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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."
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