erase the stigma associated with stuttering and cluttering- and that starts within the: SLP field, medical field, education field, ungraduate/graduate courses(yes plural since some programs only implement one class), and social media.

    We have come along way, as you have mentioned, but there is still an even longer way to go and your provided advice is very concrete/clearcut. I would like to leave you with a couple of questions if you don’t mind answering, and I thank you in advance for sharing your story and advice.

    1. What were your most favorite and least favorite activities you worked on with your SLP in high school?

    2. You provided advice to SLPs and PWS, but is there any specific advice you’d give to undergraduate/graduate students studying to become SLPs?

    3.What particular strategies would you suggest if wanting to condemn others who stigmatize PWS. I want to sound professional, confident, and stand my ground in I am to be in this situation.

    4. Do you have any evidence based articles you are willing to share that relate stuttering/cluttering to current therapy approaches? For example:
    What activities will you include in your assessment with a school age child who is unaware he is cluttering? What treatment would you find is appropriate?

    Best Regards,

    Ellie Saraipour

  41. Thank you for your insight on this topic. I am currently taking a fluency class in my graduate program and as we have been learning about stuttering it has been mentioned that many SLPs are reluctant to work with PWS because they are not experienced or knowledgeable concerning the fluency disorder. As a result of this, we have also learned that many PWS feel as though speech therapy made their stuttering worse. I see that you have advice for SLPs on how to effectively work with PWS and I was wondering if you had any additional ideas regarding how an SLP should approach therapy with a PWS who has had a bad experience in the past.
    I was also interested in your mention of holistic approaches to therapy and I was curious if this relates to your yoga practice. I would be curious to find more information regarding things like that as treatment and its effectiveness.
    Thank you,
    Emily

  42. Hello Chani,

    I appreciated your article and insight from the perspective of the PWS and the SLP. I think it was a great point that children being singled out in class or pulled out for therapy would feel even more self-conscious about their stuttering. There must be a way to do this in a dignified manner. Is there a good children’s book about stuttering that you would recommend that could be read to an entire class? I think teaching kiddos about acceptance and using the people first perspective when they are young is crucial in creating a more compassionate and accepting environment for the PWS.

  43. Hi Chani,

    I really enjoyed reading your paper! You mentioned so many intriguing ideas and I was especially enlightened by your tip to treat PWS as the experts. I am currently a graduate student so it feels like a fresh idea to look to our clients as the expert. It makes perfect sense because who better to describe what their stuttering looks and feels like than the one who lives with it each and every day. You have a unique perspective being a PWS and an SLP and I think you have provided some very insightful ideas in this paper. Thank you for sharing your experiences!

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