Plight of the Untouchables

In China, few of the increasing number of people infected with the AIDS virus identify themselves publicly. If word leaks out that a person has contracted the virus, whether or not AIDS symptoms are apparent, dire consequences follow. School officials bar infected students from classes. Supervisors summarily fire infected employees. Close friends and neighbors join with local officials to expel the infected person and his or her family from the community.

To add injury to monumental insult, physicians and nurses at many hospitals refuse to treat AIDS patients.

This situation is a public health powder keg, says epidemiologist Konglai Zhang of China's Peking Union Medical College. The social vilification of AIDS sufferers and their kin amplifies the suffering caused by the disease while discouraging any large-scale efforts to prevent its spread, he asserts.

People with AIDS rank as pariahs in many other countries, as well. Gay activists and other groups in the United States have lobbied effectively for AIDS research and treatment, yet surveys indicate that many of their fellow citizens still regard AIDS sufferers with a mix of disdain and fear.

Perhaps the most visibly stigmatized illness in the world today, AIDS is only one of a variety of health problems that turn people into social untouchables. In these cases, health-care workers often have difficulty discerning what harms a person's well-being more—the disease or the isolation and rejection encountered as a result of having the disease.

At a September conference, an international contingent of researchers discussed the potentially far-reaching impact of stigmas on public health in both developing countries and industrialized nations. The 3-day meeting was hosted by the National Institutes of Health in Bethesda, Md.

Meeting participants addressed the influences of stigma on an array of physical and mental ailments. These include infectious diseases, such as AIDS, tuberculosis, and leprosy; physical problems ranging from epilepsy to facial disfigurement; and mental disorders, with an emphasis on schizophrenia.

In many societies, certain behaviors—homosexuality and prostitution, for instance—are treated as degenerate or illegal because they violate moral sanctions. Community and government responses to diseases such as AIDS draw from these preexisting reservoirs of stigmatization.

"The overall impact of stigmas on public health continues to be dramatically underemphasized," says epidemiologist Bruce G. Link of Columbia University. "We need a new era of research into stigma and its health consequences."

Stigma research

Nearly 40 years ago, the late sociologist Erving Goffman launched the first era of stigma research. Goffman's 1963 book, Stigma: Notes on the Management of Spoiled Identity (Prentice Hall), inspired social scientists to examine stigmas' effects on groups ranging from the physically disabled to exotic dancers.

In Goffman's view, any quality or trait that marks its bearer as unacceptable or inferior in a particular culture creates a stigma, or a "spoiled identity." Stigmas commonly result from a transformation of the body, blemish of individual character, or membership in a despised group. The stigmatized individual usually feels a sense of shame, guilt, and disgrace.

Despite the continuing influence of Goffman's ideas, there's no scientific consensus on how to define and measure stigmatization, Link says. Researchers have focused on self-esteem losses and other personal consequences of being stigmatized. Left largely unexplored have been issues such as how neighborhoods and societies decide to reject people with certain characteristics.

Attempting to fill that knowledge gap, Link and his Columbia colleague Jo C. Phelan propose that a stigma arises as a product of four social processes. First, people distinguish and label human differences. Many of these differences are trivial, such as eye color and food preferences, but some carry cultural clout, such as skin color and sexual preferences.

From this spectrum, specific differences are then equated with undesirable characteristics, creating negative stereotypes (SN: 6/29/96, p. 408: http://www.sciencenews.org/sn_arch/6_29_96/bob1.htm). In several studies, for instance, Link found that many people wrongly perceive former mental patients to be especially violent. People who hold such views express a greater desire to avoid contact with anyone who has a mental disorder than others do.

The third building block of stigma raises the stakes on a negative stereotype by placing its members in a social category of "them" as opposed to "us." A person whom others describe as "having" cancer remains one of "us," a fellow human beset by a serious illness, Link notes. In contrast, someone characterized as "being" a schizophrenic inhabits the desolate realm of "them."

Finally, someone labeled in this way experiences discrimination and a loss of social standing. This increases the likelihood of living in poverty, receiving poor or no medical care, and receiving other jolts to physical health, Link says.

Outside Western nations, stigmatization is usually a family affair, says anthropologist Veena Das of Johns Hopkins University in Baltimore. Consider the AIDS situation in China, as described by Zhang. Villagers and townspeople regard AIDS as an affliction of all close kin to the infected person.

In many developing nations, Das says, bearers of stigmatized diseases are assumed to have violated moral taboos, especially those regarding sexuality. In India, she says, public health officials have until recently accepted the view of many citizens that only prostitutes, homosexuals, or intravenous drug users could contract AIDS. At the same time, officials largely ignored a dramatic rise in new AIDS cases among monogamous, married women.

Moreover, people often fear stigmatized diseases of all kinds as being highly contagious, even after medical treatment. In a study of low-income neighborhoods in Delhi, India, for example, Das found that children who dropped out of government schools because they had contracted tuberculosis weren't permitted to return to class after successful treatment. School officials cited concerns that these tuberculosis-free kids would still spread the disease to others.

What's more, youngsters who had shed tuberculosis expressed nagging fears that they would never fully recover. They tended to blame past tuberculosis for new symptoms of physical weakness, fever, general aches and pains, or sadness.

Leprosy sufferers

Public health success stories do exist in the fight against stigmas. One involves leprosy, a disease that epidemiologist Mitchell G. Weiss of the Swiss Tropical Institute in Basel calls "the gold standard of stigma."

Leprosy, or Hansen's disease, is an infectious condition characterized by the spread of disfiguring nodules on the face and the rest of the body. At various times, societies around the world have treated leprosy sufferers with disdain. The Old Testament portrays a skin disease suggestive of leprosy as divine punishment for immorality and cause for a person's removal from society.

Yet attitudes in many countries toward leprosy sufferers have improved substantially in the past 2 decades, Weiss says. This reflects both the emergence of effective drug treatments in the 1980s and the influence of a subsequent public health campaign to spread the message that "leprosy is curable and not hereditary," he contends.

Still, efforts to reform laws that promote the abandonment and segregation of patients with Hansen's disease have generally lagged behind advances in medical treatment and changes in public attitudes, Das holds.

Some developing nations have also made encouraging inroads against the AIDS stigma. Community treatment and education programs show promise as tools for chipping away at unfounded assumptions about AIDS, according to studies conducted by the Horizons Project, a research organization based in Washington, D.C.

Individuals who have the AIDS virus now work at local health centers in Burkina Faso, India, Ecuador, and Zambia, says Horizons Project psychologist Julie Pulerwitz. These newly minted health educators show infected patients how to strengthen themselves through proper nutrition, exercise, and rapid treatment of opportunistic infections.

In this way, such programs create living examples with which to lessen the AIDS stigma in the surrounding community, Pulerwitz maintains. It's a tough task, though. In countries such as South Africa and Uganda, for example, research suggests that grade school children already perpetuate and experience the AIDS stigma of the adult world. Kids without the disease frequently tease and ostracize any peers they discover to be infected.

Epileptic seizures

Stigmatization's specter also haunts many epilepsy sufferers. Latin America and the Caribbean provide a stark case in point, says neurologist Li Li Min of Cidade University in Campinas, Brazil. The lack of proper medical treatment for epilepsy in those areas contributes greatly to the stigmatization, he asserts. Of an estimated 5 million individuals in these regions who have epilepsy, about 3.5 million receive no medication for their disorder because of poverty and health care's disarray, according to Min.

Public ignorance about epilepsy's causes further inflates stigmatization, he says. Many Latin Americans believe that evil spirits cause epileptic seizures as retribution for a person's past misdeeds. The condition also has a false reputation for being contagious, Min adds.

Scientists know little about European attitudes toward epilepsy, however. A preliminary survey conducted by sociologist Ann Jacoby of the University of Liverpool and one of her colleagues indicates that people with epilepsy evoke substantial fear and hostility in northern European nations but more favorable attitudes in southern Europe.

Stigmas have long plagued people with mental disorders, regardless of where they live or how much money they have. The severe disruption of thought and emotion known as schizophrenia, which afflicts 1 in 100 people worldwide, generates "spoiled identities" with particular power.

In remote Maya villages of southern Mexico, stigmatization dominates the lives of people who exhibit psychotic symptoms that roughly correspond to schizophrenia, says psychiatrist Pablo J. Farias of the Ford Foundation in Mexico City. Villagers refer to their neighbors who display this schizophrenia-like condition by a term that means "rabid dog," he says.

"The so-called 'rabid dogs' are often physically abused in their homes and denied community participation of any kind," Farias remarks.

People with schizophrenia and other severe mental disorders face considerable stigma in the United States, as well, according to psychologist Otto F. Wahl of George Mason University in Fairfax, Va. Many do all that they can to conceal their condition from others. They withhold medical information on applications for jobs and licenses and constantly worry that their secret will be exposed, he says.

Stigma-related fears hinder recovery from mental disorders and deter people from seeking treatment, Wahl says. In a 1999 report, he described his national survey of 1,301 consumers of mental-health services. He also interviewed 100 people who had completed the survey.

Wahl recruited the study participants through contacts at a national advocacy group for mentally ill people. Most participants had been diagnosed with schizophrenia, major depression, or bipolar disorder, also called manic depression. A large majority had been hospitalized at least once for their condition.

On an encouraging note, more than half the participants said that they had seldom or never faced discrimination in obtaining jobs or housing. However, many had found themselves shunned, avoided, and treated as less competent by people who learned of their diagnosis. A substantial minority of the survey responders reported that mental-health workers had discouraged them from pursuing ambitious goals and had otherwise treated them in demeaning ways.

Medical workers may also hold stigmatizing attitudes toward severe mental illness. Other data indicate that people with schizophrenia who suffer a heart attack are less likely than other heart attack patients to receive coronary bypass surgery and other state-of-the-art medical treatments.

Collective decisions

There's an upbeat side to stigmatization, however, that often goes unnoticed, Link remarks. Collective decisions to stigmatize some behaviors, such as smoking cigarettes and using illicit drugs, actually benefit public health, he points out.

"It's hard to imagine many aspects of society running without some form of stigma," Weiss holds. "People often behave according to honor systems and a fear of public disapproval."

What's more, encounters with stigmas may inspire some people to overcome society's obstacles and achieve more than they might have otherwise.

Consider teenagers who have various types of severe facial injuries and disfiguring medical conditions. In interviews with 33 of these youngsters, a team led by Donald L. Patrick of the University of Washington in Seattle uncovered pervasive feelings of being alone and misunderstood, frustrated with an uncontrollable situation, and wanting to look normal.

Yet a handful of the same teens said that they had become better, stronger people because of such harsh experiences. These individuals regarded themselves as having developed a heightened sense of compassion for others and more wisdom about life's ups and downs than many of their peers have.

Resilient teens coped with disfigurement in distinctive ways. Some honed a sense of humor about their looks and became class clowns. Others put classmates and adults at ease by openly talking about their condition in conversations.

Scientists hoping to expose stigmas' tangled relationship to public health will need to exhibit similar resolve. "Stigma research concerned with health issues is itself stigmatized," says psychiatrist Sing Lee of the Chinese University of Hong Kong. "There's not a lot of it, and it usually gets published in obscure journals."

Letters:

A Canadian nurse I know is working in Mt. Selinda, Zimbabwe. She is currently designing her dissertation, in which she will interview local women in an attempt to understand their perspectives on health and how to prevent HIV infection and AIDS. When I read your article on stigmas' harm to public health , I e-mailed her the URL for the Science News article. Within 24 hours, she e-mailed back a message that she will incorporate questions about local stigmas into her interviews and use the original papers as references. I thought Science News readers would like to know about the role of your publication in networking researchers worldwide.

Sigrin T. Newell
Glenmont, N.Y.

References:

Das, V. 2001. Stigma, contagion, defect: Issues in the anthropology of public health. Stigma and Global Health: Developing a Research Agenda, An International Conference. Sept. 5-7. Bethesda, Md. Available at http://www.stigmaconference.nih.gov/DasPaper.htm.

Link, B.G., and J.C. Phelan. 2001. On stigma and its public health implications. Stigma and Global Health: Developing a Research Agenda, An International Conference. Sept. 5-7. Bethesda. Md. Available at http://www.stigmaconference.nih.gov/LinkPaper.htm.

Weiss, M.G., and J. Ramakrishna. 2001. Interventions: Research on reducing stigma. Stigma and Global Health: Developing a Research Agenda, An International Conference. Sept. 5-7. Bethesda, Md. Available at http://www.stigmaconference.nih.gov/WeissPaper.htm.

Further Readings:

Bower, B. 1996. Fighting stereotype stigma. Science News 149(June 29):408. Available at http://www.sciencenews.org/sn_arch/6_29_96/bob1.htm.

Goffman, E. 1963. Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, N.J.: Prentice Hall.

Wahl, O.F. 1999. Mental health consumers' schizophrenia and staff rejection. Schizophrenia Bulletin 25:467.

Sources:

Veena Das
Johns Hopkins University
Department of Anthropology
404 Macauley Hall
3400 North Charles Street
Baltimore, MD 21218

Bruce G. Link
Columbia University
New York State Psychiatric Institute
School of Public Health
630 West 168th Street
New York, NY 10032-3702

Jo C. Phelan
Columbia University
School of Public Health
630 West 168th Street
New York, NY 10032-3702

Mitchell G. Weiss
Department of Public Health and Epidemiology
Swiss Tropical Institute
Socinstrasse 57
CH-4002 Basel
Switzerland

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