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Conceptualizing Stigma and Barriers to Care 51 6 Conceptualizing Stigma and Barriers to Care Bruce Link, Ph.D. Bernice Pescosolido, Ph.D. Arieh Shalev, M.D. DR. URSANO: The challenge before all of us is how to think together so that we can be creative in our endeavor and not only see what we have always seen before and say what we have always said before. I am pleased to have our next panel on conceptualizing stigma and barriers to care. Bruce Link is a professor at Columbia. Bernice Pescosolido is a professor at Indiana University, and Arieh Shalev is professor and chair at Hadassah University School of Medicine. DR. LINK: It is a great pleasure to be here. I have spent a good part of my career thinking about stigma. I think about its effects being very broad, affecting many different circumstances, not just mental health. The effects of stigma penetrate deeply and influence people’s lives in deep ways. Stigma is often very hard to see and if you do not have the concepts for it, you will not build the measures for it, you will not capture the phenomenon, and you will not see how it flows out and affects people. I want to start with some classic definitions of stigma and then talk about a definition that I developed with my wife, Jo Phelan. The dictionary defines it as a mark of disgrace or infamy. You have already heard Goffman’s definitions. Jones and his colleagues defined stigma as a mark that sets a person apart and links the marked person to undesirable characteristics. There are two criticisms leveled at those particular definitions. The first is that the attribute or the mark is something that the stigmatized person has; it is their stigma. It emanates from them rather than being conferred on them. The second criticism is that too much attention has been paid to marks and associated stereotypes and too little to the broad disadvantages that many people experience because of stigma. Those two criticisms came from consumer groups in mental health. I wanted to see if we could use those to leverage a new look at stigma and generate a new definition of it. Goffman had one insight that I wanted to draw upon in constructing this definition, which was his view of stigma as a relationship between concepts, such as the relationship between a mark and a stereotype. Stigma exists when interrelated con-
52 Stigma and Barriers to Care — Caring for Those Exposed to War, Disaster and Terrorism cepts converge. First, people distinguish and label human differences. Second, labeled persons are linked to undesirable characteristics, creating unwanted negative stereotypes. For example, the stereotype of someone who has been in a mental hospital is that the person is more likely to be dangerous. Third, labeled persons are viewed as an out-group, as “them” and not “us.” There is some degree of separation between us and them. Fourth, people experience emotional reactions to labeled people, such as fear, repulsion, disgust, or pity. Labeled persons may feel shame, embarrassment, and humiliation or, as Pat Corrigan might point out to us, righteous anger. Fifth, as a result of these emotional reactions, labeled persons experience status loss and discrimination. When all of these things unfold, stigma is present, and this definition gives the stigma concept a flow across these interrelated dimensions. The last thing to point out is that stigma is dependent on power. For example, you can have negative stereotypes about lawyers. But we do not use the term stigma for lawyers because they do not face huge societal discrimination. We are not fighting to keep them out of our neighborhood. I do not mind if my daughter marries one. Stigma is dependent on power and who has the power to exercise the discrimination that follows from their beliefs about a stigmatized person. Now I want to talk about the kinds of discrimination that can follow in this paradigm of stigma. First is direct discriminatory behavior towards other people. You know about the labeled person and you do something unpleasant towards them. The second one is structural discrimination. Here stigmas exist around some problem or circumstance. For example, in a military context there might be a strong and effective response to wounded soldiers but much less effort put into wounds of a psychic nature. If less has been developed, they face a kind of discrimination by getting less when they have a psychic injury than when they have a physical injury. The third type is discrimination that operates through the stigmatized person. This brings up modified labeling theory. Growing up in our society we learn what it might be like to develop any set of statuses. We also learn what it would mean to develop a mental illness. Imagine two people, one who never develops a mental illness, never goes into a psychiatric hospital. Beliefs about how other people might treat him if he were to develop a mental illness have no relevance to him. He might think that people would look down on someone with mental illness, might not want to date them, marry them, or hire them, but it does not matter to him personally because he has not developed a mental illness and gone into a psychiatric hospital. In contrast, another person does develop a mental illness, and as a consequence everything learned suddenly becomes potentially personally relevant. That can affect a person in multiple ways. One way is that they feel badly for having entered a status that others view negatively. They might cope by trying to protect themselves from rejection, and, therefore, might withdraw to a smaller group of friends and not venture out. He or she might not look for a date or ask for a job, might eschew going to treatment, or might disengage from treatment to avoid these possibilities feared associated with being mentally ill. Studies have shown that social performance can be harmed if participants think another person knows they have been in a psychiatric hospital. I developed a measure for this theory that asks what the respondent thinks most people think about someone with mental illness. Items include, “Most women would not marry men who have been in a mental hospital” and “Most people think less of a person who has been hospitalized for a mental illness.” All of us can
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FORUM ON HEALTH AND NATIONAL SECURI
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From the Conference Series: FORUM O
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ii Bruce G. Link, Ph.D. Professor,
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