Bruce G. Link
Columbia University and
New York State Psychiatric Institute
Jo C. Phelan
Columbia University
Erving Goffman’s (1963) book, Stigma: Notes on the Management of Spoiled Identity, is widely regarded as having inspired a profusion of research focused on the nature, sources and consequences of stigma. Research since Goffman’s seminal essay has been incredibly productive, leading to elaborations, conceptual refinements, and repeated demonstrations of the impact of stigma on the lives of the stigmatized. The stigma concept is applied to literally scores of circumstances ranging from urinary incontinence (Sheldon and Caldwell 1994) to exotic dancing (Lewis 1998) to 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 stigma concept to reconsider the conceptualization of stigma, to explore how and why it has pervasive and persistent effects on people’s lives, 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.
One of the curious features of literature concerning stigma is the variability that exists in the definition of the concept (Stafford and Scott 1986). In many circumstances investigators provide no explicit definition and seem to refer to something like the dictionary definition (“a mark of disgrace”) or to some related aspect like stereotyping or rejection (e.g. a social distance scale). When stigma is explicitly defined many commentators turn to Goffman quoting his definition 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).
Since Goffman, alternative or elaborated definitions have varied considerably. For example, Stafford and Scott (Stafford and Scott 1986, p. 80) propose that stigma “is 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) indicate 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).
In addition to variability in its definition the stigma concept and research based on it have been criticized for the narrow and biased vision it has allowed. Two critical challenges can be identified. The first is that many social scientists who do not belong to stigmatized groups and who study stigma, do so from the vantage point of theories that are uninformed by the lived experience of the people they study (Kleinman et al. 1995; Schneider 1988). For example, in writing about 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 the 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 research on stigma has had a decidedly individualistic focus. For example, according to Oliver (1992), the central thrust of stigma research has been on the perceptions of individuals and the consequences of such perceptions for micro-level interactions. According to Oliver (1992), research examining the sources and consequences of pervasive, socially-shaped exclusion from social and economic life are far less common. In another vein, even though Goffman (1963, p.3) initially advised that we really needed “a language of relationships, not attributes,” subsequent practice has often transformed stigmas or marks into attributes of persons (Fine and Asch 1988). The stigma or mark is something in the person rather than a designation or tag that others affix to the person. In this respect the term “stigma” directs our attention differently than a term like “discrimination.” In contrast to “stigma,” “discrimination” focuses the attention of research to the producers of rejection and exclusion — those who do the discriminating rather than to the people who are the recipients of these behaviors (Sayce 1998). Thus the terms we use could lead to “different understandings of where responsibility lies for the ‘problem’ and as a consequence to “different prescriptions for action” (Sayce 1998).
We use these critiques to reassess the conceptualization of stigma and related concepts in a way that is attentive to the challenges they pose for such a conceptualization. In addition, by proposing that stigma is best described with reference to the relationships between a set of interrelated concepts, some of the issues raised by the critiques can be addressed. An important precedent to locating the meaning of stigma in the relation between concepts is available in Goffman’s observation that stigma can be seen as the relationship between an “attribute and a stereotype.” We expand the nexus of relationships somewhat with the intent of capturing a fuller set of meanings for the term by doing so. We state our conceptualization as concisely as we can and then elaborate the components it contains.
In our conceptualization, stigma exists when the following interrelated components converge. In the first component, people distinguish and label human differences. In the second, dominant cultural beliefs link labeled persons to undesirable characteristics — to negative stereotypes. In the third, labeled persons are placed in distinct categories so as to accomplish some degree of separation of “us” from “them.” In the fourth, labeled persons experience status loss and discrimination that lead to unequal outcomes. Stigmatization is entirely 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. With this brief explication of the stigma concept as background, we turn to a more detailed examination of each component we identified.
The vast majority of human differences are ignored and are therefore socially irrelevant. Some of these — such as the color of one’s car, the last three digits of one’s social security number, or whether one has hairy ears, are routinely (but not always) overlooked. Many others, such as one’s food preferences or eye color 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 socially salient in the United States at this time. The point is that there is a social selection of human differences when it comes to identifying differences that will matter socially.
The full weight of this observation is often overlooked because once differences are identified and labeled, they are typically taken for granted as being just the way things are — there are black people and white people, blind people and sighted people, people who are handicapped and people who are not. There are, however, some observations we can make that bring to light just how social this social selection of human differences is. Central in this regard is the observation that substantial simplification is required to create such groups. One example is the assignment of individuals to categories of “black” or “white” when there is enormous variability within the resulting categories and no clear demarcation between categories on almost any criteria one can think of, even attributes like skin color, parentage, or facial characteristics that are believed to be the characteristics that define the categories (Fullilove 1998). The same can be said 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 psoriasis, incontinence and schizophrenia. Again the distinctions that are drawn are frequently taken for granted and we may also find it very easy to enumerate the reasons why people make such distinctions. 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.
The second component of stigma occurs when human differences are linked to undesirable attributes. This aspect of stigma was highlighted in Goffman’s (1963) work and has been a central part of the conceptualization of stigma ever since. In our terms, this aspect of stigma involves a label and a stereotype with the label linking a person to a set of undesirable characteristics that form the stereotype. An example of this component is evident in a vignette experiment conducted by Link et al. (1987). The study experimentally manipulated labeling, tagging a random half of the vignettes “former mental patients” and the other half “former back-pain patients.” It also included a measure of 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 rejecting responses. When the vignette described a former mental patient, however, these beliefs were potent predictors of rejecting responses: respondents who believed mental patients were dangerous reacted negatively to the person described as a former mental patient in the vignette. Apparently, for many people, 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.
A third feature of the stigma process 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 as established old order Americans defined
African American slaves, American Indians and successive waves of immigrants as
outgroups — the “them” who were very different from “us.” Few groups were entirely spared. For example, Morone (1997) provides quotes
from Benjamin Franklin’s observations of the impact of Dutch immigrants (them)
on the 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). Central to the separation of “us” and “them” are other components of the
stigma process. For example the linking
of labels to undesirable attributes — become the rationale for believing that
negatively labeled persons are fundamentally different from those who don’t
share the label — different types of people.
In the extreme, the stigmatized person is thought to be so different
from “us” as to be not really human. And again, in the extreme, all manner of
horrific treatment of “them” becomes possible.
Evidence of efforts to separate us from them are sometimes directly
available in the very nature of the labels conferred. Incumbents are thought to “be” the thing they are labeled
(Estroff 1989). For example, some
people speak of persons as being epileptics or schizophrenics rather than
describing them as having epilepsy or schizophrenia. This is revealing regarding this component of stigma because it
is different for other diseases. A
person has cancer, heart disease or the flu — they are one of “us,” a
person who just happens to be beset by a serious illness. But the person is
a “schizophrenic.”
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.
Stigma is entirely dependent on social, economic and political power – it takes power to stigmatize. In some instances the role of power is obvious. However, the role of power in stigma is frequently overlooked because in many instances power differences are so taken for granted as to seem unproblematic. When people think of mental illness, obesity, deafness, and having one leg instead of two, there is a tendency to focus on the attributes associated with these conditions rather on power differences between people who have them and people who do not. But power, even in these circumstances, is essential to the social production of stigma.
One way to recognize this is to focus attention on groups who are relatively low in power and note that although members of such groups can engage in labeling and stereotyping they are limited by low power from achieving a deeper and more complete stigmatization of the people they may seek to stigmatize. Consider for example patients in a treatment program for people with serious mental illness. Patients in such a setting are likely to identify and label human differences in staff. For instance, they might tag some clinicians with the label “pill pusher” and apply stereotypes connected with the labels they create such as that pill pushers are “cold,” “paternalistic,” and “arrogant.” Finally they might treat the people they identify as pill pushers differently in accordance with the conclusions they have drawn about them by avoiding or minimizing communication with them, exchanging derogatory comments and jokes about them, and so on. Thus although the patients might engage in every component of stigma we identified, the staff would not end up being a stigmatized group. The patients simply do not possess the social, cultural, economic and political power to make their cognitions about staff have serious discriminatory consequences.
Consider further that scenarios similar to the one just described exist for all sorts of other 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. Such a realization clarifies why the definition of stigma must involve reference to power differences. Without such a reference, stigma becomes a very different and much broader concept that might be applied to lawyers, politicians, Wall Street investors and white people. Stigma is dependent on power.
Because of the importance of power in stigmatization, it is critical to ask the following set of questions: Do the people who might stigmatize have the power to insure that the human difference they recognize and label is broadly identified in the culture? Do the people who might confer stigma have the power to insure that the culture recognizes and deeply accepts the stereotypes they connect to the labeled differences? Do the people who might stigmatize have the power to separate “us” from “them” and to have the designation stick? And do those who might confer stigma control access to major life-domains like educational institutions, jobs, housing and health care so as to put really consequential teeth into the distinctions they draw? To the extent that we can answer yes to these questions, we can expect stigma to result. To the extent that we answer no, some of the cognitive components of stigma might be in place, but what we generally mean by stigma would not exist.
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 like 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 do not have schizophrenia but have similar physical conditions. 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 many disadvantages can result outside of a model in which one person 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 person and the employer offering a job in such an instance need not hold racist beliefs. But does structural discrimination have an impact on, say, people with schizophrenia? Consider some possible examples.
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 to adequate care and management. As a consequence people with schizophrenia are less able to benefit from scientific discoveries than they would have been if the illness they happened to develop was not stigmatized. Further, the resources available to deliver state of the art treatments are not as well developed as they are for illnesses that are not as stigmatized as schizophrenia. Consider further that because of historical processes influenced by stigma, treatment facilities tend to be either isolated in settings away from other people (Rothman 1971) or confined to some of the most disadvantaged neighborhoods in urban settings 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 —stigma has affected the structure around the person, leading the person to be exposed to a host of untoward circumstances.
Once the cultural stereotype is in place, it can affect labeled persons in important ways that do not involve obvious forms of discriminatory behavior on the part of people in the immediate presence of the stigmatized person. 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 socialization into our culture (Angermeyer and Matschinger 1996; Scheff 1966; Wahl 1995). Once in place, people’s 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 less trustworthy, intelligent, and competent. These beliefs have an especially poignant relevance for a person who develops a serious mental illness, because the possibility of devaluation and discrimination becomes personally relevant. If one believes that others will devalue and reject people with mental illnesses, one must now fear that this rejection applies personally. The person may wonder, “Will others think less of me, reject me, because I have been identified as having a mental illness?” Then to the extent that it becomes a part of a person’s worldview, that perception can have serious negative consequences. Expecting and fearing rejection, people who have been hospitalized for mental illnesses may act less confidently, more defensively, 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, Gonfrein, and Owens 2000), depressive symptoms (Link, Struening, Rahav, Phelan, and Nuttbrock 1997), unemployment and income loss (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 lies anterior to the immediate situation and rests instead in the formation and sustenance of stereotypes and “lay theories.” Still the consequences are sometimes severe and undoubtedly contribute greatly to differences in the life chances of people with mental illnesses.
Our conceptualization draws attention to one way in which stigma is a persistent predicament — why the negative consequences of stigma are so difficult to eradicate. When powerful groups forcefully label and extensively stereotype a less powerful group, the range of mechanisms for achieving discriminatory outcomes is both flexible and extensive. We mentioned three generic types of mechanisms — direct discrimination, structural discrimination and discrimination that operates through the stigmatized person’s beliefs and behaviors. But lying below these broad-band designations are a whole multitude of specific mechanisms — there are many ways to achieve structural discrimination, many ways to directly discriminate and many ways in which stigmatized persons can be encouraged to believe that they should not enjoy full and equal participation in social and economic life. Moreover, if the mechanisms that are currently in place are blocked or become embarrassing to use, new ones can always 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 — like locating people with schizophrenia in disadvantaged areas of the city — can achieve some of the same ends.
Stigma thereby becomes a persistent predicament in the following sense — as long as stigmatizers sustain their 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 of the research on stigma proceeds by examining the stigma associated with one circumstance at a time (e.g. AIDS, obesity, mental illness, race, gender, homosexuality, etc.) and most also assesses only one outcome at a time (e.g. earnings, self esteem, housing, social interactions etc.). When this occurs, researchers often find some level of effect for a particular stigmatized group on a particular outcome. However, it is also usually true that many factors other than the stigma processes in question also influence the outcome, leaving stigma as just one factor among many. This can lead to the conclusion that stigma matters but that its effect is relatively modest compared to other factors. This accounting is misguided for two reasons. First, in seeking to understand the impact of stigma for a particular circumstance, one must keep in mind that it can affect 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 in studying a particular outcome. Thus 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. Thus when viewed broadly, stigma processes likely play a major role in life chances.
Health and “life itself” were included in the list of so called life chances considered above. As a consequence, along with access to jobs, housing, schools and social connections we would expect stigma to have a powerful influence on health. In this regard it is useful to consider the effect of disease-related stigma on 1) the etiology of diseases and health conditions other than the stigmatized condition and 2) on the course and outcome of the stigmatized medical condition.
Stigma and Stress. An important way in which stigma can cause 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 through blocked striving. To the extent that discrimination occurs through one of the broadband mechanisms we described above — direct discriminatory behavior by others, structural discrimination or discrimination that operates through the stigmatized person — 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 blocked striving has been posited as an important source of strain in people’s lives that has harmful consequences for mental and physical health. Another way to think about the generation of stress is to recognize that discrimination produces stressful events — 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 that comes with having to cope with the possibility of being stigmatized. 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. While stigma does not always harm these coping resources it frequently does — 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. 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 has had such a robust association with disease and death across historical periods that differ so dramatically in the risk and protective factors, diseases and health care systems — people with more resources of knowledge, money, power, prestige and social connections are better able to avoid risks and 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 mechanisms of discrimination, stigma places a person at a significant social disadvantage with respect to knowledge, money, power, prestige, and social connections and to the extent that is does, it influences access to protective factors and exposure to risk factors so as to shape patterns of disease and death. And 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 are likely to experience worse health because of stigma.
The framework we have in mind is that a person develops an illness and then the stigma associated with that illness influences both the clinical course of the condition and outcomes such as social and occupational functioning.
One major way in which course and outcome can be influenced 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 in exacerbations of relapses of the condition in question.
A second major way in which stigma can influence course and outcome is through access to effective treatment. 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 then delay or avoid seeking treatment when they develop such a condition. Similarly someone who has already been identified and labeled may seek to distance themselves from the stigmatizing label by avoiding treatment and thereby becoming noncompliant with treatment regimens. When either of these processes operates, 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 seeking help 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 people with psychosis pose (Link et al. 1999). To the extent that this fear increases the need for guards, locked wards, searches, barbed wire and the like stigma produces very negative circumstances in treatment settings that could easily make people want to avoid those settings. Similarly, if less money is given to 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 it is possible 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.
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. Although stigma research is definitely on the rise, and even though this conference represents an important indication of an upswing in concern at the international level, 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. If stigma is indeed as important as we claim, 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 presented. In some cases there exists relatively strong evidence to support connections between stigma and negative health consequences, in other instances the connections we drew were simply reasonable possibilities in need of empirical investigation. Because of this limited coverage it is clear that 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 approach of research that evaluates carefully designed intervention programs. In studies like these investigators devise interventions based upon current knowledge and do rigorous evaluations of impact 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 interests groups, concerned citizens or by the people who are stigmatized themselves. 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 at least keep a broader vision so that the overall impact of stigma on public health is not lost.
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