Bruce G. Link
Columbia University and
New York State Psychiatric Institute
Jo C. Phelan
The publication of Erving Goffman's seminal Stigma: Notes on the Management of Spoiled Identity in 1963 generated a profusion of research on the nature, sources and consequences of stigma. Numerous elaborations of Goffman’s ideas, conceptual refinements, and repeated demonstrations of the consequences of stigma for stigmatized individuals have been put forward. The stigma concept has been applied to a very broad array of circumstances ranging from urinary incontinence (Sheldon and Caldwell 1994) to exotic dancing (Lewis 1998), being in debt (Davis 1998) and being a mother who is lesbian (Causey and Duran-Aydintug 1997). Amidst this profusion of research, we return to the idea of stigma to reconsider its conceptualization, to explore how and why it has pervasive and persistent effects on people’s lives and to ask how and why it is connected to the health of the public. After considering these issues, we turn to ideas about what we need to know and what we need to do to address stigma and its consequences.
There is a great deal of variability in approaches to defining stigma (Stafford and Scott 1986). Many investigators provide no explicit definition and seem to refer to something like the dictionary definition ("a mark of disgrace") or to some related factor like stereotyping or rejection (e.g. a social distance scale). When stigma is explicitly defined, it is often in terms of Goffman's description of stigma as an "attribute that is deeply discrediting" and that reduces the bearer "from a whole and usual person to a tainted, discounted one" (Goffman 1963, p. 3).
Other investigators have elaborated Goffman’s definition or offered alternatives, and these have varied considerably. For example, Stafford and Scott (Stafford and Scott 1986, p. 80) define stigma as "a characteristic of persons that is contrary to a norm of a social unit" where a "norm" is defined as a "shared belief that a person ought to behave in a certain way at a certain time" (p. 81). Crocker et al. (1998, p. 505) suggest that "stigmatized individuals possess (or are believed to possess) some attribute, or characteristic, that conveys a social identity that is devalued in a particular social context." An especially influential definition is that of Jones et al. (1984) who use Goffman's (1963, p.4) observation that stigma can be seen as a relationship between an "attribute and a stereotype" to produce a definition of stigma as a "mark" (attribute) that links a person to undesirable characteristics (stereotypes).
Despite their variability, most definitions of stigma share features that have been criticized for the narrow and biased vision they allow. Two critical challenges can be identified. First, many social scientists who study stigma do not themselves belong to stigmatized groups, and their theories are consequently uninformed by the lived experience of the people they study (Kleinman et al. 1995; Schneider 1988). For example, with regard to the experience of disability, Schneider (1988) asserts that "most able-bodied experts" give priority "to their scientific theories and research techniques rather than to the words and perceptions of the people they study." The result is a misunderstanding of the experience of people who are stigmatized and the perpetuation of unsubstantiated assumptions. Writing about disability, Fine and Asch (1988) identify five assumptions: 1) that disability is located solely in biology, 2) that the problems of the disabled are due to disability-produced impairment, 3) that the disabled person is a "victim," 4) that disability is central to the disabled person’s self-concept, self-definition, social comparisons and reference groups, and 5) that having a disability is synonymous with needing help and social support.
The second main element of the critique is that stigma has been studied from a decidedly individualistic perspective. For example, Oliver (1992) notes that stigma research has focused largely on the perceptions of individuals and the consequences of those perceptions for micro-level interactions. According to Oliver (1992), it is rare for stigma research to examine the sources and consequences of pervasive, socially shaped exclusion from social and economic life. In another vein, Fine and Asch (1988) point out that, although Goffman (1963, p.3) advised that we needed "a language of relationships, not attributes," subsequent practice has often transformed stigmas or marks into attributes of persons. The stigma or mark is something in the person rather than a designation or label that others affix to the person. Consider how the term "stigma" directs our attention differently than a term like "discrimination." Whereas "discrimination" focuses attention on the producers of rejection and exclusion -- those who do the discriminating, "stigma" directs attention to the people who are the recipients of these behaviors (Sayce 1998). Thus the terms we use may lead to "different understandings of where responsibility lies for the 'problem'” and consequently to "different prescriptions for action" (Sayce 1998).
We propose a conceptualization of stigma that locates its meaning in the relation between several concepts. The relational nature of this conceptualization expands on Goffman's observation that stigma can be seen as the relationship between an "attribute and a stereotype," provides a framework that integrates many of the diverse definitions of stigma that have been previously offered, and responds to some of the valuable criticisms and challenges to the study of stigma that we have just described. We first state our conceptualization briefly and then elaborate its components.
In our conceptualization, stigma exists when the following interrelated components converge. In the first component, people identify and label human differences. In the second, dominant cultural beliefs link labeled individuals to undesirable characteristics -- to negative stereotypes. In the third, labeled persons are placed in distinct categories, separating "us" from "them." In the fourth, labeled persons experience status loss and discrimination that lead to unequal outcomes. Finally, stigmatization is wholly contingent on access to social, economic and political power that allows the identification of differentness, the construction of stereotypes, the separation of labeled persons into distinct categories and the full execution of disapproval, rejection, exclusion and discrimination. Thus we apply the term stigma when elements of labeling, stereotyping, separation, status loss and discrimination co-occur in a power situation that allows them to unfold. We now turn to a more detailed examination of each of these components of stigma.
Component #1 B Distinguishing and Labeling Differences
The vast majority of human differences are ignored and therefore socially irrelevant. Some, such as the size of one’s feet, the color of one’s car or the month of one’s birth, are routinely overlooked. Others, such as eye color or right vs. left handedness are relevant in relatively few situations and are therefore typically inconsequential in the large scheme of things. But other differences, such as one's skin color, IQ, sexual preferences or gender are highly salient in the United States at this time. The point is that there is a social selection of which human differences are considered relevant and consequential and which are not.
The importance and even the existence of this process is often overlooked, because once differences have been identified and labeled, they are typically taken for granted as being just the way things are B there are black people and white people, deaf people and hearing people, people who are handicapped and people who are not. In order to highlight just how social this social selection of human differences is, however, consider the substantial simplification that is required to create such groups. One example is the rarely questioned assignment of individuals to categories of "black" or "white" when there is no clear demarcation between these categories and enormous variability within categories on any criteria one can think of, even attributes like skin color, parentage, or facial characteristics that are considered the defining characteristics of the categories (Fullilove 1998). The same is true for other categorizations like gay or straight, blind or sighted, handicapped or not.
When we turn attention to medical conditions, we note that they vary dramatically in the extent to which they or their attributes are selected for social salience. Hypertension, bone fractures, and melanoma are not nearly as socially relevant as are incontinence, AIDS and schizophrenia. Again the importance and social relevance of the latter characteristics are frequently taken for granted, and we would consequently find it very easy to enumerate the reasons that people consider these to be important human categories. Still, the selection for social salience is a social accomplishment that must be an important part of any thorough study of the stigma associated with different diseases.
Component #2 B Linking Human Differences with Negative Attributes
The second component of stigma occurs when human differences become associated with undesirable attributes. This aspect of stigma, highlighted by Goffman (1963), has been a central part of the conceptualization of stigma. In our terms, this aspect of stigma involves a label and a stereotype -- the label links a person to a set of undesirable characteristics that form the stereotype. This component is exemplified in a vignette experiment conducted by Link et al. (1987). The investigators experimentally manipulated labeling, tagging a random half of the vignettes “former mental patients” and the other half “former back-pain patients. They also measured the extent to which respondents believed that mental patients in general were “dangerous.” When the vignette described a former back-pain patient, beliefs about the dangerousness of people with mental illness played no part in social distancing responses. However, when the vignette described a former mental patient, these beliefs were potent predictors of rejecting responses: respondents who believed mental patients were dangerous reacted negatively to the person described in the vignette as a former mental patient. For many people, apparently, the "mental patient" label linked the described person to stereotyped beliefs about the dangerousness of people with mental illness, which in turn led them to indicate a desire for social distance from the person.
Component #3 B Separating "Us" from "Them"
The third component of stigma occurs when social labels connote a separation of “us” from “them” (Morone 1997; Devine, Plant, and Harrison 1999). United States history and politics offer many examples of established old order Americans defining Native American people, African American slaves, and successive waves of immigrants as the "them" who were very different from "us." Few groups were wholly spared. For example, Morone (1997) quotes Benjamin Franklin’s observations on Dutch immigrants ("them") and English colonists ("us"). "Already the English begin to quit particular neighborhoods, surrounded by the Dutch, being made uneasy by the disagreeableness of dissonant manners... Besides, the Dutch under-live, and are thereby enabled to under-work and under-sell the English who are thereby extremely incommoded and consequently disgusted” (Franklin 1752). The separation of "us" and "them" is closely linked to other components of the stigma process. For example, the association of labels with undesirable attributes (Component #2) provides the rationale for viewing the negatively labeled persons as fundamentally different from those who don’t share the label B different kinds of people. In the extreme, the stigmatized group is thought to be so different from "us" as to be not really human, and all manner of horrific treatment of "them" becomes possible. The separation of "us" from "them" is sometimes apparent in the very nature of the labels conferred. Incumbents are thought to "be" the thing they are labeled (Estroff 1989). For example, we would say that a person has cancer, heart disease or the flu, but people often say that a person is a schizophrenic or an epileptic. Someone who suffers from heart disease is one of “us,” a person who just happens to be beset by a serious illness, whereas a schizophrenic is a different kind of person - one of “them.”
Component #4 -- Status Loss and Discrimination
In this component of the stigma process, the labeled person experiences status loss and discrimination. Most definitions of stigma do not include this component, but as we shall see, the term stigma cannot hold the meaning we commonly assign to it when this aspect is left out. In our reasoning, when people are labeled, set apart and linked to undesirable characteristics, a rationale is constructed for devaluing, rejecting, and excluding them. Thus people are stigmatized when the fact that they are labeled, set apart and linked to undesirable characteristics leads them to experience status loss and discrimination.
Component #5 B The Dependence of Stigma on Power
It takes power to stigmatize. The role of power is often overlooked, because social, economic and political power differences may be so taken for granted as to seem unproblematic. When we think of mental illness, obesity, deafness, and having one leg instead of two, we tend to focus on the attributes associated with these conditions rather than on power differences between people with and without the conditions. But power, even in these circumstances, is essential to the social production of stigma.
The essential role of power can be illustrated by considering the ability of low-power groups to stigmatize others. Although members of low-power groups may engage in components of the stigma process, such as labeling and stereotyping, lack of power limits their ability to fully stigmatize members of a higher-power group. For example, patients in a treatment program for serious mental illness are likely to identify and label human differences in psychiatric staff. They may label certain clinicians as "pill pushers" and link the label "pill pusher" to negative characteristics such as being "cold," "paternalistic," and "arrogant." They may categorize "them" -- the pill pushers -- as distinct from "us." Finally, they might treat "pill pushers" differently in accordance with these negative views by avoiding them, undermining their treatment plans, exchanging derogatory comments and jokes about them, and so on. Thus the patients might engage in every component of stigma we have identified. Nevertheless, we would not consider the psychiatrists targeted for this treatment to be a stigmatized group. The patients lack the social, cultural, economic and political power needed to translate their negative cognitions and behaviors into any significant consequences for the staff.
Similar scenarios could be described for all sorts of circumstances in which relatively powerless groups create labels and stereotypes about more powerful groups and treat members of the more powerful group in accordance with those stereotypes but without serious consequences for the powerful group. Without reference to power, stigma would become a very different and much broader concept that might be applied to lawyers, politicians, Wall Street traders and white people. Stigma depends on power.
To understand whether stigma is occurring, then, it is critical to ask the following set of questions: Do the potential stigmatizers have the power to insure that the human difference they recognize and label is broadly identified in the culture? Do they have the power to insure that the culture recognizes and deeply accepts the stereotypes they connect to the labeled differences? Do they have the power to separate “us” from “them” and to have the designation stick? And do they control access to major life-domains like educational institutions, jobs, housing and health care so as to attach real consequences to the distinctions they draw? To the extent that the answers to these questions are yes, we can expect stigma to result. To the extent that the answers are no, although many cognitive and behavioral components of stigma might be in place, what we generally mean by stigma would not exist.
Mechanisms Producing Stigma-related Discrimination
This standard way of conceptualizing the connection between labeling/stereotyping and discrimination points to direct discriminatory behavior on the part of the person who holds the stereotyped beliefs. In this approach, the importance of attitudes and beliefs are thought to lie in whether person A’s labeling and stereotyping of person B leads person A to engage in some obvious forms of overt discrimination directed at person B, such as rejecting a job application, refusing to rent an apartment and so on. There are several studies that when taken together offer compelling evidence that this form of discrimination occurs with some regularity in the lives of people who are stigmatized. In an experiment, Page (1977) demonstrated clear-cut discrimination in landlords’ reports of apartment availability by varying whether a prospective tenant indicated that he/she was calling as a patient from a psychiatric hospital or from another setting. There is also evidence from non-experimental studies of real-world circumstances in which people with mental illnesses receive less than adequate treatment following a myocardial infarction. Druss and colleagues (2000) demonstrate that, like women and ethnic minorities, people with schizophrenia are less likely to receive state-of-the-art procedures such as angioplasty or coronary artery bypass graft following myocardial infarction than are people who have similar physical conditions but do not have schizophrenia. Finally, Wahl (1999) asked a large sample of consumers of mental health services about experiences of rejection and found that sizeable minorities reported being denied educational opportunities, jobs, apartments and health insurance. Thus reports from investigator constructed experiments, from quasi-experiments conducted in real world settings and from surveys of consumers converge to indicate that direct discrimination occurs with unacceptable regularity in the lives of people with mental illnesses. But direct discrimination is not the only way in which discrimination can occur.
This form of discrimination sensitizes us to the fact that many disadvantages can result outside of a model in which one person consciously does something bad to another (direct discrimination). In the United States, structural discrimination is clearly evident with regard to differences in life chances between African Americans and whites (Hamilton and Carmichael 1967). For example, employers (more often white) rely on the personal recommendations of colleagues or acquaintances (more often white and more likely to know and recommend white job candidates) for hiring decisions. In instances like these, there is no direct denial of a job to an individual African American because of his or her race, and the employer offering a job in such an instance need not hold racist beliefs. Yet, discrimination has clearly occurred. Does this kind of discrimination affect other stigmatized groups as well? Consider some possible examples of structural discrimination against people with schizophrenia.
Suppose that, because it is a stigmatized illness, less funding is dedicated to research on schizophrenia than for other illnesses, and less money is allocated for its care and management. As a consequence, people with schizophrenia are less able to benefit from scientific discoveries than they would be if they happened to develop a different illness. Further, the resources available to deliver state-of-the-art treatments are not as well developed as they are for less stigmatized illnesses. Consider further that, as a result of historical processes influenced by stigma, treatment facilities tend to be located either in isolated settings away from other people (Rothman 1971) or in some of the most disadvantaged urban neighborhoods in communities that do not have enough clout to exclude this stigmatized group from their midst (Dear and Lewis 1986). These disadvantaged communities tend to have higher rates of crime, more pollution, higher rates of infectious disease, and inadequate medical care. To the extent that the stigma of schizophrenia has created such a situation, a person who develops this disorder will be the recipient of structural discrimination whether or not anyone happens to treat him or her in a discriminatory way because of some stereotype about schizophrenia. He or she will receive less of the good things and more of the bad things as a simple consequence of having developed a stigmatized illness B stigma has affected the structure around the person, in turn exposing the person to a host of untoward circumstances.
Social Psychological Processes Operating through the Stigmatized Person
Once a cultural stereotype is in place, it can affect labeled persons in other important ways that, like structural discrimination, do not involve obvious forms of discriminatory behavior. For example, according to a modified labeling theory about the effects of stigma on people with mental illnesses (Link 1982; Link, Cullen, Struening, Shrout, and Dohrenwend 1989), people develop conceptions of mental illness early in life as part of their socialization into our culture (Angermeyer and Matschinger 1996; Scheff 1966; Wahl 1995). Once in place, these conceptions become a “lay theory” about what it means to have a mental illness (Angermeyer and Matschinger 1994; Furnham and Bower 1992). People form expectations as to whether most people will reject an individual with mental illness as a friend, employee, neighbor, or intimate partner and whether most people will devalue a person with mental illness as being less trustworthy, intelligent, and competent. For a person who develops a serious mental illness, these beliefs take on a special poignancy, because the possibility of devaluation and discrimination becomes personally relevant. If one believes that others will reject and devalue people with mental illnesses, one must now fear that this rejection applies personally. To the extent that it becomes part of a person’s world view, that perception can have serious negative consequences. Expecting and fearing rejection, people who have been hospitalized for mental illnesses may act less confidently and more defensively with others, or they may simply avoid a threatening contact altogether. The result may be strained and uncomfortable social interactions with potential stigmatizers (Farina, Allen, and Saul 1968), more constricted social networks (Link et al. 1989), a compromised quality of life (Rosenfield 1997), low self-esteem (Wright, Gronfein, and Owens 2000), depressive symptoms (Link, Struening, Rahav, Phelan, and Nuttbrock 1997), unemployment and loss of income (Link 1982; Link 1987).
Again note that, in the modified labeling theory, no one in the immediate context of the person needs to have engaged in obvious forms of discrimination. Rather, the discrimination rests in the formation and sustenance of stereotypes and “lay theories,” processes that lie anterior to the immediate situation. Still, as with structural discrimination, the consequences are sometimes severe and undoubtedly contribute greatly to differences in the life chances of people with mental illnesses.
Stigma as a Persistent Predicament
Our conceptualization draws attention to one way in which stigma is a persistent predicament B why its negative consequences are so difficult to eradicate. When powerful groups negatively label and stereotype a less powerful group, the range of available mechanisms for achieving discriminatory outcomes is both flexible and extensive (Lieberson 1985). We mentioned three generic types of mechanisms B direct discrimination, structural discrimination and discrimination that works through the stigmatized person’s beliefs and behaviors. But these broad designations comprise a whole multitude of specific mechanisms B there are many ways to directly discriminate, many ways to achieve structural discrimination, and many ways in which stigmatized persons can be discouraged from believing they should enjoy full and equal participation in social and economic life. Moreover, if current mechanisms are blocked or become difficult or awkward to use, new ones can be created. If stigmatized persons cannot be convinced to voluntarily accept their lower status and inferior rewards, direct discrimination can be used to accomplish the same outcome. If direct discrimination becomes ideologically difficult, forms of structural discrimination B like locating people with schizophrenia in disadvantaged areas of the city B can achieve some of the same ends. Stigma thereby becomes a persistent predicament in the following sense B as long as stigmatizers sustain their negative view of the people they would stigmatize, decreasing the use of one mechanism through which disadvantage can be accomplished simultaneously creates the impetus to increase the use of another.
The Importance of Stigma Processes in Understanding the Distribution of Life Chances.
Stigma processes have a dramatic and probably under-recognized influence on the distribution of life chances, whether those life chances refer to careers, earnings, social ties, housing, criminal involvement, health or life itself. Most research examines the stigma associated with one circumstance at a time (e.g. AIDS, obesity, mental illness, race, gender, homosexuality etc.), and most assesses only one outcome at a time (e.g. earnings, self esteem, housing, social interactions etc.) Proceeding in this way, researchers often find some effect of stigma on a particular outcome for a particular stigmatized group. However, for a given outcome, it is usually true that many factors other than stigma also influence the outcome, so that stigma is left as just one factor among many. This can lead to the conclusion that, although stigma matters, it has relatively modest effects compared to other factors. Such a conclusion is misguided for two reasons. First, one must keep in mind that the stigma associated with any particular characteristic, such as AIDS, simultaneously affects many life chances, not just one. Thus a full accounting must consider the overall effect on a multitude of outcomes. Second, there are a host of stigmatizing circumstances that need to be considered to understand the full impact of stigma on any particular life outcome, such as self esteem. A full assessment of the impact of stigma on such an outcome must recognize that many stigmatizing circumstances contribute to that outcome and not just the one selected for the particular study in question. For these reasons, stigma processes likely play an even greater role in life chances than current research suggests.
As a preliminary exploration of these ideas, we examined data from a sample of 487 people, representative of the 48 contiguous United States (see Link et al. 1995 and Phelan et al. 1999 for a detailed description of the sample). These data are instructive because they assess a diverse set of potentially stigmatizing circumstances and two possible consequences of these stigmatizing circumstances B low self-esteem and poor health. The stigmatizing circumstances assessed include having experienced 1) hospitalization for mental illness, 2) multiple marriages (3+), 3) eviction, 4) extreme poverty as indicated by not having enough food to eat, 5) being a foster child, 6) being held back in school, 7) being an orphan, 8) being currently unemployed and 9) being currently on welfare. Self-esteem was assessed using a five-item scale derived from Rosenberg’s 10-item scale. We assessed poor health using 1) self-reported health (poor or fair = 1; good, very good, excellent = 0) and 2) a self-report of ever having been unable to work for a month or more because of physical health problems.
We used multiple regression to examine the association between the potentially stigmatizing circumstances and self-esteem. If we were to have focused only on one stigmatizing circumstance at a time we would have concluded that the selected circumstance had a small to moderate association with self-esteem. For example, mental hospitalization (4%), having been an orphan (1%), multiple marriages (.7%), and being unemployed (2.1%) explain only moderate to small proportions of variance in self-esteem. But when all of these circumstances are considered together they explain a full 20.2% of the variance above and beyond the effects of age, years of education and gender. In fact the variance explained by the stigmatizing circumstances turns out to be 9 times greater than the combined effect of age, gender and educational attainment.
When we turn to physical health we note that the stigmatizing circumstances are, taken together, too rare to account for the relatively large proportion of people experiencing poor health (15.8% fair or poor self-reported health and 36.1% out of work for a month or more due to physical illness). The stigmatizing circumstances range in prevalence from 1% to about 10% (the only exception is being held back at 16.8%). As such, none could be expected to individually explain a large proportion of cases of poor health (that is, the attributable risk of any one of the characteristics cannot be high). But 39% of the sample have at least one of the potentially stigmatizing circumstances. Thus exposure to some form of stigma is quite common and could therefore account for far more cases than one might have thought in an analysis that considered only one form of stigma at a time. Viewed from a slightly different vantage point, only six of a possible 18 associations (9 stigmatizing circumstances x 2 health conditions) are significantly related to poor health. A major reason for this is that power is low for very rare conditions. Proceeding with a focus on only one stigmatizing circumstance at a time might give the impression of a weak, highly variable and inconsistent connection between stigma and health. But shifting focus to a consideration of having any one of the stigmatizing circumstances yields a very different conclusion. A person who is exposed to any one of the stigmatized circumstances is substantially and significantly more likely to have poor physical health and to have been unable to work for a month or more than a person who has none of them (24% versus 11% and 48% versus 28% respectively). Logistic regressions show that this association remains strong with controls for age, gender and education and that the effect of stigma compares to the frequently cited effect of education in terms of the magnitude of its association with the indicators of poor health.
Of course not all of the substantial effect of these circumstances can be attributed to stigma processes per se. To a greater or lesser extent various ones of the stigmatizing circumstances may involve disability or other associated attributes that influence self-esteem and health through mechanisms that do not involve stigma. Still, starting the parsing process with 20% of the variance when one includes multiple stigmatizing circumstances is very different than starting 1 or 2% when one considers only one of them. Moreover, when we consider that our list of stigmatizing circumstances is really only a small sample of a large population of such circumstances we must recognize that even the 20% of variance is probably a dramatic underestimate of the association between stigmatizing circumstances and self-esteem. Viewed comprehensively stigma probably plays a major role in shaping access to a broad array of life chances including mental and physical health.
Why Stigma Matters for Public Health
Health and “life itself” were included in the list of so called life chances considered above and the examples we provided indicated that stigma may have a strong effect on health. In order to understand why stigma might be related to health it is useful to consider effects on 1) the etiology of diseases and health conditions other than the stigmatized condition and 2) the course and outcome of the stigmatized medical condition itself.
Stigma As a Social Cause Of Disease
Stigma and Stress. One important way in which stigma can contribute to disease is by generating stressful circumstances and compromising a person’s ability to cope with those circumstances. In this scenario, we are thinking of the impact of the stigma of one illness on the likelihood of developing other illnesses. One way to think about stigma-induced stress is in terms of blocked striving. To the extent that discrimination occurs through one of the broad band mechanisms we described above B direct discriminatory behavior by others, structural discrimination, or discrimination that operates through the stigmatized person B the stigmatized person is held back and receives fewer of the good things and more of the bad things our social and economic system has to offer. This kind of blocked striving has been posited as an important source of strain in people’s lives (Merton 1938) that has harmful consequences for mental and physical health (Gibbs and Fuery 1994). Another way to think about stigma-generated stress is to recognize that discrimination produces stressful events B bad circumstances that threaten security. For example, when community-based treatment facilities for people with mental illnesses are located in poor, disorganized and dangerous sections of the city, people with mental illness are placed at higher risk of excessive noise, deteriorated housing and crime victimization. A third way in which stigma induces stress is through the strain of coping with the ever-present possibility of being stereotyped, rejected or discriminated against. For example, social epidemiologist Sherman James puts forward the concept of what he calls “John Henryism” -- the tendency for some African Americans to work extremely hard and with great pressure to disprove the stereotype of laziness and inability. According to James et al. (1984), under some conditions this coping effort bears costs in the form of hypertension. Finally, stigma can erode generic coping resources such as self-esteem and self efficacy. Although stigma does not always impair these coping resources, it frequently does B sometimes dramatically so (Link et al. 2001). To the extent that it does, stigma will compromise coping capacity and influence stress-related outcomes even if the origin of the stressful exposure has nothing to do with stigma or discrimination.
Stigma as a Fundamental Cause of Disease.
Stress is by no means the only way through which stigma may be harmful to one’s health. Link and Phelan (1995, 2000) propose that some social conditions have a persistent connection with disease because they determine exposure to risk and protective factors no matter what the risk and protective factors are in a given place or at a given time. This is one reason why socioeconomic status (SES) has had such a robust association with disease and death across historical periods that differ so dramatically in terms of risk and protective factors, diseases, and health care systems B people with greater resources of knowledge, money, power, prestige and social connections are better able to avoid risks and to adopt protective strategies no matter what these factors happen to be at a given time. SES is a “fundamental cause” in the sense that it generates and regenerates mechanisms that link it to disease. Similarly, through various mechanisms of discrimination, stigma places a person at a significant social disadvantage with respect to knowledge, money, power, prestige, and social connections. To the extent that it does, it influences access to protective factors and exposure to risk factors so as to shape patterns of disease and death. Like SES, stigma will have this effect no matter what the risk and protective factors are in a given place or time. To make this concrete, consider once again the example of the placement of treatment facilities for people with serious mental illnesses in the poorest, most disorganized sections of our cities because of stigma-related Not In My Back Yard (NIMBY) sentiments. These disadvantaged communities tend to have higher rates of crime, more pollution, higher rates of infectious disease, and inadequate medical care. People with mental illnesses will receive less of the things that are good for health and more of the things that are bad for health as a consequence. Repeat this circumstance over the range of circumstances that influence health, and one is led to the prediction that stigmatized persons will experience worse health because of stigma.
Stigma Shapes the Course and Outcome of the Stigmatized Disease
Just as the stigma associated with an illness such as schizophrenia or AIDS may cause or exacerbate other illnesses, stigma may also have a negative impact on the clinical course and other outcomes, such as social and occupational functioning, of the stigmatized illness itself. One way in which this can occur is through the same kind of stigma-related stressful circumstances discussed above. To the extent that stress is involved in relapses or exacerbations of a condition, any stigma processes that generate stress will contribute to exacerbations or relapses of the condition in question.
In addition, however, there are more specific ways in which the stigma associated with a disease leads to negative outcomes for that disease. These have to do with access to and utilization of effective treatments. One very important way in which access to treatment is blocked is when people fear being identified and labeled as having a stigmatizing condition and therefore delay or avoid seeking treatment when they develop such a condition. Similarly, individuals who have already been identified and labeled may seek to distance themselves from the stigmatizing label by avoiding treatment, thereby becoming noncompliant with treatment regimens. When either of these processes operate, people miss the benefits of effective treatments. A second way stigma may influence access to treatment is by creating undesirable conditions in treatment settings that make help-seeking far less desirable than it would otherwise be. For example, there exists a tremendous fear of people with psychosis that is out of proportion to the actual risk that such people pose (Link et al. 1999). To the extent that this fear increases the presence of guards, locked wards, searches, barbed wire and the like, stigma produces very negative circumstances in treatment settings that could understandably make people want to avoid those settings. Similarly, if less money is allocated for the treatment of stigmatized illnesses, the facilities where treatment is provided may not be as pleasant, clean or safe as they should be, thereby creating substantial disincentives for attending or attending regularly. A third way stigma influences access to effective treatment can only be recognized by thinking broadly across diseases and time. Reasoning from this vantage point, we see that a stigmatized illness may have received less attention over the years with fewer research and treatment dollars being allocated to that disease. As a consequence, the effectiveness of treatment for the disease lags behind the effectiveness of treatment for other diseases. Thus, when people develop a stigmatized illness, they receive less effective care than they would have received if the disease they developed were not a stigmatized one.
What Do We Need to Know?
In presenting a review and conceptual analysis of stigma, our goal has been to contribute to a fuller appreciation of the possible impact of stigma on people’s lives. The claims we make about the broad impact of stigma on health and well-being represent a declaration concerning the fundamental importance of stigma processes. Although stigma research is definitely on the rise, and although this conference represents an important indication of an upswing in concern at the national level, if stigma is indeed as important as we claim, then it has been and continues to be a dramatically under-emphasized and under-addressed phenomenon. In light of this, it is critically important for research to examine empirically some of the possibilities we have presented. In some cases, there exists relatively strong evidence to support connections between stigma and negative health consequences, in other instances the connections we have drawn are simply reasonable possibilities in need of empirical investigation. We need more basic research on stigma and its health consequences to fill in these areas of uncertainty.
In addition to basic research, at least two types of evaluation research are needed. The first is the familiar and critically important type of research that evaluates carefully designed intervention programs. In studies like these, investigators devise interventions based upon current knowledge and do rigorous evaluations to determine whether the intervention is, in fact, effective. Much more research of this kind is needed, particularly in the area of the health consequences of stigma. But another type of evaluation research is also needed. Efforts to address stigma are not the exclusive domain of professional psychologists, sociologists or social workers. Many anti-stigma campaigns are in some ways social movements carried out by interest groups, by concerned citizens or by the people who are themselves stigmatized. Whether focused on health conditions or other circumstances, social movements can have enormous impacts. Research is needed so that we can comprehensively assess the impact of the anti-stigma efforts that are currently underway.
Finally, if future research is to capture the full impact of stigma-related processes, the agenda needs to be broad. We run a real risk of underestimating the overall impact of stigma by parceling our efforts up into “the stigma of this and the stigma of that.” While some specialization of this sort is both necessary and desirable, it will be important to keep a broader vision so that the overall impact of stigma on public health is not lost.
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