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

3,408 total views, 2 views today

Comments

A World that Understands Stuttering: Bridging the Gap between SLPs and PWS (Chani Markel) — 89 Comments

  1. Thank you so much for sharing your experiences and insights! I am currently in graduate school at Edinboro University of PA to become an SLP. As a future SLP, I gained so much from your presentation and the advice you shared. Your advocacy for PWS, from both worlds (PWS and SLP), is unique and very inspiring. I agree with you that SLPs and PWS should work together to educate the public about stuttering and increase the support for PWS. SLPs becoming allies for PWS is a great way to do this and make an impact on society. In my fluency class, one of our assignments is to stutter in different situations. Through this exercise, I have become more empathetic toward people who stutter, but I still cannot fully comprehend how it feels to be a PWS, as I am not a PWS. I do think these experiences are valuable to instill a better understanding of what it means to be a PWS, especially for SLPs who will then be able to treat their clients who stutter more effectively and more compassionately. In my undergraduate coursework, I took a class in counseling and communication disorders, and in this class we talked about something you mentioned: the person with the communication disorder as one of the experts. I love this because no one knows what it is like to stutter better than a PWS and they have so much knowledge to share with SLPs and others that can help them receive better treatment, but also create a higher level of understanding about stuttering.

    Thank you again for sharing your knowledge, I will keep your advice in mind as I continue school and in the future!

    -Jordan

  2. Hi Chani,

    Thank you for sharing your thoughts and experiences! I’m currently a first year grad student taking a fluency course, and I’m happy to see that what we focus on in class are along the same lines as you recommended. In your paper you mentioned PWS may have had negative experiences with therapy in the past. When working with these individuals, how do you recommend we start building rapport and soothing their distrust and animosity?

    Thank you!

  3. Thank you for participating and contributing to 2017 ISAD online conference on “Bridging the gap..” Your insight is valued.
    Fortunately, I found a positive speech therapy experience at UC Santa Barbara. However, in the 8th grade I was sent to a school slp who stuttered. I went 1 time. Never went back.
    I often reflect on whether slp who stuttered could have reached out to me.
    Hope to see you at NSA or ASHA 🙂
    My daughter just returned from Birthright.

    warmly,
    Michael

  4. What a wonderful paper. You’ve had an amazing journey and I’m so happy you are doing something very important with your experiences. You must be a joy to have as an SLP and an inspiration to PWS to follow their dreams. Many thanks for your paper and for being you.

    Keep talking!
    Anita S. Blom, Sweden

  5. I really enjoyed your paper. Your unique perspective as someone who is a part of both the SLP and stuttering community was very informative. As a soon to be SLP I hope to take the points that you addressed in your paper with me and implement them in therapy. Thank you for providing your insight so that we all can understand more and be more empathetic!