Freedom to Speak and Freedom to Stutter at the 2016 NSA Conference (Ep. 585)

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Jia Bin with host Christopher Constantino

Jia Bin joins Christopher Constantino today at the Joint Conference of the National Stuttering Association (NSA) and the International Stuttering Association (ISA) in Atlanta, Georgia. Ms. Bin shares that in China there is a lot of stigma surrounding disabilities and that many people with disabilities, including people who stutter, feel a need to hide their stuttering in academia and in the workforce. Ms. Bin discusses learning to stutter openly in the United States after feeling trapped with stuttering in China.

Ms. Bin shares, “The more you hide the worse it gets. So for years and years I had to hide every day. Every conversation I had to hide. I had to pretend I could talk like everyone else. That’s a lot of struggle for me. It’s like you are pretending you are somebody else your whole life.” Mr. Constantino discusses with Ms. Bin the consequences of choosing open stuttering.

The joint NSA/ISA conference takes place July 6-10, 2016. This is the NSA’s 33rd annual conference.

Jia Bin is a person who stutters from China living in Michigan. Ms. Bin is a high school Chinese Teacher.

Christopher Constantino is a person who stutters, a StutterTalk host and a PhD student in Communication Sciences and Disorders at the University of Memphis. Chris is doing his clinical fellowship in the Shelby County Schools in Memphis and is conducting a research study to understand and contextualize the experiences of passing as fluent for people who covertly stutter.

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    Changing My Story: From the NSA’s 2016 Research Symposium (Ep. 584)

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    Anthony DiLollo, PhD

    Anthony DiLollo joins Reuben Schuff today at the National Stuttering Association’s 2016 Research Symposium to discuss his presentation Talking Back to Stuttering: A Constructivist Approach to Counseling with Persons Who Stutter. Dr. DiLollo discusses how people who stutter have the ability to tell and live a different story. Dr. DiLollo states, “We underestimate how much control we have over the way we think and feel simply by the stories we tell.”

    Today’s StutterTalk episode was recorded at the Joint Conference of the National Stuttering Association (NSA) and the International Stuttering Association (ISA) in Atlanta, Georgia, July 6-10, 2016. This is the NSA’s 33rd annual conference.

    Anthony DiLollo, PhD, is an associate professor of speech-language pathology at Wichita State University, specializing in counseling, fluency disorders, interpersonal communication, and qualitative research methods. He has worked as a psychologist and as a speech-language pathologist in clinical and educational settings, as well as 13 years in academia.

    Reuben Schuff is an author and roving host for StutterTalk. By profession and passion he is an aerospace engineer, and also, a traveler, a juggler, a Toastmaster, and a person who stutters. He is a workshop presenter for the National Stuttering Association (NSA) annual conference and is the co-founder of the Raleigh Teens Who Stutter (TWST) chapter of the NSA. Reuben also facilitates and presents with FRIENDS (the National Organization for Young People who Stutter). Reuben is author of the chapter Fluency: My Untrustworthy Friend in the StutterTalk book: Stuttering: Inspiring Stories and Professional Wisdom.

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      Not About Me Without Me (Ep. 583)

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      stuttering, StutterTalkBob Quesal and Joe Klein join Peter Reitzes to respond to Joshua St. Pierre’s criticism of the National Stuttering Association (NSA). Pierre’s criticism stems, in part, from a StutterTalk interview with the NSA’s Chairman, Gerald Maguire, titled The Future of the National Stuttering Association. 

      Bob, Joe and Peter discuss a number of topics including stuttering, acceptance, treatment, the search for a cure, eugenics, the role of the National Stuttering Association, Did I Stutter?, responses from people who stutter to Josh’s post and much more. In response to Josh’s post and to the work of Did I Stutter?, it is pointed out that the very folks preaching some version of “not about me without me” are perhaps in need of the very same reminder.

      Robert Quesal, Ph.D., CCC-SLP is a professor emeritus of Communication Sciences and Disorders at Western Illinois University, a person who stutters, a fellow of the American Speech-Language-Hearing Association and a retired Board Certified Specialist in Fluency and Fluency Disorders.

      Joe Klein, Ph.D, CCC-SLP is a person who stutters and an assistant professor in Appalachian State University’s Department of Communication Sciences and Disorders.

      Links:

      • Barry Yeoman’s keynote address from the Past, Present and Future of Stuttering Conference (video/text)
      • Dean William’s A Point of View about Stuttering (abstract/partial view)
      • A Tribute to Dean Williams by Robert Quesal
      • The Construction of the Disabled Speaker: Locating Stuttering in Disability Studies by Joshua St. Pierrre (full text)
      • Stuttering, Activism, Disability, Ableism and Informed Consent (StutterTalk Ep. 483)
      • Honest Speech and Stuttering Hospitably (StutterTalk Ep. 488)
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        The Physical Exhaustion of Stuttering (Ep. 582)

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        Sarah Berkowitz

        Sarah Berkowitz joins Peter Reitzes to discuss the physical exhaustion of stuttering.

        This conversation stems from a post Ms. Berkowitz made at Stuttering Arena in which she said, “Does anyone else ever feel physically exhausted from their stutter? Sometimes I feel like I just ran a marathon.”

        Other topics include how and why telling your teacher about stuttering may be helpful, an amazing idea Ms. Berkowitz has to raise stuttering awareness by offering people who stutter the option to have stuttering listed on driver’s licenses and identification cards, her work with the The Stuttering Association for the Young (SAY), how she uses “phrasing” to help manage stuttering and so much more.

        When discussing the physical exhaustion of stuttering, Ms. Berkowitz is asked about the following statement from Did I Stutter?

        “Stuttering is only a problem—in fact is only abnormal—because our culture places so much value on efficiency and self-mastery. Stuttering breaks communication only because ableist notions have already decided how fast and smooth a person must speak to be heard and taken seriously.”

        Ms. Berkowitz responded:

        “I completely disagree with that statement. Stuttering is a problem in itself. We know stuttering is a real diagnosable disorder with a cause and that is not caused by society’s pressure to decide how fast or slow a stutterer should speak. Stuttering itself is separate from what society believes someone should sound like…That makes me feel like people are denying that stuttering is a real problem.”

        Sarah Berkowitz is a 17 year old senior at Adlai E Stevenson High School. Sarah aims for a career working with children with special needs. She is one of the founding Board members of The Stuttering Association For the Young’s Chicago chapter. Recently Sarah performed at SAY’s 14th annual benefit gala and is one of the authors of SAY: Storytellers Vol. 1.

        Links:

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          A Call to Action: Moving Beyond ‘Stuttering is Okay’ (Ep. 581)

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          stuttering, StutterTalkRoisin McManus and Caryn Herring of the StutterTalk B Team join Peter Reitzes to discuss the huge success of the NYC stuttering conference The Past, The Present and Future of Stuttering. Today’s topics emanate from this workshop.

          We discuss Barry Yeoman’s amazing keynote address including topics he raises such as the juncture of “we need a cure and we are the cure” and his hope that “stuttering awareness” becomes “part of workplace diversity training because we [people who stutter] put it there.” Other topics discussed include the language around stuttering such as “pathology”, moving beyond ‘stuttering is okay’ into activism for people who stutter, becoming aware of not participating in the stigmatizing of stuttering and so much more.


          Caryn Herring is a person who stutters and a speech-language pathologist, currently pursuing her PhD at The University of Pittsburgh. Caryn is also an adjunct clinical instructor at Duquesne University, supervising graduate students and teaching the Stuttering Course. She is an active member of numerous stuttering organizations.

          Roisin McManus lives in New York City and has co-led the Brooklyn Chapter of the National Stuttering Association for the past 5 years. She is an occasional StutterTalk host, lead planner of the 20-Something’s Program for the NSA/ISA World Congress in Atlanta this July, and doesn’t mind being referred to as a “stutterer.” She works as an emergency room nurse and recently graduated from New York University as an acute care & palliative care nurse practitioner.

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            Lidcombe Program Outcomes in a Student-Led Stuttering Clinic (Ep. 580)

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            Michelle Swift, PhD, Finders University

            Michelle Swift, PhD, Flinders University

            Dr. Michelle Swift joins Peter Reitzes to discuss her study “Case file audit of Lidcombe program outcomes in a student-led stuttering clinic.” This research is the focus of much conversation right now in the stuttering community.

            While the study reports that student clinicians “can achieve the same short-term treatment outcomes for children who stutter using the Lidcombe Program as those reported in the current published literature,” the study also reports that a small majority of families dropped out of treatment and that, on average, student clinicians needed more sessions per family to achieve positive outcomes. Dr. Swift is asked if other treatments should be used at times instead of Lidcombe or integrated with Lidcombe. Dr. Swift suggests that one possible reason for the high drop out rates is that families sometimes have to switch student clinicians during treatment. At the end of today’s episode Dr. Swift is asked to consider the possibility that such research may lead some to question wether students are qualified to treat preschoolers who stutter with Lidcombe.

            Michelle Swift, PhD, is a lecturer and clinical educator in fluency disorders for the Flinders University Speech Pathology program in Adelaide, South Australia. Dr. Swift is co-author of the new and much discussed study, Case file audit of Lidcombe program outcomes in a student-led stuttering clinic. The study is published in the International Journal of Speech-Language Pathology.

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              Stuttering and Insurance Reimbursement (Ep. 579)

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              Katie Gore MA, CCC-SLP

              Katie Gore joins Peter Reitzes to discuss stuttering and insurance reimbursement. Ms. Gore is asked about general health care terms such as co-pays, “case studies” and victories from her private practice in advocating for clients with their insurance companies, peer-to-peer meetings with insurance companies, how people who stutter and parents may consider advocating for themselves, how speech-language pathologists may consider advocating for clients, pre-authorization with insurance companies, the importance of contacting insurance companies with questions before beginning treatment, using pre-tax income to pay for treatment (such as flexible spending accounts), gap exceptions, diagnostic criteria and codes and so much more.

              StutterTalk reports with great pride that Katie Gore has advocated so hard for clients that she has actually, on occasion, been informed by insurance companies that she has “maxed out” in the number of letters she is aloud to submit on a client’s behalf. Even so, when this occurs, Katie continues to advocate for her clients by assisting them in writing letters to their insurance companies.

              Special thanks to the great Craig Coleman for recommending Katie Gore for today’s topic.

              Katie Gore, MA, CCC-SLP is a speech-language pathologist, Director of Speech IRL and co-leader of the City of Chicago’s chapter of the National Stuttering Association. Ms. Gore made a splash last summer with her post The Australian Budget Lidcombe Proposal Debate: A Primer in Memes.

              Links:

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                The Future of the National Stuttering Association with Dr. Gerald Maguire (Ep. 578)

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                Dr. Gerald Maguire

                Dr. Gerald Maguire, the newly elected Chairman of the National Stuttering Association (NSA), joins Peter Reitzes to discuss the future of the NSA and the role and importance of stuttering self help. On the second half of today’s episode, Dr. Maguire is asked a range of questions about the medical treatment of stuttering.

                Dr. Maguire said that in his role as Chairman of the NSA, it is important to “Remember our legacy and at the same time grow for the future. Our mission is simple and bold as we move ahead. Which is essentially meeting the needs of the stuttering community today while searching for the enhanced treatments of tomorrow.” 

                Dr. Maguire shared that his vision for the future of the NSA includes enhanced fundraising to support the NSA, providing legal counsel to people who stutter related to discrimination, creating a government relations arm and committee, increasing media outreach and funding for stuttering research with a goal of distributing competitive grants in the millions of dollars of range. Dr. Maguire stated that he wants the NSA to “not only be the leading resource for self help, but for education, advocacy and research.”

                When asked about finding a balance between “stuttering is okay” and seeking a cure, Dr. Maguire responded, “I like to say that acceptance and searching for treatments do not need to be mutually exclusive. In my other treatments of brain disorders such as major depressive disorder or bipolar disorder, the individual with the disorder accepts the condition but they also accept the nature of the treatment for the condition – things that they have to do to lead a more functional life and a better outcome…”

                Dr. Gerlald Maguire is the new Chairman of the Board of the National Stuttering Association, Chair of Psychiatry in the University of California’s Riverside School of Medicine and a professor of psychiatry, is the Kirkup Center Chair in Stuttering Treatment and considered by many to be the leading authority on the medical treatment of stuttering.

                Links:

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                  Let the Stuttering Rip (Ep. 577)

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                  Darren Johnson

                  Darren Johnson joins Peter Reitzes to discuss letting his stuttering rip. Mr. John shares his experiences of stuttering openly, focussing on “shame busting,” the challenge of showing the world his open stuttering, the chore and physical effort of stuttering, his desire to engage and communicate more productively with the world, how being African American impacts his experience of stuttering and so much more.

                  Today on StutterTalk, Mr. Johnson shares, “The pressure that I feel to be fluent is mostly the result of me wanting to be like everybody else…Look, this is what it is. You stutter; you can either accept it or wallow in it…Fluency has just become something that I find is not necessary and I would rather just be happy with being myself and doing the things that I want to do despite my stuttering.”

                  This is StutterTalk’s fourth and final episode in a series featuring New York City members of the National Stuttering Association (NSA). On Sunday, May 15th, the NYC Chapters of the NSA will hold their first local stuttering conference. It will be a day to support, educate, and empower stutterers as they explore The Past, Present, and Future of Stuttering. Event details here. Mr. Johnson is asked to discuss this workshop which is expected to draw 50-60 people who stutter.

                  Darren Johnson is a 22 year old graduate student who is originally from Maryland and joins us today from Manhattan where he is pursuing a PhD in chemical biology at Weill Cornell Medical College.

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                    The Struggle Gives Power (Ep. 576)

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                    Spring Kwok

                    Spring Kwok joins Peter Reitzes to discuss the power of struggle, the balance between acceptance and wanting to change and how being a first generation Chinese American woman impacts her experience of stuttering.

                    This is StutterTalk’s third episode in a series featuring New York City members of the National Stuttering Association (NSA). On Sunday, May 15th, the NYC Chapters of the NSA will hold their first local stuttering conference. It will be a day to support, educate, and empower stutterers as they explore The Past, Present, and Future of Stuttering. Event details here. Ms. Kwok is asked to discuss this workshop which is expected to draw 50-60 people who stutter.

                    Regarding identify, Ms. Kwok shares today on StutterTalk:

                    “We each own multiple intersecting identities that not only define who we are but also how we experience the world. These identifies not only conceptualize who we are, but they are also dynamic in that they are always changing. They can either confirm power or be marked by discrimination. For me, the largest identifies I see myself as are being Chinese, being a woman and of course being a stutterer. Those three have definitely molded my experience…As a child we lack an objective understanding of the shame that we feel for being different. We feel it, but we don’t necessarily understand it. The idea of being different for me growing up was not only in how I looked, but also in how I talked…Each of these three strong identities in me do have very powerful cultural and social implications…They have made me who I am. With being Chinese of course there are a whole slew of stereotypes. Being female there are a lot of things I need to live up to. And of course, being a person who stutters there are stigmas I have to avoid…I think stereotypes of any group is extremely harmful and they generalize billions of people into one model minority. And I think it is really dehumanizing and I think that is slows down self discovery…That has been my experience…These stereotypes have kind of simplified me into a broad spectrum and it has bread a lot of ignorance, not only in the people around me, but also in how I see how I am.”

                    Spring Kwok, 21 years old, hails from Houston, Texas and joins StutterTalk today from Manhattan where she is a senior at New York University studying Economics.

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