Stamping out the stigma of mental illness

Negative attitudes towards mental illness can – and cannot – be eliminated.

If you suddenly learned that a friendly neighbor or colleague at work had a history of mental illness schizophrenia, bipolar disorder, depression, paranoia or another psychiatric problem what would you do? Give him a hug and encourage him or suddenly keep your distance? Most of us would follow the second path, even if our hearts were with the unfortunate victim of mental illness. It isn't that we're bad people, but many of us are scared by the myths of psychiatric disorders, especially that many patients have the potential for violence, or by the feeling that such people are "strange." That phenomenon is called stigma, and it is not benign. It very often leads to discrimination against people with a history of mental illness, even if they are under control or recovered. A study conducted for the US Center for the Advancement of Health by researchers at the University of Indiana and Columbia University a few years ago and published in the American Journal of Public Health offers interesting information about stigma. The researchers found that although the American public do not view all people with mental illness uniformly, they viewed all people with mental illness no matter what the severity as less competent and more violent than others. The majority also said that people with schizophrenia are more likely to have difficulty managing their daily affairs than are those with depression, for example. Two-thirds of the people surveyed would use legal means to force drug abusers to get treatment, while only about half favor coercion for those with schizophrenia or alcohol dependence, and a quarter support it for those with major depression. Well over 90 percent of those surveyed, however, would force patients to get treatment when they present a danger to themselves or others. The findings didn't vary significantly between men and women or high- or low-income people. "The results continue to reflect an underlying stigma towards persons with mental health problems, an exaggeration of the impairments or a threat posed by these disorders and a startling negativity toward individuals with substance abuse problems," the researchers concluded. But in fact, a scientific study of people suffering from mental illness found in 2002 that the contribution of mental illness to societal violence is very modest, despite increasing public concern about the potential for it. The article, published in the British Medical Journal, noted that the vast majority of people suffering from mental illness are not violent. Overall, fewer than 10% of serious violent acts, including homicide, are attributable to psychosis. In fact, variables such as male sex, young age and lower socioeconomic status contribute a much higher proportion to societal violence than the modest amount attributable to mental illness, said the BMJ, which dedicated an editorial to the subject. If a person with mental illness is violent, the researchers added, it doesn't necessarily mean this is due to the illness; it may be due to other coexisting risk variables. Again, Israelis' views on this matter are probably similar, even though the last decade has seen quite a big change for the better in public attitudes towards those who are "not normal," whether they are physically or mentally disabled. Many voluntary organizations have been set up to help them, including in the haredi community, which for years was especially reluctant to admit mental illness in the family for fear that it would affect the marriage chances of its younger members. But there is still much to be done. "Ilana," a recovering mental patient who anonymously wrote an article on "Stigma in Our Society" in the Israel Journal of Psychiatry three years ago. "When we were young, the term 'mentally ill' was one of abuse. We gain these impressions from the earliest age. As a child I recall a mentally ill neighbor. She would talk to herself for hours in her house and sometimes would walk down into the courtyard just wearing her underwear. We, the neighborhood children, would call her 'crazy.' We understood nothing, yet had already learned that to be crazy is to be abnormal... Later, when we ourselves or a family member are ill, then the stigma makes us feel terrible," wrote Ilana, who has been hospitalized for her illness. "I was on a bus and felt different from everyone else, as if something was written on my forehead that everyone could see: 'I am of a different species. I am different because I was in such a place that is removed from the rest of society,'" she continued. How does one reduce the stigma against people who suffer or have recovered from mental illness? There have been some local and national efforts, and the World Psychiatric Association and World Health Organization (WHO) have been active on an international level in more than two dozen countries. Two leading experts in fighting this stigma husband-and-wife team Prof. Julio Arboleda-Florez and Heather Stuart of Queen's University in Ontario were in Jerusalem recently to discuss the subject. They were the guests of Prof. Itzhak Levav, research adviser to the Health Ministry's department of mental health services and a consultant to the WHO. A small group of mental health professionals, patients and activists took two hours on a Friday morning to hear Arboleda-Florez, a Colombian-born psychiatrist and epidemiologist, and Stuart, a Canadian epidemiologist and sociologist. They noted that there is only one large psychiatric hospital where patients are committed for a long period in the whole province of 12 million people; all other institutions for the chronically ill have been replaced by community facilities where patients who live at home or in hostels are treated on a mostly outpatient basis. This situation, in which the mentally ill are no longer locked away like criminals but are in full view, has been beneficial to the patients, but it has sometimes scared the public, who suffer from misconceptions about violence. Fear of mentally ill people has been boosted, they said, by high-profile and occasionally sensationalist reporting of rare, albeit tragic, violent acts. One crazed Unibomber or subway killer is enough to tarnish all mental patients. Whenever a psychotic individual commits a murder, they said sadly, the murderer is identified as being mentally ill; this gives the false impression that most mentally ill people have the potential to be violent. Arboleda-Florez noted that stigma is largely responsible for the revocation of the human and civil rights of many patients, even in the most advanced democratic countries. Their rights to health insurance, social benefits and other things, he said, are often denied them. They are discriminated against and lack social and work opportunities. "Stigma is everybody's problem, and it makes it difficult for patients to be integrated into society, so everybody should work to reduce it," he added. Patients are victimized in other ways as well. A study published in the August issue of the Archives of General Psychiatry by researchers at Northwestern University in Chicago found that more than a quarter of individuals with severe mental illness were victims of violent crime in the past year 11 times the rate in the general population. The two Canadian epidemiologists launched a publicly and privately funded educational campaign with radio public-service ads to try to eliminate stereotypes and reduce the stigma of mental illness. As the sponsors included organizations that treat schizophrenia, they had to focus on that psychosis. Representative samples of residents of Calgary a wealthy, highly educated population were taken and compared with residents of nearby Edmonton, a mostly blue-collar population, and with those of Drumheller, a rural community of 5,000. They were all asked about their attitudes on schizophrenia before and after the media campaign. "We didn't know anything; we started from scratch," said Stuart. "Research on stigma was only theoretical, not in practice about how to minimize it." Some 500 60-second radio spots were broadcast (TV was too expensive, said Stuart), providing information on what causes schizophrenia, using the voices of patients and therapists. It was presented as a biologically derived brain disease rather than as a condition in which the patient is to be blamed. Although the researchers had been hopeful that the spots would increase awareness and information, promote sympathy for schizophrenics and most importantly change attitudes and behavior, this campaign fell flat on its face. Opinion surveys, Stuart recalled, show little or no difference. "Knowledge in all the three groups were high, especially in Calgary, before the campaign, and people knew no more after it than before." Unfortunately, she reported, the level of stigma was not reduced by the radio spots, and when asked hypothetical questions on how they would feel or act when in contact with schizophrenics, they showed no positive change despite widespread exposure to the educational campaign. Stuart concluded that it's a mistake to bombard the general population with information about mental illness. "No one size fits all. Instead, it is better to target specific groups, such as schoolchildren, employers and officials in social services that are responsible for the mentally ill." Successful strategies included establishing a toll-free number to provide information to those who sought it; meetings with newspaper editors to discuss stigma; updating of teachers' manuals and textbooks; school art and poetry activities and contests; a speakers' bureau that sends recovered patients out to the community; and even a play they called "Starry, Starry Nights" that dramatized patient stories. Social advocacy is needed to modify organization policies and procedures that create and maintain stigma, Stuart stressed. A sustained program is much better than a short-term campaign. When this reporter suggested that their radio campaign results might have been different if they had focused on depression, a widespread phenomenon that people could identify with much more than schizophrenia, the two conceded that this could have been a decisive factor, but they couldn't change the focus because of directives by sponsors. "Stressing the economic costs of untreated depression to employers and society would have had an impact," they said. While they were not certain that a media campaign would not work to reduce stigma in Israel, they advised careful consideration of the conclusions of their Canadian research. It is important, said Stuart, to adapt an anti-stigma program to the culture, ethnic background and economy of each country. "But we learned that gaining knowledge about mental illness does not automatically change people's behavior. Doctors, nurses, psychologists and other professionals may even discriminate against patients the most," she added. "It's hard to change attitudes and actions, but education campaigns in North America against smoking have helped change behavior." The World Psychiatric Association has digested the lessons from the Canadian program (see www.openthedoors.com) and organized several conferences on minimizing stigma, but much work still needs to be done.