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.
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.
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