 About the author: Michael P. Boyle, Ph.D., CCC-SLP is an Assistant Professor in the Department of Communication Sciences and Disorders at Montclair State University in New Jersey, U.S. As a person who stutters, he realizes the negative impact that stigma can have on social participation and psychological well-being. Because of this, he has focused his research on understanding, evaluating, and treating public and self-stigma in individuals who stutter. His research has been published in a variety of leading journals, and presented internationally. Dr. Boyle’s research program has been consistently funded over the past several years. He currently serves as a member of the National Stuttering Association Research Committee. He teaches graduate courses in fluency disorders and research methods, and undergraduate courses in anatomy and physiology of speech and hearing. |
Introduction
People who stutter (PWS) not only deal with managing involuntary speech disruptions that can make speech physically and mentally exhausting, they also frequently experience negative social reactions that can make communication even more challenging. In order to enhance the psychological well-being of PWS and increase their participation and inclusion, it is critical that professionals have knowledge of public stigma and its relevance to stuttering. This paper aims to provide the reader with this information in the hope that it might ultimately help guide clinical practice, or personal management of stuttering. Specifically this paper will discuss the
- background of public stigma and its relevance for PWS;
- rationale for why this topic is important for professionals to take into account when providing services for PWS;
- brief review of the research literature in public stigma reduction for stuttering; and
- call for continued research in this area emphasizing the importance of discovering evidence-based methods for public stigma reduction in stuttering.
Public Stigma and Stuttering
Public stigma involves a process of negative reactions from the public to an individual or individuals who are believed to possess a trait or characteristic that is devalued by society (Corrigan, Larson, & Kuwabara, 2010; Link & Phelan, 2006). A trait, such as stuttered speech, becomes linked with a negative social identity and stereotypes are formed (e.g., PWS being classified as nervous, non-assertive, incompetent, etc.). The stereotype can result in prejudiced emotional reactions in which the public can become uncomfortable around PWS. Finally, the negative emotional reaction can lead to changes in behavioral intentions or actual behaviors (e.g., avoiding, segregating, or discriminating). The end product of discrimination against PWS means that opportunities for social activity, vocational and educational attainment, and speech related activities altogether could be reduced. These limitations from the public can lead to reductions in psychological well-being of PWS and barriers to achieving life goals (Boyle, 2013; 2015; Boyle & Blood, 2015).
It has been well documented that PWS experience stigma in the form of negative stereotypes about personality and competence, as well as being perceived as less suited for leadership roles and jobs that require oral communication (Abdalla & St. Louis, 2012; Gabel, Blood, Tellis, & Althouse, 2004; Silverman & Bongey, 1997). It is also known that PWS are highly aware of these negative attitudes from the public and perceive this public stigma very clearly (Boyle, 2013). This awareness and felt stigma can also be internalized and applied to the self with implications for a host of variables related to psychological well-being (e.g., increased anxiety and depression, lower quality of life) (Boyle, 2015). Clearly then, the issue of public stigma for stuttering is a serious one, and needs to be addressed in order to maximize well-being, participation, and social inclusion of PWS.
Why is Public Stigma Relevant for Speech-Language Pathologists/Therapists?
The American Speech-Language-Hearing Association has adopted the wording of the International Classification of Functioning, Disability, and Health (ICF) which describes how activity and participation in individuals with disabilities can be hindered not only by physical impairments, but also by barriers created by contextual factors. The World Health Organization (WHO) (2002) which developed the ICF describes what is meant by contextual factors. Contextual factors can be environmental (e.g., attitudes or perceptions of others in the environment, especially those in authority) or personal (e.g., beliefs and perceptions of the person about his or her own disability, coping styles, etc.). It seems clear that stigmatizing attitudes from the public would be classified as an environmental barrier to activity, social participation, and inclusion. In its scope of practice, ASHA states that the ICF is useful in describing the roles of the speech-language pathologist (SLP). ASHA’s scope of practice clearly states that “Speech-language pathologists may influence contextual factors through education and advocacy efforts at local, state, and national levels” (American Speech-Language-Hearing Association, 2007). WHO’s ICF framework is helpful internationally for discussing the role of the professionals responsible for helping PWS.
Although it has been recognized that focusing on contextual factors is an integral part of the job of an SLP, it seems to be the case that the biomedical model of treating disabilities is still the predominant view in the health professions (Conyers, 2003; Smart & Smart, 2006). Even the name of the field itself, “speech-language pathology” includes the term pathology, which is a biomedical term. The biomedical model places the primary locus of the disability within the individual, and the goal is normally to find cures or treatments that will help the person regain a “normal” status (i.e., the appearance of being without the condition or disability). Certainly, the biomedical model is responsible for advances in medicine and treatments for many types of diseases and conditions. However, there are alternative models, or frameworks for viewing disability that are gaining increased emphasis in the field. The social model of disability frames disability as created by environmentally produced limitations, rather than being an intrinsic aspect of a person (Simpson & Everard, 2015; Smart & Smart, 2006), and the cultural model of disability highlights the fact that many groups have disability pride and view their condition positively as a unique aspect of who they are (Boyle, Daniels, Hughes, & Buhr, in press; Conyers, 2003). WHO (2002) uses a biopsychosocial model to discuss disability, and this model has been applied to stuttering recently as well (Weidig & Michaux, 2015).
Because it is true that reducing environmental barriers is a key component of the jobs of SLPs, it is very important that students and professionals in the field of communication sciences and disorders become familiar with different models of disability that emphasize environmental and contextual factors as critical components. In order to reduce environmental barriers faced by PWS including public stigma, it is critical to review what evidence based strategies are available to achieve this task and determine future research needs in this area.
Public Stigma Reduction for Stuttering
The social psychology literature has identified several strategies for public stigma reduction (see Boyle & Blood, 2015 for a detailed description). The major strategies highlighted here are: (1) protest; (2) education; and (3) contact. Protest involves rebuking negative attitudes or behaviors toward PWS in the hopes that social behavior will change. For example, when U.S. democratic candidate Creigh Deeds’ stuttering was mocked by Shelia Johnson in 2009, the National Stuttering Association (NSA) and the Stuttering Foundation put out press releases that condemned this behavior. Several Internet statements, as well as an e-mail campaign initiated by members of the NSA resulted in Johnson issuing and apology. Whereas protest is usually in reaction to something done publicly, education can be proactive. Educational approaches aim to replace myths and false information with facts. For example, organizations like the Stuttering Foundation produce educational materials such as videos, booklets, posters, and magnets that list some commonly held misconceptions about stuttering (e.g., that stuttering is caused by nervousness) and dispel these myths. Finally, contact is a strategy in which individuals interact with PWS and hear their personal stories. A dialogue is initiated with the goal of people learning that PWS are fundamentally no different from themselves, despite their disfluent speech.
Despite the importance of public stigma reduction for PWS, there is a surprising lack of research on the various methods described above. There have been no empirical studies to date that examine the effects of protest on public attitudes toward stuttering. There have been several studies that investigated the impact of educational videos on perceptions of stuttering. Some of these studies have documented increases in positive attitudes toward PWS (e.g., reduced blame and negative stereotypes, and increased knowledge about stuttering) following these videos (Abdalla & St. Louis, 2014; Flynn & St. Louis, 2011), however other studies have demonstrated minimal attitude changes in perceptions of PWS (Leahy, 1994; Snyder, 2001) or even more negative ratings of personality characteristics of PWS (McGee, Kalinowski, & Stuart, 1996). These discrepancies across studies can probably be accounted for by the use of different stimuli (i.e., content of the videos presented) and outcome measures employed by the researchers. Finally, not many studies to date have investigated the impact of contact on people’s perceptions of PWS. Flynn & St. Louis (2011) found that attitude change of students was more positive following a live presentation by a PWS compared to a documentary video of PWS alone. This research indicates that although education and contact have evidence to support them, contact may be a more powerful stigma reducer.
Future Directions
It is imperative that researchers continue to systematically investigate best practices for public stigma reduction for stuttering. In particular, researchers must specify their stimuli clearly. For example, if an educational video is presented it should be documented exactly what type of content was included in the video. If contact was used as the method of choice, the characteristics of the PWS should be noted, in addition to what the PWS said to participants and in what manner. Also, outcome measures need to be considered carefully. A variety of socially valid measures should be used beyond the commonly used personality stereotype questions. For example, emotional reactions (e.g., empathy), behavioral intentions (e.g., preferred social distance), and actual behaviors (e.g., discrimination) will be important to measure in future studies.
In summary, advocates for the stuttering community require empirical evidence from rigorous scientific studies that their anti-stigma campaigns are going to lead to desired results. It should not be assumed that all public service announcements or educational campaigns will be beneficial, as it has been documented that some can even lead to adverse consequences. If organizations dedicate time and money to anti-stigma campaigns, they should use their resources wisely and implement evidence based strategies. Researchers and advocates should work together to end public stigma related to stuttering. Some professionals may hold the perspective that reducing the physical characteristics of stuttering will lead to the biggest reduction in public stigma. An alternate perspective highlighted in this paper is that public stigma is a problem of social justice, and sometimes efforts to reduce societal ignorance and bias could be a more effective method of stigma reduction.
References
Abdalla, F. A., & St. Louis, K. O. (2012). Arab school teachers’ knowledge, beliefs and reactions regarding stuttering. Journal of Fluency Disorders, 37, 54-69.
Abdalla, F., & St. Louis, K. O. (2014). Modifying attitudes of Arab school teachers toward stuttering. Language, Speech, and Hearing Services in the Schools, 45, 14-25.
American Speech-Language-Hearing Association (2007). Scope of practice in speech-language pathology [Scope of Practice]. Available from: http://www.asha.org/policy/SP2007-00283/.
Boyle, M. P. (2013). Assessment of stigma associated with stuttering: Development and evaluation of the Self-Stigma of Stuttering Scale (4S). Journal of Speech, Language, and Hearing Research, 56, 1517-1529.
Boyle, M. P. (2015) Identifying correlates of self-stigma in adults who stutter: Further establishing the construct validity of the Self-Stigma of Stuttering Scale (4S), Journal of Fluency Disorders, 43, 17-27.
Boyle, M. P., & Blood, G. W. (2015). Stigma and stuttering: Conceptualizations, applications, and coping. In K. O. St. Louis (Ed.), Stuttering meets stereotype, stigma, and discrimination: An overview of attitude research. Morgantown, WV: West Virginia University Press.
Boyle, M. P., Daniels, D. E., Hughes, C. D., & Buhr, A. P. (in press). Considering disability culture for culturally competent interactions with individuals who stutter. Contemporary Issues in Communication Sciences and Disorders.
Conyers, L. M. (2003). Disability culture: A cultural model of disability. Rehabilitation Education, 17, 139-154.
Corrigan, P. W., Larson, J. E., & Kuwabara, S. A. (2010). Social psychology of the stigma of mental illness: Public and self-stigma models. In J. E. Maddux & J. P. Tangey (Eds.), Social psychological foundations of clinical psychology (pp. 51-68). New York: Guilford Press.
Flynn, T. W., & St. Louis, K. O. (2011). Changing adolescent attitudes toward stuttering. Journal of Fluency Disorders, 36, 110–121.
Gabel, R. M., Blood, G. W., Tellis, G. M., & Althouse, M. T. (2004). Measuring role entrapment of people who stutter. Journal of Fluency Disorders, 29, 27-49.
Leahy, M. M. (1994). Attempting to ameliorate student therapists’ negative stereotype of the stutterer. European Journal of Disorders of Communication, 29, 39-49.
Link, B. G., & Phelan, J. C. (2006). Stigma and its public health implications. The Lancet, 367, 528-529.
McGee, L., Kalinowski, J., & Stuart, A. (1996). Effect of a videotape documentary on high school students’ perceptions of a high school male who stutters. Journal of Speech-Language Pathology and Audiology, 20, 240-246.
Silverman, F. H., & Bongey, T. A. (1997). Nurses’ attitudes toward physicians who stutter. Journal of Fluency Disorders, 22, 61-62.
Simpson, S., & Everard, R. (2015, July). Stammering and the social model of disability: Implications for therapy. Paper presented to the International Fluency Association 8th World Congress on Fluency Disorders, Lisbon, Portugal.
Smart, J. F., & Smart, D. W. (2006). Models of disability: Implications for the counseling profession. Journal of Counseling and Development, 84, 29-40.
Snyder, G. J. (2001). Exploratory research in the measurement and modification of attitudes toward stuttering. Journal of Fluency Disorders, 26, 149-160.
Weidig, T., & Michaux, G. (2015, July). A novel biopsychosocial model catering for the complexity of stuttering. Paper presented to the International Fluency Association 8th World Congress on Fluency Disorders, Lisbon, Portugal.
World Health Organization (2002). Towards a common language for functioning, disability, and health: ICF. Retrieved from: http://www.who.int/classifications/icf/en/.
This is a very interesting article and you bring up many great points! Have you had any personal experiences that support either side of your argument? In other words, have you seen firsthand Public Stigma Reduction strategies either help or hurt PWS?
Hi Alexis,
Thanks for your question. Yes, I have seen the effects of some of these stigma reduction strategies in my own life. For example, I have seen the effects of public protest against negative statements made against individuals who stutter (like in the example in the paper about the Stuttering Foundation and National Stuttering Association admonishing Shelia Johnson in 2009), or in 2011 the Stuttering Foundation’s public challenging of Donald Trump’s use of the word “stutterer” in a derogatory way. I’m not entirely sure if protest activities fundamentally change people’s perceptions, or just makes them aware that they shouldn’t voice those negative perceptions in public. There aren’t really any research studies in the area of stuttering to back up the effects of protest as far as I know.
Regarding education, yes on a personal level I see as a teacher the positive effects that education can have on students’ perceptions of stuttering. Also, this is true for people in the general public. I have conducted several education sessions about stuttering for disabilities awareness month and stuttering awareness month for members of the public, students, teachers, etc. and although I haven’t collected data on this yet, it really does seem that from the informal feedback, it changes people’s perceptions for the better. I do also have actual evidence from my research of increased levels of education on stuttering being linked to more willingness to help and reduced dislike of people who stutter.
Regarding contact, it seems intuitive to me that public perceptions really aren’t going to change unless members of the public have some familiarity and contact with real people who stutter. Once people realize that people who stutter are fundamentally just like them, despite their disfluent speech, attitudes tend to improve. I have seen this on many occasions when I go to a classroom to educate students about stuttering, or when students attend a panel discussion led by people who stutter, or students or professionals attending self-help meetings or conferences for people who stutter. There is also empirical evidence from studies conducted by Ken St. Louis and his colleagues suggesting that contact may be the most effective form of public stigma reduction, even more than education.
As far as negative effects, there is some evidence that some strategies intended to increase positive perceptions have minimal effect, or even increase negative perceptions like stereotypes. Although I’m not sure entirely why this is, it could be related to how stuttering is portrayed. If it is portrayed as something that a person struggles with and is ashamed of, it might increase negative stereotypes. People who stutter probably need to be portrayed in a positive way(that stuttering is just one aspect of themselves, and although it is difficult to manage sometimes, they can make great strides to improve their communication and live totally normal lives), in order for the public perceptions to become more positive.
I hope this answers your question.
Thanks,
Michael Boyle
Dr. Boyle, thank you for this very intriguing article! I’m curious if there’s been any research done about reducing negative public stigma about PWS on a smaller level, like a small geographical region rather than a societal level? I also wanted to ask if you have any advice to give an individual who stutters about how to reduce negative stigma about stuttering in their own environment?
Hi Dana,
Thanks for your question. Although researchers like Ken St. Louis and colleagues have obtained a very impressive amount of data from various countries across the world about public perceptions of stuttering, it has been harder to obtain data related to public stigma reduction. This is because there would most likely need to be a pre-test, some type of intervention, and a post-test that would measure participants’ perceptions. This is a more elaborate research design than completing a single questionnaire and it is harder to execute with larger groups of people.
Most of the research done in the area of stigma reduction has been at a relatively small scale. For example, there have been studies examining the perceptions of graduate students about stuttering after classes and clinical experiences. Again, St. Louis and colleagues have done some stigma reduction work in college classrooms in the U.S. and abroad. They have measured the attitudes of school teachers and pre-service trainees as well. Normally these studies include a sample size anywhere from 50-200 people. So, although we don’t have any large scale stigma reduction studies, we do have some good evidence from these smaller studies that target specific populations (e.g., teachers, speech-language pathology students, etc), and this provides very useful information.
Regarding tips about reduction of stigma in one’s own environment, I would mention a few options that might help people: 1) being open about stuttering and talking about it to family, friends, classmates, co-workers, etc. The more that stuttering is on the table and something that can be discussed openly, the less stigma there will be around it. 2) People who stutter advocating for their needs and desires regarding communication expectations (e.g., letting someone know how you would like them to interact with you), 3) educating people about stuttering (for example some students choose to give a presentation about stuttering to their classmates in school, sometimes with the help of the SLP). This can also be helpful if the person is working on speech modification tools. Explaining what they are and why they are used gives the person permission to use them and not feel like people don’t understand. Basically, anything that will increase understanding of stuttering and put it on the table in an objective way could possibly be helpful in reducing the misunderstanding and stigma that often surrounds stuttering.
I hope that helps,
Michael Boyle
Dr. Boyle,
I enjoyed your paper and you made so many great points. It is disheartening that so many people have negative opinions about stuttering. Social stigma and misconceptions surrounding stuttering are present at all ages; however, I would assume that children who are educated about disorders from a young age are typically more comfortable around people who stutter. Have you found in your research any evidence suggesting that certain age groups are more receptive to education about stuttering, and do you find that education makes more of a long-term difference depending on the age?
Danielle
Hi Danielle,
Thanks for your question. Research has shown that negative attitudes and behaviors towards children who stutter can occur at an early age. Open discussion and education about stuttering. Marilyn Langevin and her colleagues have published on peer attitudes for children who stutter and have found that increased contact is related to more positive attitudes, suggesting that being open about it and talking with others about stuttering could be very helpful. A two part case study by Murphy, Yaruss, & Quesal was published in 2007, and it described a treatment program for a school age child including elements of disclosure and class education in stuttering. The results showed improved ability of the child to respond to bullying , and fewer negative comments about stuttering from classmates. I have heard a few clinicians using this strategy of classroom education of peers to increase positive attitudes. Once people understand something, they are less likely to respond negatively, and it seems like this is true for young children as well. I’m not sure if certain age groups are more receptive than others, but it makes sense to me that early education is a very positive thing because it has the potential to make an imprint early in life. I know that there are researchers in the field who are studying stigma reduction programs for preschool and school age children currently, and so we are likely to learn a lot more on this topic in the upcoming years.
Best regards,
Michael Boyle
Dr. Boyle,
Thank you for your paper. As a current graduate student in Speech-Language Pathology, educational papers from professionals in the field who stutter are invaluable for my understanding of stuttering and how I can be an effective SLP to those who stutter.
From a perspective of someone who does not stutter, it is important for me to understand how perceived disability effects individuals who fall into that category. You made a sobering point regarding how perceived disability from society turns into a “self-fulfilling prophecy” and consequently indirect discrimination. I did not realize how those pieces effect each other to creating a very detrimental cycle of misunderstanding and discrimination for those who stutter.
The different models of disability were educational since I had only heard of the biomedical model and the WHO model. The social model struck me as a very important one for SLP’s to be education on, as it is person-oriented as well as touches on the role that society plays.
I appreciated learning more about ways to challenge public stigma for PWS and there is a clear need for research in the area of public education. I look forward to seeing how these issues evolve over time.
-Marie
Hi Marie,
Thanks for your feedback. I’m glad that you got something out of the article. It does seem to be the case that in academic training programs in communication disorders, the focus is primarily on the biomedical model. In recent years however, there is a growing emphasis on the social and cultural aspects of communication disorders. It is important for students to gain these different perspectives because it could change how you view the nature of the disorder, and what appropriate services could look like. For example, just asking yourself the questions: where does the disability reside? Is it due to limitations of the individual? Or, is it due to barriers in society? can help people think more expansively about the very nature of disability.
Best regards,
Michael Boyle
Hello, Dr. Boyle.
Your paper related very well to a discussion I recently had in my fluency disorders course. We discussed how people who stutter are often negatively portrayed in movies and TV shows. These movies and shows are perpetuating the social stigma attached to stuttering. I really appreciated reading this article and learning about ways people, especially clinicians, can help work to annihilate these naïve and harmful social stigmas and communication barriers. Through protest, education, and contact, we can start setting the record straight! This was encouraging and empowering to read.
Thank you for sharing your knowledge.
Kate Collins
Hi Kate,
Yes, it does seem that stuttering has been used as a shorthand to describe character weakness, psychological disturbances, and moral deficiency in the movies and tv (although movies like The King’s Speech and Rocket Science have characters who stutter who are the portrayed mostly positively). The following article documents the media’s portrayal of stuttering quite extensively, although it is a bit older now:
Johnson, J. K. (2008). The visualization of the twisted tongue: Portrayals of stuttering in film, television, and comic books. The Journal of Popular Culture, 41, 245-261.
Thanks for your feedback, and I’m glad you found the article useful.
-Michael Boyle
Dr. Boyle,
I really enjoyed reading this article because I agree that challenging the public stigma of stuttering is important. Sometimes I wonder why there is such a social stigma on those who stutter and not those with other disabilities and I think, maybe using the methods you described for public stigma reduction could, eventually, help with this dilemma. I enjoyed reading about the other models to explain stuttering and found the cultural model especially interesting. Why is it that we, as Americans, don’t always take pride in the disabilities we may have? I also like the comment that people who stutter are no different than people who don’t stutter, despite the disfluent speech. Thank you for the informative and interesting read. I look forward to following this topic over time.
Thanks for your feedback dkour881. If you are interested in the cultural model of disability, keep an eye out for an upcoming article that I authored with Derek Daniels, Charlie Hughes, and Tony Buhr which is in press in Contemporary Issues in Communication Sciences and Disorders: “Considering disability culture for culturally competent interactions with individuals who stutter” The article gives an in-depth description of disability culture and how it relates to interactions with people who stutter.
Best regards,
Michael Boyle
Dr. Boyle,
During this online conference I’ve found myself really drawn to the papers that concern the attitudes and feelings of PWS, and how to advocate for and empathize with PWS. I had never heard of the three strategies to reduce public stigma until reading your paper, and I feel much more informed with concrete ways to help reduce the stigma now that I’ve learned about these strategies. I am studying to be an SLP, and I am wondering if you feel there is one strategy that might be best suited for SLPs to reduce stigma, or should it be a combination of all three? SLPs, particularly ones in the school system, could definitely provide a lot of education to students about stuttering, but do you feel that these strategies work best together?
Sincerely,
Heather
Hi Heather,
I think it is desirable for SLPs to have knowledge of all of the strategies mentioned, although of particular importance for SLPs are education and contact. As a professional, it is a responsibility to inform others who do not have the same level of understanding as us. Stuttering is a very misunderstood disorder in our society, and among many of our clients who stutter. The amount of explanations that people give about the cause of stuttering and what can be done to manage it are staggering and very often not supported by any convincing evidence. As professionals we need to use evidence based practice to guide the discussion. We can also give this understanding and knowledge about stuttering (e.g., etiology and treatment approaches) to our clients so that they can educate others. Clients feel more empowered when they have knowledge about what stuttering is and is not, and what the can do about it. For example many clients are relieved to hear that it is not their fault that they stutter, and they don’t stutter because they are just unconfident. Knowing that there are many other people out there who deal with the same thing, and learning about the physiological bases of the condition can reduce guilt and shame.
I also believe that clinicians can present options to clients that would provide them with contact with other people who stutter. This can be done through group therapy, or providing resources for self-help groups or meetings. Not every client will want to do this, but just presenting the information gives more options.
If we can educate others about stuttering, and empower our clients who will then go on to educate others about stuttering, there is the potential for attitude change in society.
Best regards,
Michael
Dr. Boyle,
I really found your article interesting because as a Speech Language Pathology student our class has just finished discussing Sheehans’s “Iceberg of Stuttering”. Public stigma reduction relates directly to this theory and many others. Being that many PWS are more affected by the negative feeling associated with their stutter as well as others reactions to a greater degree then the actual disfluencies. Creating a program to reduce public stigma towards stuttering would help remove the negative attitudes of individuals towards PWS. I was wondering, if creating a program for SLP’s to present to young school age children to provide an early framework of positive attitudes towards PWS would be appropriate. This type of program can accomplish a lot being that such young children do not have such a strong preexisting attitude towards PWS.
Thank you for the interesting article,
Libby Steinberg
Hi Libby,
I agree that educational programs would be very helpful, especially for young children. As you mentioned, this early intervention could potentially have an impact long into the future. I know that there are researchers in our field that are designing programs just like this. Many clinicians in stuttering already use some of these educational strategies with teachers and peers of their client in school settings. For example, a case study by Murphy, Yaruss, and Quesal (2007) describes a class presentation that educated peers about a child’s stuttering. The article gives a detailed description of exactly what was done in the educational session. The full citation is below, you might consider reading it to learn more:
Murphy, W. P., Yaruss, J. S., & Quesal, R. W. (2007). Enhancing treatment for school-age children who stutter II. Reducing bullying through role-playing and self-disclosure. Journal Of Fluency Disorders, 32(2), 139-162.
Best regards,
Michael
Thanks for the great article Dr. Boyle! I was wondering what clients themselves can do to present stigma against them personally. Also, I had never heard of the three ways social stigma can be reduced until this paper, which was very informative. Finally, do you believe this social stigma regarding stuttering causes stuttering to be worst? I know that the anxiety PWS feel can cause their problem to be worse, so can the way they are being perceived also increase their stuttering? (Or is their any research about this)
Thank you,
Chelsie
Hi Chelsea,
Did you mean what clients can do to prevent stigma against themselves? If so, there are many ways of doing this. First, teaching the person how to talk about stuttering in an open, relaxed, and matter of fact kind of way can be very helpful. If the person can discuss it openly with friends, family, co-workers, etc., it is possible for them to feel less stigmatized. Also, becoming part of a self-help network for people who stutter can be very helpful for many people to see that many people share their experiences and they are not the only ones going through it. Finally, it could be beneficial to work on challenging self-stigmatizing thoughts and replacing them with more empowering thoughts. If the person is limiting the scope of their lives due to faulty assumptions or beliefs, this can be modified. Many of the articles in this conference discuss therapy programs related to this, including Acceptance and Commitment Therapy, and Cognitive Behavioral Therapy.
As an answer to your second question, I personally believe that it makes sense that the severity of speech disruption could be exacerbated by negative reactions from the public, or even anticipated negative reactions. One of my recent studies reported on the correlation between awareness of stigmatizing views from the public, and self-rated speech disruption. There was a small positive correlation between those variables meaning that as awareness of stigma increased, so did self-rated speech disruption. This is only correlational data and so it can’t be said with any certainty that one is causing the other. However, my hypothesis is that it could be the case that with anticipated negative social reactions, increases in tension could occur that might have an effect on speech fluency.
Thanks for your question, I hope that helps.
Michael
Hi Dr Boyle
I am a member of the Speak clear Association of Cameroon.Thanks you so much for sharing this article i find very inspiring. I and my brother suffered a great deal of teasing and bullying in our early school age. We were marginalize and couple with the fact that we were from a poor family, it was as if our stutter was associated with poverty. I did not meet a speech specialist until 2002 and during the course i did my first ever public speaking and it was great. Memories of applause from the public that day are still in my mind and encourage me daily. Thanks once again.
Jonas Berinyuy
Hello Jonas,
Thanks for your feedback. I’m really sorry that stuttering created a lot of suffering for you and your brother in your younger years. Unfortunately, that is an experience that is shared by many people who stutter. This is really why I want to do this work. My hope is to make some progress in the area of how these negative public perceptions can be reduced. I’m happy to hear that you had some positive experiences in therapy and enjoyed the act of public speaking. That does sound very empowering! I wish your continued success in your journey, and thanks again for commenting.
Best regards,
Michael
Dr. Boyle,
Thank you for this informative article. I am a speech pathology graduate student and have been playing around with the idea of studying psychology as well. Do you feel it is important for those who treat persons who stutter to have formal training in psychology or counseling? If so, how extensive should this formal training be?
Thanks again for your time,
Lauren
Hi Lauren,
That is a really good question. I think it is always good to have some education in different fields to expand our breadth of knowledge and it can certainly inform what we do in our own field. As a field, we have learned a lot from medicine, education, psychology, and many others. Psychology in particular can be very relevant to the work of the speech-language pathologist. In an ideal world with ideal training, I would like to see speech language pathologists have knowledge of psychological counseling skills. The more tools we have at our disposal, the better we will be able to serve the diverse needs of our clients. This is especially true for stuttering because there can be an intense emotional element to the disorder that needs to be addressed in some clients (e.g., fear of stuttering, frustration with speech, shame, etc.). However, the reality is that most people need to choose one field or the other to pursue as a career, and so there are certainly limitations to what can be done. A speech-language pathologist cannot do the job of the psychologist and vice-versa. That being said, I believe that speech-language pathologists can learn the fundamentals of counseling skills and develop an understanding of things like cognitive behavioral therapy. Having an understanding of these things will improve therapy, especially with those clients who have a lot of negative emotions and thoughts about their stuttering. There are many articles available that describe these therapies and how they can be applied to speech-language pathology. There are videos and workshops provided by the Stuttering Foundation that can enhance understanding of psychological therapies like cognitive behavioral therapy. At ASHA conferences I have seen an increase in presentations on topics like this. In this very ISAD conference, there are many discussions of Acceptance and Commitment Therapy. As David Luterman pointed out, we work with people who are appropriately emotionally upset due to a life condition/communication disorder. If we don’t address that component, therapy will be missing something. As SLPs we can learn about ways to address the emotions and thoughts of the client. So, there is definitely overlap between the fields and a firm understanding of these things is certainly beneficial for speech-language pathologists.
Best regards,
Michael
Dr. Boyle,
Thank you so much for this article – it really helped me to further understand the relationship between stuttering and society. In a culture that places so much value on perfection and power, it is so easy to get caught up in a mindset of “fixing” the surface level characteristics of stuttering instead of taking the person who stutters as a whole and focusing not just on the stuttering but the environment around him or her as well. Your paper really helped me to gain new insights as I work towards becoming an SLP, and I hope to be able to put some of this into practice in the future. Do you have any advice as to how to help clients who stutter to be their own advocates and to start to change the stigmas present in the environments around them?
Hi Shannon,
Thanks for your feedback, I’m glad you got something from the paper. I would say that it is certainly a great goal for clients to be their own advocates. Some examples would be helping the person to feel more comfortable talking about stuttering to others. Explaining what stuttering is, what therapy does, and setting expectations for interactions (e.g., it is okay to ask someone to not interrupt you, or to maintain eye contact with you). Showing clients that they have the ability to do this can be very empowering because they might not have ever thought about talking about it openly. So, educating others is very powerful. If the client can feel like they are the “expert” on stuttering, they can educate others about it. If someone reacts negatively to stuttering, it can be viewed as an opportunity to educate them so that the person never does that again. In therapy, role play can be a very useful tool for practicing these things. The clinician and client can create scenarios that might happen in real life, and try many different options for how to respond in those situations in ways that will enhance pride and empowerment.
Best regards,
Michael
Hello Dr. Boyle,
I’m an SLP working with PWS in Canada–I initially wrote “fluency disorders” and decided I’m perpetuating that biomedical bias! Our treatment group will be discussing “Openness” tomorrow, and I’d like to incorporate your points about public stigma (it’s real and it does still exist) and the three ways to counter it. We already counsel our clients that being open about being a PWS is an opportunity for education, but I especially liked the idea that contact decreases fear/discomfort. This is such a basic premise, applicable to anything/one perceived as “different.” We’ve had some interesting discussions with past treatment groups, with participants coming from other countries recounting that being a PWS can have serious consequences. It has helped the other clients to hear about this, and put their struggles in a different perspective. Our local association of PWS has participated in the public library’s “Borrow a Person” event, where you sign up to speak with an author, poet, gardener, etc for 10 minutes. They have found it to be a great public awareness activity. Anyway, I thank you for your article and references; I’ll be incorporating these ideas into my practice!
Cheers,
Caroline
Hi Caroline,
Thanks for your comment, I’m glad the article gave you a few ideas that you might be able to use in treatment. It sounds like you already have some great therapy ideas that address these social issues. I really like the “Borrow a Person” event idea as a concrete way to increase contact between people who stutter and the general public. Thanks for the work you do, and I wish you continued success!
Best regards,
Michael
Dr. Boyle,
Thank you for sharing! I am currently taking a fluency disorders course within my SLP graduate program, so I found your article to be helpful in expanding on concepts we have learned in class. The lifetime incidence of stuttering is around 5%-10% of the general population, of which approximately 1% persist without spontaneous recovery. I think a major reason why there is a high degree of social stigma related to stuttering is that simply most people have not been exposed to PWS, which results in ignorance and judgement. I agree with the strategies of Boyle and Blood (2015), in that increasing education and contact will reduce social stigma. If children are educated at a young age and are able to interact with PWS, it will shed a new light on stuttering and lead to an increased awareness and acceptance among NFS.
Thanks again,
Annelise
Hi Annelise,
Thanks for your interest in this topic and your comments. I wish you success in your academic program!
Best regards,
Michael
Hi Dr. Boyle,
Thank you for your research. I think it is so unfortunate that there is a negative stigma with stuttering and very important that many things are done to help alleviate some of the negative connotation. Thanks again!
Stefanie
Dr. Boyle,
I recently had an experience which I think illustrates some of the points you brought up. I am a graduate student and was able to participate in a fluency clinic for a placement this past summer. During the clinic my supervisor shared that after participating in the fluency clinic the previous year she was compelled to call a former graduate student who was a PWS to apologize. My supervisor related that while the student was in school they had left a phone message for my supervisor in which there was severe stuttering. This led to some chastisement from my supervisor as she related that her understanding was that stuttering could be controlled and that the student’s poor ability to control his stutter was an indication that he was not trying hard enough. This is as you have put it, “the biomedical model” in action. However, after participating in the fluency clinic and being enlightened more on the cause of stuttering and facts regarding treatment that violated her former way of thinking, she knew she had to apologize. Interestingly enough, you indicated that direct contact with PWS was perhaps “a more powerful stigma reducer” and I believe this was the case for my supervisor as she was in direct contact with PWS during her supervisory role in the clinic. From hearing my supervisor’s experience, I am grateful we (graduate students) are being taught holistically in regards to stuttering, which will help reduce stigmas related to stuttering. I only wish I would have found your article sooner (when I was deciding on a topic for thesis) Thanks for your insight!
Hi Mike,
Thanks for your comment. Yes, I believe that there can also be unhelpful attitudes among some SLPs as well. The idea that PWS are lazy are or not working hard enough to be fluent increases blame and stigma. Changes to speech production can be very difficult… just ask SLPs to use the techniques that they ask PWS to use and you will often see that they can’t, or don’t want to maintain it for long. Many PWS, despite their best efforts and the best therapy will continue to stutter somewhat. The biomedical model would actually support that notion if brain functioning and genetic differences in PWS who persist in stuttering are emphasized as important distal causes for stuttering. Beyond that, some PWS just might not want to use those speech modification techniques, especially all of the time, which is totally their right. As you said, contact with PWS, especially those who have different ideas about what recovery and success look like, can be very beneficial in situations like the one you mentioned.
Take care,
Michael
Thank you, Dr. Boyle, for writing such an interesting and thought-provoking paper. I can see how your points relate to general stigmas people hold toward disability or differences. I think one point that came up in my reading of other articles on public perspectives on stuttering was how surveys about the topic and responses are shaped by cultural pressures, not by genuine change. For example, one article I read used questions such as, “are people who stutter more likely to be dishonest?” in their surveys. These kinds of leading questions either led to confirming the negative perspective or, on the flip side, revealed an overly optimistic and positive view of people who stutter (similar to viewing Chinese immigrants as the model minority or thinking all Asians are good at math. It is a positive perception, but not especially truthful because it has been overly generalized). Do you think this is an issue that has or will come up in your research?
Hi Vicky,
Thanks for the question. You raise a good point about the measurement of these attitudes. It is certainly true that social desirability bias exists – sometimes people respond with what they think they should say rather than what they really think. Most stigma research up to this point has been explicit, and this may underestimate stigma. Recently, there have been more studies conducted seeking to measure implicit attitudes (those that are outside of conscious awareness), although none have been published related to stuttering as far as I know. Also, even if explicit measures are used there may be other ways of writing questionnaire items to reduce social desirability bias. In psychology, some researchers are starting to use more subtle questions that aren’t as heavy handed. For example, questions asking about how different a PWS is from the person filling out the survey. So, the issue you raise is a definite concern, and there are many ways of trying to get around the issue of biased responses.
Best regards,
Michael
Michael,
I have just reread your post, but not yet read all the above posts.
Most Stuttering Associations want to raise awareness. Talking about stigma does just that.
Based on your thoughts that there is evidence that targeted audiences are a good way to go, maybe you, Ken, IFA, ISA, local/nationaal stuttering asociation target sections of SLP training Universities around the world. Targets would be staff / trainees / other students / teachers of local schools. We should leave material for use by locals when we are gone. The stuttering association should then work with others in the University to approach all local media outlets. If we are still around, we can help with media as well. This approach in Africa / Asia would work well as we are targeting the leaders of tomorrow. Thanks for the paper, Take care, Keith Boss
Hi Keith,
Thanks for your comments. I appreciate the attention you have given to the paper. The IFA, ISA, NSA, Stuttering Foundation, and others are well suited to address issues of public stigma, and certainly these organizations already do a lot of this work on a large scale. I do believe that targeted education with a specific audience may be very beneficial because the message could be crafted based on that audience (e.g., teachers, employers, students, etc.). The Stuttering Foundation does this with specific videos for teachers, parents, etc. They also have content specifically for pediatricians. What I am focused on in my research is looking at the effects of specific content, presented across various modes of delivery to see which types of strategies seem most effective and why. Much of this is just getting underway, so there is an incredible amount left to learn about the most effective ways of going about this. In the short term however, I do believe that researchers and advocates working together is a great way to address the problem of societal stigma.
Best regards,
Michael
Greetings Dr. Boyle,
I am a second year graduate student at WCU, currently studying fluency under Dr. David Shapiro. I really enjoyed reading your paper as advocacy is personally important to my viewpoint as a clinician. I am, however, wondering if our efforts as SLPs wouldn’t be better spent attempting to counsel and support PWS in coping effectively with social stigma rather than trying to affect gross cultural or societal changes. I also worry that the social stigma reduction strategies you discussed might not be broadly understood or salient to people who don’t personally know someone who stutters– that those are precisely the people such a campaign would likely be targeting. What is coming to mind is Black Lives Matter movement that encompasses in one way or another each of the three reduction areas you talked about. It has drawn a lot of attention, but I don’t know if it is really catalyzing meaningful social change.
With all that said, I totally agree that reducing social stigma and/or its impact on PWS is one of the many jobs of the SLP. I am curious where you think a young clinician’s energy could be best put to work on the broader issue of advocating for our clients?
Thank you very much,
K. Riddle
Hi Katie,
Thanks for your question. You make some really good points. I believe that both advocacy at the societal level and working with clients individually is a good way of approaching it. We shouldn’t necessarily expect to completely eradicate negative attitudes of the public, especially in the short term. We do need to deal with the fact that sometimes PWS will continue to receive negative reactions from others. So, because of that I do believe we need to work with PWS in treatment to increase coping skills to deal with that if it happens, and enhance and self-advocacy skills as well. However, we don’t want to unintentionally communicate the message that stigma is just another problem that the client has and needs to deal with. Stigma really is a societal injustice and so that component of it does need to be addressed. As SLPs, we are advocates for PWS and in that role we can educate others to reduce negative attitudes. Your point about the importance of contact is very appropriate. In the field of psychology, contact appears to be the most effective method of stigma reduction and seems to create more long term change. We really don’t know if protest efforts fundamentally change people’s perceptions, or whether they just suppress people voicing negative views publicly. Regarding whether or not there can be meaningful social change, we need to measure a number of different variables that have real life application. This includes not only psychological variables but also behavioral and physiological variables as well.
You can think of advocacy in your own role as an SLP on many different levels. It could be something simple like having a professional development course on stuttering so that other SLPs or teachers could learn more about it and dispel any misconceptions. This could be done with physicians, employers, or other types of professionals. In my experience at a university level we have done education sessions for faculty and staff on campus to increase awareness about stuttering. We have also done this in the schools. These programs included education (presenting myths about stuttering and contrasting them scientific facts about stuttering), and the presenters were PWS, so there was an element of contact as well. As an SLP, these types of meetings and sessions could be organized to educate others in the community. So it could be something like that, or raising awareness of self-help groups in the area. There are many such examples of practical things that could be done locally that would have the impact of educating others about stuttering, and making opportunities for PWS to share their stories with members of the public.
Best regards,
Michael