May/June 2006

Rejecting the Stigma of Mental Illness
By Lynn K. Jones, DSW
Social Work Today
Vol. 6 No. 3 P. 32

Tom Wootton heard playground taunts in his head when he was diagnosed with bipolar disorder at the age of 45. He flashed on a memory of everyone jeering at one of his classmates. “I thought, ‘If I am bipolar, then I must be crazy.’ I just couldn’t accept that for a long time.”

Wootton is not alone. “This self-stigmatization—the internalizing of stigma—is one of the most significant barriers keeping people from accessing mental health treatment,” suggests Patrick W. Corrigan, PsyD, professor at the Institute of Psychology, Illinois Institute of Technology, principal investigator of the Chicago Consortium for Stigma Research, and executive director of the Joint Research Programs in Psychiatric Rehabilitation. Fifty-four million Americans—nearly one in five—have a mental health disorder and nearly two thirds of them won’t seek treatment because of stigma (Surgeon General’s Report on Mental Health, 1999). That means the playground stereotypes that affect our attitudes have consequences—often fatal consequences.

“An indication of how strongly held these beliefs are is that many people would rather tell employers that they committed a petty crime and served time in jail than admit to being in a psychiatric hospital,” according to Amy Watson, MSW, PhD, previously the program director of the Chicago Consortium for Stigma Research and presently assistant professor at the Jane Addams College of Social Work at the University of Illinois at Chicago.

What Is Stigma?
“Stigma involves setting apart a group in society and associating particular characteristics with them, which we think of as stereotypes,” says Beth Angell, MSW, PhD, assistant professor of the School of Social Service Administration at the University of Chicago. “In the mind of the public, having a mental illness seems to be associated with some undesirable attribute—for example, the belief that people with mental illness are more violent than others or that they lack the competence to be able to negotiate social roles, such as working.

“It is difficult to know exactly how those stereotypes come about; they can be caused by lots of factors. For many years, people with mental illness were sequestered in institutions and hidden from society, having minimal contact with the public. During the 1950s and 1960s, we slowly began a process where we deinstitutionalized people with mental illness and they began living in the community. As a result of that, a much more visible group of people with mental illness who needed help contributed to the public developing negative stereotypes about mental illness, such as violence or bizarre behavior.”

Not in My Back yard
The Santa Barbara, CA, woman who recently went on a killing spree is the type of image we often have fixed in our minds about people with mental illness. These images don’t just come from the nightly news; they also come from popular television dramas. The opening scene of Law & Order, for example, often includes a scene of violence committed by a person with mental illness.

“We know that people with mental illness are statistically no more likely to be violent than persons without mental illness,” says Jack K. Martin, PhD, executive director of the Karl F. Schuessler Institute for Social Research and professor of Sociology at the University of Indiana. “Unfortunately, the overwhelming perception about people with mental illness is that they are very likely to become violent.”

Martin, along with his colleagues at the Indiana Consortium for Mental Health Services Research, recently completed the second of four studies on the impact stigma has on people with mental health problems.

The first study, completed in 1996, evaluated whether Americans’ attitudes about mental illness had changed since they were last studied in 1950. “What we found was encouraging and discouraging at the same time,” says Martin. “People used to see the cause of the problem as something about the individual’s character. It used to be that people would say: ‘This was God’s will.’ ‘These are bad people.’ ‘This was their punishment.’ They don’t say that anymore. People now have an ability to explain mental illness accurately, defining it as a chemical imbalance or a genetic predisposition to mental illness, often triggered by stress; they have basically adapted a medical model. A real common point of view used to be that mental health problems weren’t treatable. People no longer believe that.

“At the same time, people unquestionably have high levels of willingness to shun people with mental illness and, in particular, they don’t want to work with them and they don’t want someone who is mentally ill to join their family by marriage. So while they have more clarity about where mental illness comes from, they really want to avoid any contact.”

Stigma Sticks
Why are the stigmas associated with mental illness so sticky—especially when people are more educated about mental illness? More understanding should lead to acceptance, but “in fact there is evidence that people know much more about mental illness and that the stigma seems to be worse,” says Corrigan.

“Our work suggests that the biggest factor changing stigma is contact between people with mental illness and the rest of the population,” says Corrigan. He is trying to understand how to get consumers to go public with their mental health problems. The public needs to understand that many people with mental illness are functioning, fully contributing members of society. “Just as the gay community had to realize that [its] power was increased as they came out of the closet, a similar realization needs to occur with people with mental illness. They are reluctant to do it, for understandable reasons, but nonetheless that is what needs to happen,” adds Corrigan.

Wootton is someone who has come out. He wrote a book about his experience living with bipolar disorder, The Bipolar Advantage, is the president of his local bipolar disorder support group, has established a workshop program for people diagnosed with bipolar disorder, and talks to groups several times per week about both the pain and the progress of his mental health issues. He says other people with bipolar disorder appreciate what he is doing—so they don’t have to do it. They feel too vulnerable. They fear the stigma.

The National Alliance of Mental Illness realizes what an impediment stigma is to people in mental health treatment and have launched a “StigmaBusters” campaign. One initiative encourages people with mental illness to speak out and they have provided the support and structure through their “In Our Own Voice: Living With Mental Illness” program (see sidebar).

Just Like Anyone Else
Most people with mental health problems would not wish them on anyone. But more and more, we are beginning to recognize that people with mental health problems don’t just have problems—they also have talents and make positive contributions to society, just like anyone else.

Wootton views his bipolar disorder as an “advantage.” Before his diagnosis, he was a successful software programmer and earned millions by working feverishly at a highly creative pitch—for months on end—thanks to his uncontained bipolar disorder. Of course, he couldn’t sustain this and eventually hit a bipolar wall. Now he strikes a balance between controlling his bipolar disorder while still benefiting from his creative talents. This is a result of a combination of medication, therapy groups, and what he describes as “a lot of hard work.” He also works with his doctors to calibrate his medication so he is still able to tap into his bipolar capabilities. This means he is somewhat outside what they consider his ideal range of functioning but still within acceptable limits for him.

Think of Monk, the endearing TV detective who is able to discern things beyond the reach of others on his police unit. He makes no bones about the fact that his compulsive cleanliness can be a hindrance, but the good outweighs the bad. He works on his issues in therapy, but he rejects medication. He feels good with medication, but he loses his special talents.

John Nash, portrayed in the film A Beautiful Mind, won the Nobel Prize for the work he did in mathematics while struggling with the delusions and paranoia of schizophrenia. He learned to live with and control his delusions, which released the power of his intellect.

Examples like these are introducing the public to a broader view of the attributes of mental illness; a view that people with mental illness may bring gifts—not just problems. Wootton adds that the message for treatment providers is that recovery is not overcoming mental illness, but harnessing it to preserve positive attributes.

Watson cautions that people with mental illness should be valued for who they are, including those that make everyday contributions like the rest of us. “People with mental illness are mostly like everyone else with similar ranges of intelligence and talents and they should not have to be extraordinary achievers to be appreciated.”

“Many professionals are the bastions of stigma,” says Corrigan. “Part of that might be because they tend to see people only when they are acutely ill. When they are in recovery and acting in a way to challenge a stigma they are not with them.

“People with mental illness can and do recover. It is contrary to what we all learned in graduate school, which is ‘once a schizophrenic always a schizophrenic.’ The long-term follow-up research suggests that two thirds of people with intense schizophrenia can live successful lives; perhaps half of them will need job coaches or housing coaches for much of their life, but still, people, when they receive reasonable accommodation, live pretty well with schizophrenia.”

Social Justice Challenge
The social cost of stigma associated with mental illness is high because it translates into huge numbers of people with treatable mental illness not getting help. In Martin’s research, 45% of people said that if they had a mental illness they would not take medication for it, even though they believe the medication would work. They are not worried about side effects. “They are worried that if they do take medication that someone is going to find out and then they will have to suffer the consequences, including the disruptions of marital relationships and work productivity,” says Martin.

Is a society without debilitating mental illness out of reach? It turns out it is not. There is a pilot program in Norway, being led by Thomas McGlashan, director of the Yale Psychiatric Institute, that is reportedly very successful. The key seems to be eliminating stigma. When stigma is reduced and people feel safe coming out, they get treated at the early onset of the illness, which greatly improves their outcomes. The destigmatization campaign includes the education of students, primary care physicians, and the general public.

The Norway experience shows us that when stigma is substantially eliminated and a supportive healthcare system is in place, the rights of people with mental illness are protected. When their rights are protected, people with mental illness can experience the full benefit of the progress that has been made in treatment without constraining their potential to contribute to our society.

Will the stereotypes of “psycho” and “crazy” ever totally go away? Probably not. But we can reduce the impact of stigma and bring people to life-restoring treatment. Everyone wins when people with mental illness are not just tolerated but appreciated for who they are as full participants in society.

— Lynn K. Jones, DSW, is a freelance writer and an executive coach and organizational consultant in Santa Barbara, CA. As a specialist in organizational culture, she supports leaders and organizations in developing mission-driven cultures.


Fight Stigma: Become a StigmaBuster!
The National Alliance of Mental Illness (NAMI) StigmaBusters is a group of dedicated advocates across the country and around the world that seeks to fight the inaccurate, hurtful representations of mental illness. Whether these images are found in TV, film, print, or other media, StigmaBusters speak out and challenge stereotypes in an effort to educate society about the reality of mental illness and the courageous struggles faced by consumers and families every day. The StigmaBusters' goal is to break down the barriers of ignorance, prejudice, or unfair discrimination by promoting education, understanding, and respect.

Each month, nearly 20,000 advocates receive the NAMI StigmaBusters Alert, and it is read by countless others around the world online and in mental health centers, hospitals, universities, and elsewhere. NAMI urges everyone to get involved: “Numbers do count, so let your voice be heard.”

By visiting www.nami.org, you can find out more about NAMI StigmaBusters and how you can report stigma, and sign up to receive NAMI’s StigmaBuster Alerts.

“In Our Own Voice: Living With Mental Illness” is a recovery, education presentation given by trained consumer presenters for other consumers, family members, friends, professionals, students of all academic levels, and lay audiences.

The brief, yet comprehensive interactive presentation about mental illness—including video, personal testimony, and discussion—enriches the audience’s understanding of how people with these serious disorders cope with the reality of their illnesses while recovering and reclaiming productive lives.

“In Our Own Voice: Living With Mental Illness” was developed to provide a dialogue on the issues related to recovery from severe mental illnesses. The program is designed to provide a safe place for consumers to share the ups and downs of their recovery and learn from others. A trained consumer presenter leads the discussion. The program educates everyone about the ongoing recovery issues we face and the fulfilling lives that can be achieved.

Consumers that have participated in the program say, “We give hope, we educate, we open minds, and we change attitudes. We help eradicate the stigma surrounding mental illness.”

NAMI reports that research studies have shown that “In Our Own Voice” works and that there is a significant decrease in stigma against mental illness among audience members after seeing the presentation.

Find out more about bringing the “In Our Own Voice: Living With Mental Illness” program to your community at www.nami.org.

— LKJ