What's in a Name?

About the presenter: Ken St. Louis, Ph.D., is a professor at West Virginia University, a speech-language pathologist and mostly recovered stutterer. His research in person-first terminology has lead naturally to research on public attitudes toward stuttering in general. In that area, he coordinates an international initiative to develop an instrument for measuring public opinion toward stuttering.

What's in a Name?

by Ken St. Louis
from West Virginia, USA

Beginning of a Discussion

Early this year, on STUTT-L, the well-known stuttering listserv, someone posted the following sincere question:

...I prefer calling myself a "stutterer" [to] a "person who stutters" or a "PWS," but I don't want to offend anyone. [Are] "person who stutters," "people who stutter," and "PWS" still the terms of choice? Am I offending people when I use the term "stutterer?"

A prominent and frequent contributor to the list explained the reason for using "person who stutters" versus "stutterer." He wrote:

...My understanding is that some people prefer to use the term "PWS" ("person who stutters") because it denotes that they are more then just their stutter. They are husbands, wives, athletes, artists, writers, teachers, lawyers, etc., who also happen to stutter.

My Response

Because I have been rankled by the person-first movement since its inception, I could not resist making a detailed reply. Most of the arguments given pro and con for this sort of thing come from one's own personal feeling of labeling someone else or being labeled. Personal preferences are important, but I believe that actual research data should be brought to bear on this issue. With that in mind, I carried out a series of studies and published an article entitled "Person-First Labeling and Stuttering," published in 1999 in the Journal of Fluency Disorders. First, let me summarize that study again.

In the mid to late 1990s, I arranged for four groups of respondents to evaluate on rating scales various terms or labels. The groups included: (a) actual speech or language clients in our speech clinic (more than 50% of whom in this study were stutterers), (b) parents of young clients, (c) students in speech-language pathology, and (d) members of the general public. Half of the questionnaires asked about respondents' impressions of--and personal experiences with--various labels or names given to people; the other half asked about appropriate use of the labels. The labels were as follows:

PERSON-FIRST VS. DIRECT LABELS
"Person who Composes" / "Composer"
"Person who Gambles" / "Gambler"
"Person with Leprosy" / "Leper"
"Person who Murders" / "Murderer"
"Person who Smokes" / "Smoker"
"Person who Wets the Bed" / "Bed Wetter"
"Person with Psychosis" / "Psychotic"
----------------------------------------------------
"Person with Aphasia" / "Aphasic"
"Person who Lisps" / "Lisper"
"Person who Clutters" / "Clutterer"
"Person who Stammers" / "Stammerer"
"Person who Stutters" / "Stutterer"

ANCHOR LABELS
"Disfluent"
"Hoarse"
"Cleft Palate"
"Deaf Mute"
---------------------------------------------------
"Mentally Retarded"
"Overweight"
"Obese"
"Person with Cancer"
"White"
"Black"
"African-American"
"Crazy"
"Moron"
"Articulate"
"Trustworthy"
"Genius"

The labels obviously range from negative to positive. The ones between the dotted lines are speech-language-hearing related terms. Also, first 12 terms were either person-first or direct labels, and these were carefully counterbalanced in the questionnaires. Half of the questionnaires contained one version; the other half contained the other version. But all of the questionnaires contained the remaining 16 "anchor" terms, in order to compare each of the two groups on the same labels and to serve as a control for similarities or differences between the two groups of respondents. It is important to realize that the person-first or direct label terms were mixed with the anchor labels so that there was no predictable pattern or clue that the study was about the labels for "stutterer" or "person who stutters."

The average responses among the different groups of respondents were remarkably similar, even though there were large differences in age, education, and occupation. All the groups basically agreed on the degree to which labels were negative (or stigmatizing), neutral, or positive. Virtually all (98%) of 480 comparisons for person-first versus direct labels terminology did not result in a significant difference. The rare significant differences favored "person with leprosy" over "leper" and "person with psychosis" over "psychotic." Not one of the 640 group comparisons for the anchor terms was significant.

There were essentially no systematic differences in ratings among "stuttering," "person who stutters," "stammerer," "person who stammers," and "disfluency." This is somewhat surprising since clinicians often prefer the term "disfluency" to "stuttering" because it is felt to be less negative.

This and two other studies have supported the inescapable conclusion from group studies that person-first terminology has little effect on lessening negative ratings for stuttering and most other terms. One such study by Dietrich, Jensen, and Williams (2001) found that college students in a general education class were no more likely to agree that a hypothetical student should enter a college degree program in speech and language if he were described as "stutterer" versus a "person who stutters." Another in the UK compared "stammerer" versus "person who stammers" (Brocklehurst, 2005). ("Stammering" in the UK is synonymous with "stuttering" in the USA.) Brocklehurst, using the same words as in my studies, asked questions of respondents representing the general public that involved a hypothetical person who was a "stammerer," "person who stammers," or a number of descriptors (taken from the list above). Respondents rated their willingness to socialize, trust, talk to, or employ the hypothetical person as well as to rate their perceptions of what the labels implied about a person's sincerity, mental stability, and intelligence. Brocklehurst found that none of the person-first versus direct label comparison was statistically significant. Accordingly, he suggested that the adoption of the person-first label is unlikely to change or improve the public's perceptions of stammerers (stutterers).

Commentaries

To provide a sampling of the discussion on this issue, following are a few views expressed on the list. (It should be noted that the quotes are not always exactly as written. I did some slight editing to correct a few typographical errors and provide a level of consistency.)

Paul Brocklehurst shared with me the paper cited above. In the course of our correspondence, he wrote:

...My feeling is that the current tendency for people to believe that changing the label will change the understanding behind the label just encourages a tokenistic approach to solving the problems of poor self-esteem and negative stereotyping. It somehow misses the point. And this is dangerous, as I can imagine a scenario in which, for example, an inexperienced SLP on seeing someone who stutters, focusing therapy on label-changing and then recording a positive outcome on the basis of the client having adopted a new label for himself.

Recalling that this was not the first discussion of person-first terminology, a stutterer commented:

...I remember reading a similar thread on Stut-Help about 10 years ago. I was deeply offended by the term "stutterer." Now I'd rather say "stutterer" than "person who stutters" because it's less words I have to struggle through. I hope everyone can reach a point where titles won't matter and [people who stutter] will realize they are complete persons who happen to have a unique style of communication. When you reach the phase in your life when you can say "Yeah, I stutter, so what?" that's worth more than any fluency I could ever gain from therapy, drugs, etc.

Another stutterer wrote:

...I use the terms ["stutterer" and "person who stutters"] interchangeably. Using "people who stutter" exclusively results in stilted language that, while politically correct, is not always communicative or persuasive.

One stutterer reacted as follows:

...I have never liked the term "person who stutters." I am a scuba diver, not a person who scuba dives. I am a jogger (at least before I injured myself), not a person who jogs, I am a ballroom dancer, not a person who dances ballroom. Why should I not individualize stuttering in the same way that I individualize anything else that I do, i.e., by adding "er" to the verb, and leave it at that? Why should I give my stutter some special status?

A clinician wrote:

...I think it is important that the message to children is that they are children first and that stuttering is something they do. Therefore, I never use "stutterer" with kids. I always use "children who stutter."

A "stutterer" / "person who stutters" offered this personal perspective:

...I have always felt that the term "stutterer" was a little harsh. It labeled me as a someone who couldn't communicate. I hated that term throughout my life. By calling myself "a person who stutters," it kind of takes the stigma off of it. I guess you can say it's a "feel good" thing, for me anyway. Whenever I am going through a difficult period with my speech, I feel like I am a "stutterer." Some of those old feelings and emotions resurface. When I'm having a good day, week, or month, I feel like I am a "person who stutters."

A self-described "person who does not stutter" added these comments:

...I try to respect how the individual wants me to use language. There are some now who are insisting on a "new" label, i.e., "person living with stuttering," so when I write to or visit with such a person, I try to remember to use that terminology. For general purposes though, the abbreviation "PWS" is quicker for me to type, and I tend to use that, if only for that reason.

All of this added to the confusion of a student on the list who confided:

...I think the whole discussion of "stutterer" vs. "PWS" is very interesting. When I was in undergraduate school, we were taught to use person first. ...I understand now that stuttering is different. I think it depends on each individual and how they want people to refer to them. As a graduate student in speech pathology, this makes it a little difficult when seeing a client for the first time. How do you know if they prefer "PWS" or "stutterer?" Is it OK to just ask, or should you avoid titling them?

A stutterer replied to the student with:

...I think it's best to ask the person what form of reference they prefer. As for me, I prefer "stutterer" because it feels honest and healthy and it lets my listener know that I am accepting of my stuttering. To me, using "PWS" seems like a euphemism or ineffective sugar-coating.

A stutterer who had witnessed much of this discussion replied:

...I usually don't weigh in on these discussions but I can't avoid this one. I believe that the words we use and don't use are very important. Therefore, I will always use and advise people to use "people who stutter" rather then "stutterer," My reason is simple. As I have already heard, we are people who just happen to stutter. Stuttering does not and should not completely define the person that we are and will become.

Further Thoughts

In two follow-up messages, I posted the following perspectives, which are not summarized here as "the last word" but as my opinions only.

Two contributors to the discussion (Paul Brocklehurst and I) presented objective data on whether or not person-first labeling makes a difference or not. In spite of this, aside from some agreements here and there with our positions, all the discussion has been on "what I feel" or "what I think someone else might feel." That, in my opinion, is precisely what is wrong with political correctness as it relates to any but the most obvious and well-known pejorative or stigmatizing labels, e.g., "idiot." For terms such as "stutterer," the validity of the sensitivity shown--or lack thereof--is almost never based on verifiable fact. Instead, it is based on someone's well-intentioned--but according to the data, inaccurate--ideas about what might be construed as negative. Once we start down that road, there seems to be no stopping.

For example, the American Speech-Language-Hearing Association (ASHA) insists on person-first terminology in its publications. The citations for support do not include any data. I find this sad in light of the fact that our profession advocates the use of "evidence-based practice." Apparently, "evidence" in this case is only what we feel or have been told that others feel.

No doubt, stutterers sometimes encounter negative, derogatory, or stigmatizing comments, attitudes, and reactions from others. However, unless there is a wholesale change in the attitudes surrounding that (such as has occurred to a large extent for people in wheelchairs), modifying the name of an unfortunate condition typically neither eliminates nor reverses the hard realities faced by those suffering from it. I would also argue that changing the name of an undesirable condition may have the undesired effect of euphemistically promoting the conclusion that something is not what it really is. In my years as a clinical speech-language pathologist, I have observed numerous instances when stutterers or clinicians used the term "disfluency" instead of "stuttering" in order to lessen the negativity of the diagnosis. As a result, I have witnessed several cases where a person has insisted that he or she did not "stutter" but was only "disfluent".

Perhaps one of the most bizarre results of person-first terminology in stuttering is that many now use "PWS" (i.e., "person who stutters") or "CWS" (i.e., "child who stutters"). These acronyms, at first appeared only in writing, but now have entered the verbal lexicon as well. As a (mostly recovered) stutterer myself, I would react much more negatively to someone calling me a "PWS" than a "stutterer." Finally, I find it strange that some believe we can use abbreviations like "PWS," "CWS," and "PWDS". in writing (apparently believing that we are being sensitive, or why else would we write them?) but simultaneously believe that calling someone a "PWS" is insensitive.

I would like to conclude with an extended quote from my 1999 article:

...The results ... suggest that for the speech-language pathology labels assessed, person-first terminology does very little to lessen negative attitudes of the public...[I submit] that policies ... promoting person-first and other types of labeling terminology, while clearly beneficial in some contexts, should not be made lightly. If policies are justified by the argument that certain labels will lessen or remove negative attitudes, or that certain labels will increase or promote positive attitudes or sensitivity, then public and professional opinion should be garnered for support. And, the information gathered should be shared and discussion encouraged. It is possible that a policy insisting on person-first terminology in the area of speech-language pathology in general or in fluency disorders in particular, while well intentioned, may not be helpful in fostering appreciation of clients as people but simply confuse everyone concerned by suggesting that past labels--for which the overwhelming consensus is that they are not pejorative--are now unacceptable. �It is never too late to debate questions such as the following in regard to labeling terminology. In the interest of better understanding the people we serve, where should lines be drawn between labels that are pejorative and those that are acceptable? By whom should the lines be drawn? Should lines even be drawn? And, how are lines that have been drawn unnecessarily either erased or redrawn? (St. Louis, 1999, pp 23-24).

As a closing thought, I share with others profound sadness that the term "stutterer" has become or may becoming a bad word.

References

Brocklehurst, P. (2005). "Stammerer" or "person who stammers"? A comparison of the impact of two labels on the general public. Unpublished sociolinguistics project. De Montfort University, Leicester, UK.

Dietrich, S., Jensen, K. H., & Williams, D. E. (2001). Effects of the label "stuttering" on student perceptions. Journal of Fluency Disorders, 26, 55-66.

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

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September 9, 2006