Confronting Stigma
by Dr. Otto F. Wahl
People with mental illnesses have a triple burden. They must first of all struggle with disorders that are painful, disabling and even overwhelming. They then encounter a mental health treatment system that is too often fragmented and unresponsive to their needs. And, on top of this, they must deal with the negative and misinformed attitudes and behavior of those around them toward individuals with mental illnesses; this is the burden referred to as stigma.
The Surgeon General of the United States, in the first ever Surgeon General's Report on Mental Health, identified stigma as one of the greatest barriers to improved mental health care today, observing that "stigma tragically deprives people of their dignity and interferes with their full participation in society." The report strongly recommends that society, increase efforts to confront and conquer stigma, a burden undeserved by those who bear its pain. Understanding stigma — how it is manifest, what obstacles it poses for those with mental illnesses and what its impact is on the individual — is an important first step toward overcoming it, and one significant key to understanding stigma is to hear from those who have experienced it.
With this in mind, my research team at George Mason University recently completed a study in which we contacted mental health consumers across the country, asking them about personal experiences of stigma and discrimination. We heard from over 1400 consumers, some from every state, and interviewed 100 of them at length, who expressed profuse thanks for being given the opportunity to speak. Here is some of what they reported.
Mental health consumers said that they experienced rejection and isolation as a result of their psychiatric diagnoses. Friends, co-workers and even relatives became uncomfortable around them, ceased to contact them or avoided them. "I think the thing that is most devastating for mentally ill people," said one study participant, "is that they are completely ostracized by their friends." All of a sudden, the phone quits ringing and they quit coming to the house." When people with physical illnesses are in the hospital, others come to visit and send cards and flowers. Furthermore, when those who have been physically ill return home, friends and co-workers bring them casseroles and express pleasure at their return. However, when someone with a mental illness is hospitalized, his or her experience is often quite different, as another consumer reveals. "Friends of mine had little to do with me. "Christmas cards that we used to exchange in the past don't happen any more. Telephone calls are few and far between." Mental health consumers feel rejected and abandoned at the very time that they may be most in need of understanding and support.
For some who experienced mental health problems, the rejection went beyond neglect and avoidance to harassment and ridicule because of their illness. "I have been called bad names by kids and teenagers in my community when they learned I had a mental illness," noted one consumer. "People called me things like "mentally retarded," "corn flakes" and "looney bird."
One person described a truly heart-breaking incident. She said, "There was a young woman in several of my art classes who would never miss a chance to insult me in some oblique way. One day this individual [showed up] majorly stoned on marijuana. She sat down and started singing the words "I'm a looney tune, I'm a looney tune" in a falsetto. I laughed along with everybody else until I realized that some people looked embarrassed, some were smirking and others were watching me carefully and quietly. I suddenly "got it." I realized the "joke" was not about her state of "stonedness" but rather the fact that I was an ex-mental patient. I had considered most of these people as "friendly acquaintances," and I was so shocked I just sat there and pretended I didn't know that I was the joke."
The expectations that consumers would not be able to handle job or school or interpersonal demands because of their psychiatric illnesses was yet another aspect of negative public attitudes encountered by people in our study. Moreover, consumers reported being frustrated and discouraged by repeated reminders of their incapacity and the expectation, often communicated by mental health caregivers, that mental illness would preclude a full and satisfying life. Sometimes these ideas were conveyed through well-meaning cautions not to take on too much activity that might be stressful. "Even the people that try to help us," observed one consumer, "treat us as though we're helpless, and they try to protect us too much because they believe that we're unable to help ourselves."
Other times the messages were more directly discouraging and infuriating. "I was seeing this one psychiatrist," reported an angry consumer, "for whom I would never work. He told me just to accept that I'm going to have to be at home and in and out of hospitals. [He] told me that I was chronically mentally ill, with an IQ of 79, so to just go home and live with it. Since he told me that, I have gone back to graduate school, gotten an MSW and am working at a mental health substance-abuse clinic."
Consumers also told about their experiences of discrimination in which their psychiatric treatment histories were used to disqualify them from school programs, housing opportunities or jobs. "I applied for employment at a well-known national engineering company," recalled one consumer, "and received a job offering with the condition that I bring a work-release note from my doctor. (The company knew that I had not been working due to an [unspecified] illness.) When I gave them the note stating that I was mentally ill but could now work, the officials "discovered" they could no longer afford to hire me."
A psychiatric history presented obstacles even for people generous enough to try to donate their time and effort to help others. One woman, who was Community Involvement Coordinator for a school district and recipient of an award for organizing her county's United Nations International Youth Year, wanted to volunteer for a YMCA Young Leaders Program. On the volunteer application, she was astonished to read, "Please note that volunteers who are being treated for any emotional or mental illness, including psychosis, depressive illness (depression or manic-depression) will not be considered."
The most commonly reported experience of stigma was what we termed indirect stigma, occurring when consumers overheard others say disparaging things about people with mental illnesses. The speakers seemed unaware that there could be individuals in their audiences who might be hurt or offended by such remarks. While slang terms for differing ethnic or racial backgrounds are generally considered unacceptable today, use of slang terms related to mental illness — nut, lunatic, madman, crazy — is widespread. Similarly, jokes that would be considered in very bad taste if applied to other groups are told without hesitation about those with mental illness. Furthermore, insensitive speakers even included mental health caregivers. "At school," one consumer reported, "the MD students often made fun of those with emotional difficulties. In medical classes, the professors even told jokes and put-downs. Acronyms, such as "GOMER" (Get him Out of My Emergency Room) were [applied to psychiatric patients]." Such remarks convey to mental health consumers how poorly they are thought of and how little others care whether they are hurt by such disparaging references.
Mental health consumers also reported being sensitive to the overwhelming negative portrayal of mental illness in the mass media, where those with psychiatric disorders are routinely portrayed as violent, ridiculous and unlikely ever to be productive citizens. One individual, for example, observed, "Television shows are built upon the comedy of someone who is crazy or out of touch with reality; they're wide open to making illness the butt of jokes. I just feel that this is no laughing matter."
The common portrayal of mentally ill killers was particularly troubling to many of our study participants. "I used to go to movie theaters quite often," noted one typical consumer. "When there has been a tragic thing happen, like a serial rapist or a murderer… it seems like that person is kinda labeled along with a schizophrenic, paranoid or some type of mental illness. And in most of the ones I've seen the way it ends up is this person getting killed and mutilated or massacred. As if that person is no better than a dog." Such images contribute substantially to mental health consumers' sense of alienation, distrust and anger because of the public's image of them.
Importantly, the results of these kinds of experience, as consumers told us, went far beyond unpleasant feelings. In fact, stigma undermines recovery, discouraging consumers from seeking treatment, education or employment. It burdens them with the need to conceal their disorders from others, creating constant worry about what would happen if they did disclose. Some consumers reported that they went miles out of their way to seek treatment removed from their communities, often developing elaborate excuses for absences in order to conceal treatment for their illnesses. Such secrecy left many isolated, with no one to talk to about what they were going through, at the very time when social support was most needed. In addition, discrimination denied them opportunities for some of the factors necessary for full recovery — productive activity, comfortable homes, education, income and community involvement.
Maybe worst of all, mental health consumers, faced with social rejection and messages that they are unworthy, incompetent and to be feared, suffered damage to self-esteem as they internalized attitudes so often conveyed to them. Although not a participant in our survey, Patricia Deegan, a clinical psychologist and mental health consumer, has expressed eloquently this devastating consequence of stigma. "Slowly, we internalized all the stigma and despair that surrounded us. We came to believe that we were as useless and as helpless and as hopeless as we were being treated. We learned to settle for less and less and actually began to believe that was all we could be. ... It was a type of dying: the death of hope, the death of dreams, the death of our humanness and our individuality."
The experiences of mental health consumers remind us how damaging and pervasive stigma can be, even unintentionally. Moreover, the ubiquity of mental illness and its stigma demand that all of us — not just mental health consumers or mental health advocates — work to eliminate stigma. The Surgeon General estimates that over 60 million people in this country will experience a diagnosable mental illness in their lifetimes. Millions more will be touched by mental illness as relatives, spouses, friends, co-workers and neighbors, so we are all likely to encounter the stigma of mental illness in a personal way. To that end, I would like to offer just a few suggestions for simple things we can do to help overcome stigma:
- Go beyond the stereotypes of mental illness. Stigma is based on stereotypes, and we can avoid its perpetuation by resisting inaccurate, negative stereotypes about mental illness while learning more about the facts of mental illness.
- Watch language usage. Most of us use terms and expressions e.g., "lunatic" or "crazy" to disparage those with whom we disagree or disapprove, but those words tend to perpetuate and encourage stigma. Monitoring our own speech and purging it of such expressions will help.
- Speak up about stigma. Respond to stigmatizing media portrayals by writing letters to editors, producers, networks — letting our friends and colleagues know that jokes, slang and other disrespectful references about mental illness are offensive and hurtful.
- Provide support for organizations that fight stigma. There are numerous organizations, such as the National Stigma Clearinghouse, the National Mental Health Association and NAMI that are devoted to education, research and advocacy about mental illness. We can contribute to the fight against stigma by joining, volunteering our time and effort or donating money.
- Listen to people who have experienced mental illness. They are in the best position to tell us how mental illness and stigma affect their lives and to help us understand what must be done to improve the situation. For example, one of the most common and impassioned pleas from mental health consumers in our survey was the simple request to be valued as humans with strengths as well as frailties, complex and complete individuals worthy of dignity and respect. As one consumer put it, "Whenever you hear that somebody's got a mental illness, don't act like they're worthless or they're no good anymore, they're ruined. Esteem them as valuable human beings."
Dr. Otto F. Wahl is Professor of Psychology at George Mason University in Fairfax, Virginia, a licensed clinical psychologist. His work includes numerous research articles and two books,
- Media Madness: Public Images of Mental Illness and Telling Is Risky Business
- Mental Health Consumers Confront Stigma.
A frequent speaker for mental health organizations, radio and TV, he serves as advisor to organizations involved in public education about mental illness, including the National Stigma Clearinghouse, the NAMI Campaign to End Discrimination and the National Mental Health Association (NMHA).
He authors a regular stigma watch column for the NMHA monthly newsletter, and he works with the Carter Center Mental Health Journalism Fellowship program to select and mentor journalists in their coverage of mental health issues. Dr. Wahl has developed an Internet website with information about his work and available resources for combating stigma. He can be contacted by e-mail at: owahl@osfl.gmu.edu or call 703/993-1361; Fax: 703/993-1359.
You can also write to him at:
Otto F. Wahl, Ph.D.
George Mason University
Department of Psychology 3F5
Fairfax, VA 22030
The consistent, strong mass media association of mental illness with violence and criminality, which occurs in both entertainment and news media, remains a grossly inaccurate representation of people with mental illnesses. The stereotype that emerges from the media is in marked contrast to the reality. The great majority of people with mental illnesses, including those with the most dramatic forms of madness, are not the violent, dangerous, evil and untreatable villains they appear to be in the mass media.
© 2000 Targeted Publishing Group, Inc. All rights reserved.