Stigma



Stigma


Diane L. Stuenkel

Vivian K. Wong




My car came to a stop at the intersection. I looked around me at all the people in the other cars, but no one there was like me. They were apart from me, distant, different. If they looked at me, they couldn’t see my defect. But if they knew, they would turn away. I am separate and different from everybody that I can see in every direction as far as I can see. And it will never be the same again.

—Client with new diagnosis of cancer


INTRODUCTION

This chapter demonstrates how the concept of stigma has evolved and is a significant factor in many chronic illnesses and disabilities. It also explores the relationship of stigma to the concepts of prejudice, stereotyping, and labeling. Because stigma is socially constructed, it varies from setting to setting. In addition, individuals and groups react differently to the stigmatizing process. Those reactions must be taken into consideration when planning strategies to improve the quality of life for individuals with chronic illnesses.

Although stigmatizing is common, not all individuals attach a stigma to their disease or disability. This chapter does not assume that all who come in contact with those who are disabled or chronically ill devalue them; rather, it insists that each of us examine our values, beliefs, and actions carefully.

Merriam Webster (2011a) defines stigma as a “mark of shame or discredit, an identifying mark or characteristic,” and as a “mark of guilt or disgrace” (2011b). Goffman (1963) traced the historic use of the word stigma to the Greeks, who referred to “bodily signs designed to expose something unusual and bad about the moral status of the signifier” (p. 1). These signs were cut or burned into a person’s body as an indication of being a slave, a criminal, or a traitor. Notice the moral and judgmental nature of these stigmas. The disgrace and shame of the stigma became more important than the bodily evidence of it. Labeling, stereotyping, separation, status loss, and discrimination can all occur at the same time and are considered components of the stigma (Link & Phelan, 2001).


THEORETICAL FRAMEWORKS: STIGMA, SOCIAL IDENTITY, AND LABELING THEORY

Society teaches its members to categorize persons by common defining attributes and characteristics (Goffman, 1963). Daily routines establish the usual and the expected. When we
meet strangers, certain appearances help us anticipate what Goffman called “social identity.” This identity includes personal attributes, such as competence, as well as structural ones, such as occupation. For example, university students usually tolerate some eccentricities in their professors, but stuttering, physical handicaps, or diseases may bestow a social identity of incompetence. Although this identity is not based on actuality, it may be stigmatizing.

One’s social identity may include: 1) physical activities, 2) professional roles, and 3) the concept of self. Anything that changes one of these, such as a disability, changes the individual’s identity and, therefore, potentially creates a stigma (Markowitz, 1998). Goffman (1963) used the idea of social identity to expand previous work done on stigma. His theory defined stigma as something that disqualifies an individual from full social acceptance. Goffman argued that social identity is a primary force in the development of stigma, because the identity that a person conveys categorizes that person. Social settings and routines tell us which categories to anticipate. Therefore, when individuals fail to meet expectations because of attributes that are different and/or undesirable, they are reduced from accepted people to discounted ones—that is, they are stigmatized.

Goffman recognized that people who had stayed in a psychiatric institute or a prison were labeled. To label a person as different or deviant by powers of the society is applying a stigma (Goffman, 1963). In general, labeling theory is the way that society labels behaviors that do not conform to the norm. For instance, an individual experiencing constant drooling or the leakage of food that requires frequent wiping of the mouth exhibits behaviors different from the norm. The difficulty in swallowing may be labeled by society as deviant behavior, despite the fact that tremor and dyskinesias associated with Parkinson’s disease may be the cause (Miller, Noble, Jones, & Burn, 2006). Therefore, the concept of deviance versus normality is a social construct. That is, individuals are devalued because they display attributes that some call deviant (Kurzban & Leary, 2001).

During the 2 decades following Goffman’s work in the 1960s, extensive criticism arose concerning the impact and long-term consequences of stigma on social identity. In the area of mental illness, critics resisted the theory that stigma could contribute to the severity and chronicity of mental illness. In a series of studies, Link proposed a modified labeling theory that asserted that labeling, derived from negative social beliefs about behavior, could lead to devaluation and discrimination. Ultimately, these feelings of devaluation and discrimination could lead to negative social consequences (Link, 1987; Link et al., 1989; Link et al., 1997). Those who are labeled with mental illness often are excluded from social activities and discriminated against when they do participate.

In 1987, Link compared the expectations of discrimination and devaluation and the severity of demoralization among clients with newly diagnosed mental illness, repeat clients with mental illness, former clients with mental illness, and community residents (Link, 1987). He found that both new and repeat clients with mental illness scored higher on measures of demoralization and discrimination than community residents and former clients with mental illness. Further, he demonstrated that high scores were related to income loss and unemployment.

In 1989, Link and colleagues tested a modified labeling theory on a similar group of clients with newly diagnosed mental illness,
repeat clients with mental illness, former clients, untreated clients, and community residents who were well (Link et al., 1989). They found that all groups expected clients to be devalued and discriminated against. They also found that, among current clients, the expectation of devaluation and discrimination promoted coping mechanisms of secrecy and withdrawal. Such coping mechanisms have a strong effect on social networks, reducing the size of those networks to persons considered to be safe and trustworthy.

In 1997, Link and colleagues tested modified labeling theory in a longitudinal study that compared the effects of stigma on the wellbeing of clients who had mental illness and a pattern of substance abuse to determine the strength of the long-term negative effects of stigma and whether the effects of treatment have counterbalancing positive effects (Link et al., 1997). They found that perceived devaluation and discrimination, as well as actual reports of discrimination, continued to have negative effects on clients even though clients were improved and had responded well to treatment. They concluded that healthcare professionals attempting to improve quality of life for clients with mental illness must contend initially with the effects of stigma in its own right to be successful.

Fife and Wright (2000) studied stigma using modified labeling theory as a framework in individuals with HIV/AIDS and cancer. They found that stigma had a significant influence on the lives of persons with HIV/AIDS and with cancer. However, they also found that the nature of the illness had few direct effects on self-perception, whereas the effects on self appeared to relate directly to the perception of stigma. Their findings suggested that stigma has different dimensions, which have different effects on self. Rejection and social isolation lead to diminished self-esteem. Social isolation influences body image. A lack of sense of personal control stems from social isolation and financial insecurity. Social isolation appears to be the only dimension of stigma that affects each component of self.

Camp, Finlay, and Lyons (2002) questioned the inevitability of the effects of stigma on self based on the hypothesis that, in order for stigma to exert a negative influence on self-concept, the individuals must first be aware of and accept the negative self-perceptions, accept that the identity relates to them, and then apply the negative perceptions to themselves. A study of women with long-term mental health problems found that these women did not accept negative social perceptions as relevant to them. Rather, they attributed the negative perceptions to deficiencies among those who stigmatized them. These researchers found no evidence of the passive acceptance of labels and negative identities. These women appeared to avoid social interactions where they anticipated feeling different and excluded, and formed new social networks with groups in which they felt accepted and understood. Whereas they acknowledged the negative consequences of mental illness, there did not appear to be an automatic link between these consequences and negative self-evaluation. Factors that contributed to a positive self-evaluation included membership in a supportive in-group, finding themselves in a more favorable circumstance than others with the same problems, and sharing experiences with others who had knowledge and insight about mental illness.

In summary, stigma, defined as discrediting another, arises from widely held social
beliefs about personality, behavior, and illness, and is communicated to individuals through a process of socialization. When individuals display the condition that engenders the mark of discredit, they may experience social devaluation and discrimination. Stigma clearly attaches to individuals with mental illness as well as individuals with infectious and terminal diseases. Stigma may produce changes in perception of body image, social isolation, rejection, loss of status, and perceived lack of personal control. However, there is some evidence to suggest that stigma does not attach universally to individuals with marked behavior or conditions. Some individuals appear resistant to stigma, identifying flaws in the society conveying the negative beliefs. These individuals share experiences with others who have knowledge of and sensitivity to being stigmatized and benefit from the ability to perceive themselves as equal to or better off than others with the same condition.


Unique Aspects of Stigma

There are special circumstances in which stigma can be perceived with enhanced distinction. Individuals who lack a fully developed sense of personal identity and who are reliant upon external sources to reinforce their internal sense of worthiness may be uniquely prone to a sense of stigma. Adolescence can be used as an example. There are aspects of society that tend to be highly valued by individuals, and when that society communicates stigma, the stigmatizing beliefs are uniquely powerful. Religion and culture are examples, as well as issues concerning self-infliction and punishment.

The task of developing a stable, coherent identity is one of the most important tasks of adolescence (Erikson, 1968). To successfully complete this task, the adolescent must be able to utilize formal operational thinking within a context of expanded social experiences to evolve a sense of self that integrates not only the similarities, but also the differences observed between the self and others. Social interactions and messages from the sociocultural environment about what is desirable and what is not desirable guide and direct the adolescent toward an identity that incorporates desired similarities and rejects undesired differences. The influences and preferences of peers become important as the adolescent seeks acceptance of this newly developed sense of identity. The skill of labeling and stigmatizing individuals with intolerable differences is wielded with frightening force and sometimes terrible consequences—the 1999 Columbine High School tragedy is one example.

Intolerance often results in bullying and peer aggressiveness in the adolescent. Wang, Iannotti, Luk, and Nansel (2010) examined subtypes of bullying in a national sample of 7,475 adolescents in the United States. Bullying of all types (verbal, physical, relational, cyber, and cell phone) that occurred among students in grades 6 to 10 was related to depression, physical injuries, and increased medication use to manage nervousness and insomnia. Bullying, including cyberbullying, has also been linked to suicidal thoughts and behaviors in the adolescent (Brunstein Klomek, Sourander, & Gould, 2010; Hinduja & Patchin, 2010).

Normal adolescent maturation may include dealing with sudden growth spurts, changes in body image, and even acne associated with fluctuating hormone levels. Australian researchers (Magin, Adams, Heading, Pond, & Smith, 2006) explored the experience of adolescents living with very visible skin disorders (e.g., severe acne, psoriasis). These youth (aged 11-18 years)
were stigmatized and frequently were the targets of teasing and bullying behaviors by peers.

Culture may determine stigma as well. For some conditions, such as traumatic brain injury (Simpson, Mohr, & Redman, 2000), HIV/AIDS (Heckman et al., 2004), and epilepsy (Baker, Brooks, Buck, & Jacoby, 2000), stigma and social isolation cross cultural boundaries. On the other hand, in a study of attitudes about homelessness in 11 European cities, Brandon, Khoo, Maglajlie, and Abuel-Ealeh (2000) found marked differences in attitudes between countries, with high levels of stigma predominating in former Warsaw Pact countries. A determination of racial and/or cultural inferiority of a minority group by a dominant group may result in racism, discrimination, and stigma (Weston, 2003).

Religion may also play a role in stigma. In a study of five large religious groups in London that examined attitudes about depression and schizophrenia, it was found that fear of stigma among nonwhite groups was prevalent, and particularly the fear of being misunderstood by white healthcare professionals not of the same religious group (Cinnirella & Loewenthal, 1999).

The label and associated stigma of a disability or disease excludes individuals from social interaction or alters social relationships whereas their intellectual or physical handicaps alone may not (Link et al., 1997). Vulnerable populations are in jeopardy of forming unhealthy relationships. Results from a South African study (Rohleder, 2010) indicated that the stigma of disability increased participation in risky behaviors. Individuals with a physical or mental disability were more likely to engage in unsafe sexual practices, thereby increasing their risk of contracting HIV/AIDS. The desire to form an attachment and establish a physical relationship with another human being outweighed the need to protect oneself. The concepts of self-worth and self-esteem are interwoven with stigma.

Most stigmas are perceived as threatening by and to others. Criminals and social deviants are stigmatized because they create a sense of anxiety by threatening society’s values and safety. Similarly, encounters with sick and disabled individuals also cause anxiety and apprehension, but in a different way. The encounter destroys the dream that life is fair. Sick people remind us of our mortality and vulnerability; consequently, physically healthy individuals may make negative value judgments about those who are ill or disabled (Kurzban & Leary, 2001). For example, some sighted individuals may regard those who are blind as being dependent or unwilling to take care of themselves, an assumption that is not based on what the blind person is willing or able to do. Individuals with AIDS are often subjected to moral judgment. Those with psychiatric illness have been stigmatized since medieval times (Keltner, Schwecke, & Bostrom, 2003). As a result, these individuals deal with more than their symptomatology; on a daily basis they contend with those who perceive them as less worthy or valuable, because they possess a stigma.

Some individuals are stigmatized because the behavior or difference is considered to be self-inflicted and, therefore, less worthy of help. Alcoholism, drug-related problems, and mental illness are frequently included in this category (Crisp et al., 2000; Ritson, 1999). In fact, alcoholism as a disease is highly stigmatized as compared to other mental illnesses (Schomerus et al., 2010). HIV/AIDS and hepatitis B are examples of infectious diseases in which the mode of infection is considered to be self-inflicted as a result of socially unacceptable behavior; therefore, affected
individuals are stigmatized (Halevy, 2000; Heckman et al., 2004).

In the past, the words “shame” and “guilt” were used to describe a concept similar to stigma—a perceived difference between a behavior or an attribute and an ideal standard. From this perspective, guilt is defined as selfcriticism, and shame results from the disapproval of others. Guilt is similar to seeing oneself as discreditable. Shame is a painful feeling caused by the scorn or contempt of others. For example, a person with alcoholism may feel guilty about drinking and also feel ashamed that others perceive his or her behavior as less than desirable.

Whenever a stigma is present, the devaluing characteristic is so powerful that it overshadows other traits and becomes the focus of one’s personal evaluation (Kurzban & Leary, 2001). This trait, or differentness, is sufficiently powerful to break the claim of all other attributes (Goffman, 1963). As an example, the fact that a nurse has unstable type I diabetes may cancel her/his remaining identity as a competent health professional. The stigma attached to a professor’s stutter may overshadow academic competence.

The extent of stigma resulting from any particular condition cannot be predicted. Individuals with a specific disease do not universally feel the same degree of stigma. On the other hand, very different disabilities may possess the same stigma. In writing about individuals with mental illness, Link and colleagues (1997) described variations in symptomology among them; however, individuals without mental illness did not take those variations into account. All individuals who were disabled were seen as sharing the same stigma—mental illness—regardless of their capabilities or severity of their illness. That is, people responded to the mental illness stereotype rather than to the person’s actual physical and mental capabilities.

Similarly, Herek, Capitanio, and Widaman (2003) reported on the stigmatizing effects of the label of HIV/AIDS. They found that those individuals who reported a perceived reduction in the level of stigma attached to HIV/AIDS overall still generally expressed negative feelings toward people with AIDS and favored a name-based reporting system such as that used by the public health department for other communicable diseases.


Types of Stigma

Stigma is a universal phenomenon and every society stigmatizes. Goffman (1963) distinguished among three types of stigma. The first is the stigma of physical deformity. The actual stigma is the deficit between the expected norm of perfect physical condition and the actual physical condition. For example, many chronic conditions create changes in physical appearance or function. These changes frequently create a difference in self- or other-perception (see Chapter 6).

Stigma can arise from a normal physiological process—aging. The normal aging process creates a body far different from the television commercial “norm” of youth, physical beauty, and leanness. Younger people tend to differentiate themselves from older people based on the differences in appearances, physique, and mentality. Butler (1975) first termed “the process of systemically stereotyping and discriminating against people because they are old” as ageism (p. 894). Detrimental consequences may follow after labeling a person as elderly, senior citizen, or aged. For example, a person who is hard of hearing may refuse to use a hearing aid to avoid
being labeled as “getting old”. In fact, hearing loss was considered a perceived stigma in aging and the use of hearing aids was associated with being disabled in one longitudinal qualitative study (Wallhagen, 2010). In another study, adults (n = 103) 60 to 70 years old were found to be more sensitive to stereotyping threats affecting memory performance (Hess, Hinson, & Hodges, 2009). In other words, if the older adult is conscious of how his or her behavior may reflect negatively on the older adult population, he or she may have increased anxiety and reduced memory capacity. Although physical decline, loneliness, and depression in the older adult have been well documented in the literature, interventions must be implemented to enhance “positive aging” (Stephens & Flick, 2010). Health promotion and positive aging attitudes can only be accomplished when the stigma of ageism is abolished.

The second type of stigma is that of character blemishes. This type may occur in individuals with HIV/AIDS, alcoholism, mental illness, or sexually transmitted diseases. For example, individuals infected with HIV face considerable stigma because many believe that the infected person could have controlled the behaviors that resulted in the infection (Halevy, 2000; Heckman et al., 2004; Herek et al., 2003; Weston, 2003). Likewise, individuals with eating disorders such as anorexia nervosa fear being stigmatized (Stewart, Keel, & Schiavo, 2006). The fear of stigma can be a major barrier to seeking treatment.

The third type of stigma is tribal in origin and is known more commonly as prejudice. This type of stigma originates when one group perceives features of race, religion, or nationality of another group as deficient compared with their own socially constructed norm. Most healthcare professionals agree that prejudice has no place in the healthcare delivery system. Although some professionals display both subtle and overt intolerance, others strive to treat persons of every age, race, and nationality with sensitivity. However, prejudice against individuals with chronic illnesses exists as surely as racial or religious prejudice.

The three types of stigma may overlap and reinforce each other (Kurzban & Leary, 2001). Individuals who are already socially isolated because of race, age, or poverty will be additionally hurt by the isolation resulting from another stigma. Heukelbach and Feldmeier (2006) stated that scabies infestations are associated with poverty in undeveloped countries, which contributes to the stigmatization of both diagnosis and treatment. Those who are financially disadvantaged or culturally distinct (that is, stigmatized by the majority of society) will suffer more stigma should they become disabled. Poor women with HIV feared the stigma associated with HIV/AIDS more than dying of the disease (Abel, 2007).

Psychologists and sociologists have built on Goffman’s theory to address the concepts of felt stigma and enacted stigma (Jacoby, 1994; Scambler, 2004). Felt stigma is the internalized perception of being devalued or “not as good as” by an individual. It may be related to fears of being treated differently or of being labeled by others, even though the stigmatizing attribute is not known or outwardly apparent. The other component of felt stigma is shame (Scambler, 2004). Individuals view themselves as discreditable. The quote at the beginning of this chapter is an example of a client experiencing felt stigma.

Enacted stigma, on the other hand, refers to behaviors and perceptions by others toward the individual who is perceived as different. Enacted
stigma is the situational response of others to a visible, overt stigmatizing attribute of another (Jacoby, 1994; Scambler, 2004). Hesitating or failing to shake hands with a person who has vitiligo, a dermatologic condition characterized by hypopigmentation of the skin, is an example of enacted stigma.

Felt and enacted stigma may overlap. “Smoke-free” regulations are now in effect across the United States and abroad. Whereas these laws have been enacted to protect the public from the carcinogens and toxins present in secondhand smoke, the smoking behavior may be viewed as an unfavorable attribute. By association, the individual who smokes may be seen as “less than” or as less favorable. Thus, the individuals who smoke may experience both felt stigma and enacted stigma. Indeed, some smokers and recent exsmokers in Scotland described themselves as “lepers” (Ritchie, Amos, & Martin, 2010). The temporary segregation occurring as a result of “smoking sections” led them to stigmatize themselves as well as their behaviors and that of other smokers.

Stigma is prevalent in our society and, once it occurs it endures (Link et al., 1997). If the cause of stigma is removed, the effects are not easily overcome. An individual’s social identity has already been influenced by the stigmatizing attribute. A person with a history of alcoholism or mental illness continues to carry a stigma in the same way that a former prison inmate does.


Chronic Disease as Stigma

Individuals with chronic illness present deviations from what many people expect in daily social interchanges. In general, most people do not expect to meet someone with an electronic voice-box following treatment for laryngeal cancer. Both the cancer and the assistive device may not be readily visible, but once the person begins to speak, the individual is at risk of being labeled as “different” by others.

American values contribute to the perception of chronic illness as a stigmatizing condition. That is, the dominant culture emphasizes qualities of youth, attractiveness, and personal accomplishment. The work ethic and heritage of the Western frontier provide heroes who are strong, conventionally productive, and physically healthy. Television and magazines demonstrate, on a daily basis, that physical perfection is the standard against which all are measured, yet these societal values collide with the reality of chronic disease. A discrepancy exists between the realities of a chronic condition, such as arthritis or HIV/AIDS, and the social expectation of physical perfection.

A disease characteristic or one having an unknown etiology may contribute to the stigma of many chronic illnesses. In fact, any disease having an unclear cause or ineffectual treatment is suspect, including Alzheimer’s disease (Jolley & Benbow, 2000) and anxiety disorders (Davies, 2000). Clients with Alzheimer’s disease also may be stigmatized because of perceptions relating to their level of decision-making competence (Werner, 2006). Diseases that are somewhat mysterious and at the same time feared, such as leprosy, are often felt to be morally contagious.

Stigma can be associated with inequitable treatment, although the relative severity of such inequitable treatment often varies with the degree of severity of the stigmatized condition. For example, public policy about HIV/AIDS has acted both to increase accessibility to treatment and potentially to limit the civil rights of the stigmatized individuals (Herek et al., 2003). In addition, the shame, guilt, and social isolation of some stigmatized individuals may lead to
inequitable treatment for their families. Because of the secrecy associated with being HIVpositive, affected clients and family members may not be able to access needed mental health, substance abuse rehabilitation, or infectious disease therapies (Salisbury, 2000).

The stigma associated with HIV/AIDS or the associated high-risk behaviors may impact public health screening efforts (Glasman, Weinhardt, DiFranceisco & Hackl, 2010). Men of Mexican descent were less likely to participate in free HIVscreening events. Findings suggested that participation in HIV testing could stigmatize these men due to the association of HIV infection with highrisk behaviors (men having sex with men, illicit drug use). By avoiding testing, these men were avoiding the possibility of enacted stigma. A study of Irish women of childbearing age found the same reasoning behind avoiding screening for chlamydia (Balfe et al., 2010). Undergoing screening for the disease was associated with risky behaviors and promiscuity, which would result in felt stigma and possibly enacted stigma.

This chapter has defined stigma and presented a framework for understanding stigma as a social construct. All types of stigma share a common tie: In every case, an individual who might have interacted easily in a particular social situation may now be prevented from doing so by the discredited trait. The trait may become the focus of attention and potentially turn others away.

Jun 29, 2016 | Posted by in NURSING | Comments Off on Stigma

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