deviant status, and (b) acts in such a way to maintain their position of power. Conversely, it is assumed that the devalued group is less able to repel accusations of deviance.
John has a hearing loss and has been fit with hearing aids. He uses the hearing aids at home without any hesitation and finds them to be beneficial. However, he doesn’t use his hearing aids in the workplace because he worries his coworkers will notice them and question his ability to do his job. His concern is based on his past experience in the workplace. Specifically, he has observed that many of his coworkers hold negative stereotypes toward older adults who use hearing aids (e.g., “they are senile and don’t understand anything”). He has also observed that he feels personally threatened in some situations at work, but not in others. John finds work-related meetings very stressful because he is afraid his coworkers will notice he has hearing loss because he doesn’t always understand what is being discussed. During those meetings John tends to sweat under his armpits and develops red blotches in the neck area (i.e., John’s natural reactions to stressful situations). He always has a headache by the time the meeting ends. Recently, a new management position was advertised at work. Notwithstanding the fact that he feels he has the competencies required to take on a management position, John did not apply for a promotion. In his mind, that job would too stressful because it would make it even more likely that his coworkers would become aware of his hearing loss (i.e., the outcome of the stigma). Not only did he not apply for the promotion, but John is also contemplating early retirement. He finds going to work too stressful.
Throughout the chapter, an attempt is made to discuss labeling theory within the context of adults who have an acquired hearing loss.2 It is our view that a better understanding of the factors that influence the labeling and stereotyping of people who have an acquired hearing loss, as well as the effects and consequences of being stigmatized, will be helpful to hearing health care professionals. Moreover, this knowledge should make it possible to develop intervention programs that will cater to the specific rehabilitation needs of people with hearing loss who are vulnerable to being labeled by others and feeling the negative effects of social stigma.
The sections that follow provide definitions and a description of social stigma. Then, the pioneering work of Raymond Hétu (1996) is summarized; specifically, we describe the stigmatization and normalization processes experienced by people with hearing loss. That is followed by a presentation of the five requisite components of the modified labeling theory, proposed by Link and Phelan (2001). Finally, we discuss the clinical implications of stigma on seeking health care by hearing professionals, adherence to recommended treatments, and the types of intervention services that could be offered to individuals who may be affected by hearing loss stigma.
Definitions of Stigma
Individuals are stigmatized when they possess, or are thought to possess, an attribute or characteristic that conveys a social identity that is devalued in a particular social context (Crocker, Major, & Steele, 1998). Stigmatization is a complex and multifaceted phenomenon. In Erving Goffman’s major treatise entitled Notes on the Management of a Spoiled Identity, stigma was defined as “an attribute that is deeply discrediting” that reduces the individual “from a whole and usual person to a tainted, discounted one” (Goffman, 1963, p. 3). It is generally agreed that stigmatization may occur when two groups of people exist: insiders (people who have a stigmatizing trait), and outsiders (people who do not have this trait). When outsiders (i.e., the governing group) perceive a trait to be stigmatizing, they might devalue, prejudice, and discriminate against the insiders (Dovidio, Major, & Crocker, 2000; Heatherton, Kleck, Hebl, & Hull, 2000). This is sometimes referred to as public stigma when the general public reacts negatively to an individual or group of people based on a stigmatizing attribute (Watson, Corrigan, Larson, & Sells, 2007). Self-stigma occurs when an individual who possesses a stigmatizing trait directs their own prejudicial attitudes inward, and devalues themself (Jones, Farina, Hastorf, Miller, & Scott, 1984; Major & O’Brien, 2005; Watson et al., 2007).
Goffman, a sociologist, proposed a taxonomy of stigmas including “abominations of the body” (e.g., amputated limbs), “blemishes of individual character” (e.g., ex-convicts), and “tribal identities” (e.g., some religious belief systems). According to this conceptualization of stigma, individuals who possess such traits or characteristics were considered “deviant” or “abnormal” relative to a reference group (i.e., the outsider group), were devalued as individuals, and discredited as members of their society. A variety of marks, attributes, and characteristics may be the source of stigmatization. For example, in many Western societies, people who are obese, short, HIV positive, diagnosed with a genetic syndrome such as trisomy 21, who smoke tobacco, belong to a given ethnic or a specific religious group or sect, or who speak with a foreign accent may be stigmatized, just to name a few.
Building on Goffman’s work, Jones et al. (1984) proposed six key dimensions of stigmas, including concealability, course of the mark, disruptiveness, aesthetics, origin, and peril. Several of the dimensions identified by Jones et al. are particularly relevant to the stigma associated with hearing loss. Concealability refers to the extent to which a stigmatizing trait is apparent to others. The course of the mark refers to the possibility that the attribute may become more prominent over time. Disruptiveness is in reference to how the stigmatizing trait interferes with social interactions. Aesthetics, relates to physical—“observable”—traits, and the extent to which these traits are unattractive as perceived by others. Origin refers to the perceived responsibility of the individual in acquiring or creating the trait. Finally, peril relates to the perceived danger of the trait to others in the social setting. Of these dimensions of stigma, Crocker and colleagues (1998) proposed that concealability and origin are the most influential in giving rise to stigmatization.
Hearing Loss Stigma
In most Western societies, people who have hearing loss are stigmatized. Goffman (1963) described how the stereotypes associated with hearing loss (he used the term deafness) are frequently generalized to other personal characteristics that carry a negative connotation. Hearing loss is often misunderstood as an intellectual challenge or a deficiency in personality and character. It is noteworthy that both intellect and personality are characteristics that may potentially prompt devaluation from others. Stigmatization of persons who have congenital hearing loss can be traced back to Babylonian laws, pre-Christian laws, religious texts, and the writings of Aristotle and Saint Augustine: Persons who could not hear or speak were likened to animals who were not capable of having intelligence or faith in God (Roots, 1999).
Of the dimensions proposed by Jones et al. (1984), perhaps the most relevant issue to the discussion of hearing loss stigma is concealability. Goffman (1963) referred to people who have marks or traits that are immediately apparent as the discredited, whereas individuals whose mark or trait is not readily obvious to others were referred to as the discreditable. Quinn (2006, p. 84) defined a concealable stigma as “a stigmatized identity that is not immediately knowable in a social interaction.” Several aspects of the stigma process may differ depending on the concealability of the trait. For example, a person with a history of mental illness or a person who is HIV positive may decide to conceal this personal characteristic from some people with whom they interact. This option is not possible to someone who has a conspicuous attribute (e.g., skin color, visible physical deformity). Hearing loss is an impairment that an individual can sometimes conceal from others. This explains, at least in part, why persons with acquired hearing loss have consistently requested that hearing aid manufacturers make the smallest and most inconspicuous hearing aids possible.
Social stigma research has shown that, relative to conspicuous stigmatizing attributes, having an invisible stigmatizing trait has both some advantages and disadvantages. For example, one advantage of having a conspicuous characteristic is that the individual can decide if, when, and to whom to reveal. Should she or he choose to conceal, one drawback is that there is always discomfort associated with the possibility of having this characteristic unexpectedly disclosed during a social interaction (Case Study 4–2).
There is an increasingly comprehensive body of literature that addresses the psychocognitive consequences of concealing a stigmatizing trait. Studies have shown that concealing a stigmatizing trait increases the cognitive load required to take part in social interactions (Lane & Wegner, 1995; Smart & Wegner, 1999,). In addition to exerting the cognitive effort normally required to participate in a conversation, a person who is attempting to pass as “normal” will expend additional cognitive resources to avoid divulging any information, signals, or cues that would betray efforts to conceal. This may be particularly stressful for a person who has a hearing loss, given that normal conversations (even those in which disclosing hearing loss is not an issue) invariably require more cognitive resources than are typically required by persons with normal hearing who perform the same task (Fraser et. al., 2010).
At the request of her family, Jane had a hearing test. The results of the audiologic assessment revealed that she had a bilateral moderately severe sensorineural hearing loss. She was told that the hearing loss is most likely due to a normal aging process (i.e., presbycusis). Jane was miffed by the way her hearing results were communicated to her. In addition, she holds very negative stereotypes about hearing loss and aging. When she was a child, Jane’s grandmother had hearing loss and used hearing aids. Because her grandmother frequently misunderstood and often needed several repetitions before she understood, Jane and her sister thought of her as being old and senile. That image of hearing loss and aging has stayed with her. Because she doesn’t want to be viewed in the same way that she labeled her grandmother, Jane decided to conceal her hearing loss from everyone. In fact, she often avoids attending family social events because she is afraid her siblings will recognize that she has difficulty hearing and make fun of her.
Related to the previous point, the amount of stress associated with participating in a social interaction will vary according to the importance attributed to unwillingly disclosing the stigmatizing trait and the likelihood of that happening. For example, for someone who has an eating disorder that is not physically apparent to others, the stress associated with a conversation will be diminished when the topic of discussion does not center around food and eating, while the stress will likely be heightened when the discussion centers around those activities. For people with hearing loss, in most social situations there is a risk of communication breakdowns due to the hearing impairment. Thus, in every social interaction, there is risk of disclosure. This may explain why many people with hearing loss often avoid social interactions. Although from a social health perspective, this strategy may be considered “maladaptive,” it is nonetheless a “safe” strategy (Case Study 4–3).
The manner and the timing of disclosure will influence how others receive this information. For example, if a third party unwittingly discloses someone’s stigmatizing trait (e.g., when a person with hearing loss has difficulty following conversation with another person and their spouse apologizes and tells the conversation partner of their spouse’s hearing loss), or if it is divulged only after a trusting relationship is formed, the person who possesses the trait may be seen as being dishonest or untrusting (for example, when a person with hearing loss tells a colleague, with whom they have worked closely for a period of time, about the presence of the hearing loss, the coworker may wonder if the person did not trust them enough to disclose the hearing loss earlier. If this is the case, then there may be other matters that may be of importance at work that the person with hearing loss may not divulge). If it is disclosed too soon after meeting someone, there is a danger that others will perceive this disclosure as an excuse for incompetence or social inaptitude. For example, it may seem odd to others if a person with hearing loss immediately discloses the presence of the hearing loss when meeting someone for the first time (Bairan et al., 2007; Corrigan & Matthews, 2003; Joachim & Acorn, 2000; Pachankis, 2007).
Since his retirement about 10 years ago Paul has played golf regularly with his two sons and his nephew. However, recently Paul noticed that he had more and more difficulty hearing his golf partners when they played. He often felt left out of the conversations or required multiple repetitions before he understood the topic of the discussion at hand. Paul does not want to admit to his golf partners that he has trouble hearing because he thinks they will associate that with the fact that he is getting old and cognitively challenged. In any case, Paul doesn’t think his hearing problems are that serious, and says, “It is just normal to hear less well as we get older.” Nonetheless, Paul is embarrassed because he feels he has become a burden to his golf partners. Recently, he has invoked excuses for not joining his sons and nephew for a round of golf. He would rather stay home than potentially embarrass himself in their presence.
Studies have also shown that there is a direct relationship between the desire to conceal a stigma and the importance given to the stigmatizing trait. For example, Major and Gramzow (1999) demonstrated that the more women perceived abortion to be a stigmatizing attribute, the more they attempted to keep their own abortion secret from others. Extending this to hearing loss, one would presume that the greater the amount of negative stereotypes that someone attributes to having hearing loss, the more effort that person will expend to try to conceal the hearing impairment from others (Case Study 4–4).
A final point about concealable attributes is that the person who has the stigmatizing characteristic is more likely to know what family members, friends, and workmates think about that trait. That is, because they may not be aware that someone in their midst has a stigmatizing trait, others may express their attitudes about that specific stigmatized attributes more freely. This is different from a conspicuous stigma (e.g., obesity) because in the presence of a person with a visible stigma, others are likely to be more diplomatic (i.e., politically correct) about how they express their attitudes about the specific stigmatizing trait. This information may be of value for rehabilitation. Knowing the attitudes of significant others toward hearing loss should provide insights on how to proceed in disclosing the hearing loss to others. For example, a person with hearing loss may choose first to disclose the impairment to someone they trust and respect or to someone they know to be less prejudicial toward people with hearing loss. In addition, they may solicit that person’s help by using repair strategies during conversations. This strategy will enable the person with hearing loss to improve his or her self-esteem and to gain confidence as a communication partner in a given setting.
The results of a recent audiologic assessment revealed that Ruth has a hearing loss that is attributable to aging. Because she holds negative stereotypes associated with hearing loss in persons her age, Ruth has chosen not to reveal her hearing loss to her friends and family.
Ruth is an avid bridge player. At the bridge club, her perception is that most bridge players do not want to be paired with someone with hearing loss because they can’t follow the hand and often make inexcusable mistakes because they don’t hear well. Because she doesn’t want to be seen as a hearing-impaired person, Ruth has chosen not to divulge her hearing difficulties at bridge. However, she finds that it is very stressful and effortful to keep this secret from her card-playing partners. Recently, she has noticed that she sometimes makes mistakes while playing bridge (e.g., inappropriate bids) because she is concentrating so much on not revealing her hearing loss to others.
Conceptualizations of the Stigma Process—Persons and Hearing Loss
To our knowledge, Hétu (1996) was the first scholar to describe the issue of stigma associated with hearing loss from the perspective of individuals with an acquired hearing loss. In his seminal article “The Stigma Attached to Hearing Impairment,” Hétu (1996) proposed two conceptual models that he based on the generic literature available on stigma from the social sciences, and on the results of interviews with adult males with an acquired hearing loss (and their spouses). The first model described the stigmatization process. The second model described the normalization process. According to the stigmatization process model, people who are discredited (i.e., stigmatized) because of their hearing impairment experience shame. Shame, Hétu suggested, is the emotion that accompanies threats to one’s sense of social belonging. Shame is a social control mechanism that instills acceptable behavior and inhibits unacceptable behavior. According to Hétu’s stigmatization process, when people with hearing loss interact with people who have normal hearing, communication breakdowns and other “deviant” behaviors occur (Figure 4–1). These breakdowns prompt demeaning and discriminatory reactions from communication partners and result in the person who has a hearing loss feeling shame and guilt. As a consequence of the stress induced, and feelings of incompetency that develop, the person’s self-esteem and social identity are diminished. The strategy often used to avoid stress and feelings of incompetency associated with unsatisfying social interactions is to conceal their hearing loss from their communication partners or to withdraw from social activities.
Figure 4–1. Hétu’s stigmatization process model (from Hétu, 1996).
Hétu (1996) also proposed a two-step normalization process model to describe how people with hearing loss may overcome feelings of shame and guilt associated with hearing impairment, and how they might regain a more favorable social identity (Figure 4–2, upper panel). The first stage of the normalization process involves meeting and interacting with other people who also have a hearing loss (members of the in-group). Together, members of the in-group share experiences of hearing difficulties and the resultant unsatisfactory social interactions. It is proposed that, through therapeutic activities, participants begin to realize that unsatisfactory social interactions are the result of the hearing loss, rather than other factors that may be unjustifiably attributed to them (e.g., being intellectually dull, an uninteresting communication partner, an unfriendly person, unwilling to communicate, or otherwise responsible for the communication breakdowns). And, through these activities, individuals who are stigmatized because of hearing loss begin to realize there are others who feel denigrated, diminished, or ashamed of themselves because of hearing difficulties. They realize they are not alone in these feelings. These realizations trigger the normalization process, and the restoration of a more positive social identity is initiated. Individuals with hearing loss become more willing to engage in social activities and interactions. They may learn appropriate coping strategies and experience success in using these strategies when they interact in this favorable social environment (i.e., in the presence of others who have hearing loss). Through the normalization process, people with hearing loss start to feel better about themselves.
Figure 4–2. Hétu’s two-step normalization process model (from Hétu, 1996).
In the second stage of the normalization process (see Figure 4–2, lower panel) people with hearing loss are encouraged to interact with people in their entourage who do not have a hearing loss. They are taught and encouraged to inform their communication partners that they have a hearing loss and to solicit the use of communication strategies that will optimize the exchange of information. Under these circumstances, it is suggested that communication partners are more likely to acquiesce to the requests of the persons with hearing loss. It is likely that communication will become more efficacious and more satisfying for both communication partners. Participating in more satisfying verbal conversations (i.e., social interactions) restores a more favorable social identity for the person with hearing loss. As the process of restoration continues, the person with hearing loss will gain confidence in their ability to be a satisfying communication partner. Consequently, they are more likely to participate in valued activities that include people who do not have a hearing impairment (members of the outsider group), and will likely regain a more positive image of themselves. Hétu’s contribution of providing a conceptual model of stigmatization and guidelines for rehabilitative services that restore a favorable social identity contributed enormously to the domain of rehabilitative audiology as well as to the social integration of adults with an acquired hearing loss (Case Study 4–5).
Around the same time that Hétu published this article, important works were being published on the sociological aspects of stigmatization. The next section describes the modified labeling theory. In the authors’ view, most of the concepts described in this model are applicable to the stigma associated with hearing loss. They believe that hearing health care professionals will benefit from having a better understanding of the self-stigmatizing process and its effects on people who have a hearing loss. Additionally, it is their belief that, largely due to Hétu’s work, integrating aspects of this model into the domain of rehabilitative audiology will complement and extend the current level of knowledge that is available. Undoubtedly, a more comprehensive understanding of the self-stigmatizing process will lead to the development of more appropriate rehabilitation services for people who are stigmatized due to their hearing loss.
Ruth, the avid bridge player from Case Study 4–4, agreed to attend a 5-week communication strategies Audiologic Rehabilitation program. Ruth found the group AR meetings very helpful. She enjoys the fact that everyone in the group shares their experiences, both pleasant and unpleasant, about hearing difficulties with the other group members. In this setting, the open discussions about hearing loss and its manifestations are very useful and nonthreatening. She has learned communication strategies that she applies in various settings.
Generally, she finds the other group members interesting. However, she is particularly impressed by two of the women in her group. They are intelligent, assertive, and confident in themselves. Both of them are actively involved in community activities and are quite open about the fact that they have hearing loss that makes it difficult to communicate in certain situations. Observing these women in the group setting has helped Ruth regain some confidence in herself and it served to boost her self-esteem.
Some group activities included role-playing activities. One of those activities consisted of learning how to inform others, without self-pity and shame, of one’s hearing loss. Practicing this activity in the group provided Ruth with the skills and confidence required to eventually inform her bridge-playing partners of her hearing loss and to suggest communication strategies they can use to reduce the possibility of communication breakdowns. She realized her friends from the AR program did not make such a big deal about their hearing losses. Consequently, she found attending bridge club less stressful than it was when she was concealing her hearing problems from her friends.
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