The ADS Center produces a semi-annual memorandum which spotlights campaigns and includes articles from those fighting discrimination and stigma, and those experiencing it.

DATE: Spring 2003

TO: Colleagues

FROM: Resource Center to Address Discrimination and Stigma Associated with Mental Illness

SUBJECT: Informational update addressing discrimination and stigma associated with mental illness

This is the first in a series of informational updates that you will be receiving twice a year from the Resource Center to Address Discrimination and Stigma (ADS Center).

The ADS Center is a program of the U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services. The ADS Center helps people design, implement and operate programs that reduce discrimination and stigma associated with mental illnesses.

The informational update will include:

• Spotlight on . . . local, statewide, national and/or international anti-discrimination/anti-stigma campaigns.
• Research . . . reports of research and related anti-discrimination/anti-stigma initiatives.
• In my opinion . . . an expert opinion on a prominent issue in the mental health arena.
• In my experience . . . a firsthand experience of the discrimination and stigma associated with mental illnesses.

To receive this memorandum or future memoranda by e-mail, please e-mail us at promoteacceptance@samhsa.hhs.gov.

Who we are...

The Resource Center to Address Discrimination and Stigma Associated with Mental Illness (ADS Center) was born out of a need to assist individuals, the public, state and local governments, and private and non-profit organizations in the design, implementation and operation of programs to reduce discrimination and stigma associated with mental illnesses.

The goal of the ADS Center, which is a project of the Center for Mental Health Services (CMHS) of the Substance Abuse and Mental Health Services Administration (SAMHSA), is to enhance mental health consumer independence and community participation by ensuring that people have the information they need to develop successful efforts to counter discrimination and stigma.

The ADS Center provides useful resources and information about effective approaches for people or organizations interested in countering discrimination and stigma; offers updates on research on discrimination and stigma - including researching regarding the public's attitudes about, and behaviors toward, people with mental illnesses - that has been published or that is underway; offers information about available publications, events, and issues of relevance regarding discrimination and stigma; connects people with guest speakers who can make presentations on discrimination and stigma; provides a comprehensive bibliography of literature addressing discrimination and stigma; and offers technical assistance and trainings to help people create their own anti-discrimination/anti-stigma initiatives, or information to help them connect with effective campaigns and programs that already exist.

The ADS Center is one of two CMHS projects that directly address discrimination and stigma. The second is the Elimination of Barriers Initiative (EBI), which is working with States and other stakeholders to develop and test models and public education materials - including radio, television, and print public service announcements (PSAs) - in eight pilot States around the country. Upon completion of the evaluation, CMHS will distribute the resulting evidence-based public education practices and materials to States and communities across the nation. (See also Page 9.)

At the EBI National-State Partnership Committee Kick-off Meeting on January 23 and 24, 2003, SAMHSA administration Charles Curie said: "Stigma leads to discrimination: it promotes divisiveness and barriers - both visible and invisible - that stand between an individual and the freedom of opportunity on which this nation was founded. It's time, once and for all, to tear down those barriers. It's a matter of civil rights; it's a matter of human rights; it's a matter of doing what is right."

While one in five Americans lives with a mental disorder in any given year, half of those with serious mental illnesses received no treatment in the past 12 months (America's Mental Health Survey, National Mental Health Association, 2001). Fear of disclosure, rejection by friends, and discrimination are among the reasons why people with mental illnesses tend to stay silent.

All of the Center's information will be available through its Web site, which is scheduled to be launched soon, and via a toll-free number (800-540-0320) with bilingual (English/Spanish) staff on hand from 9 a.m. to 5 p.m. Eastern Time, Monday through Friday, to answer any questions.

The ADS Center is a program of the U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services.

Spotlight on...

Pennsylvania:

Anti-discrimination campaign reaches community leaders

"OpenMindsOpenDoors is a Pennsylvania initiative aimed at ending discrimination against people who have mental illnesses. The campaign seeks to educate people about mental illnesses; to foster tolerance among peers, employers, educators, communities, and families; and to advocate for the legal rights of people living with psychiatric disabilities." - OpenMindsOpenDoors (OMOD)

Situation: In February 2002, the Mental Health Association in Pennsylvania, with funding from the Pennsylvania Department of Public Welfare, along with 12 stakeholder groups set out to reach leading decision makers across the state of Pennsylvania to kick off an anti-discrimination campaign (www.openmindsopendoors.com) and discuss the causes and effects of discrimination against persons with mental illnesses.

Solution: During Mental Health Month (May), the campaign reached into six Pennsylvania towns to conduct Leader Forums. The forums, similar to Town Hall meetings, were used to gather information from leading educators, employers, religious leaders, and local politicians. (In addition, some media attended and voiced their opinions.) Leader forums were billed as small informal gatherings. A series of questions, backed by facts, were presented to attendees for their input. One month after the event all attendees were surveyed on their experience.

Results: The Leader Forums reached 300 leaders and decision makers across the state, with the majority of attendees representing local employers - a bonus, since the campaign's next plan was to target this audience with an Employer Guide focused on discrimination in the workplace. Top companies signed on to help the campaign - and to bring it to their own employees. A typical survey comment: "The meeting increased my awareness and provided me with more insight, to be more attuned to situations in my workplace." One hundred percent of those surveyed stated they were more aware of mental health issues as a result of the forums; 94 percent stated they had a discussion with someone regarding what they learned; 35 percent were prompted to have a discussion with someone they knew who had/has a mental illness; and 17 percent inquired about their employer's mental health insurance policy.

In addition, thanks to the Pennsylvania Community Providers Association, 155 employers who are also mental health service providers across Pennsylvania received the OMOD Employer Guide. All are being asked if have implemented the suggestions provided in the guide. Feedback has been positive. For example, Lourdesmont/Good Shepherd Youth and Family Services said, "This brochure is a godsend for us! It turned us in a new direction and came at just the right time."

A copy of the Leader Forum packet, which provides step-by-step instructions on leading your own meeting, is available by contacting OMOD (http://www.openmindsopendoors.com), 1414 N. Cameron Street, 2nd Floor, Harrisburg, PA 17101, at [promoteacceptance@samhsa.hhs.gov] or 717-346-0549 or 866-578-3659.

Spotlight on...

National Mental Health Awareness Campaign reaches teens

The National Mental Health Awareness Campaign (NMHAC) was formed to fight the discrimination and stigma associated with mental illnesses and urge Americans to seek appropriate mental health care. NMHAC has as its primary goal the development of a nationwide, public service, multi-media education initiative. The organization creates public service ads targeting three distinct groups - youth, adults and seniors.

Situation: According to the Substance Abuse and Mental Health Services Administration, "[s]tudies show that, at any given time, at least one in five children and adolescents may have a mental health problem. At least 1 in 10 - or as many as 6 million young people - may have a serious emotional disturbance."

Solution: The NMHAC youth campaign, called "Change Your Mind," was launched with MTV Music Television in June 2000 and is ongoing. The campaign consists of: (1) a song by the rock group Sister Hazel http://www.nostigma.org/sisterhazel.html; (2) the "Change Your Mind" brochure, subtitled "A Get Help Guide for Teens and Young Adults," which includes information about triggers and signs of mental health problems, as well as stories of teenagers who experienced such problems as panic attacks, eating disorders, and depression http://www.nostigma.org/info1.html; (3) the MTV Youth Campaign Public Service Announcements (PSAs) http://www.nostigma.org/youth.html; and (4) PSAs that run on Channel One in 12,000 high schools and middle schools across the U.S. http://www.nostigma.org/channelone.html.

Results: NMHAC reports that, through its MTV "Change Your Mind" spots and other outreach efforts, the youth campaign has drawn more than 15.7 million hits on the NMHAC site. MTV created and produced NMHAC's public service announcements, which have been aired on MTV, VH1, ESPN, ABC, CHANNEL ONE, FOX and many other networks.

During last year's Mental Health Month (May), the NMHAC ran its advertisements in CosmoGirl, Teen Magazine, and Teen People. NMHAC appeared on the Rosie O'Donnell Show to highlight the campaign's youth outreach initiative. Also, NMHAC board member Nancy Rubin wrote a letter to Dear Abby urging Americans to work together to break the stigma associated with mental illness. The letter was published in thousands of newspapers across the country, reaching an estimated 95 million people.

Contact Information: http://www.nostigma.org/; National Mental Health Awareness Campaign, 1350 Connecticut Avenue, Suite 900, Washington, DC 20035; Phone: 202-207-1335, E-mail: info@nostigma.org

Spotlight on...

Promoting accurate images of people with mental illnesses

SANE StigmaWatch is an Internet-based program to promote accurate, respectful and positive reporting of mental illnesses in Australia. It does this through monitoring, correcting and logging media misrepresentation of mental illnesses. It also acknowledges accurate and balanced reporting.

Situation: The media often disseminates offensive images of people who have mental illnesses, and studies have shown that the general public is greatly influenced by such images.

Solution: StigmaWatch, an initiative of SANE Australia, the national mental health charity, monitors the Australian media to ensure accurate and respectful representation of mental illnesses. Incidents of unacceptable reporting or advertising are logged on the SANE Web site after being verified, together with responses from those responsible.

Results: StigmaWatch responded to 44 reports in 2001, taking action against television and radio programs, newspapers, magazines, advertisements and Web sites.

The campaign against the "From gentle to mental" promotion for the movie Me, Myself and Irene, which was widely reported in the media, resulted in Twentieth Century Fox's changing its promotion for the home video version in Australia. Other notable successes were the removal of references to mental illness from the new Sony PlayStation game Twisted Metal: Black, and the amendment of an advertising campaign by Unilever Australasia for Sunsilk Highlights hair products. Many complaints were also pursued about inaccurate use of the term "schizophrenic" to mean "split personality." The majority of journalists, editors and others who were approached responded positively, accepting the reason for the complaint and giving an assurance that they would be more thoughtful in the future.

StigmaWatch won a Gold Achievement Award at the Australian New Zealand Mental Health Services Conference in 2001.

Contact information: html http://www.sane.org/ (then click on StigmaWatch). SANE StigmaWatch, P.O. Box 226, S. Melbourne VIC 3205, Australia; Phone: +61-3-9682-5933; E-mail: info@sane.org.

Research

Thirty years after Eagleton controversy, mental health stigma still haunts political arena

Thirty years after Democrats replaced Vice Presidential nominee Thomas Eagleton because of concerns about his mental health, the stigma surrounding depression and other mood disorders still poses a substantial obstacle for many people who would seek public office, according to a recent national survey. This obstacle remains despite the tremendous gains that have been made in the treatment of such illnesses.

A survey of 1,200 U.S. adults by the Depression and Bipolar Support Alliance (DBSA) http://www.ndmda.org/ revealed that, in a race for national office where all other factors were equal, nearly one in four (24 percent) would vote against a candidate who had been diagnosed with clinical depression, while another 24 percent said they "might not" vote for that candidate. It also found that nearly one in three (31 percent) believe that people with mood disorders are not stable enough to hold positions of authority in fields like law enforcement and government, while half (51 percent) feel that people should publicly disclose such diagnoses if they seek office.

"Just as Thomas Eagleton encountered stigma surrounding mental health in 1972, stigma persists today," said DBSA Executive Director Lydia Lewis, referring to the former Missouri Senator who was tapped for the number two spot on the 1972 Democratic ticket. Eagleton was then promptly replaced following news reports that he had twice undergone electroconvulsive therapy (ECT).

Too often, she said, stigma punishes people who seek help, and it discourages people from seeking treatment who could be helped. More than 20 million Americans currently live with depression, while another 2.5 million live with bipolar disorder. Lewis said evidence indicates several U.S. Presidents have lived with such conditions, including Abraham Lincoln, Franklin D. Roosevelt, and Lyndon Johnson.

Lewis noted that Eagleton continued to serve with distinction in the Senate for another 14 years after the incident, and his service included a seat on the Senate Select Committee on Intelligence, where he was trusted with some of the nation's most sensitive security matters.

"Instead of helping to perpetuate stigma, our political leaders should be leading the efforts to eliminate it," Lewis said. "They are just as vulnerable to mood disorders - and to stigma - as anyone. When stigma enters the political arena, everyone loses."

For the DBSA survey, communications consulting firm Lipman Hearne conducted 1,200 interviews, balanced to reflect U.S. Census figures for geography, gender, age (18 and over) and ethnic background. Fifty-two percent said they would vote for a candidate for national office who had once been diagnosed for depression. Women (56 percent) were more likely than men (49 percent) to vote for such a candidate.

DBSA (previously known as National Depressive and Manic Depressive Association) is the nation's largest consumer-directed organization that provides help and information on depression, bipolar disorder and other mood disorders. Founded in 1986 and based in Chicago, it has a grassroots network of more than a thousand consumer-run support groups that hold regular meetings across the United States and Canada. Over a million people request assistance from DBSA each year.

Chicago Consortium for Stigma Research studies stigma on a variety of fronts

The Chicago Consortium for Stigma Research (CCSR) (www.stigmaresearch.org), funded in part by a grant from the National Institute of Mental Health, is dedicated toward understanding the phenomenon of stigma, developing and testing models that explain why it occurs, and evaluating strategies that help to diminish its effects. Patrick Corrigan of the University of Chicago Center for Psychiatric Rehabilitation is the Consortium's principal investigator. Dr. Corrigan is a member of the ADS Center Steering Committee.

Current research projects include:

The Paradox of Self-stigma and Mental Illness
Self-stigma is defined as lowered self-esteem and diminished self-efficacy that result from internalizing stereotypes about mental illness. However, the personal reaction to stigma is a fairly complex experience best understood as a paradox. Instead of self-stigmatizing, some people respond with righteous anger, and some are indifferent to the experience. The purpose of this study is to better understand self-stigma and the model of paradox. The study consists of two phases. In phase one, a measure of self-stigma in people with serious psychiatric disability will be developed and evaluated. Test items will reflect the three components of self-stigma: awareness of the stereotype, stereotype self-concurrence, and self-concurrence esteem reduction. In the second phase, effects of perceived legitimacy and in-group identification on self-stigma will be assessed. A measure of righteous anger will also be collected. The study is important in providing a first step in designing strategies for helping people cope with self-stigma. This project is funded by the National Institute of Mental Health.

TRIAD State Media and Public Policy Discrimination Assessment
CCSR will be working with NAMI's TRIAD (Treatment/Recovery Information and Advoacy Database) project to assess 1) newspaper portrayals of mental illness in each state; and 2) legislation and administrative codes relevant to consumers in each state. Specifically, a report will be generated for each state concerning stigmatizing and discriminatory legislation and media coverage; and national reports will discuss trends and regional variations in stigmatizing and discriminatory media coverage of mental illness and public policy that impacts upon consumers and family members.

Structure and Function of Mental Illness Stigma
This study examines the structure and function of mental illness stigma. The researchers have collected and developed a pool of statements that relate to attitudes about people with mental illness. The theoretical literature has been used to develop statements the researchers believe to be related to different aspects of mental health stigma. The researchers will sort the items into categories that, according to Erving Goffman http://people.brandeis.edu/~teuber/goffmanbio.html, people use to organize their perceptions of others. Those categories are "biography" (i.e., who people are) and "social role" (i.e., what people do). The researchers will use empirical methods to examine the structure of these groups of statements and then try to relate the dimensions of structure and function to different motivations people have to stigmatize.

Affecting Policy Decisions: Two strategies for challenging mental illness stigma
The purpose of this study is to examine the effect of different stigma change strategies on attitudes about mental illness and allocation preferences. Some groups have argued that highlighting instances of violence committed by persons with untreated mental illness will increase the public's willingness to support resource allocation for mental health services. To examine the effectiveness and implications of such strategies, the researchers will randomly assign 150 community college students to either one of two experimental interventions or a control condition. The experimental interventions will involve either a presentation related to incidents of violence committed by persons with mental illness or information related to causes and treatments for mental illness. The researchers will examine the effect of the different strategies on mental illness stigma and resource allocation preferences for different types of mental health services.

The Westside Mental Health Stigma Education Project
Research has clearly shown that the course of serious mental illness and other brain disorders can be greatly improved through appropriate psychopharmacology and psychiatric rehabilitation. Unfortunately, as noted in a 2001 report of the U.S. Surgeon General, people of color do not use the full range of psychiatric services. One reason why African Americans do not avail themselves of mental health services is to avoid the stigma of mental illness. Education programs have been shown to change public attitudes about stigma. However, these programs have typically been developed for European American communities. The purpose of this project is to design and implement an education program for the African American community residing on the West Side of Chicago. The project targets stigma as a barrier to receiving services for mental health problems. Funding for this project has been provided by the Boeing Foundation.

People with Schizophrenia as Targets of Projection
The purpose of this study is to further explore how being labeled as "mentally ill" affects the social interactions of people with schizophrenia. The primary hypothesis guiding the proposed research is that people with schizophrenia are especially likely to serve as "projection screens" for other people. That is, people with schizophrenia might not just run the risk of being labeled in terms of specific stereotypic traits; in addition, their behavior might be prone to being interpreted in terms of any idiosyncratic unfavorable trait that a given observer can readily imagine.

CMHS Funds Project to Help States Reduce Discrimination and Stigma

ROCKVILLE, MD. - The Center for Mental Health Services (CMHS) of the Substance Abuse and Mental Health Services Administration, Department of Health and Human Services, has contracted with The Gallup Organization to develop the Elimination of Barriers Initiative (EBI), which CMHS expects will foster comprehensive community support systems by reducing discrimination and stigma. This effort will involve developing public education approaches to overcome barriers to treatment and community participation for people with psychiatric disabilities.

According to a CMHS statement, "The overarching goal of the Elimination of Barriers Initiative (EBI) is to assist State mental health systems in reducing discrimination and stigma by: (1) providing technical assistance and communication skills development, (2) providing nationally developed educational resource materials, and (3) evaluating State stigma reduction efforts to inform national public education efforts. The findings will be translated and be available for national dissemination." Public education initiatives may take the form of mass media print articles, public service announcements on radio or television, print advertisements, or posters, for example.

The EBI is focusing on improving State social marketing/communications capacity by providing assistance initially to eight States: California, Florida, Massachusetts, North Carolina, Ohio, Pennsylvania, Texas, and Wisconsin. This assistance may take the form of on-call/on-site consultation services, an electronic mailing list, Internet Web site information, bi-monthly conference calls, technical assistance materials, training institutes, workshops, and video conferencing. Over a three-year period, the EBI will develop and test models and public education materials in the eight pilot States. Upon completion of the evaluation, CMHS will distribute the resulting evidence-based public education practices and materials to States and communities across the nation.

The Gallup Organization is partnering with Vanguard Communications, a Washington, D.C., consulting firm that develops and implements advocacy campaigns, to take the lead on this project. The ADS Center will act as a key resource. ADS Center staff and consultants, who variously have years of experience as mental health advocates, policy analysts, researchers, service providers, and consumers of mental health services, will contribute their expertise in regard to mental health/mental illness issues. In addition, the ADS Center will host a Web site that will capture technical assistance requests and serve as an information resource center on combating stigma and discrimination for the States.

On January 23-24, 2003, in Washington, D.C., the EBI National-State Partnership Committee (NSPC) Kick-off Meeting convened representatives from high-level State public mental health authorities, consumer groups, provider organizations, other Federal agencies, major foundations, and technical experts. The gathering of feedback at the meeting serves two overarching purposes. First, CMHS seeks to ensure that the EBI's messages and public education materials reflect input from as many voices in the mental health community as possible. Second, the program's efficacy will be directly tied to support from a wide spectrum of stakeholders at the national level and in the targeted States.

A series of State Partnership meetings, one in each of the eight EBI States, will begin with a meeting in Wisconsin in May. The goal of these meetings is to introduce the EBI to the mental health stakeholders (including consumers/survivors, families, providers, advocates, administrators, professionals, and others) in each State, as well as to gather input from the community on combating discrimination and stigma.

In my opinion ...

Is "stigma" the right word?

By Otto F. Wahl, Ph.D., Clinical Psychologist and Professor of Psychology, George Mason University, Fairfax, Va.

"Stigma" is a term that has long been used to refer to a mark or label that leads to a person being discredited and devalued in the eyes of his or her community. Work by social scientists has established that "mental illness" is such a label. It is well established that people diagnosed with psychiatric disorders face negative attitudes and poor treatment by others. Whether to continue to refer to this phenomenon as "stigma," however, has become a subject of considerable debate recently.

Some people have expressed concern that the term itself may be stigmatizing. Repeated use of the term "stigma" in conjunction with "mental illness," it has been noted, may establish stigma as an element of mental illness - as inevitable and intrinsic to psychiatric conditions. The pervasive verbal attachment of "stigma" to "mental illness" thus parallels and reinforces the social attachment of stigma to psychiatric disorders. Moreover, when the term "stigma" is so rarely applied to health conditions other than mental illnesses, such usage may also reinforce a damaging perception of mental illnesses as wholly different, and less acceptable, than those other conditions.

In addition, some uses of the term "stigma" seem to imply that "mental illness stigma" resides within the individual rather than having been imposed unfairly by society. Dictionary definitions, which often fail to note external imposition (e.g., Webster's "a mark of disgrace or infamy, a stain or reproach, as on one's reputation"), support the concern that stigma may be seen as a flaw of the individual. Even Erving Goffman's scholarly attempt at defining stigma - "an attribute that is thoroughly discrediting" - carries with it the implication that stigma is a trait, a characteristic intrinsic to the individual.

A legitimate concern, then, is that repetition of the term "stigma" in connection with "mental illness," with the implication that stigma is a property of the mental illness, may perpetuate a perception of people with mental illnesses as lesser, fundamentally flawed, citizens.

A related concern is that the term "stigma" does not direct blame for the disenfranchised status of those with psychiatric diagnoses where it belongs and does not call for social change in the same way as do terms such as "prejudice" and "discrimination." Prejudice is something that is recognized as wrong and unacceptable. When this term is used, people understand that the fault is with others, not with the target of the prejudice. The term "stigma" does not carry this message as clearly. Since unfair and unfounded negative attitudes toward a group of people based on stereotypes and misunderstanding are what we are talking about with mental illnesses, prejudice is both an appropriate term and one that directs people toward consideration of their own biased views.

Similar arguments have been presented for using the term "discrimination" rather than "stigma." Discrimination is easily recognized as both unacceptable and the fault of its perpetrators rather than its targets. Moreover, some believe that it is public actions - more than the beliefs or misunderstandings that may underlie them - that need to be the focus of change efforts. They suggest that it is denied opportunities, not negative public attitudes, that create the greatest barriers to meaningful recovery from mental illnesses.

In addition, discrimination can be attacked with legislation and litigation to compel changed behavior. Stigma cannot be similarly prohibited by law. Furthermore, use of discrimination terminology allows one to frame the issue in terms of rights rather than desires. It is not simply a matter of people with mental illnesses wanting and requesting respectful treatment, but of people claiming their legal and civil rights.

As sensible as the above arguments are, however, it is my own opinion that we should not abandon the term "stigma" in favor of "prejudice" and/or "discrimination." My reasons are as follows:

First, the term "stigma" has a historical context that should not be forgotten. The term comes from the practices of the ancient Greeks who branded their slaves with a visible physical mark, a stigma, to be sure that others knew at a glance that the marked person was not entitled to the same privileges as other citizens. Thus, the Greek word "stigma" does convey the imposition of a disenfranchising mark, one we would clearly recognize today was unfairly imposed and not relevant to the human worth and dignity of those to whom it was applied. The term represents the subjugation of worthy people by those in power and the arbitrary assumption of inferiority based upon an assigned marker. Rather than conveying that the problem is within the individual, then, the term "stigma" should remind us how imposed markers can be unjustly used to deny social and community status.

I also believe that stigma is a broader concept than discrimination or prejudice and that the latter terms cannot capture all that we should be considering. Stigma involves not just negative emotional biases toward those with mental illnesses (prejudice), but also language and images that foster misunderstanding and devaluation even when communicators do not see their messages as relevant to mental illnesses. Stigma, in my view, involves not only behavior that denies rightful opportunities (discrimination), but also quite legal behavior that nevertheless hurts and offends and demoralizes. Moreover, the broad category of stigma may encompass the internalized attitudes that people with mental illnesses sometimes adopt from society about themselves and that may lead to self-fulfilling prophecies of demoralization and failure.

I also think that using the term "stigma" may help others to acknowledge their contributions to the problem and to change their behaviors. While the terms "prejudice" and "discrimination" have the advantage of placing the onus on those who display them, they are also harsh terms that may generate more defensiveness than understanding when they are used. People may be able to accept that they contribute in some ways to stigma, especially when that contribution is inadvertent, but they may resist the accusation that they show prejudice and discriminate against those who need their understanding and support.

Finally, the term "stigma" has a research history. The negative attitudes and behaviors of the public toward people with mental illnesses have been studied extensively, and access to that research (e.g., through computerized databases) would most efficiently be accomplished by use of the keyword "stigma." Similarly, current and future work on these issues can most effectively be tied to the previous work on which they build by referencing "stigma" in their texts or titles. While this is a minor consideration relative to the impact of terminology on removing or perpetuating public misunderstanding, it is nevertheless one of modest practical significance.

Given all of the above, my preference is to continue using the term "stigma," but, at the same time, to connect that term more frequently and more deliberately with the terms "prejudice" and "discrimination," as others have suggested. In my own work, I will endeavor to include more use of the latter terms to encourage thinking in terms of rights and imposition.

My mind is not set on this matter, however, and I believe it is important that we continue to discuss the issues of language and its impact. I readily acknowledge that words have power and that we must be careful to avoid terminology that misleads or undermines our own intentions. However, I also believe that it is important for us not to devote so much of our attention and energy to questions of terminology that we neglect the larger issues to which such terminology refers. Although words are important, it is more important that, whatever words we decide to use, we manage to join together to overcome the ignorance, misunderstanding, prejudice, discrimination, and self-stigma that undermine recovery of people with mental illnesses.

Dr. Otto F. Wahl is a prominent researcher and advocate who has published and lectured extensively on the subject of stigma. He is the author of two books: "Media Madness: Public Images of Mental Illness," winner of the 1996 Gustavus Myers Award for an Outstanding Book on Human Rights in North America, and "Telling Is Risky Business: Mental Health Consumers Confront Stigma."

In our experience

Mental health jargon contributes to discrimination

(This article was excerpted and adapted, with the authors' permission, from "Identifying and Overcoming Mentalism," by Coni Kalinowski, M.D., a psychiatric consultant, and Pat Risser, past president, National Association for Rights Protection and Advocacy. Dr. Kalinowski is CEO of InforMed Health Publishing & Training, whose mission is to provide accurate information about psychotropic medications. Pat Risser is a former recipient of mental health services as well as a service provider.)

To truly address the issue of prejudice in the mental health system and have an impact on the system's participation in discrimination, it is necessary to look at the attitudes and assumptions underlying mental health jargon.

The language that has become politically charged in the mental health arena includes terms that communicate condescension, blame, and the perception of labeled people as defective. Many offensive terms are obvious: basket case, loony tune, etc. The offensive aspects of seemingly professional terminology are often more subtle. How these terms are used from an interpersonal or systemic standpoint is generally more important than their overt meaning.

Interestingly, mental health professionals often object that they "need" these words to communicate psychiatric concepts. Yet most of the offensive terminology is non-medical and non-specific, and could easily be expressed in a more accurate, less offensive manner.

A good example is the term "decompensate," which is used colloquially to indicate that a person is having more distress. It does not refer to a specific clinical finding, spectrum of symptoms, or event, so that the clinician who is referred a person who "decompensated" knows nothing about the person's needs or history. The term is generally used to designate someone who is defective and fragile, who cannot take care of him- or herself, and who cannot tolerate stress and therefore falls apart. "Decompensating" is an us-them term: under stress "we" may not do well; "we" may cocoon, take to bed, get bummed out, get burned out, get a short fuse, throw plates, scream, call in sick, or need a leave of absence. "They" decompensate. Occasionally, the term is used with an overtone of superiority that is clearly intended to convey the power difference between the "competent professional" and the "sick client."

Both activists and clinicians have suggested that people abandon this term in favor of describing, briefly but accurately, what the person is experiencing. For example, "After the break-up with her girlfriend, Mary couldn't sleep. She started pacing at night and complained of hearing voices." This brief statement factually describes Mary's experience and gives meaningful information that begins to suggest interventions that may be helpful. . . .

It can be illuminating to ask oneself why one continues to use a term that offends and stigmatizes the people one aspires to help. If we lack the empathy that would motivate us to change our language to avoid hurting the people we serve, what does that say about our integrity as healers?

Respectful clinical language should focus both the clinician and the recipient on the search for the most successful tools for health and recovery. If a diagnosis helps a person to understand her/his experiences and gain control over her/his life, it is a useful tool. If it stigmatizes, communicates contempt, and excludes the person from services, it is a weapon. Respectful clinical language is not a misrepresentation or under-estimation of a person's difficulties and experiences. It should be precise, factual, and complete. It should also communicate the perspective of the person receiving services, including his/her values, interests, and priorities. . . .

A good rule of thumb to use in addressing discrimination in language is to ask yourself if you would use the same language when speaking directly to the person or if you would feel comfortable having the person read what has been written in the chart. Other useful questions include: Would I want to be talked about in this manner? Would I talk about my friends and colleagues in this manner? Does this language help the person and the clinician to find solutions to problems and create positive change? Any "No" answers, no matter how seemingly justifiable, indicate that something is wrong.

Content in the InfoUpdate is current at the date of publication. Content and technology may change after the time of publication and affect the information presented here. If you are trying to locate a specific resource or research article, please contact the ADS Center directly.