About 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, 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 stutterer “depends 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.
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.
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 psychology, 97(4), 634–651. https://doi.org/10.1037/a0015815
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