About the authors:

Daniel Hudock, Ph.D., Certificate of Clinical Competence of Speech-Language Pathology (CCC-SLP), is an Assistant Professor at Idaho State University in Pocatello, Idaho, USA. As a person who stutters himself, he is very passionate about fluency disorders and helping those with fluency disorders. He currently serves on the International Cluttering Association and International Stuttering Association website committees, is the Northwestern Regional Chapter Coordinator for the National Stuttering Association in the United States, and is a Chapter Leader for the NSA’s Southeastern Idaho Chapters. He is a regular presenter at conferences and has several publications. His research interests are exploring: the communicative process during the observation of normal and disordered speech using eye-tracking, biobehavioral and neurophysiological measures, stuttering inhibition during the perception of second speech signals, EEG temporal and spectral components for sensory and motor involvement and integration during speech perception and production, and forming effective collaborations between Speech-Language Pathologists and Mental Health Counselors for the treatment of people who stutter. He is also Director of the Northwest Center for Fluency Disorders, which hosts a two-week summer intensive clinic. For more information about research, clinical, or support opportunities please visit http://www.northwestfluency.org/.

Dr. Nicholas Altieri, PhD is an Assistant Professor at Idaho State University. His research investigates speech and language perception, including the extent to which listeners benefit from visual speech under different listening conditions. He has worked to develop and apply capacity measures to investigate efficient information processing, auditory-visual integration, and brain functioning in normal-hearing and hearing-impaired listeners.

Jody O’Donnell, M.S., Certificate of Clinical Competence in Speech-Language Pathology (CCC-SLP) is a Clinical Assistant Professor at Idaho State University. Her expertise is in school age speech and language disorders with a special interest in fluency disorders given over 20 years working as a SLP in public schools and recent participation as a clinical supervisor at the Northwest Center for Fluency Disorders (NWCFD) Interprofessional Intensive Stuttering Clinic (IISC) in Pocatello, ID USA.

Sarah Knudson, MS-CCC-SLP, is a Clinical Associate Professor and Clinic Director at Idaho State University. Her primary interests have been in working with people with Autism, and school age speech and language disorders. Sarah is a member of Northwest Center for Fluency Disorders (NWCFD), and recently supervised the inaugural Interprofessional Intensive Stuttering Clinic (IISC) in Pocatello, ID USA.

Why we should all use “people first” language

Stutterer or Person who Stutters (PWS); why we should all put the person before the disorder and use “people first” language

Daniel Hudock, Nicholas Altieri, Sarah Knudson, and Jody O’Donnell; Department of Communication Sciences and Disorders, Division of Health Sciences, Idaho State University

Correspondence concerning this paper should be addressed to Daniel Hudock, Ph.D., Department of Communication Sciences and Disorders, Division of Health Sciences, Idaho State University, 921 South 8^th Ave, Mail Stop 8116, Pocatello, ID 83209-8116, USA. Phone: (011) 208-282-4403; Fax: (011) 208-282-4571; E-mail: Hudock@isu.edu, website: http://www.northwestfluency.org/

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 “But if thought corrupts language, language can also corrupt thought”
– George Orwell, 1984

Introduction

George Orwell’s quote concerning the impact of language on collective thought patterns perhaps provides the best illustrative introduction to the main aim of our paper. The primary aim is to encourage the use of “people first” language, putting the person before the disorder, to describe those with fluency disorders. Here, we mean use of terms such as people-first language: “people who stutter” (PWS), or “I stutter” rather than “stutterer” or “stammerer”. Describing a speaker as a “stutterer”, we argue, has the potential to instill negative stereotypes through the use of a label that intimately associates personhood with a fluency disorder.

This type of labeling, even when inadvertent and otherwise not malicious, is of course not limited to individuals with fluency disorders, or even those with medical problems or other developmental or physical abnormalities. Historically speaking, cultures have during many points defined and referred to groups of people by outward characteristic features of individuals from that group. This may be witnessed when large groups of non-native people move from one country to another, and their new country places them into lower social class rankings by using terms that have a demeaning effect—even when that was not the original intent. To use an example, this may be illustrated using the historical context from the 1800’s when groups of immigrants willfully moved or were sold into slavery in the United States of America. People from Ireland, China, and Africa were subjugated and placed in lower social rankings. Many factors of course conspire to produce social class rankings, and the discussion of these is beyond the scope of this paper. However, one factor that can be identified, and one that we have immediate control over, is the avoidance of the use of physical descriptions (i.e., easily identifiable group characteristics) instead of allowing them an identify that supersedes the descriptor.  Examples of these, from the historical perspective, may be referring to someone as an “Irishman” or a “Chinaman” instead of a “person from Ireland” or a “person from China”.  Likewise for clinical cases, it is deemed offensive to refer to someone as a “retard” or a “schizo” instead of a “cognitively impaired” or “mentally ill” person.[1]

Therefore the notion that we, as an advanced scientifically oriented society, understand the socially unacceptable and acceptable use of group classifiers brings into question why the dehumanizing terms “stutterer and stammerer” are still commonly used. These classifications of individuals who stutter are used in the general public, media, and even by practicing Speech-Language Pathologists.  We understand the inappropriateness of using dehumanizing language when referring to ethnic groups and some groups of individuals with disabilities, so why the delay in understanding and implementing appropriate use of language when referring to people who stutter?

Language and the Educational System

In 1976, the United States Congress passed Public-Law (PL) 94-142, which protected rights of children with disabilities in the public education system; note the use of person first language in the terminology. Decades later, in 1990, the Americans with Disabilities Act PL 103-336 was enacted and titled using person first language. In 1990 PL 94-142 “The Education of All Handicapped Children Act” was reauthorized and renamed PL 103-476 “The Individuals with Disabilities Education Act (IDEA)”— both of which maintain the person first identifiers and language throughout the documents.

Significantly the 1990 IDEA legislation specifically describes people first language and recommends that it be the default language when describing people within the affected populations. It states “language intentionally and unintentionally propagates stigma: the mark of dishonor, disgrace, and different that depersonalizes people, depriving them of individual personal qualities and personal identity. Stigma is harmful, distressing, and marginalizing to the individuals, groups, and populations who bare it” (p. 218, Broyles, et al., 2014). This is not without significance at the level of the individual person. Individuals who are stigmatized have higher rates of depression, social isolation, lower self-esteem, and poorer academic performance (Blood, et al., 2003; Crocker, et al., 1999). Woods (1978) presented Speech-Language Pathologists and School Teachers stories of a school-aged boy that either directly mentioned that he was a “stutterer”, or did not mention his speech. Results revealed that both groups were significantly more negative in their ratings of the “stutterer” (more nonassertive, tense, insecure, and afraid to talk). Woods interpreted these results that listeners’ reactions and stereotypes shape the clients behaviors. Using such labels when describing groups of people emphasizes the disorder and takes away from the individuality of the person affected. As depicted in the 1990 IDEA legislation the person should not be defined by their disorder, but should be defined by their own merits.

“Stutterer/stammerer” has the unfortunate effect of reinforcing negative stereotypes and stigma associated with the behavior. It gives the general population permission to hold PWS in lower social standings both inside and outside the classroom and possess control over us as a population. Not surprisingly, many people who stutter report feeling “less than human” and do not perceive themselves as equals to their fluent counterparts (Iverach et al., 2011). This may occur in part due to the use of such dehumanizing terminology—a problem that can readily be remedied through proper education.

When developing a stigma, there is public opinion of that stigma, which we have described, but there is also an internalized belief influencing the stigma. Blood, et al. (2003) reported that younger adolescents between 13-15 years old perceived an increased stigma and negative consequences when compared to an older teenager group from ages 16-18 years old. Another interesting finding from this study was the internalized stigma that, 60% of the respondents rarely or never talked to anyone about their stuttering. Being a Speech-Language Pathologist and PWS, the first author has experienced this both personally and professionally. First author – “My family never talked about stuttering growing up, even though I had family members who stuttered. I was in speech therapy from a very early age and would openly talk and often be reprimanded for not using my fluency enhancing techniques. Unfortunately, we never truly talked about stuttering. A majority of the clients who stutter that I have worked with over the years have reported similar events. They report feeling that they don’t have the right to talk about it, or because the Speech-Language Pathologists does not bring it up, they don’t know how to or don’t think it is appropriate to talk about. “

The Stuttering Foundation of America (SFA) has a webpage that sets the foundation to break this stigma (http://www.stutteringhelp.org/stuttering-myths-beliefs-and-straight-talk-teens). Recently, Boyle (2013) created an assessment of stigma associated with stuttering (Self-Stigma of Stuttering Scale) that is used to measure public and self-stigma as a metric for improvement. A foundational point from items on the SFA’s webpage and the Stigma Scale are to talk about stuttering, not just the use versus non-use of techniques. By understanding stereotypes and stigmas associated with stuttering, clinicians can help alter their beliefs to increase holistic functioning and decrease impact on the individual. One such way is to use appropriate terminology that is not dehumanizing to individuals from a specific group, but rather language that puts the person before their disorder and empowers individuals from that group.

Implications for Treatment

The emphasis on person-first language brings with it broader implications for therapeutic and clinical theory. Traditional clinical approaches for addressing stuttering and fluency disorders have been based on achieving fluency (Blomgren, 2013; Euler, et al., 2014). This approach is, in some respects, a logical consequence of a failure to use person first language, and instead, refer to clients as “stutterers”. After all, if a client is a “stutterer”, achieving fluency ought to be the goal. Alternative approaches—based in part on the emphasis of the importance of interdisciplinary and inter-professional education—pursue a more holistic avenue (Iverach & Rapee, 2014). Here, fluency itself is not the goal per se; instead, overcoming and confronting the social-emotional barriers that have resulted from the disorder become paramount (Blomgren, 2013; Iverach & Rapee, 2014). Fluency enhancing strategies, while still utilized, thus begin to play a slightly different role in therapeutic settings. Instead of acting to change the “stutterer” and transforming him or her into a fluent person, the aim is to guide the individual who stutters accept themselves, while gaining enhanced social confidence by improving verbal and non-verbal communication techniques (Lee & Manning, 2010). Fluency is not the goal – communication is the goal.

Conclusion

Using people first language is a commonly used practice in many social spheres that promote confidence, acceptance, and inclusion from individuals within groups (Broyles, et al., 2014). As such, these terms and language that promote recovery should be our default semantics when describing populations. The stigma associated with non-people first language is most explored in the substance abuse literature and should be used as a comparison in this instance.

As one recovers from using substances and may reside in an infinite state of recovery (never truly being healed), a person who stutters may recover from stuttering in the sense that they decrease the negative impact and control that stuttering has on their life. The authors of this report strongly advocate for incorporating the use of disclosure statements such as “I stutter, I am a person who stutters”, or voluntarily pseudostuttering when introducing one’s self and use this in common practice during our two-week interprofessional intensive stuttering clinic. If directly stating that you stutter, it should be done using people first language. Using people first language starts to break the negative stereotypes associated with stuttering and increases self-confidence. Although changes in societies take decades, if not longer, the starfish analogy may be applied; I may not make a difference to all of the starfish washed along the beach, but by throwing one back in the ocean made a difference to that one’s life (Dean, 1986). By using people first language and confidently stating “I stutter or I am a person who stutters” your listener may interact differently with the next person who stutters that they meet. If we use the term “stutterer or stammerer” our communication partner may call someone by that name, which re-instills the cycle of dehumanization for another person. We should follow societal appropriateness and congressional legislation for the benefit of all of us who stutter.

 

For a list of “person first” phrases please visit the following websites:

http://odr.dc.gov/page/people-first-language

http://www.familytofamilynetwork.org/parent-resources/people-first-language

[1] One fascinating historical example of a failure to use “person first” language involves the famous Russian neuroscientist V.M. Bekhterev. According to one common account, he openly referred to the Soviet premier J.V. Stalin as a “paranoiac” immediately after examining him (Moroz, 1989). V.M Bekhterev’s sudden death three days later was allegedly an assassination ordered by Stalin himself.

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Boyle, M. P. (2013). Psychological characteristics and perceptions of stuttering of adults who stutter with and without support group experience. Journal of fluency disorders, 38(4), 368-381.

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