Paradigms Lost, Paradigms Found Lessons Learned in the
Fight Against the Stigma of Mental Illness 2nd Edition
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Library of Congress Cataloging-in-Publication Data
Names: Stuart, Heather L. author. | Sartorius, N., author.
Title: Paradigms lost, paradigms found : lessons learned in the fight
against the stigma of mental illness / Heather Stuart, Norman Sartorius.
Other titles: Paradigms lost
Description: 2. | New York, NY : Oxford University Press, [2022] |
Preceded by Paradigms lost : fighting stigma and the lessons learned /
Heather Stuart, Julio Arboleda-Flórez, Norman Sartorius. c2012. |
Includes bibliographical references and index.
Identifiers: LCCN 2022003404 (print) | LCCN 2022003405 (ebook) |
ISBN 9780197555804 (hardback) | ISBN 9780197555828 (epub) | ISBN 9780197555835
Subjects: MESH: Mental Disorders—psychology | Attitude of Health Personnel |
Mentally Ill Persons—psychology | Social Stigma | Prejudice | Social Change
Classification: LCC RC454 (print) | LCC RC454 (ebook) |
NLM WM 140 | DDC 616.89—dc23/eng/20220204
LC record available at https://lccn.loc.gov/2022003404
LC ebook record available at https://lccn.loc.gov/2022003405
DOI: 10.1093/med/9780197555804.001.0001
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9 8 7 6 5 4 3 2 1
Printed by Integrated Books International, United States of America
v
In memory of Julio Arboleda-Flórez, colleague,
friend, and partner.
vi
vi
CONTENTS
Preface xiii
1. Mental Illness–Related Stigma 1
Introduction 1
A Tour of Terms 1
The Stigmatization of Mental Illnesses 3
Stigma as a Consequence of Institutional Psychiatry 4
Stigma as a Consequence of Deinstitutionalization 5
Stigma as a Consequence of Therapeutic Nihilism 8
Three Stigma Mechanisms: Combined and Intertwined 10
Structural Stigma 11
Public Stigma 13
Self-Stigma 15
Summary 17
2.
Cultures Count: They Stigmatize and Destigmatize
Mental Illnesses 19
Historical Perspectives on Stigma 19
Ancient Greece (5th to 2nd Century B.C.E.) 20
Middle Ages (5th to 15th Century) 21
The Renaissance (14th to 17th Centuries) 22
The Rational Era (17th and 18th Centuries) 22
The Era of Moral Treatment (19th Century) 23
Gheel, Belgium: A Special Case (600 A.D. to Present) 25
The Village of Aro, Nigeria 26
Perspectives from Non-Western Cultures 26
Islamic Culture 27
Chinese Culture 28
Indian Culture 29
Cross-Cultural Studies 30
Summary 34
vi
3. Paradigms Found in Fighting Stigma 35
The Enlightened Opportunism Model of Stigma Reduction 35
The Importance of Building Networks 37
The Importance of Targeting Efforts 39
Health Professionals Should Take a Back Seat in Community
Anti-
stigma Programs 40
Listening to the Evidence 41
Building Better Theories of Change 42
Improved Mental Health Knowledge Will Not Eradicate Stigma
and May Increase It 43
Mental Illnesses Are Not Like Other Illnesses 44
Neurobiological Explanations Are Stigmatizing 45
What Counts as Success? 46
Principles to Guide Next-Generation Anti-stigma Efforts 46
Put People First 47
Plan for Sustainability 47
Focus on Activities That Change Behaviors 47
Target Activities to Well-Defined Groups 48
Think Big But Start Small 48
Build Better Practices 49
Summary 49
4. Eleven Steps to Build an Anti-stigma Program 51
Step 1: Develop a Program Committee 51
Step 2: Create an Advisory Committee 52
Step 3: Understand the Nature of Stigma 52
Step 4: Canvass Local Needs and Priorities 53
Step 5: Pick Target Groups 54
Step 6: Set Goals and Objectives 56
Step 7: Identify a Program Approach 56
Step 8: Create an Evaluation Plan 58
Step 9: Situate the Program Alongside Other Anti-stigma
Efforts 59
Step 10: Develop a Resource Plan 59
Step 11: Implement the Program 60
Notes on Research Approaches 61
Focus Groups 62
Individual Interviews 63
Surveys 63
Ethical Considerations 64
Communicating Evaluation Results 65
Summary 65
[ viii ] Contents
ix
5. Fighting the Good Fight 66
International Covenants and Legislation 66
The United Nations 67
Universal Declaration of Human Rights—1948 67
International Covenant on Economic, Social and
Cultural Rights— 1976 68
Principles for the Protection of Persons with Mental
Illness and the Improvement of Mental Health
Care— 1991 69
United Nations Convention on the Rights of Persons with
Disabilities—2008 70
United Nations Sustainable Development Goals—2015 71
International Organizations 71
The World Federation of Mental Health—1948 71
The World Health Organization—1948 72
The World Psychiatric Association—1950 75
National Anti-stigma Programs 77
Social Contact 81
Good Storytelling Is a Key Ingredient 83
Programs Targeting Self-Stigma 84
Summary 86
6. Media 88
News Media: Telling or Selling the News? 88
Media Guidelines 90
Are Media Guidelines an Effective Anti-stigma Strategy? 92
Language Change: Semantic Sleight of Hand or Effective
Anti-stigma Strategy? 97
Movies and Madness 98
Engaging the Media for Positive Change 100
News Media 101
Entertainment Media 103
Social Media 104
Summary 105
7. Health Systems 107
Structural Stigma in Mental Health Systems 107
The “Architecture of Madness” 108
Fragmentation of Care 110
Punitive Cultures of Care 111
Inpatient Commitment 113
Outpatient Commitment 115
Seclusion and Restraint 117
Lack of Recovery-Oriented Care 121
Contents [ ix ]
x
ealthcare Provider Bias 122
H
Stigma as Implicit Bias 123
Stigma as Explicit Bias 126
Summary 129
8. Educational Systems 130
Preschool (Pre-Kindergarten) 131
Primary School (Age 5 to 13) 132
Eliminating the Stigma of Differences 134
Breaking the Silence: Teaching the Next Generation
About Mental Illness 135
The Science of Mental Illness 136
Secondary School (Ages 14 to 17) 137
Postsecondary School (Ages 18 to 22) 139
Postgraduate Programs for Health Professionals 140
Continuing Professional Development 142
Police Training 145
Contact-Based Education for Police Recruits 145
Scenarios with Discussion 146
Summary 146
9. Employment Inequity and Workplace Stigma 148
Disability Legislation 149
Workplace Cultures 151
Workplace Interventions 153
The Road to Mental Readiness for First Responders (R2MR)/
The Working Mind 154
Beyond Silence Versus Mental Health First Aid (MHFA) 155
Mates in Mining (MIM) 156
Looking After Wellbeing at Work (LWW) 157
Workplace Accommodations 158
Vocational Programs and Supported Employment 159
Sheltered Workshops 159
Transitional Employment 160
Social Enterprises 162
Supported Employment 163
Summary 164
10. Using Technology to Fight Stigma 166
Video-Based Contact 166
Entertainment Education 170
Digital Game Playing 171
Internet Interventions 173
Social Media 174
E-contact 176
[x] Contents
xi
Simulations 177
E-therapies 179
Summary 180
11. Research 182
Inequitable Funding for Mental Health Research 182
Mental Health Funding Agencies 186
Building an Evidence Base for Anti-stigma Programming 186
Research Networks 189
Approaches Used in Stigma Survey Research 192
Selecting the Right Outcome Measure 192
Global or Specific Stigma Content 193
Reliability 193
Factor Structure 195
Sensitivity to Change 196
Cultural Sensitivity 196
Measurement Options 197
Social Distance Scales 197
Self-Stigma 201
Structural Stigma 203
Summary 205
12. Stigma and Substance Abuse 207
Drug-Related Stigma 207
Opioid Stigma 210
Stigma and Alcohol 213
Stigma and Other “Non-addictive” Substances 213
Stigma in Non-Western Countries 215
Substances Used in Religious Ceremonies 216
Women and Drug Dependence 217
Substance Use Among Nurses 218
Access to Treatment 219
Stigma as a Public Health Tool 220
Approaches to Stigma Reduction 222
Decriminalization of Substances 224
Summary 225
13. Summary and Reflections 227
Appendix: Stigma Section Bibliography 239
References 253
Index 277
Contents [ xi ]
xi
xi
P R E FA C E
This book draws on 25 years of experience working with anti-stigma programs
internationally, nationally, and regionally. The journey began with the “Open
the Doors” Global Program to Fight Stigma Because of Schizophrenia—a pro-
gram that was delivered in over 25 countries under the auspices of the World
Psychiatric Association. Our experiences with Open the Doors and subse-
quent development of a Scientific Section focusing on stigma in the World
Psychiatric Association and regular “Together Against Stigma” international
conferences have brought us into contact with an international network of
interested researchers and advocates. We have learned much about what can
be accomplished with focused anti-stigma efforts and how best to conduct
anti-stigma programs even on shoestring budgets. Despite a growing number
of large, well-funded national anti-stigma efforts, our experiences have taught
us that everyone can contribute something, whether in high-, middle-, or low-
income countries.
In the first edition of this book in 2012, we identified paradigms that we
thought needed to be replaced. Our emphasis was on recognizing and chal-
lenging outmoded approaches, those that had outlived their usefulness or had
never really been useful in the first place. At that time, the anti-stigma field
was still in its infancy, without a strong evidence base. Programs varied widely
in their approaches. As time has progressed, many national anti-stigma pro-
grams have adopted some or all of the approaches we initially described in the
book Paradigms Lost. [1]
In this edition, we continue to emphasize the importance of evidence-
based approaches and evidence creation and begin to examine some of the
new paradigms that have been developed in recent times—thus, the title
Paradigms Lost, Paradigms Found. We continue to argue that stigma reduction
must be rooted in principles of social equity and result in behavioral change
at the individual and organizational levels. The goals must be to eliminate the
social inequities that people with a mental illness and their family members
face, and to promote full and effective social participation. Awareness raising
and mental health literacy are important, but they do little to empower people
xvi
with a mental illness or their family members to enjoy their civil and legal
rights or change the accumulated practices of social groups and social struc-
tures that systematically disadvantage those with mental health problems.
This book is written with one eye to the past and one to the future. It will
summarize some of the elements and principles articulated in the first edi-
tion but will also go into depth in targeted areas (such as healthcare settings,
workplaces, schools, and the media) when there was little known about stigma
and stigma interventions when we produced the Paradigms Lost volume. We
expect that this edition will be a useful sequel to Paradigms Lost, chronicling
what we have learned as a global community regarding mental illness–related
stigma and targeted stigma-reduction approaches.
[ xiv ] Preface
1
CHAPTER 1
Mental Illness–Related Stigma
INTRODUCTION
In the history of medicine, few conditions other than mental illnesses have
cast such a pall on an individual, their family, health providers, health sys-
tems, and health research. In addition to having serious consequences for
one’s social identity, having a mental illness or substance use disorder* results
in structural inequities that impinge on one’s health, longevity, quality of life,
social welfare, civic participation, and access to resources. Stigma also casts
a long shadow, affecting all of the supports and structures that people with
mental illnesses need in order to recover and embrace socially meaningful
roles and relationships. [2]This chapter provides an overview of the nature
and nurture of stigma from the era of the asylum to our current recovery
paradigm.
A TOUR OF TERMS
The term stigma has been variously used to refer to a negative and pejorative
attitude that members of the public hold toward people with a mental illness,
a mark of shame that someone with a mental illness bears, to a complex socio-
structural process that involves a number of interconnected parts, and even
to a mark of grace that resembles the wounds of Christ. [2]Some advocates
have suggested that the pejorative use of the term stigma has outlived its use-
fulness and we should focus instead on discrimination (e.g., [3]). However,
this may be an unnecessarily narrow and polarizing view. Link and Phelan
*
Throughout this book, we consider mental illnesses in the broadest sense to include
all neuropsychiatric conditions and substance use disorders.
2
provide a useful and broad definition of the stigmatization process that in-
corporates a variety of interrelated elements. [4] The first element involves
the identification and labeling of socially salient differences. Next, the label
becomes linked, in the public psyche, to a negative stereotype. People who are
labeled are placed in a distinct category and viewed as separate from the norm
(e.g., us vs. them). They are no longer thought of as unique individuals, but
as members of a homogeneous group. Once categorized in this way, labeled
people experience status loss and discrimination leading to social inequities
in all walks of life. The ability of a social group to stigmatize is entirely de-
pendent on the ability of its members to access social, religious, economic,
and political power, as only powerful groups can stigmatize. The various types
of stigmas (e.g., structural, public, and self-stigma) are discussed in more de-
tail elsewhere in this chapter.
Stereotypes and prejudicial attitudes are key components of stigma.
Cultural stereotypes are broadly held beliefs about the defining characteris-
tics of a group. They can be inaccurate, negative, over-generalized, and exag-
gerated depictions that are applied to all members of the group. Stereotypes
are frequently expressed even though an individual may never have met
someone from the stereotyped group. Prejudices go much farther than
stereotypes involving negative feelings and attitudes. Whereas stereotypes
form the cognitive scaffolding about a group, prejudices reflect deep feelings
of hatred and distrust that may give rise to discrimination. Once developed,
stereotypes and prejudices are difficult to change as people will attend to
new information selectively and accept only information that is in harmony
with their beliefs. This has implications for anti-stigma programming as one
way of changing stereotypes and prejudice is to present a more positive per-
ception of the group as a whole, or to promote an understanding that groups
contain significant variability and that all group members are not the same.
[5] Misconceptions are based on wrong information or a lack of knowledge
and are changeable with new information. Prejudices do not change when
exposed to new information and may even become more entrenched and
unyielding. [6]
Mental health literacy is a term that was coined to refer to knowledge and
beliefs that aid in the recognition of mental disorders, their management, and
prevention. Since then, the term has expanded to include cognitive and so-
cial skills related to individual and collective empowerment needed for mental
health promotion. Good mental health literacy would include such things as
being able to recognize mental disorders in oneself or others, knowledge about
the effectiveness of interventions, and knowledge about how to seek help. [7]
Members of the lay public often have poor mental health literacy, with the
result that they may not seek treatment when appropriate to do so or may
not adhere to advice given by clinicians. Seeing mental health professionals as
the only persons who can provide help when experiencing a mental disorder
[2] Paradigms Lost, Paradigms Found
3
is also an indication of poor mental health literacy. Poor mental health lit-
eracy may be a consequence of stigma. While mental health literacy is impor-
tant in its own right, an increasing number of studies show that members of
the public can be quite knowledgeable about mental illnesses and about their
treatments and still hold negative and socially intolerant views. [8,9] Greater
gains in prevention, early intervention, peer support, and self-help could re-
sult if members of the public had more mental health literacy. [10]
THE STIGMATIZATION OF MENTAL ILLNESSES
Both in ancient and modern times, labeling someone as “mentally ill” immedi-
ately brands them as someone of lesser social value. Lay notions of what con-
stitutes a “mental illness” differ over time, and from culture to culture. Once a
behavior is deemed to be indicative of a mental illness, it is open to prejudice
and discrimination and this designation varies. [11] In one culture a trance-
like state may demonstrate special healing powers, such as that of a shaman;
in another, it will be viewed as evidence of a mental illness and considered to
be deviant and may be demonized. This could explain why those experiencing
psychological or psychiatric phenomena in different cultures may be differen-
tially stigmatized. [12]
The term stigma comes from the Greek stizein, meaning to brand someone
with a sharp stick, or stig. Hence the Latin derivative, stigma, conveys the
meaning of a mark of infamy or ignominy. The pejorative use of the term
most likely appeared in early Christian cultures when mental illnesses became
linked with sin. By the 19th century, mental illnesses were irrevocably linked
to heredity brought about by a degenerative taint in the family. Degeneracy
theory, which was popular until World War II, underpinned the eugenics
movement and discouraged physicians from seeking cures. It also made it ac-
ceptable to house people with mental illnesses in overcrowded and inadequate
asylums. [2]From the 1930s through to the 1980s, countries such as the
United States, Japan, Canada, Sweden, Australia, Norway, Finland, Estonia,
Slovakia, Switzerland, and Iceland all enacted laws that allowed for the co-
erced or forced sterilization of marginalized or disabled women, including
women with mental or other disabilities. More recently, forced and coerced
sterilization of marginalized women has been documented in countries in
North and South America, Europe, Asia, and Africa. [13]
Contemporary notions of stigma are rooted in the work of early sociolo-
gists, particularly the seminal work of Erving Goffman. [14] In Stigma: Notes
on the Management of Spoiled Identity, Goffman explored various forms of
stigma but concluded that the stigma associated with mental illnesses was
the most discrediting. People who had a mental illness were “marked” for so-
cial devaluation, status loss, and marginalization. The label had the effect of
M e n ta l I l l n e s s – R e l at e d S t i g m a [3]
4
reducing someone from a whole person to one who was irredeemably tainted.
He further described stigma as a contagion that could be conferred on those
who were in close proximity to the stigmatized. He termed this courtesy
stigma, also known as stigma-by-association, which was conferred on family,
friends, mental health providers, psychotropic medications, other psychiatric
treatments, mental health research, and systems of care.
It is possible to trace three eras of stigma discourse beginning in the mid-
1950s to the present day. In the first era, stigma was viewed as a consequence
of institutional psychiatry. In the second, it was considered to be the result of
a hasty and ill-managed deinstitutionalization process. In the third, stigma
was viewed as a consequence of therapeutic nihilism perpetuated by the over-
medicalization of psychiatric illnesses.
Stigma as a Consequence of Institutional Psychiatry
Goffman and his contemporaries were particularly critical of institutional
psychiatry. He viewed mental hospitals as anti-therapeutic and considered
that many of the negative and socially debilitating consequences of mental
illnesses were more a result of the way in which mental patients were treated
rather than a result of the illnesses themselves. [15] Together with contem-
poraries such as Thomas Szasz, R.D. Laing, and David Cooper, these thinkers
ushered in an era of anti-psychiatry sentiment. As well as challenging the very
basis of psychiatric illnesses, they were deeply distrustful of organized psychi-
atry because they saw it as being the driving force for the creation of the co-
ercive and stigmatizing nature of psychiatric hospitals. [16] Indeed, Goffman
grouped psychiatric hospitals together with other “total institutions” such as
prisons and concentration camps in terms of their effects on the human spirit.
[15] While Goffman has been criticized for an exaggerated and negative char-
acterization of mental hospitals in the same vein as concentration camps [17],
the general tenor of anti-psychiatry sentiments was to place the blame for the
isolating and stigmatizing qualities of mental health facilities on the psychiat-
rists who were running them.
The growth in the number of large psychiatric institutions occurred at a
time when there were massive social changes in family and community struc-
tures brought about the industrial revolution. Prior to the 19th century, sup-
port for people with a mental illness had been a family and community affair.
Industrialization made it increasingly difficult to manage mentally disordered
behaviors using these traditional structures. Families had been disaggregated
into smaller nuclear units, and small supportive communities had given way
to industrial villages and larger densely populated urban centers. As a result,
there was a decreasing tolerance for and ability to manage mentally disordered
behavior. The rise in asylums was an efficient method of removing the problem
[4] Paradigms Lost, Paradigms Found
