Challenging the Stigma of Mental Illness E-Book

Patrick W. Corrigan

• Herausgeber: John Wiley & Sons
• Kategorie: Fachliteratur
• Sprache: Englisch

Seitenzahl: 425

Veröffentlichungsjahr: 2011

Beschreibung

Challenging the Stigma of Mental Illness offers practical strategies for addressing the harmful effects of stigma attached to mental illness. It considers both major forms of stigma: public stigma, which is prejudice and discrimination endorsed by the general population; and self-stigma, the loss of self-esteem and efficacy that occurs when an individual internalizes prejudice and discrimination. * Invaluable guide for professionals and volunteers working in any capacity to challenge discrimination against mental illness * Contains practical worksheets and intervention guidelines to facilitate the implementation of specific anti-stigma approaches * Authors are highly experienced and respected experts in the field of mental illness stigma research

Leseprobe

Contents

Cover

Challenging the Stigma of Mental Illness

Title Page

Copyright

Dedication

About the Authors

Foreword

Preface

Stigma Change is Targeted and Local

Don't Call Me Nuts! Coping with the Stigma of Mental Illness

For Whom is this Book Written?

Acknowledgments

Chapter 1: Stigma is Personal

Some Personal Stories

Why the Stigma of Mental Illness

Stigma and the Media

Where to Begin Stigma Change

Back to the Personal Story

Chapter 2: Understanding and Measuring Stigma

The Scope of the Problem

Concepts for Understanding Stigma

Where do We Learn Stigma?

Signals That Lead to Stigma

Putting it All Together

Suggestions for Challenging Mental Health Stigma

Stigma and World Diversity

Assessing Stigma

Summary

Chapter 3: Challenging the Public Stigma of Mental Illness

The Impact of Mental Illness Stigma on Society

What is the Reader's Role in Changing Society?

Strategy I. Provide Contact with Persons with Mental Illness

Strategy II. Changing Stigma through Education

Strategy III. Protest Discriminatory Practices

Chapter 4: Addressing Self-Stigma and Fostering Empowerment

How does Self-Stigma Come About?

What is the Impact of Self-Stigma?

What Determines Whether and How Self-Stigma will Develop?

Self-Stigma Assessment

Ways to Cope and Overcome Self-Stigma

Becoming the Protagonist of Your Self-Constructed Narrative

Fostering Personal Empowerment

Assessing Personal Empowerment

Six Ways to Foster Empowerment

Chapter 5: Addressing Structural Stigma

Legal Remedies

What is a Psychiatric Disability Under Laws Like the DDA/ADA?

Disclosure of Disability

Laws Like the DDA/ADA Do Not Promote “Affirmative Action”

Reasonable Accommodation on the Job

On-The-Job Conduct and Direct Threat

What to do if a DDA/ADA Violation Occurs

Effective Strategies for Lobbying Face-to-Face

Getting Started on Fighting Discrimination

Chapter 6: Stigma as Social Injustice

Eliminating the Symptoms Does not Erase the Stigma

Presenting Mental Illness as a Brain Disorder Has Its Limitations

Protest Has Rebound Effects on Attitudes

Parity Not Pity

Implications of a Social Justice Perspective

What About the Stigmatizer?

We Have Only Started to Understand the Problem

References

Learn More About It: Resources and Chapter References

1 Agencies and Anti-Stigma Groups

2 Empowerment and Advocacy Groups

3 Self-Help and Psychiatric Survivors Organizations

Index

Challenging the Stigma of Mental Illness

“This book starts with a personal approach to stigma – especially its horrendous consequences for individuals and families – and ends with the important pronouncement that stigma is an example of social injustice. Along the way, it provides conceptually driven yet highly practical and useable strategies for combating stigma at multiple levels. An invaluable resource for anyone interested in countering the huge issue of mental illness stigma; bravo!”

—Stephen Hinshaw, Professor and Chair, Department of Psychology, University of California, USA

“This is a book for everyone – for our patients, healthcare professionals and the general public. The issues surrounding stigma are raised without underestimating complexity, while still making the concepts understandable. Challenging the Stigma of Mental Illness explores the promising pathways, as well as those that will have unintended consequences. It ends, as all books on this subject should, with a rallying call for parity for those with mental illness.”

—Til Wykes, Professor of Clinical Psychology and Rehabilitation, Institute of Psychiatry, King's College London, UK

This edition first published 2011

© 2011 John Wiley & Sons Ltd.

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Library of Congress Cataloging-in-Publication Data

Corrigan, Patrick W.

Challenging the stigma of mental illness : lessons for therapists and advocates / Patrick William Corrigan, David Roe, Hector W.H. Tsang.

p.; cm.

Includes bibliographical references and index.

ISBN 978-0-470-68360-6 (cloth)

1. Mental illness–Social aspects. 2. Mentally ill–Public opinion. 3. Stigma (Social psychology) I. Roe, David, 1966- II. Tsang, Hector W. H. III. Title.

[DNLM: 1. Mental Disorders–psychology. 2. Mental Disorders–therapy. 3. Attitude to Health. 4. Mentally Ill Persons. 5. Prejudice. 6. Social Perception. WM 140]

RC455.C66 2011

362.196089–dc22

2010035848

We dedicate this book to those fighting the good fight against stigma.

About the Authors

Patrick W. Corrigan is Professor and Associate Dean for Research at the Institute of Psychology, Illinois Institute of Technology in Chicago. Prior to that, Corrigan was Professor of Psychiatry and Executive Director of the University of Chicago Center for Psychiatric Rehabilitation for 14 years. Dr. Corrigan has spent most of his career working to provide and evaluate services for people with psychiatric disabilities and their families. Realizing that the effects of psychiatric rehabilitation are limited by mental illness stigma, he has spent the past decade broadening his research agenda to include the prejudice and discrimination of mental illness. His work has been supported by NIMH for much of this time to, among other things, develop and lead the Chicago Consortium for Stigma Research; he is its principal investigator. Recently, the Consortium evolved into a national collection of researchers with support from an NIMH developing center grant. The National Consortium includes colleagues from Yale, UPENN, and Rutgers. Corrigan has authored more than 250 journal articles and 10 books. He is also editor-in-chief of the American Journal of Psychiatric Rehabilitation.

David Roe is Associate Professor and Chair of the Department of Community Mental Health, Faculty of Social Welfare and Health Sciences, University of Haifa, Israel. His research focuses on the psychosocial processes of recovery from serious mental illness and the evaluation of psychiatric rehabilitation interventions and services. Dr. Roe's research has been funded by local and international sources, including NIMH, The Israeli Ministry of Health, The Israel National Institute for Health Services Research and Health Policy, the Israeli National Insurance Institution, and the Tauber and Rich foundations. Dr. Roe has published nearly 100 peer-reviewed journal articles and book chapters. He serves on the editorial board of the Psychiatric Rehabilitation Journal, American Journal of Psychiatric Rehabilitation, and the Israel Journal of Psychiatry and Related Sciences.

Hector W.H. Tsang is Professor and Program Director of the BSc(Hons) for Occupational Therapy at the Department of Rehabilitation Sciences, the Hong Kong Polytechnic University. His research interests focus on supported employment, social and independent living skills training, and stigma pertaining to people with psychiatric disabilities. His research on social skills in the workplace won the Best Cross-regional Case Study Award in 1996 at the XIVth International Conference on the Social Sciences and Medicine organized by the International Forum for Social Sciences in Health (IFSSH), Scotland, UK. Prof. Dr. Tsang has received research grants from various local and international funding bodies, including the Research Grants Council, Quality Education Fund, Health and Health Services Research Grants, and NIMH. In 2007, he spent a sabbatical at Yale focusing his research on neurocognition and schizophrenia. He has published more than 100 peer-reviewed journal articles and co-authored 15 books. Prof. Dr. Tsang is now serving as editorial member or reviewer for prestigious journals such as Schizophrenia Bulletin, Schizophrenia Research, Psychiatry Research, American Journal of Occupational Therapy, and American Journal Psychiatric Rehabilitation.

Foreword

It's satisfying that Corrigan, Roe, and Tsang understand that mental illness stigma should be reduced to the personal story. True, stigma cuts a wide swath on certain issues such as insurance parity, the bias of media reporting, and employment and housing discrimination. But Corrigan and colleagues understand that it is in the world of stories, down to the individual person, and to the individual event, that stigma comes into sharp focus.

In my personal experience, as a person with a schizoaffective disorder, broad issues tend to have less immediacy than a specific occurrence that happened to me personally. The conception of employment discrimination as an issue is one thing, but when I was fired from a data processing job because it was determined that, as a mentally ill person, I was untrustworthy and likely to hack the main-frame computer, that stung. These days, when I put a face on employment discrimination, this is the experience I use. In this book, the authors exhaustively chronicle the stories of individuals. The reader should read on for that alone.

That said, while this book is comprehensible by the nonprofessional, Corrigan and colleagues do not overlook the scientific studies that have underpinned the understanding of mental illness stigma. There is a substantial body of scientific literature on stigma, labeling, and discrimination. The authors have contributed much to these studies. I've had the opportunity to work with Pat Corrigan on some of his best studies on stigma reduction, that is, ways to ameliorate stigma in the general population. The authors present these in detail in this volume.

Otherwise, to understand Corrigan et al., look at their choice of language. They use powerful adjectives in condemnation of the phenomenon: venomous, poisonous, criminal, discriminatory. The authors are passionate about their work to reduce stigma in society; they recognize the pain and suffering for which stigma is responsible. Repeatedly, Corrigan, colleagues, and many in the anti-stigma movement refer to stigma as something of an animate object. It is the snake that spits venom; it is a criminal that robs people of their dignity. Thus stigma is looked upon as an enemy, an opponent, a villain out to rob people of their self-respect and make the lives of innocents, who never choose to have these no-fault disorders, miserable and wretched.

Are these proper attitudes to be taken by researchers? Is the research done by the authors subject to bias because of their priorities? By all means no! Most investigators in the field of medicine take on a disease or affliction with the bias of eradicating it. The only difference that lies in psychiatry is that the symptoms of the disorder are behavioral. For instance, a person with bipolar disorder spends too much money. A person with paranoid schizophrenia wears amulets around his neck to protect him from evil spirits who are chasing him. These are indeed symptoms of an underlying disorder but they are behavioral and not readily measured by a CAT scan or a blood test. Likewise, society's stigmatizing behaviors are the targets of Corrigan, Roe, and Tsang's attacks. Their mind-set is equally as valid as the attack mentality that other researchers have heaped upon HIV, tuberculosis, and polio.

This book will bring out the truth about mental illness stigma and the terrible effect that it has on people stigmatized by it. In co-writing Don't Call Me Nuts: Coping with the Stigma of Mental Illness (Recovery Press, 2000) with Pat Corrigan, I discovered how deep his expertise runs. In the last two decades, Corrigan and colleagues have done serious and voluminous research on mental illness stigma, and in the pages of this book a great deal of that expertise can be absorbed. I can't emphasize enough how, for many people with mental illness, in all countries and cultures, stigma is to blame for a great amount of their angst and suffering. A thorough examination of the topic is not only warranted, it is fundamental.

When Pat Corrigan asked me to write a foreword to a book on stigma for an international market, I had a moment's hesitation, primarily because I had been away from academia for five years. But then again, in that interim, as the consumer member on two different Assertive Community Treatment (ACT) teams, I have worked on dozens of real-life cases. I'm no longer in an ivy tower. I am learning a fascinating but heartbreaking education into the real stigmas facing people in America who must cope with chronic and severe mental illnesses. Their lot and mine are different but much the same. This book is written for us all.

Robert Lundin

Glen Ellyn, Illinois

Preface

The stigma of mental illness robs people of their rightful opportunities in work, relationships, housing, health care; all arenas in which a full life is achieved. Just as research has uncovered some best practices for helping people with serious mental illness1 overcome their disabilities, so there are similar “treatments” for erasing stigma, replacing it with affirming beliefs and actions. Interventions that promote stigma change are obviously different from what has been developed for the illness. Still, there is a collection of principles and practices that can stop the harmful effects of stigma, just like evidence-based skills manuals that help people live independently. Evidence is beginning to coalesce, suggesting strategies that are effective for challenging the public or self-stigma of mental illness. The distinction between public, self, and structural forms of stigma is key to the organization of the book and discussed more fully in Chapter 2. Briefly, public stigma is the harmful effect that occurs when the general population endorses prejudice and subsequently discriminates against people with mental illness. Self-stigma occurs when people internalize the stigma and beat themselves up with. Structural stigmas are the social forces that emerge after many years of public stigma.

Advocates of all stripes have come to understand the harmful impact of stigma over the past decade and have joined together to challenge it. Since 1996, the World Psychiatric Association has been a leader in developing anti-stigma programs with its Open the Doors program. Professional groups of psychiatrists adopted the WPA model with programs emerging in more than 30 countries. More recently, the World Health Organization convened a 2005 meeting in Helsinki solely on the issue of stigma and discrimination against people with mental illness. Individual countries have also recognized the call for change and provided significant resources for broad anti-stigma programs. In 2000, Australia launched beyondblue, a grass-roots program meant to increase public understanding about such disorders as depression, anxiety, and substance abuse. Other countries have only jumped into the fray in the past year or so: New Zealand's Like Minds, Like Mine; Britain's Time to Change; Canada's Opening Minds; and the US' What a Difference a Friend Makes. Of many benefits, common to all of these are websites where the interested viewer might learn more about mental illness and obtain more and personal help.

One of the most interesting, and perhaps unintentional, anti-stigma efforts occurred in Japan. In 2002, the Japanese Society of Psychiatry and Neurology replaced the standard term for mental illness “Seishin-Bunretsu-Byo” (Mind-Split Disease) with “Togo-Shitcho-Sho” (Integration Disorder). They reasoned that, among other things, public stigma of mental illness would decrease with a more disorder-sensitive term.

Many of the national anti-stigma programs mentioned in the preceding paragraphs are society-wide, adopting media-based approaches to changing the message. Experts call this social marketing and frequently include public service announcements (PSAs), support materials, and online guidance, all for the general population. These provide factual information about mental illness and witness to first-person testimonies, life stories by real people with mental illness and their experiences with recovery. PSAs and related campaigns have benefits and limitations. They offer a venue to disseminate a message to the largest possible group of people. For example, the program in London logged more than 100,000 hits on its webpage in the month after Time to Change was rolled out. The US Substance Abuse and Mental Health Association, sponsors of What a Difference a Friend Makes, found an exponentially higher hit rate. PSAs often have dramatic voice that motivates the masses. “Singing to the choir” is one effect of social marketing campaigns. PSAs have little effect on people who are of unaware of problems due to stigma: “Not me! I don't discriminate against the mentally ill.” Instead, PSAs sing to the choir; they are a clarion call to socially active people who are already sensitive to issues of prejudice and discrimination on any minority group. These calls organize people who, for example, are already mindful of social ills like racial injustice, teaching this motivated group that mental illness stigma is also an issue of prejudice and discrimination. In this light, PSAs provide direction for nascent advocacy groups to challenge stigma and spread affirming messages.

Stigma Change is Targeted and Local

Alternatives to PSAs and social marketing may be understood in terms of targeted and local. Tip O'Neill, speaker of the US House of Representatives from 1977 to 1987, used to say “all politics are local.” He meant that successful election to government office is achieved only by pressing the flesh and meeting constituents in one's district. Mr. O'Neill, now deceased for 15 years, might question the twenty-first century's fascination with marketing and media to spread the message and get out support. He would say advocacy groups should also consider targeted and local approaches to change. Targeted means the program attempts to change stigmatizing attitudes and behaviors of key groups in the lives of people stigmatized for their mental illness; for example, employers, landlords, health care professionals, teachers, police officers, and legislators. These groups are defined in terms of relative, potential power over the person with mental illness. Employers might have power regarding the person getting back to work, the property owner in terms of housing, and legislators in terms of resources for mental health programs. Targeted anti-stigma programs have significant effects because they are crafted to include content and processes relevant to the interests and concerns of a particular group. A program for employers might include activities that address whether a person with mental illness will be a risk to co-workers or may not be able to meet productivity goals. Employer “peers” are likely to sway attitudes and behaviors more than other group leaders, because of their automatic credibility with business leaders.

The stigma of mental illness will likely interact with other prominent social forces. Prominent among what we call local effects are ethnic differences which combine with mental illness stigma for compound effects. People of African backgrounds living in Western Europe experience a different sense of culture and opportunity from the majority. “If you think being mentally ill is hard, try also being black and poor!” One project by Corrigan on African American Chicagoans showed their faith communities to have a markedly greater impact on stigma than experiences of people with European roots. “Admitting to mental illness is letting your church down!” Local diversity issues are not limited to ethnicity. Gender, socio-economic status, education, and sexual orientation are also factors that may potentially impact stigma. We would expect, for example, the personal decision to disclose one's mental illness would be measurably influenced by gay and lesbian experiences about coming out. Incorporating them into programs is likely to yield a program with more potent influences on stigma change.

The focus on target and locality leads to benefits not necessarily had by PSAs and social marketing. Targeted and local provide an avenue for advocates themselves to pursue stigma change rather than relying on more macro-, typically government-based, efforts.

It would be nice if the whole world would stop their biases but I am not sure this can be done. At the end of the day, what I really want is for employers to hire me and landlords to rent to me, for them to stop stigma and say, “You can do it!”

Targeted approaches focus the critical lens from the seemingly massive focus of PSAs to the beliefs and behaviors of more immediate groups.

Don't Call Me Nuts! Coping with the Stigma of Mental Illness

Whether it is local or society-wide, there is an armamentarium of strategies from which advocates might select to challenge stigma. In 2001, one of us (PWC) partnered with Robert Lundin to write Don't Call Me Nuts! Coping With the Stigma of Mental Illness.2 The first pages of Don't Call Me Nuts accepted the premise that the quality of life of people with mental illness is wounded by stigma. From that assumption, we focused on an array of strategies that might diminish mental illness stigma. A decade has passed since then and the research evidence on stigma has increased by about fivefold, from 52 in 1988 to 247 in 2008. These data have begun to be used, in part, to identify the strengths and limitations of anti-stigma programs.

Challenging the Stigma of Mental Illness is an update of many of the ideas in Don't Call Me Nuts. Some sections were taken directly from Don't Call Me Nuts. It was then colored by what is known about stigma change in the recent research literature. Investigator and practitioner were sometimes odd bedfellows in writing Challenging the Stigma of Mental Illness. Scholarly books often lose the practical reader in esoteric consideration of methods and analyses. For this reason, we purposefully decided to keep research references in Challenging the Stigma of Mental Illness to a minimum and in favor of “how to” prescriptions.3 We direct interested readers to existing research-based texts including two by our group (Corrigan, 2005; Corrigan & Shapiro, 2010).

For Whom is this Book Written?

We have thus far referred to advocates as the agents of change in anti-stigma programs. The book is primarily meant for the doer, for the activist per se, a bit of a different readership from most professional books target. Advocate is a multi-level term, however. It includes several different kinds of stakeholders. Prominent among these is the group charged in most cultures with addressing psychiatric illness and disease: the mental health service provider, the “therapist.” This is the provider who, through their education, experiences, and commitment, builds personal and therapeutic relationships with people seeking assistance for mental illness. We define therapists in terms of their helper role and challenge them herein to broaden their approach from just the problems of the person to those of the community in which the person lives. “Therapist” is broadcast in the book's title because it is an important group for comprehensive stigma change.

Therapist is a complex idea frequently split into professionals and paraprofessionals. Some professional disciplines seem to naturally be in touch with the stigma problem: social workers, for example, because of their sensitivity to problems “in the world” and psychologists who have learned the kind of social cognitive ideas that are basic to mental illness stigma. Challenging the Stigma naturally corresponds with readers of this kind. But psychiatrists, nurses, and other medical personnel have an equally important role, if not more so, as therapists taking on the stigma mantle. They are the groups in many parts of the world with legal authority over services provided to people with mental illness. This legal role reflects our assertions about social injustice. Alternatively there are paraprofessionals. These are non-degreed providers who often work in the trenches and hence are more available to people as they struggle with their mental illness and the stigma that accompanies it.

There is irony in including therapists in such an important role. Research often suggests mental health professionals are among the most stigmatizing groups of the general population. At first thought, this seems counter-intuitive, that the group of people who choose themselves for such a therapeutic relationship should be among the more prejudiced. One reason might be the skewed picture drawn of therapists. Simply put, the mental health provider only sees people when they are acutely ill. When they seem better, they move on from the helping relationship. This is especially noticed at inpatient settings where people are psychotic. Whatever the reason, psychiatrists, social workers, and others need to be actively recruited to assume their rightful place in the stigma change movement.

Obviously, then, a prominent group of readers are people in the helping professions. The message of the book has relevance to both in-service and pre-service efforts for them. Grand rounds and other programmatic activity in public and social psychiatry are natural venues for in-service programs. Of equal, if not greater, importance is the agenda to educate early career professionals so they are not tainted by some of the stigma that has already infected the professions. Hence, the book has a role in graduate courses in social work (especially in clinical social work and adult psychiatry) and advanced courses in both clinical and rehabilitation psychology. Advocates have put special efforts into medical students and residents, often presenting first-person accounts of recovery to medical students.

As said earlier, stakeholder is multi-level. We have just described the role of therapists in the anti-stigma agenda. Also important, in fact the lead agent, are people with mental illnesses themselves. They are the group directly harmed by stigma and hence most invested in stigma change. Still, even the idea about person is complex, and varies with the way the person frames his or her mental illness. One way this has been defined is in terms of user (or consumer in some places), ex-patient, and survivor. Users are people with mental illness who are choosing, at a specific time, to meet with a professional or paraprofessional to address some problem or goal related to the mental illness. Ex-patient sometimes refers to people who, at another time, are not consuming services. Note that the person with mental illness can move back and forth between user and ex-patient roles depending on need. Other advocate groups, however, view ex-patients as an angry term; they are people who, not only are no longer in need of services, but believe “breaking off ” from such services is an important step in recovery. Survivor reflects this anger even more. In most advocacy communities, survivors do not represent people who have survived the illness, but rather the treatment. Obviously the level of energy and assertiveness varies depending on the way the person sees him- or herself. Keep in mind that there are many people who do not find this three-group definition meaningful. Patient is promoted more by some research participants and in many others, just person with mental illness is sufficient.

The book also interchangeably refers to mental illness and serious mental illnesses. In part, this lack of precision represents our mixed opinion about mental illness stigma. Some research has shown that public stigma varies with diagnosis, with alcohol and substance abuse viewed most negatively and depression more benignly. Research of this ilk illustrates an interesting point; namely, that the type of stigma varies across diagnoses. One diagnostic group is not universally disparaged. It is not surprising to find substance abuse viewed as more dangerous than schizophrenia, which in turn is judged more harshly than anxiety disorders. However, prognosis (The person won't get better!) is another important stigmatizing attitude. In this case, people with developmental disorders are viewed most negatively. In addition to the difference of stigma across diagnoses, there is also evidence of a nonspecific effect. Namely, regardless of the diagnosis, there are negative judgments about people merely known as having a mental illness. Considerations about nonspecific and diagnostic effects are important processes in developing anti-stigma programs, especially self-stigma efforts.

There are additional stakeholder groups relevant to understanding stigma and developing anti-stigma programs. Families, for example, are important. Namely, many cultures in the world view family members as blameworthy in terms of their relative's mental illness, or disgusting and an important group to avoid. Family stigma varies by family role. Parents are stigmatized differently from siblings, who are different from spouses. Already in existence are family programs (e.g., Enosh, Israel's Mental Health Association; Rethink in the UK; Norway's People to People Foundation; and the National Alliance on Mental Illness in the USA) which may be natural avenues in recruiting relatives for anti-stigma efforts.

Stigma is an international problem. Note the paradox. As a local enterprise, stigma is an international problem. We know of no society where the stigma of mental illness is not present and potent. Although we might expect stigma to be a common phenomenon across cultures, in fact local mores are essential to consider. We would expect stigma to be similar across societies, but find that stigma notably varies across cultures. For that reason, the book is written by authors from North America (PC), the Middle East (DR), and Asia (HT). It was written especially for Western European and other English-speaking readers including advocates from the United Kingdom. But we suspect the lessons here are applicable in most other nations. Our decisions on authorship have influenced the many examples in the book meant to illustrate our assertions. This decision brings diverse perspectives to the material.

We began the preface with the message we revisit here at the end: Stigma is an issue of social injustice! It is not a product of disease, an end point of disability, or a flaw in the person with mental illness. Resolution of most of the symptoms and disabilities focuses on the person with mental illness. The focus of stigma change rests with the community and society. There are times in the book where we examine changes in self-stigma, where cognitive therapies are touted as a way to get rid of irrational and hurtful stigmatizing attitudes. But this should not lead to misguided notions that stigma is the problem of those with mental illness and their families. Race is not the problem of people of color. Both social woes are overcome only by concerted and focused efforts to stamp out the stigma and replace it with rightful opportunity.

Notes

1. Language is a major consideration in understanding mental illness stigma. Referring to psychotics or patients frames people in a light that perpetuates discrimination. Alternatively, and consistent with the zeitgeist, we use person first language. Hence, instead of schizophrenic we write persons with schizophrenia, not those mental patients but people consuming mental health services. Person first language reminds members of the public about personhood, namely, that the individual is first known as a person and all its intricacies with illness taking a distant backseat.

2. The last section of the book – Learn More About It: Resources and Reference – provides information on relevant references including recommended readings.

3. Still, we do cite important papers where corresponding evidence-based ideas are available. We start these citations in Chapter 1.

Acknowledgments

Many people have influenced our ideas about stigma and stigma change. These include Beth Angell, Galen Bodenhausen, Thom Bornemann, Jennifer Brown, Rosalynn Carter, Jennifer Crocker, Larry Davidson, Robert Drake, Sue Estroff, Kelvin M. Fung, Shenghua Jin, Anthony Jorm, Shlomo Kravetz, Chow Lam, Jonathan Larson, Yueh-Ting Lee, Ada Leung, Bruce Link, Barbara Lurie, Paul Lysaker, Steven Marcus, Fred Markowitz, Chris Marshall, Emeline Otey, Victor Ottati, Rebecca Palpant, David Penn, Bernice Pescosolido, Jo Phelan, Nicolas Rusch, Mark Salzer, Norman Sartorius, Jenessa Shapiro, Kan Shi, John Strauss, Amir Tal, Graham Thornicroft, Paolo del Vecchio, Otto Wahl, Amy Watson, Perla Werner, and Phil Yanos.

Special to our work are people with mental illness who have actively joined the battle: Jean Campbell, Patricia Deegan, Daniel Fischer, Virginia Goldrick, Martin Juricek, Robert Lundin, Jay Mahler, Joseph Rogers, Susan Rogers, Yvette Sangster, and Ilil Tzin.

Finally, appreciation goes to our families, who have supported us through our interminable scholarship. We are only able to bring our messages alive through your love. To my wife Georgeen, and children Abraham and Elizabeth (PC), my wife Galia, and children Shanee, Eyal, Alon, and Netta (DR), and to my wife Wai Ming and child Kevin (HT).

Chapter 1

Stigma is Personal

All great things are simple, and many can be expressed in single words: freedom, justice, honor, duty, mercy, hope.

Winston Churchill

Stigma is not some kind of heady abstraction experienced by an overly sensitive few. It is a social injustice that discredits many people with serious mental illness, terribly harming them in the process. Resulting injury is broad and cutting. Public endorsement of the prejudice and discrimination of mental illness robs people of such rightful opportunities as a good job, agreeable housing, and intimate relationships. Internalizing the stigma of mental illness and directing stereotypical negative attitudes towards one's self leave people feeling unworthy and incapable. Many people seek to avoid stigma altogether by keeping away from places where individuals are tagged mentally ill, perhaps most notably mental health clinics in their various guises. “That guy, Harry Black, just came out of Dr. Johnson's psychiatric clinic; Harry must be crazy.” The threat of stigma, and the effort to avoid the label, are so powerful that more than half of the people with mental illness who would probably benefit from psychiatric services never obtain even an initial interview with a professional. Stigma hurts and it is personal.

We seek to give voice to stigma here by considering examples of personal stories; a collection of tales meant to illustrate private experiences of mental health and stigma. These personal stories especially make sense in the most blatant port for stigma – the media. Stigmatizing images of mental illness in movies, newspapers, television, online, and advertisements are provided as especially poisonous sources of prejudice and discrimination. We attempt to make sense of stigma and the media by examining key points in history related to public impressions of mental illness and stigma. We then jump in with our first strategies for stigma change; sensitizing people to stigma which parallels a discussion about appropriate language. We end this chapter by revisiting the personal nature of stigma.

We imply by the very existence of this book that stigma continues to hurt. A series of population studies has allowed us to actually examine this assertion. In 1950, Shirley Star and colleagues from the National Opinion Research Center (NORC) conducted face-to-face interviews with a representative sample of 3,529 American adults (cf. Phelan, Link et al., 2000). Of the many goals of the survey, Star (1952, 1955) examined public impressions of people with mental illness. Most important to the point here was whether research participants viewed people with serious mental illness as violent. In 1996, NORC repeated items from the Star survey as part of a snapshot of NORC's annual snapshot of contemporary life. On one hand, we expect to show a decrease in viewing people with mental illness as violent consistent with popular notions that the general public are more educated about mental illness than 1950 cohorts. A more sobering response would show no change in attitudes between 1950 and 1996.

What is found? Figure 1.1 summarizes relevant data analyses (Phelan et al., 2000). Stigmatizing attitudes got significantly worse! People in 1996 were about two and a half times more likely to view individuals with serious mental illness as dangerous compared to 1950. Researchers in the 1996 study conducted a second interview in 2006 and had similar sobering findings (Martin et al., 2009, personal communication). Comparisons of 2006 with 1996 data are not totally completed at the time of publishing this book. However, the investigators did report no significant reduction in attitudes between 1996 and 2006. Things have not really improved. Think how sobering these finds are. They fail to reflect the hope that more education would lower stigma. One reason is the change of the face of media around the world during these 40 to 50 years. We discuss this point more fully later in the chapter.

Figure 1.1 A summary of research on the dangerousness of people with serious mental illness. These data were collected in 1950 and 1996. Findings reflect percentage of survey participants whose description of mental illness includes perceptions of violence.

Some Personal Stories

Stigma is a personal thing that can have broad impact on people labeled as mentally ill. In part, it reflects the varying shades of mental illness. More importantly, the impact of stigma varies with the unique qualities of the person.

Bob was first diagnosed with a serious mental illness in high school which led to a three-day hospitalization. It was not until five years later that he showed signs of serious psychosis. One night, during a lightning storm, Bob was sure the United States was being bombed by the Russians. So, he went to tell the university's chancellor; luckily he was detoured to the local emergency room. Symptoms like these were followed by crippling anxiety attacks. Bob was hospitalized more than ten times in the subsequent decade or so. After a long struggle, Bob found a psychiatrist with whom he built a strong partnership, who identified Bob's illness as schizoaffective disorder, and found medications that helped him manage his disorder. Bob was then able to obtain a full-time job at a major university, lived independently in his own condo, and traveled greatly across America and to international ports of call. Flash forward to 1998. Bob has become an acknowledged journalist, with evident skills in reporting and photography. He developed his network as a freelance writer. He was worried that more face-to-face work with newspapers would lead to discovery that he is a person with mental illness, and as such is not competent to do the kind of work at which Bob excelled. So he would travel to newspaper headquarters early in the morning and slide stories and photos under office doors.

Bennett has a terrible fear of elevators. He panics and runs out of them before the door closes. It has become a major problem since his company moved to the 35th floor of a downtown building. He had to quit his job and is unable to find further work because of his phobia. Bennett's income is falling quickly and he has had to file for bankruptcy to handle delinquent bills. None of his classmates from Harvard thought he would end up with such problems. He is terribly ashamed of his weakness and has withdrawn from friends.

Nobody at work ever knew that about once a year, Emil would have a manic episode followed by a severe depression. He wasn't able to go out for about three weeks after. Fortunately, Emil had a close set of friends who would help him through the episodes. They would sleep over, cook, and otherwise keep him company. With appropriate help from his psychiatrist, Emil was eventually able to get back to work without ever being hospitalized. His support network helped Emil to avoid the harsh light of public stigma. This same network diminished a sense of shame for his “failings.”

Betsy suffered from terrible test anxiety. Before she learned relaxation strategies, she could barely get into a classroom to take exams. However, after a few audiotapes, she learned breathing exercises and became a whiz at tests! Stigma never really became an issue for her.

Which one of these people has a mental illness and suffers the impact of stigma? Whose psychiatric disorder and corresponding experiences with stigma are the most severe? In some ways, Bob represents the prototype of mental illness; he has a diagnosis that includes psychosis which started in young adulthood and led to severe symptoms. Bennett has what is usually considered to be a milder psychiatric diagnosis, a phobia or irrational fear of something in his environment. But consider the impact of the two illnesses. Bob, despite having schizoaffective disorder, has learned how to manage the illness, has obtained a respectable job, and has become a world traveler. Unable to work, Bennett's world is tumbling down around him. Bob was able to box off stigma, sliding his work under the door in order to maintain a successful writing career. Bennett internalized stigma terribly, which only worsened the sense of alienation from family and friends.

Emil's experience with mental illness is like a tree falling in an empty forest; is it a mental illness if no one knows? He escapes the label and all the harm which stigma creates. Betsy suffered what professionals might consider the minor headache of mental illness, test anxiety. Most readers might dismiss this altogether from the category of major psychiatric disorders. But, while in college, tests for Betsy were as painful as someone else's experience with major depression or psychosis. Moreover, the impact of test anxiety remaining untreated could have had major repercussions; failing classes, dropping out of school, and not attaining the career to which she aspired. Stigma will wax and wane with her experiences.

This book is about the stigma of persons with serious mental illness. What we have taken for granted is a definition of what exactly mental illness is and who is labeled mentally ill. Sorting out who is and is not mentally ill seems like such an easy task.

Psychotics to the left; neurotics to the right.You're mentally ill; you're normal.Insane people are obvious!

However, when we take a closer look at these assumptions, we find that simple definitions distinguishing those with mental illness from those without elude us. The place to begin to make better sense of these definitions is history – how has the stigma of mental illness appeared over time and across cultures?

Why the Stigma of Mental Illness

By no means is stigma a recent creation. Much of written history has examples of the broad-based prejudice and discrimination with which the public has branded people labeled with mental illness. Most often, stigma has emerged when people of different eras try to understand mental illness as a punishment of god or a mark of the devil. Two recent books (Hinshaw, 2007; Thornicroft, 2006) effectively review this history; prominent examples are presented here to orient the reader to the foundations of stigma. The authors trace stigma back to the Greeks of the classical era. The prominent belief of Homeric times was that mental illness represents displeasure of the gods. Dramas and comedies showed an angry and powerful deity damning a human with psychotic symptoms, for example, or those of depression and bipolar disease. As a result, people were robbed of the opportunities commensurate with their station in life. This kind of “theological” presentation had perhaps its most heinous history during the Middle Ages. People with mental illness were viewed as products of the devil with symptoms being outward manifestation of their wickedness. Mental illness was seen as a moral danger to society which had to be rooted out and eradicated before the devil's work took other victims. Sometimes, this showed itself as exorcisms where the clergy forcefully tried to push out the demons in an emotional and spiritual war. Other times, a community sought to erase the wickedness of mental illness through executions, including such barbaric acts as burning the person at the stake.

Thus far, we have provided a Eurocentric review of mental illness and history. Sadly, there is compelling evidence that Asian, African, Middle Eastern, Native American, and Australian peoples also stigmatized, discriminated against, and harmed people labeled “mentally ill.” Examination of relics from Egypt around 5000 BC has shown, for example, an attempt to cure a young princess of demonic possession, of mental illness. The Old Testament urges “disturbed” behavior to be punished by death. Hindu cultures dressed people with mental illness in religious garb and, in some settings, related to them as divinities. Mayan and Aztecan groups sought to throw out demons in an individual as well as in their community by human sacrifice. Evidence from the Koran and other Muslim writings framed some psychiatric behavior as a threat to the spiritual.

A second, oft-repeated alternative to mental illness stigma as moral shortcomings was mental illness as “illness.” Classical Greece not only represented mental illness as a sin but also as a disease process. Contemporaries of Plato and Aristotle developed seemingly sophisticated models of psychiatric illness in terms of physiological or anatomic aberrations. Hippocrates described psychiatric behaviors as an imbalance in the humors. Galen, the great second-century anatomist, argued that relative temperatures of the brain accounted for mental illnesses.

Current depictions of mental illness reflect a biological perspective that mostly evolved from the industrial age. The mechanical mind is a collection of processes and actions; events that interfere with these actions lead to mental illness. This paradigm calls for treatments and applications meant to halt diseased activity; unfortunately, many practices in the industrial age reflected the injustices and harms of earlier times rather than some enlightened and efficient process of the era. Practices of the eighteenth and nineteenth centuries included misguided notions of Celsus, actually a physician of ancient Rome. As transposed to the 1700s and 1800s, his followers emphasized restraints, extreme hunger, living in total darkness, and intentional fright.

Asylums were little better than prisons in the 1800s. People with mental illness were confined to cells or chained to walls, with little consideration to such very basics needs as food and clothing. Sadly, tourists of the times traveled to these asylums as a fun outing, similar to seeing animals at the zoo. Historians estimated that 19,000 gawking visitors toured through Bethlehem hospital in England in a single year. Physicians tried to address the suffering patient of the era but treatments were rarely effective and actually at times barbaric. Common was bloodletting, opening a vein so that bad “humors” were ejected and replaced by sane fluids. There was also twirling people in a chair, tying them down for excruciatingly long periods, and dunking them in tanks filled with water. Also seizure-based treatments appeared, reflecting the rationale that the extreme chaos of seizures “resets” the brain, yielding normal brain processes. Insulin shock and electroconvulsive strategies were prominent examples. Despite what was hoped to be able approaches to stemming mental illness, treatments and places where these treatments occurred remained terrifying.

Convergence in the progressive ideas of societal leaders resulted in what has been called moral therapy. Pussin and Pinel in France, Chiarugi in Italy, Tuke in England, and Rush in America were all voices of anger believing that notions of asylum, confinement, and deprivation were fundamentally immoral and must be replaced by more humane approaches. Moral treatment led to the establishments of true asylums; pastoral locales removed from the stress of daily living where people could gently return to the noise of the contemporary world. Pinel coined the term “moral” treatment, based on two assertions. First, mental illness affected a person's moral (psychological and social) faculties, while leaving reason relatively intact. People with serious mental illness were, therefore, human at the core. Second, notions that people with mental illness were beasts needed to be replaced with visions of hope and opportunity. This could only be achieved in settings of kindness and respect.

Great leaps were taken with the development of psychotropic medications starting in the twentieth century. In 1952, two French psychiatrists – Jean Delay and Pierre Deniker – showed Thorazine to “tranquilize” the symptoms of schizophrenia without worsening the person's depression. Called antipsychotic medication, psychiatrists for the first time had a tool to help people with serious mental illness managing their symptoms. Length of hospital stay decreased significantly, returning people to the community. Unfortunately, Thorazine and drugs like it frequently had significant side-effects impacting almost every organ in the body. Prominent among these were marked emotional distress, as indicated by an inability to sit still, sensitivity to light, and a dry mouth. Atypical anti-psychotics emerged after several decades of research, first in Europe, and then in America in about 1990. These medications showed marked reduction in psychotic symptoms without the pronounced side-effects found with Thorazine, though it is important to note that the atypicals had a set of side-effects to be reckoned with in their own right.

Also in the 1950s, Kuhn and Kline introduced tricyclic or anti-depressant medications which were shown to control many of the symptoms of major depression. Unfortunately, these drugs also caused significant side-effects. The introduction of a set of medications called serotonin-specific re-uptake inhibitors (SSRIs) reduced depressive symptoms with diminished harm. Towards the beginning of the 1950s, an Australian psychiatrist named John Cade introduced lithium as an effective medication for addressing the symptoms of bipolar disorder.

The significant achievements of medications fostered a medical model of illness and treatment. These models have largely defined the core of clinical research. They have dominated the twentieth-century clinical agenda; namely, identify, develop, and evaluate medical strategies (largely medications) that will heal the person by suppressing psychiatric symptoms. Consider some contemporary agendas. In 2008, the National Institute of Mental Health spent more than 1.4 billion dollars in research, with the overall agenda clearly dominated by physiological models and corresponding treatments. Their efforts were hugely advanced by drug companies in search of products that will ameliorate mental illness; they spent billions a year in developing and distributing effective psychiatric medications. Drug company commitment to this process is mostly driven by increasing profits for investors.

Stigma Today

Many advocates believe medical models, which are often derisively described, are the source of much of the stigma of mental illness. Viewed traditionally, the medical model represents physicians and allied health colleagues as experts who should therefore dominate decisions about mental health treatment and psychiatric care. Supposed insight of the doctor spreads to more general life decisions; for example, people with mental illness are incapable of understanding their illness and thus need a parental figure to make appropriate decisions for them. These decisions are often conservative because the doctor-as-expert believes relapse to be the result of rapid and ill-considered treatment. Common is the recommendation that people with schizophrenia should not try regular work, should live in nursing homes where they can be carefully monitored, and should be dissuaded from forming intimate relationships.

Powerful reactions to models that rob people of self-determination and personal empowerment led to important grassroots approaches. Ex-patient Clifford Beers, for example, wrote about his experiences in hospitals in A Mind that Found Itself