Enacted stigma and felt stigma experienced by adults who stutter

Highlights

• Relationships between enacted stigma, felt stigma, and mental health were analyzed.

• Enacted stigma was positively and significantly related to felt stigma.

• Enacted stigma and felt stigma were negatively related to mental health.

• Enacted stigma and felt stigma explained unique variance in global mental health.

• People who stutter experience social devaluation and anticipate these experiences.

Abstract

Purpose

The aim of this study was to (1) document the experiences of enacted stigma (external stigma, experienced discrimination) and felt stigma (anticipation and expectation of discrimination or negative treatment by others) in adults who stutter, (2) investigate their relationships to each other, and (3) investigate their relationships to global mental health.

Method

Participants were 324 adults who stutter recruited from clinicians and self-help group leaders in the United States. Participants completed an anonymous web survey consisting of measures of enacted stigma, felt stigma, and global mental health. Data analysis focused on obtaining descriptive statistics for enacted stigma and felt stigma, and performing correlational analysis between these variables, and also between these variables and global mental health.

Results

Most participants reported experiencing several different forms of social devaluation and negative treatment from other people at some point in their lives (i.e., enacted stigma), although they rarely experienced these events during the past year. Most participants agreed that they anticipate future stigmatizing experiences (i.e., felt stigma). Enacted stigma in the past year demonstrated a significant positive relationship to felt stigma. Both enacted stigma in the past year and felt stigma demonstrated significant negative relationships with global mental health. Enacted stigma in the past year and felt stigma were unique predictors of participants’ global mental health.

Conclusions

People who stutter experience discrimination and social devaluation, and they anticipate future stigmatizing experiences. Both of these types of stigma, enacted and felt, are associated with reduced mental health in adults who stutter. Assessment and therapy with adults who stutter should address these aspects of stuttering.

Introduction

The experience of stigma is a major problem encountered by people who stutter (PWS) (St. Louis, 2015). The experience of stigma includes instances in which PWS are reacted to or treated negatively. In addition, stigma can be perceived or felt by PWS in the anticipation or fear of being treated negatively (Corcoran & Stewart, 1998; Plexico, Manning, & Levitt, 2009). These experiences and feelings of being stigmatized may be related to the psychological distress, such as anxiety, that is often documented in adults who stutter (Iverach & Rapee, 2014). Although previous research has indicated that PWS experience negative reactions from others (Blood et al., 2011; Gabel, Blood, Tellis, & Althouse, 2004), and that they can come to fear or anticipate these reactions (Iverach & Rapee, 2014), studies that have compared enacted stigma and felt stigma within the same participants using focused measures are lacking. Furthermore, it has not yet been determined how these different components of stigma are related to global mental health. The purpose of this study was to document the enacted stigma and felt stigma experienced by adults who stutter, investigate the relationship between these two aspects of stigma, and determine whether relationships exist between them and global mental health.

One of the most cited definitions of stigma comes from Goffman’s (1963) seminal book. In his book, Goffman wrote that stigma is an “attribute that is deeply discrediting” and that it diminishes a person in the eyes of others “from a whole and usual person to a tainted, discounted one” (p. 3). Jones et al. (1984) added to this definition by highlighting how stigma can be both a trait (e.g., symptoms, skill deficits, appearances, or labels) and an outcome of possessing that trait (e.g., discrimination, avoidance, segregation). Link and Phelan (2006) described the process through which a stigmatized characteristic can lead to negative consequences for the individual possessing that characteristic. Those authors described how labeling a difference that is perceived as undesirable leads to generation of stereotypes of individuals with those characteristics. These stereotypes can lead to negative emotional reactions and ultimately discrimination from the public. As a result of this separation from others, individuals with stigmatized conditions experience a status loss in society in addition to decrements in physical and psychological well-being.

Corrigan, Rafacz, and Rüsch (2011) proposed a progressive model of stigma which separated public stigma from self-stigma. Public stigma represents the beliefs and actions of members of the public toward the stigmatized group, and self-stigma refers to the internalization of public stigma among individuals with stigmatized conditions. Importantly, this model of self-stigma was conceptualized to be trickle-down, or progressive, in nature such that stigma awareness precedes agreement with those negative views, and agreement precedes application of negative societal attitudes to the self. The application of stigmatizing attitudes to the self would then lead to reductions in self-efficacy and self-esteem and finally limitations in societal participation. Despite the popularity of this model in the area of mental illness, other researchers have disputed the notion that feelings of stigma must necessarily be preceded by instances of public stigma (Livingston & Boyd, 2010). Another conceptualization of stigma that is widely used in the psychology literature separates enacted stigma from felt stigma and this model will be the focus of this paper.

Scambler (2009) stated that enacted stigma referred to episodes of discrimination against individuals with a societally or culturally stigmatized condition solely on the ground of being imperfect. Enacted stigma can therefore be thought about as external stigma which is expressed by the public toward individuals with devalued characteristics (Molina, Choi, Cella, & Rao, 2013). Enacted stigma includes discrimination (e.g. being denied a job) as well as more subtle forms of social devaluation such as being stared at, being patronized or treated unkindly, being taken less seriously, or being avoided (Quinn & Earnshaw, 2013). Therefore enacted stigma is a general term that encompasses any externally stigmatizing reaction that would result in the stigmatized individual being treated unfairly or negatively (Gray, 2002). Essentially, enacted stigma is what the public actually does to the person with a stigmatized condition.

Felt stigma on the other hand, has been defined as knowledge and expectations about the probability that enacted stigma could occur under certain circumstances (Herek, Gillis, and Cogan, 2009), and the possibility of accompanying feelings of dread and fear in anticipation of social rejection (Jacoby, 1994; Livingston & Boyd, 2010; Scambler, 2009). Felt, or anticipated stigma, is people’s belief that they might encounter negative treatment from others if their stigmatized condition is exposed (Quinn & Earnshaw, 2013). Even though felt stigma can certainly result in anxiety in certain social situations (Gray, 2002), felt stigma is not synonymous with an anxiety disorder. Anxiety disorders are diagnosed when fear or anxiety is out of proportion to the situation and normal functioning is inhibited (American Psychiatric Association, 2017). Felt stigma on the other hand is a more general term that indicates an awareness and expectation of enacted stigma, and even though fear or anxiety may be experienced, they are not necessarily present to a degree that is out of proportion to the situation. It is also conceivable for an individual to feel or anticipate being stigmatized without experiencing the physical tension and situational avoidance that is typically associated with anxiety. Therefore, although the terms are related, anxiety and felt stigma are not one in the same. Whereas enacted stigma relates to what the public does to a person with a stigmatized condition, felt stigma is an internal experience for the individual with that condition. If people with a stigmatized condition are aware of negative societal stereotypes about people with their condition, they may expect social devaluation even if they have never experienced overt discrimination (Jacoby, 1994; Quinn & Earnshaw, 2013).

Enacted stigma experienced by PWS is clearly seen in studies documenting job discrimination and bullying. It is important to point out that although the definition of enacted stigma involves expression of discrimination or devaluation, research with adults who stutter has not observed actual instances of public stigma because of the obvious difficulties researchers would have in obtaining those data in real life situations. Despite this, several studies have sought to document these phenomena through perceptions of members of the public, as well as reports from PWS regarding their experiences of enacted stigma through self-report. In a study of the perceptions of 644 employers, Hurst & Cooper (1983a) found that about 50% of participants believed that stuttering decreased employability, and many believed that PWS should seek jobs requiring little oral communication. Hurst & Cooper (1983b) also studied 152 vocational rehabilitation counselors’ perceptions and found that over 75% believed that stuttering would be vocationally handicapping. Silverman and Paynter (1990) found that college students viewed a factory worker and lawyer who stuttered more negatively (including being less employable and competent) than a fluent worker. Silverman and Bongey (1997) also reported that nurses viewed a doctor who stutters more negatively than a fluent doctor (e.g., less educated, competent, reputable). Other studies have found that university students (Gabel et al., 2004), teachers (Irani, Gabel, Hughes, Swartz, & Palasik, 2009), and speech-language pathologists (Swartz, Gabel, Hughes, & Irani, 2009) perceive certain careers to less appropriate for PWS, especially those that require frequent oral communication (e.g., attorney, judge, speech-language pathologist, counselor, physician). There have also been a few studies that have documented accounts of workplace discrimination directly from PWS. PWS have reported that employers had misjudged their abilities and that stuttering damaged their chances of being hired or promoted (Klein & Hood, 2004). Qualitative research with PWS also supports the notion that stuttering is perceived to limit occupational success and progress (Bricker-Katz, Lincoln, & Cumming, 2013).

In addition to workplace discrimination, bullying (physical, verbal, relational, and cyberbullying) can also be experienced by PWS, and these experiences can be quite common (Hugh-Jones & Smith, 1999). Studies have shown that PWS are about three times more likely to be bullied than fluent controls (Blood & Blood, 2004; Blood & Blood, 2007; Blood et al., 2011). Children who stutter are also more likely to be perceived as a bully-victim, more likely to be perceived as withdrawn, and to be socially rejected (Davis, Howell, & Cooke, 2002). Many PWS have reported being bullied during school-age years and adolescence (Erickson & Block, 2013) and these experiences can create lasting memories that persist into adulthood (Blood & Blood, 2016; Daniels, Gabel, & Hughes, 2012). Although bullying and job discrimination can be considered aspects of enacted stigma, as mentioned previously the construct of enacted stigma is much broader and can include more subtle responses including being treated unkindly, being avoided, stared at, being taken less seriously, or being patronized (St. Louis, 2015). These aspects of stuttering have not been extensively detailed to date in a large sample of adults who stutter. Still, the findings reviewed above indicate that the public can indeed treat PWS negatively.

Several qualitative research studies have illustrated that many PWS anticipate and are concerned about being perceived negatively by others solely due to their stuttering. Specifically, PWS have stated they believe they will be perceived by others as “mentally defective,” “strange,” “not good enough,” “a fool,” “incompetent,” “freak of nature,” “not a whole person,” “mentally retarded,” “inferior,” “socially crippled,” “not normal,” “an imbecile,” “an idiot,” or “crazy” because of their stuttering (Bricker-Katz, Lincoln, & McCabe, 2010; Corcoran & Stewart, 1998; Klompass & Ross, 2004; Plexico et al., 2009; Whaley & Parker, 2000). The fear of being perceived negatively could perpetuate avoidance of speaking or social situations among PWS. For example, Blood, Blood, Tellis, and Gabel (2003) found that most PWS avoid talking about stuttering or discuss it very rarely. Furthermore, some PWS attempt to pass as a fluent speaker and hide their stuttering from communication partners altogether (Butler, 2013). When concealing stuttering is not possible, PWS have reported attempting to minimize their stuttering to reduce listener discomfort (Plexico et al., 2009). Scales such as the Overall Assessment of the Speaker’s Experience of Stuttering (OASES, Yaruss & Quesal, 2006), and the Unhelpful Thoughts and Beliefs about Stuttering (UTBAS) scale (St. Clare et al., 2009) include certain items that assess felt stigma. In addition to those more general scales, Boyle (2013) developed the Self-Stigma of Stuttering Scale (4S) to measure self-stigma according to the specific model of Corrigan et al. (2011) which included a subscale of ‘stigma awareness.’ That portion of the scale measured how aware PWS are of negative reactions of others, including stereotypes, prejudiced emotional reactions, and discrimination. In a sample of 291 adults who stutter, Boyle (2013) found that 86% of the sample demonstrated moderate to high levels of awareness of public stigma (i.e., on average, they agreed that members of the public respond to them negatively in domains of attitudes, emotions, and actions). Boyle (2015) conducted a follow-up study with 354 adults who stutter and found that 84% of the sample demonstrated moderate to high levels awareness of public stigma.

Despite the finding that a vast majority of adults who stutter are aware of public stigma regarding stuttering, the 4S did not directly measure the anticipation, worry, and fear of experiencing future stigmatizing experiences (e.g., discrimination, devaluation) among PWS in those studies (Boyle, 2013; Boyle, 2015). This is the case because the 4S was designed according to Corrigan et al.’s (2011) model of self-stigma, and not from the more general model of stigma which highlights enacted stigma and felt stigma as the major constructs (Jacoby, 1994; Quinn & Earnshaw, 2013). Self-stigma, or internalized stigma (i.e., agreement with negative stereotypes and application of negative societal attitudes to the self), can be conceptually distinguished from felt stigma (i.e., anticipation of future stigmatizing events). Because of this, the construct of felt stigma, as described in this paper, has only partially examined by the 4S. That is, the 4S has measured awareness of negative societal attitudes, but not level of anticipation of experiencing public stigma among PWS and this is a limitation of previous research that is addressed in this study. Despite these limitations, when examining the research presented above, it is clear that many PWS are aware of being viewed negatively and this awareness may lead to fear and avoidance of speaking.

The experience of stigma has been shown to have negative implications for mental and physical health in a variety of populations including individuals with AIDS, mental illness, physical deformities, epilepsy, drug addiction, and LGBT individuals (Birtel, Wood, & Kempa, 2017; Denton, Rostosky, & Danner, 2014; Earnshaw, Lang, Lippitt, Jin, & Chaudoir, 2015; Jacoby, 1994; Keusch, Wilentz, & Kleinman, 2006; Miller et al., 2016). In the area of stuttering, it was found that increased awareness and internalization of public stigma among adults who stutter, measured with the 4S, are related to reduced self-efficacy, self-esteem, life satisfaction, hope, empowerment, quality of life, social support, overall physical health, and health care satisfaction (Boyle, 2013; Boyle, 2015; Boyle & Fearon, 2017) and increased anxiety, depression, stress, and severity of physical speech disruption (Boyle, 2015; Boyle & Fearon, 2017). It has also been proposed that the increased risk for anxiety disorders often found in PWS is related to the negative reactions that PWS have received from others throughout the course of their lives (Iverach & Rapee, 2014; Iverach et al., 2009). In addition, reduced quality of life (Craig, Blumgart, & Tran, 2009) and increased negative affect (Iverach et al., 2010) in some PWS may also be related to negative experiences with enacted stigma and its resulting fear of negative evaluation and perceived social threat (Brundage, Winters, & Beilby, 2017). It should be noted that Manning and Beck (2011) warned against the possibilities of further stigmatizing people who stutter by attaching diagnoses of psychological disorders to PWS, including personality disorders, and in their own research found that the prevalence of personality disorders in people who stutter was no different from the general population (Manning & Beck, 2013). However, Manning and Beck (2013) did discuss that anxiety and negative emotions can be seen as a natural reaction to stuttering. Iverach et al. (2011) described that it would make sense to investigate the mental health of PWS because they experience negative consequences that include “…negative listener reactions and stereotypes, bullying and teasing, social isolation and rejection… expectancies of social harm and fear of speaking in social situations” (p. 66). These responses represent key elements in the constructs of enacted and felt stigma described above. Hopefully it has been shown in this literature review how the terms enacted stigma and felt stigma can be helpful to describe many of the difficulties experienced by PWS. Although the terms of enacted stigma and felt stigma may not be as familiar to the lay public compared to terms such as stereotypes or discrimination, they are used frequently in the psychology literature (Gray, 2002; Herek et al., 2009; Jacoby, 1994; Livingston & Boyd, 2010) to aid in describing, summarizing, and quantifying different components of stigma in various populations.

To summarize, from the evidence presented above it could be the case that the instances of public stigma faced by PWS (i.e., enacted stigma) lead to an internalization of those negative societal views. PWS become aware that they are stigmatized, agree with those negative views, and incorporate them into their own self-constructs. Once this happens, PWS may experience decrements in self-esteem and self-efficacy and could limit their communication with others. PWS can also begin to anticipate receiving negative reactions from the public (i.e., felt stigma) which could contribute to fear, anxiety, and avoidance. Experiences of public stigma and the anticipation of experiencing public stigma may therefore be precursors to reduced well-being among PWS. It is therefore worthwhile to investigate the links between enacted stigma, felt stigma, and mental health in adults who stutter.

The review of literature above suggests that PWS can experience both enacted stigma, as well as felt stigma, and that both of these aspects of stigma could possibly be related to mental health. In the stuttering literature to date however, the constructs of enacted stigma and felt stigma linked specifically to stuttering have not been assessed with focused measures. The 4S has not measured all aspects of felt stigma as defined in this paper because it does not directly measure fear and anticipation of enacted stigma. Also, because the 4S was focused on assessing self-stigma, it did not address enacted stigma at all. The relationship between enacted and felt stigma experienced by adults who stutter is also currently unknown because studies are lacking that have analyzed both of these variables with concrete measures within the same sample of PWS. Therefore it is not known whether enacted stigma and felt stigma overlap considerably, or whether they are discrete and therefore worthy of measuring separately. Furthermore, research studies attempting to identify associations between stuttering-specific enacted stigma and felt stigma and mental health are lacking.

The aim of this study therefore was to document the enacted stigma (both lifetime, and within the past year) and felt stigma experienced by adults who stutter and their associations. Specifically, the purposes of the study were to: (1) determine percentages of adults who stutter who had reported ever experiencing different types of stigmatizing episodes from the public over the course of their lives, and how frequently these episodes have been experienced in the past year; (2) identify percentages of adults who stutter who experience felt stigma; (3) assess the relationship between felt stigma and enacted stigma in the past year; and (4) analyze relationships between enacted stigma in the past year and global mental health, as well as between felt stigma and global mental health. Because the first two aims were exploratory and descriptive in nature, no a priori hypotheses were made for either of them. Regarding the third aim, based on the literature reviewed in this paper suggesting that enacted and felt stigma are different but related aspects of stigma (Herek et al., 2009; Jacoby, 1994; Livingston & Boyd, 2010; Scambler, 2009), it was predicted that these two variables would be positively related. Regarding the fourth aim, in accordance with prior research reviewed above, it was hypothesized that both increased enacted stigma in the past year and increased felt stigma would be negatively related to global mental health. Furthermore, it was hypothesized that enacted stigma in the past year and felt stigma would each separately and significantly predict global mental health after the shared variance between the two variables was partialed out of the analysis.