What’s in a Name: The Influence of Words on the Perceptions and Identities of People Who Stutter – Steff Lebsack, Dan Hudock

Steff LebsackAbout the Authors:

Steff Lebsack, MS, CCC-SLP (PWS), became a speech-language pathologist because she has an older brother, Jasper, who is a person who stutters. Steff also began to stutter at the age of 37 due to a hypoxic brain injury. Steff is a PhD student at Idaho State University, with her attention on research in stuttering. Steff focuses on the treatment of stuttering and cluttering within her private practice and is the current course designer/instructor for the graduate Fluency Disorders course for the Baylor University online Master’s Degree Program. Steff has completed many invited guest lecture talks and international poster presentations, with her recent meta-analysis on language sensitivity in chronically-ill pediatric patients being accepted by the American Academy of Pediatrics. She lives with her husband Kevin, her two beautiful young children Mary and Karter and a pug named Ritchie. When she isn’t playing with her kids or catching up on stuttering current events, she can be found baking, writing or reading.

Dan Hudock

Dan Hudock, PhD., CCC-SLP (PWS), a person who stutters himself, is an Associate Professor of Communication Sciences and Disorders at Idaho State University. He is also the Founding Director of the Northwest Center for Fluency Disorders that offers a two-week interprofessional intensive stuttering clinic (NWCFD-IISC) with Speech Language Pathologists collaboratively working with Counselors and Psychologists to treat adolescent and adult clients who stutter through Acceptance and Commitment Therapy (ACT) informed frameworks. His areas of research include psychological, emotional, and social factors of fluency disorders, interprofessional collaborations with mental health professionals, and the neuroscience of speech perception and production in people who stutter using high-density EEG. He has over 30 peer-reviewed publications, 80 international through local presentations with several recent ones being invited keynote and full day talks, and one TEDx Talk entitled “Please don’t finish my sentence” about the experience of living with a communication disorder.

Language and the use of language, especially terms that have historically been used to define or categorize groups of people, have been laden with conflict and negativity. On one hand, when members of a group use specific terms to define their own group(s) it can be empowering, may cultivate and enhance senses of belonging, inclusion, and community. It can also help to reclaim the term and dispel negative pejorative connotations imparted by society, when the term has been used, and bastardized, by people outside of the group. As such, there have been many instances throughout history when terms have been used with negative intent to demean, dehumanize, and subjugate groups of people. Some of the most easily identifiable are in relation to race, culture, intellect, skills / abilities, or political views etc. Furthermore, when thinking about language and the terms that we choose to use to describe experiences or people they can impose a powerful influence on emotional state, self-perception, and identity. 

Language and specific terminology is also frequently used to describe physical attributes or actions / behaviors. For example, in the early 1900’s the term stutter was used to describe atypical speech behaviors, which we now more commonly call stuttering-like-disfluencies (SLDs). At that time, the term(s) dysfluency or disfluency were used for more normal-like non-fluencies (e.g. the repetition of whole words or phrases.). In the case of stuttering and people who stutter (PWS), Speech Language Pathologists (SLPs) have historically and frequently defined and described stuttering based on their observations of the speech characteristics, disfluencies, and stuttering-like behaviors that one produced. However, more recently the call to arms has been put forth, and reiterated multiple times, to define and describe stuttering through the lens of the person who is actually speaking, the person who stutters themself (Tichenor & Yaruss, 2019). In their study (one of several recent studies examining a similar line of research and trend), Tichenor and Yaruss asked 430 PWS to define stuttering for themselves and much of what they described revolved around their lived experiences, emotions, thoughts, identity, and functional impacts that they have experienced from living with a stutter. 

Person-First compared to Identity-First Language

The use of person-first identity (person who stutters or I stutter) as compared to identity-first terminology (stutterer) within the stuttering community has been debated amongst researchers and vested individuals for many decades. Person-first identity became largely advocated for in the 1980’s in an effort to increase sensitivity and decrease social stigmatization. Person-first language indicates that an individual is a person first, and that the second term preceding the “person” label is of less importance, therefore not defining the person. Contrastively, identity-first language may be preferred by some individuals who stutter as a sense of pride and ownership of their individualized stuttering experience. Being called a “stutterer” may feel empowering to the person, and refraining from using this term could indicate avoidance of an entity that is such a big part of a person’s life. Interestingly, in 1999, St. Louis examined the preference for person-first and identity-first amongst people who stutter, parents of children who stutter, SLP students, and people in the general public. The findings revealed that person-first language did not decrease sensitivity and had little effect toward public negative attitudes regarding stuttering. St. Louis further went on to say that the identity labels of “stutterer” and “person who stutters” needed to be considered “carefully and individually.” 

People who stutter are tasked with the choice of how to identify themselves within their own stuttering experience should they choose to do so. Identities can even waver based upon previous speech therapy experiences (e.g. if an adult who stutters was forced to employ fluency shaping strategies during speech therapy services as a child with a fluency therapy focus that traumatized their stuttering experience and/or made them feel not good enough as a communicator early on in their life). In her book, Stutterer Interrupted the Comedian who Almost Didn’t Happen, Nina G. indicated her personal preference for using the terms person who stutters or stuttererdepends on (my) audience.” She prefers to use the terminology of a person who stutters when addressing professionals so as to show that people who stutter are “more than a diagnosis”, but if she is speaking to a friend, she uses the two identifiers interchangeably. She stated that she is proud to call herself a stutterer as stuttering is a really big part of who she is and positively contributes to her sense of self and identity.

In Erin Schick’s blog entitled Did I Stutter? (2015), he takes an identity-first perspective, citing that the use of person-first language causes stuttering to feel like a “defect” that not all individuals find respectful. Furthermore, Erin goes on to state that the use of person-first language is used only within those identities that are stigmatized and is not expected of those who are non-disabled as if to call someone, “a person who does not stutter”. The blog posting is summarized powerfully, stating that some individuals prefer person-first language while others prefer identity-first language, and it is “their right to choose the language of their identity”.

Within-Community and Outside Societal Semantic Perspectives

Within the stuttering community itself, individuals who stutter even debate semantic differences and acceptable terminology in reference to stuttering. In a public speech in February of 2020, the now President of the United States, Joe Biden, indicated that he “overcame” his stuttering and shared his lived stuttering experiences. This set the stuttering world ablaze, with countless discussions on use of the word “overcome”: does “overcome” mean that his overt stuttering characteristics are now absent or he thinks that they are, or does it indicate that he “overcame” emotional grievances and negative thought processes in reference to his stuttering. Joe Biden’s usage of the word “overcome” on the worldwide platform was viewed by some to devalue and dehumanize the lived stuttering experience, while others were able to recognize President Biden’s usage of terminology within his own stuttering experience exactly for what it was: his own experience. But did his usage of the word affect societal stereotypes or play into the already presumed negative stigma of what society thinks of stuttering today: that stuttering is something that can be cured, overcame or fixed? What terminology do we as a stuttering community want society to know and use when it comes to the nature of stuttering? 

Stereotypes and the nature of stuttering still largely come into play when people who stutter interact in their day to day lives. People who stutter may be presumed to be less intelligent than others, may be thought to have dementia, or may even be assumed to be intoxicated. Therefore, it is imperative that the general public and those that are fluent come to realize that there really isn’t universally accepted terminology when it comes to stuttering, even within its own community; it is clearly an individualized person-by-person basis. It may not be pragmatically acceptable for an individual that is fluent to call a person who stutters a “stutterer” or a “person who stutters” without first asking what that particular person prefers.           

Hidden Identity and Social Stigma

According to Hagstrom and Daniels (2004), people may develop many social identities secondary to varied social interactions. An individual who stutters may be perceived to be fluent on the surface, but that person may have perceptions, routines or a personal history of stuttering that could be relevant to a social identity. Individuals who stutter may decide to conceal their identity from the outside world. According to Quinn and Chaudoir (2015), individuals who hide their identity from others, may anticipate that others will devalue them should their identity become common knowledge and this anticipation becomes a predictor for psychological distress and poor health, but this is not the case in all individuals. Some individuals may have negative outcomes from living with a concealed identity and social stigmas, while others do not. Many people, whether living with a visible identity or concealed identity can live a happy and resilient life but be sure to take note that this research states “many people” not “all” people therefore reemphasizing the individualized nature of social identities, stigmas and the lived experience. A more recent study  with adults who stutter conducted by Gerlach et al. (2021) found that stigma-identity thoughts and behaviors were reliable in indicating the adversarial impact of stuttering on the quality of life, but that the psychological health outcomes regarding lived experiences in adults who stutter were varied and not always negative when compared to fluent speakers. 

Given what we know about the individualized nature of the stuttering experience, the humanistic ability to create multiple identities and a person’s acquired social stigmas, is there a “right” or “wrong” identity for a person who stutters? No. A person’s identity within their own stuttering experience is not a concept of debate, should be a personal choice and should be respected, listened to and validated by the people around them.  

Therapeutic Application and The Need for Change

Far too often, people who stutter are continuing to have personal accounts of a generalized lack of attention to their individualized preferences during speech therapy services as clinicians are oftentimes still approaching stuttering treatment with a standardized and systematic (versus individualized) approach. Although the usage of person-first language may be “well intended” using person-first language, even by scholarly authors, may be imposing unintended bias between disabled and non-disabled individuals and therefore actually increasing the stigma; the opposite of the initial intentions of person-first language usage (Gernsbacher, 2017). Speech therapy services must be calibrated to the individual being served. The therapeutic alliance, or trust relationship, between clinician and client relies heavily on not only the clinician’s innate empathy, but also the clinician’s ability to recognize the client’s self-actualization process with the experience of stuttering (Manning and DiLollo, 2018). Speech-language pathologists must take into consideration the preferred language of choice when it comes to the identity of a person who stutters in the therapy room or the therapeutic alliance and clinical experience for the person who stutters in entirety could be in detriment. Given that some individuals have negative effects from concealed identities and social stigmas while others do not indicate that people who stutter should also not be forced therapeutically to identify as a person who stutters until they are ready to do so.

The word SPEAK can represent the coexistence and acceptance of all terminology, narratives and viewpoints of people who stutter across the world. 

S: Stutterer

P: Person-First

E: Empathy  

A: Acceptance

K: Kindness 

For us, this year’s ISAD theme of Speak the Change you Wish to See represents the individualized preferences of people who stutter, changing over time through experience. It must be taken into consideration therapeutically when it comes to social identity and stigmas and the lived stuttering experience. Although still frequently seen in clinical practice, we have reached a time when it is no longer the attitudes and opinions of the Speech-Language Pathologist that steer the direction of therapy, but rather, it is the client’s individualized thought process of their own stuttering that is of the utmost importance. It is their stutter not ours, and to impose our own identity onto the identity of the clients we serve can be demeaning, devaluing and have a traumatizing effect on their lives. We must listen to the people that we serve who stutter and respect, embrace and incorporate their lived identity within our clinical practices. 

 

References:

G., N. (2019). Stutterer interrupted: The comedian who almost didn’t happen. She Writes Press.

Gerlach, H., Chaudoir, S.R., Zebrowski, P.M. (2021). Relationships between stigma-identity   constructs and psychological health outcomes among adults who stutter. Journal of Fluency Disorders, 70. 1-16. https://doi.org/10.1016/j.jfludis.2021.105842

Gernsbacher, M.A. (2017). Editorial perspective: The use of person-first language in scholarly writing may accentuate stigma. Journal of Child Psychology and Psychiatry, 58 (7). 859-861. https://doi.org/10.1111/jcpp.12706

Hagstrom, F., Daniels, D. (2004). Social identity and the stuttering experience. Contemporary Issues in Communication Sciences and Disorders, 31. 215-224. 

Manning, W., DiLollo, W. (2018). Clinical Decision Making in Fluency Disorders, Fourth Edition. Plural Publishing.

Schick, E. (2015, 05 04). Problems with person-first language. Did I Stutter? https://www.didistutter.org/blog/problems-with-person-first-language#comments

St. Louis, K. (1999). Person-first labeling and stuttering. Journal of Fluency Disorders, 24. 1-24. 

Tichenor, S., Yaruss, J.S. (2019). Stuttering as defined by adults who stutter. Journal of Speech-Language and Hearing Research, 62. 4356-4369.  

Quinn, D. M., & Chaudoir, S.R. (2009). Living with a concealable stigmatized identity: the impact of anticipated stigma, centrality, salience, and cultural stigma on psychological distress and health. Journal of personality and social psychology97(4), 634–651. https://doi.org/10.1037/a0015815

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Comments

What’s in a Name: The Influence of Words on the Perceptions and Identities of People Who Stutter – Steff Lebsack, Dan Hudock — 17 Comments

  1. Hello Steff and Dan, what a great paper. As an aspiring SLP your paper opened up my eyes to a topic that I thought was a no brainer. In my studies I was taught that People First was the only way (politically correct). Not once did I think that people first might be offensive. People first has been drilled in us as a sign of respect for people with disabilities or disorders. Do you think that both terms, People first and Identity first require a curriculum update in an educational setting?

    • Hello, Gina. Thank you so much for your comment and compliment on our paper. I too, learned people first language was the only way to go and we are now seeing a shift in this on an individualized basis, even in other diagnoses like autism. I do believe that people first language and identity first language should be introduced in the textbooks as research is now showing that individual preference is the way to go regarding identity and preference.

  2. In this new age of political correct language, we are learning that we can no longer use one term to describe a group. After all, each and every single one of us is a unique person with our own experiences, journeys, traumas, successes, etc., etc, etc. Some prefer one term over another.

    And context plays a large role, too. When I worked for a hospital for kids with disabilities, our brand voice was person-first language because our vision was a world with possibilities. “Kids with autism” was a lot more respectful than us using the term “autistic kids”. No doubt if we ask a group of people with autism what term they’d prefer, I’m sure each would have their own preference just like us stutterers,

    Also, when I wrote my book, I got tired of writing “people who stutter” over and over and over, sometimes even in the same sentence. It just got cumbersome.

    Language does matter, however, I don’t think there is a one-word-fits-all and it all boils down to respecting the individual’s preference/comfort level/etc.

    • You are spot on, Daniele, and thank you so much for your comment on our paper. The most current research on this, as our paper indicated, is that is truly comes down to individual preference. Even with the term “autistic”, which is now the current trend, this is still found to be an individualized preference (even though in my schooling I learned that it was ‘person with autism’ and this was back in the 2007-2009 era). I am enthralled with stories of personal journey and love hearing a given story of how someone loves to be called “person who stutters” or “stutterer” or either/or and why- or if someone likes neither term and why; either way it is important and must not be discounted in the therapy room or within society.

  3. Steff and Dan:

    Thanks much for this very in-depth look at the topic of identity-labels. Being especially interested in the topic, I found it very illuminating and an enjoyable read. I believe “labels” are very helpful that they provide a clear base from which a person can build and stay better focused on their goals and how they view themselves.

    As far as the group label, any is fine with me. As you mentioned the self-identity is crucial. I go into the world as uniquely Ron Roman, and I view and intro my speaker self as I personally feel is accurate.

    I’d like to contribute to this discussion the only way I really can. The literal meaning of some labels I found pertinent in my personal journey.

    I came into the world as a “Stutterer,” meaning having the hindrance. Over the years, my feelings towards being a “Stutterer” were directed towards it. Anger, wishing it was not, etc. Being a “stutterer” did not create any negative feelings about myself. After all, I was handed the hindrance, no fault of my own, nothing I did wrong, no failure on my part.
    My speech related negative feelings came from being a PWS, “Person who Stutters.” When I stuttered it just felt bad. The reason was always in the back of my mind but I never really gave it active thought. But finally, for whatever reason it came to the forefront. I did not view myself exactly as a PWS, but rather a PWAS, “Person who ALLOWS stuttering.” Without going into the therapy topic, at that point I was capable of being a “Person who does not allow stuttering.”
    My present label. I was and will always have the hindrance, a “stutterer.”. When I was a stuttering speaker, I had my share of fluent words and sentences. But instead of stuttering as the rule it is now very much the exception. I feel comfortable introducing myself as a “Smooth speaking stutterer.”

    Thanks again for this very meaningful submission.

    • Ron,
      Thank you so much for sharing so much of your journey of stuttering with us and for your kind comments on our paper. I have never heard PWAS, but that is rather insightful and I follow where you came from with that. Identity truly is so meaningful and so important, and I am so thankful that you shared yours. Be well, and thanks again. -Steff

  4. Hi Steff and Dan. This was a very interesting read. I’m currently enrolled in a class on fluency disorders. Over the course of my studies so far, I’ve seen examples of person-first language, such as “person who stutters,” “adult who stutters,” and similar terms, used more frequently than examples of identity-first language when discussing people who stutter.

    Reading this article really helped me change my perspective regarding labels, because it provided insights about how much the experiences of a person who stutters can shape whether that person prefers person-first or identity-first language.

    I agree that a client’s preference for either person-first or identity-first language should be taken into consideration during therapy. I believe that this individualization, along with the individualization of therapy based on each client, can go a long way in helping people who stutter.

    • Arianne,
      Thank you so much for your comment and for reading our paper. I do agree with you as well, that I also hear person-first language more frequently within the stuttering community, and this is also what we often are taught in graduate school as aspiring SLPs. Congratulations on your collegiate career, and best wishes in your future endeavors! This is truly a rewarding field. Thanks,
      Steff

  5. Dear Steff and Dan,

    This was such a wonderful read. I really appreciate the deep and comprehensive approach you took to analyze the terminology used for people who stutter, and how it ultimately comes down to what that particular individual prefers for themselves based on their unique experience with stuttering. I found your discussion of the controversy surrounding Joe Biden’s described experience of “overcoming” his stuttering particularly interesting. Do you think that, as a person with such a large platform and in such a powerful and prominent position, President Biden can effect change in the stigma surrounding stuttering and people who stutter? If so, what would be the best approach for him to do this?

    • Laura,
      Thank you so much for your kind comments and for reading our paper. I do feel that President Biden can help break the stigma on stuttering given his large platform on a world-wide level. Given that he uses the word “overcome”, some individuals in society may take this word to mean “rid of” or “cure”, when given his personal narrative this may or may not be what he is meaning here. I feel that perhaps if he explained his individualized narrative further- either via a documentary or a longer news reel devoted to just his journey with stuttering- to clarify how he feels, as he does still identify to be a person who stutters, and what that means for him. If he were comfortable he could perhaps even explain times during speeches that he has circumlocuted words or phrases, etc (times that perhaps the general public has mistaken this for forgetting things, etc. when really these could have been possibly attributed to moments of stuttering versus forgetting; one of the stereotypes of stuttering). That was such a good question. 🙂 Let us know if you have any further questions, and thanks again.
      Thanks,
      Steff

  6. Steff and Dan,

    As a second year graduate clinician, I found this article extremely eye-opening. As students, we are taught that person-first language is always preferred. Having provided therapy to several fluency clients, I have had people prefer both terms. I loved the insight this article provided on the power of semantics in the stuttering community. As speech pathologists it is our job to know the impact that language has. I loved the example of the word “overcame” for the word does hold a negative tone as though disfluency is something to overcome. This was an important reminder that we provide individualized therapy, thus it is appropriate to use individualized terminology.

    • Hello! Thank you so much for reading our paper and for your kind comments. Best wishes in your studies, and yes- language usage even in the therapy room is so important on an individualized basis. Be well. 🙂
      Thanks,
      Steff

  7. Hi Dr. Hudock and Ms. Lebsack,

    What an informative read! I really enjoyed reading the evolution of different ways of self-identifying, both in the research and from personal anecdotes. I also learned a lot from the comments, particularly rroman’s reply post where they shared their thought processes and lived experience. Thank you, rroman, for sharing your story!

    One point that you mentioned has stuck with me: in the “Therapeutic Application and the Need for Change” section you wrote “Given that some individuals have negative effects from concealed identities and social stigmas while others do not indicate that people who stutter should also not be forced therapeutically to identify as a person who stutters until they are ready to do so.” As a graduate student preparing to work on my own without a supervisor, I’m wondering how you would know if someone is not ready to identify as a person who stutters or a stutterer? I’m imagining this could come up after an evaluation of someone who demonstrates covert stuttering or possibly a child who doesn’t want to be different. Or was that observation more applicable to someone we might be seeing that seems to have a negative reaction to any attempt at self-identification, in which case we would want to give them some space and not feel pressured to self-identify with stuttering in any form?

    Thank you again for your well-written presentation. It was a great reminder of why it’s important to attune to our clients’ emotional connection to their communication.

    • Vida,
      Hello! Thanks for your kinds comments on our paper, and for your lovely questions. Through my therapeutic experiences, I have found that through asking questions to the person you are serving, you can find out if they are ready to identify as a person who stutters yet- even if the person doesn’t blatantly say it. They may tell you, “I don’t stutter.” or something like “I used to stutter but don’t anymore.” The person may not call their stuttering, “stuttering”, or they may just outright tell you that they do not identify as a person who stutters or Stutterer and tell you the reason why. Either way, we as the clinicians are tasks with meeting the person where they are at in their journey, wherever that is, without forcing identity on that person when they aren’t ready. 🙂 I hope that helps! Take care, and be well.
      Thanks,
      Steff

  8. Good evening, Ms. Lebsack and Dr. Hudock.
    I want to say that this paper was an exxellent read and brings forth the importance of how the individual experience plays a major role in identity. I appreciate this paper because I learned so much about how labeling can be hurtful and can disregard a PWS feelings. I want to say thank you to both for opening my eyes to this. As a student and future SLP I would never want to disrespect a PWS with person-first language but now that I am aware of how it might, I will be sure to ask PWS what their preferred language is or if they have one at all. I shall do what is most comfortable to them. I also want to thank you both for shedding light to another way SLPs can be and show respect to their clients.

    I was wondering if research has shed light on term that does not have so much debate?

    • Hello! Thank you for your kind comments and for reading our paper. Best wishes in your studies, and I am so glad that this paper helped out as self-identity is so important in the therapeutic process. Terminology also has debate with regards to personal preference as individuals are going to interpret a given term depending on their past experiences. We are starting to tap in to terms like “fluency”, “overcome” and terms that are more heavy/controversial than even the terms “person who stutters” versus “Stutterer” but are equally as important. I had a graduate student project that I supervised in the past that looked at generalized terms used very loosely in our field and how novice individuals (like parents, for example) may interpret those terms. One of the terms looked at (via survey) was the term, “intelligibility) and most parents of young children thought that the term was referring to (wait for it…..) level of intellect. SLPs often use this term in front of parents very ease-fully with no thought in front of parents in IEP meetings… when a parent may automatically assuming you are speaking of a child’s smarts so to speak, and nothing to do with speech-sound understandability. It just goes to show that we have to be careful with what we say, ask the people we are serving what terminology they prefer to use within their own stuttering journeys and be sensitive to how we say things. 🙂 I hope that helped! Be well, and take care.
      Thanks,
      Steff

      • Yes it has.
        Thank your for expanding. I want to share that in undergraduate studies we are being taught to use our words carefully especially around parents so that they are fully aware and understand.
        Thank you, for taking time to reply.

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