Stigma of
mental illness and ways of diminishing it
Peter Byrne
Advances in
Psychiatric Treatment (2000) 6: 65-72
© 2000
The Royal College of Psychiatrists
http://apt.rcpsych.org/cgi/content/full/6/1/65
Peter Byrne
is Senior Lecturer at East Kent NHS Community Trust (2 Radnor
Park Avenue, Kent CT19 5HN). He completed all his psychiatric
training in Ireland: in Dublin, Waterford and Cork. He also
lectures in Film Studies at University College Dublin. He is a
former chairman of the Public Education Committee of the Royal
College of Psychiatrists in Ireland, and the current co-chairman
of media projects of the Changing Minds Committee. His research
interests include stigma, the media, patient and public
education.
Stigma is
defined as a sign of disgrace or discredit, which
sets a person apart from others. The stigma of mental illness,
although more often related to context than to a person's
appearance, remains a powerful negative attribute in
all social relations. Sociological interest in
psychiatric stigma was given added vigour with the
publication of Stigma – Notes on the Management of
Spoiled Identity (Goffman,
1963). More recently, psychiatrists have begun to
re-examine the consequences of stigma for their
patients. In 1989, the American Psychiatric Association's annual
meeting's theme ‘overcoming stigma’ was subsequently
published as a collection of articles (Fink
& Tasman, 1992), and last year saw the launch of
the Royal College of Psychiatrists" five-year
Changing Minds anti-stigma campaign.
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What stigma means |
Beyond any definition, stigma has become a marker for adverse
experiences (see Box 1 ).
First among these is a sense of shame. Mental
illness, despite centuries of learning and the ‘Decade
of the Brain’, is still perceived as an indulgence, a
sign of weakness. Self-stigmatisation has been described,
and there are numerous personal accounts of
psychiatric illness, where shame overrides even the
most extreme of symptoms. In two identical UK public
opinion surveys, little change was recorded over 10
years, with over 80% endorsing the statement that "most
people are embarrassed by mentally ill people", and about
30% agreeing "I am embarrassed by mentally ill
persons" (Huxley,
1993).
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Box
1.
The experience of stigma
Shame
Blame
Secrecy
The
"black sheep of the family" role
Isolation
Social exclusion
Stereotypes
Discrimination
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The adaptive
response to private and public shame is secrecy.
Commenting on the barriers to the management of depression,
Docherty (1997) cites both patients' shame in admitting
to, and physicians' reluctance to enquire about,
depressive symptoms. Family and friends may endure a
stigma by association, the so-called "courtesy
stigma" (Goffman,
1963). In one study of 156 parents and spouses of
first-admission patients, half reported making
efforts to conceal the illness from others (Phelan
et al, 1998). Professionals are no
different in this regard, and hide psychiatric
illness in themselves or a family member. Secrecy acts as an
obstacle to the presentation and treatment of mental
illness at all stages. So, unlike physical illness,
when social resources are mobilised, people with
mental disorders are removed from potential supports.
Poorer outcomes in chronic mental disorders are
likely when patients' social networks are reduced (Brugha
et al, 1993).
The question
arises as to just what all this shame and secrecy is
about. Negative cultural sanction and myths combine to ensure
scapegoating in the wider community (see Box 1).
The reality of discriminatory practices supplies a
very real incentive to keep mental health problems a
secret. Patients who pursue the secrecy strategy and
withdraw have a more insular support network.
Discrimination occurs across every aspect of social and economic
existence (Fink
& Tasman, 1992;
Heller et al, 1996;
Read & Reynolds, 1997;
Byrne, 1997;
Thompson & Thompson, 1997). A civilisation should
be judged by how it treats its mentally ill:
discrimination is also about the conditions in which
our patients live, mental health budgets and the priority
which we allow these services to achieve. By way of
summary, Gullekson (in Fink & Tasman, 1992) writes
about her brother's schizophrenia:
"For me
stigma means fear, resulting in a lack of confidence. Stigma is
loss, resulting in unresolved mourning issues. Stigma is not
having access to resources... Stigma is being invisible or being
reviled, resulting in conflict. Stigma is lowered family esteem
and intense shame, resulting in decreased self-worth. Stigma is
secrecy... Stigma is anger, resulting in distance. Most
importantly, stigma is hopelessness, resulting in helplessness."
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Stereotypes |
Goffman (1963) commented that the difference between a normal
and a stigmatised person was a question of
perspective, not reality. Stigma (like beauty) is in
the eye of the beholder, and a body of evidence
supports the concept of stereotypes of mental illness
(Townsend,
1979;
Philo, 1996;
Byrne, 1997). Stereotypes are about selective
perceptions that place people in categories,
exaggerating differences between groups (‘them and us’)
in order to obscure differences within groups (Townsend,
1979). As with racial prejudice, stereotypes make
people easier to dismiss, and in so doing, the
stigmatiser maintains social distance. The media
perpetuate stigma, giving the public narrowly focused
stories based around stereotypes. On a more positive note, the
media are a useful location to begin the search for
negative representations and adverse attitudes to
mental illness, and ultimately the media will be the
means of any campaign that aims to challenge and
replace the stereotypes.
Philo (1996)
measured violence as the central element in television
representations in 66% of items about mental illness, an
interesting figure in that it corresponds with the
Royal College of Psychiatrists" 1998 survey, where
70% believed that people with schizophrenia are
violent and unpredictable. At the other extreme, people
with mental illness are frequently portrayed as victims,
pathetic characters, or ‘the deserving mad’ (Byrne,
1997). This parallels the experience of physical
disability, where sympathy is a pretext for social
distance – the "Does he take sugar?" strategy. The
Royal College of Psychiatrists" survey also recorded
consistently high responses (ranging from 50–79%) in
relation to six common mental disorders, when the
public was asked whether the sufferer was "hard to talk
to". Most clinicians would instinctively encourage empathy
not sympathy for their patients.
In cinema
and television, mental illness is the substrate for
comedy, more usually laughing at than laughing with
the characters (Byrne,
1997). As part of the ‘them and us’ strategy,
mental disorders have also been conferred with highly charged
negative connotations of self-infliction, an excuse for
laziness and criminality. Hyler et al (1991)
have written about a number of Hollywood films where
the representations of mental illness are of
"overprivileged, oversexed narcissistic parasites". But
"pull yourself together" attitudes are not confined to
fictional screen representations, with one Northern
Ireland general practitioner writing:
"Yet they
("neurotic patients") take up far too much of our time and
energy – people complaining, miserable, depressed, neurotically
whining about how unhappy they are, pouring out all their
problems in the surgery and dumping them on my doorstep. It
would be really unbearable if I was actually listening to them"
(Farrell,
1999).
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The process of stigmatisation |
The history of stigma, culturally determined, is described
elsewhere (Section 2 of Fink & Tasman, 1992; Warner
in Heller et al, 1996). Some social scientists
believed stigma was a function of labelling by
psychiatrists, citing benign public attitudes of
self-report studies and the observation that many patients
were unaware of stigma: this is not supported by the
evidence (Link et al in Fink & Tasman, 1992).
Mental illness stigma existed long before psychiatry,
although in many instances the institution of
psychiatry has not helped to reduce either stereotyping
or discriminatory practices. Further, the ubiquity of
stigma and the lack of language to describe its
discourse have served to delay its passing: racism,
fatism, ageism, religious bigotry, sexism and
homophobia are all recognised descriptions for prejudiced
beliefs, but there is no word for prejudice against mental
illness. One possible remedy to this would be the
introduction of the term "psychophobic" to describe
any individual who continues to hold prejudicial
attitudes about mental illness regardless of rational
contrary evidence. Despite inevitable objections from
some, the rise of "politically correct" language has been
a key factor in the success of campaigns opposing
discrimination based on gender, age, religion,
colour, size and physical disability (Thompson
& Thompson, 1997).
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Box
2.
Stereotypes of mental illness
Psychokiller / maniac
Indulgent, libidinous
Pathetic sad characters
Figures of fun
Dishonest excuse: hiding behind
‘psychobabble’ or doctors
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Negative
attitudes to people with mental illness start at playschool
and endure into early adulthood: one cohort confirmed the
same prejudices on re-examination eight years later (Weiss,
1994). Green et al (1987) measured
consistently negative public attitudes at five
separate points over 22 years. These studies, and that
quoted above from Huxley (1993), directly contradict a
recent claim (stated but unreferenced) that "public
perception of psychiatric disorders will change:
improved understanding of the causes and mechanisms
of disease is likely to reduce stigma" (McGuffin
& Martin, 1999). Accepting the low value most
cultures attach to mental disorders, are there any
qualities in stigmatisers that could be altered to
reduce overall levels of stigma? Adorno et al
(1950) have hypothesised about the likely make-up of prejudiced
people: they have an intolerance of ambiguity, rigid
authoritarian beliefs and a hostility towards other
groups (ethnocentricity). Other studies of the
attributes of those who are more likely to produce
negative evaluations of stigmatised people found no
relation to "conventionalism", but did report an association
with a "cynical world view" (Crandall
& Cohen, 1994).
Knowing
someone who has a mental illness is not associated with
more enlightened attitudes (Wolff
et al, 1996a), but Huxley (1993)
identifies that the key factor is direct contact with
people who have had "helpful treatment for episodes of mental
illness". The challenge, listed in the third section of
Box 3,
is to confront the stigmatiser with his or her irrational
beliefs, in addition to enabling direct contact with "one
of them". This may seem an unrealistic aim, if the
prototype stigmatiser conjures up images of
shaven-headed boot-boys, but any list of stigmatisers
includes landlords, employers, insurers, welfare
administrators, housing officers, universities, health care
professionals, lawyers, prison workers and teachers.
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Box
3.
Factors which influence the prejudice of stigmatisers
Factor type Example Likely to increase
prejudice
Attribute of stigmatised Gender Male gender
Appearance Unkempt appearance
Behaviour Acute illness episode
Financial circumstances Homelessness
Assumptions about the individual's disorder
Perceived focus of illness Many deficits
Perceived responsibility Not responsible for actions
Perceived severity History of hospital
admission
Knowledge base about particular disorder
Perceived origin Self-inflicted
Perceived course Incurable/"chronic"
Perceived treatments "Needs drugs" to stay
well
Perceived danger Criminality or violence
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Levels of intervention |
The starting point for all target groups and at every level
is education: to date, the Changing Minds campaign
has succeeded in its requests to medical journals to
publish articles on stigma. These articles, including
the excellent Lancet series (Lancet,
1998) have provoked discussion within professional
circles, and beyond. Psychiatric Services and
the UK-based Journal of Mental Health have
been major forums for research and debate on this
subject, and more recently the Psychiatric Bulletin
has featured a number of key articles. Other professions –
nursing, occupational therapy and social work – have been
writing about these issues for far longer and in greater
depth than psychiatrists. Publications in the lay
press circulate the arguments to a wider audience.
The Internet is already a highly effective means of
distributing information and specific anti-stigma
initiatives, and readers can access details of Changing
Minds and other campaigns through
www.rcpsych.ac.uk. and
www.irishpsychiatry.com. Stigma and its sequelae
should achieve a prominent place on the curriculum of
all health service professionals and their students.
The latter group will be the decision-makers of the
next millennium and will either initiate further social
psychiatry research or make the same mistakes as
their predecessors.
Wolff et
al (1996a,b) have provided a practical working
model for interventions aimed at various target
groups (see Box 4).
One aspect of this is to listen to the concerns of the
people whose attitudes you wish to change. Young
couples with children have specific fears that need
to be addressed, and in this group, reductions in
levels of fear can be achieved with educational
interventions (Wolff
et al, 1996a). Other settings, for example
schools, workplaces and welfare services, will require
different information packages tailored to their
needs. The content of these interventions should
include the components of established psychoeducation
modules, the stigma–discrimination paradigm (a
prototype presentation is available at
www.rcpsych.ac.uk) and information specific to
the needs of the target group.
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Box
4.
Key suggestions for educational interventions: after
Wolffet al (1996a)
Specific target groups, with prior identification
of their attitudes
No
evidence of community backlash
Flexible public education packages
Small groups work better
Several interventions over time exceed the
sum of their parts
Continuing contact with the group (keyworker)
maintains momentum
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Mental
health professionals need to move beyond teaching
psychoeducation in isolation (at the clinic) to full
participation in planned programmes of public
education (see Box 5).
Every intervention must convince its target group of
the importance of stigma/discrimination, challenge
stereotypes in ourselves and others, and pursue the
ongoing task of unravelling the nature of prejudice. These three
separate tasks are summarised in the Changing Minds
slogan: "Stop, think, understand".
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Box
5.
From psychoeducation to public education
Patient Person
Family Target group
Network Community
Advocate group Society
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Closing the
knowledge gap is only part of the answer. Stigmatisers,
as a rule, are unlikely to volunteer to attend educational
packages. Even assuming the message reaches all
targets, education alone cannot change centuries of
folklore and prejudice. The "carrot" of education
must be accompanied by the "stick" of challenges to
media misrepresentations, positive discrimination in the
workplace, test cases in the courts, and legal sanction
through (for example) the Disability Rights
Commission. In this regard, lessons can be learned
from AIDS foundations and the gay community, who met
the challenge of initial public antipathy to AIDS, and
who have now achieved the dual goals of health promotion
and major reductions in discriminatory practices (Thompson
& Thompson, 1997).
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Changing psychiatry first |
Ask yourself the following questions: could you give a talk
about stigma next week? What have you done to reduce
stigma and discrimination against your patients? Is
stigma on the undergraduate curriculum of your
university, or something about which your trainees
have formal teaching? It is not just that psychiatry
has a shameful history in its contributions to modern-day
misconceptions about mental illness (see Box 6),
but that it has also failed to address its current
deficiencies. None of the standard British psychiatry
textbooks cites "stigma" in their indices. There is a
dearth of psychiatric research on stigma and
discrimination, and a perennial resistance to rocking
the stigma boat. Wolff et al (1996a)
described their failure to achieve ethical approval
for their study in London, and also described staff
preconceptions that it would draw attention to the
patients' problems, making integration locally more
difficult.
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Box
6.
A history of dumb ideas in psychiatry
Moon
(lunatic) and womb (hysteria) theories
Technique of persuasion
Epileptic personalities
Mental and moral defectives
Eugenics (Ernst Rubin)
Insulin coma treatment
Frontal lobotomy
Momism, schizophrenogenic mothers, Schism &
Schew families
Treatments for homosexuality
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Many
psychiatrists share the stereotypes described above. Lewis
& Appleby (1988) reported that psychiatrists reacted to
vignettes differently if the person had been given the
diagnosis of a personality disorder: once labelled,
primary diagnoses differed and value judgements (e.g.
"manipulative", "does not merit NHS time", "unlikely
to improve", "likely to annoy") appeared more
frequently. Antipathies to psychiatry and psychiatrists
are widespread among the medical profession, but perhaps
the real issue is that the majority of psychiatrists
fail to challenge these prejudices. This failure to
respond, be it acquiescence or resignation, cannot
continue. The impetus to challenge ageism did not
come from medical gerontology, but was later championed
by that speciality. Radical action within and outside
psychiatry is now required.
Dubin & Fink
(in Fink & Tasman, 1992) describe how psychiatrists
perpetuate many concepts underlying biased and stigmatising
attitudes, and suggest that the way in which psychiatry is
structured maintains the status quo. Eisenberg (1995)
has criticised the highly charged ‘either/or’
discourse that mental diseases are either
biological/’no one's fault’ or psychological/"caused
by" parents, spouses or patients. Silence on these
issues is no longer tenable: for all aspects of stigma
and discriminatory practices, psychiatrists need to
complain more often and more effectively – media
coverage is a good starting point (Hart
& Philipson, 1999). For psychiatrists, the debate
goes beyond stigma. It includes the quality and structure
of existing services, and the barriers that deny access to
them (Thompson
& Thompson, 1997). Compliance is one example where
both a concept, and the theories underlying it, are in
need of a radical change in mind set. Brandon (in
Read & Reynolds, 1996) has provided a number of
suggestions for change among psychiatrists,
principally abandoning the "them and us" mentality.
Crepaz-Keay (in Read & Reynolds, 1996) sums up the
(stereotypical) psychiatrist's reactions to
advocates: "But you"re not like my
clients" or "Who do you represent?".
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Practical stigma management |
If every psychiatrist left rehabilitation to the rehabilitation
team, there would be no rehabilitation. Equally, if every
psychiatrist leaves "the stigma issue" to the
Changing Minds campaign, there will be no
enduring change. Psychiatrists should address stigma
as a separate and important marker in its own right. Because
of the nature of stigma, patients are unlikely to bring it
directly to the attention of the mental health team.
Clinicians should ask about the nature of adverse
experiences, discrimination, the extent of social
networks, self-image, etc., and incorporate these
issues into the treatment plan. Acknowledging the existence
of prejudice is an essential first step, and is no more
"dangerous" than enquiry into suicidal ideation.
There may be a specific focus of adverse experiences
(bullying at work or school, family difficulties), or
ways in which the patient can alter others" reactions
to him- or herself (see Box 3).
The patient needs to construct these stigmatising
experiences as part of a generalised prejudice in
society, allowing the possibility of overcoming his
or her own difficulties. Alongside this, the clinician will
gain in adding to his or her existing knowledge of the
patient's social context and learning more about
stigma.
Schizophrenia presents unique challenges. Lack of insight is
always problematic, but an affective component can be
associated with denial of symptoms or rejection of
treatment at key points in the illness. The life
events model contains many events that could be
precipitated by stigma-led experiences: losing a job,
a home or a friendship. It is about humiliating and devaluating
experiences, and these play an important part in relapses
of depression. Equally, the central roles of
vulnerability, destabilisation and restitution
factors have a bearing on outcome. Pessimism in the
profession may also negatively affect patient perceptions
here: for years, the chronic social breakdown syndrome of
long-stay patients was seen as an integral part of
schizophrenia (Eisenberg,
1995). Given that at least 50% of people with
schizophrenia have significant social skills
deficits, any programme must include improving
interpersonal skills. A symptom-focused approach that
includes stigma management can be incorporated into an
existing cognitive–behavioural model of treatment (Enright,
1997). A comprehensive list of social obstacles
to successful de-institutionalisation has also been
described (Farina et al, in Fink & Tasman,
1992).
With the
possible exception of some patients with Alzheimer's
dementia, patients need to know their diagnosis and what the
problems are and are likely to be. Just as adverse public
attitudes endure over time, the adverse effect of
stigma on individuals' well-being persists from entry
into treatment up until a year after successful
treatment (Link
et al, 1997). Cognitive–behavioural
therapy (CBT) is now of proven efficacy across the spectrum
of mental disorders (Enright,
1997): its core strategy is disseminating
information about the illness. Holmes & River (1998) have
outlined a CBT approach to combating stigma in
individuals. Their article is one of seven similar
articles in the Winter 1998 (vol. 5) issue of
Cognitive Behavioural Practice.
The next
step in management is to transform the person from
patient to advocate. Part of coping with stigma is fighting
stigma. A recent Royal College of Psychiatrists' Council
Report lists many different kinds of advocacy: self,
peer-group, legal, carer and citizen (Royal
College of Psychiatrists, 1999). In joining an
advocate group, the dangers of a "them and us" situation
arise. Certainly, not everyone who experiences mental
illness needs the companionship and validation of
others who have had similar experiences. But if the
advocate group includes contacts with partners,
friends and families, along with community groups,
civil rights activists, campaigners, even (sic) mental
health professionals, then it will be a valuable
experience. The College, in the same report, issues a
formal policy directive on advocacy, broadly
welcoming it, and recommending early exposure to it
for its trainees. Fisher (1994) identifies empowerment as
essential to recovery from chronic disability. The
relationship between psychiatry and the advocacy
movement is not a one-way street. In the past three
years, these are the learning experiences that the
author has encountered at advocates' meetings:
-
an
architect objecting to her work colleagues' constant
references to a psychiatric unit they were
designing as a "nut house" or "psycho depot"
-
an
insurance executive, with a remote history of
mental illness, challenging the loading of his
insurance policy – by his own firm
-
a nurse,
following an episode of depression, insisting on
returning to the intensive care unit
and not, as suggested, to a convalescence ward
-
a
medical student challenging the Dean to show the
same flexibility with mental illness
as he had previously shown with physical
disability
-
a
teacher with bipolar disorder encouraging the schools' board
to include information on this illness on the
curriculum
-
a
footballer insisting his team play the local
psychiatric unit
-
a
newsagent offering to keep newspaper cuttings to facilitate
a local initiative on negative media coverage of
mental health issues
-
a
parent's description of services as "supermarket
psychiatry"
-
a man
who had recovered from an episode of depression,
objecting to a public education campaign that
would include schizophrenia and
depression together: "Why drag depression down to
the level of the gutter?"
-
a
consultant psychiatrist, on hearing an articulate
account of schizophrenia from a woman
living with the illness, "Then she couldn"t be
schizophrenic".
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Future directions |
It is difficult to predict the progress over time of a variety
of existing anti-stigma initiatives. Media coverage of
these interventions will be essential to disseminate
positive mental health messages, while challenging
current misrepresentations. Regardless of the means
(education, legal remedies, health service changes),
the end is to promote social inclusion and reduce
discrimination. The nature of that discrimination will change
as the practices of discrimination are successfully
challenged: the task is to identify prejudice in
whatever context. Examination of the achievements of
other anti-discrimination movements leaves mental
illness stigma as one of the last prejudices. A prerequisite
must be to continue listing discriminatory practices from
different perspectives. In some instances, for
example the current practice of psychiatric
assessment of candidates for organ transplantation,
psychiatrists are already part of the discriminatory culture,
and must rely on others to highlight injustice. Double
discrimination, the coincidence of mental illness and
ethnic minority status, is another area where
psychiatry on its own will not effect change (Browne
in
Heller et al, 1996). Psychiatry in these and
other areas must collaborate with other fields in
identifying problems and effecting enduring
solutions.
All
available evidence confirms the value of local initiatives,
and that means your active participation. Which
would be worse – the widespread reduction of
prejudice against people with mental illness without
the participation of our speciality, or the
maintenance, through disinterest, of the status quo?
Please send
new ideas for combating stigma to: Liz Cowan, Changing
Minds Campaign Administrator, Royal College of
Psychiatrists, 17 Belgrave Square, London SW1X 8PG.
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Multiple choice questions |
-
With
regard to an individual's experience of stigma:
-
he
or she can do little to change the reactions
of prejudiced people
-
most
psychiatric patients will complain directly to
their doctors of the effects
of stigma on their lives
-
the
experience of self-stigmatisation can
be similar to negative automatic
thoughts or the negative cognitions described in
depression
-
patients with either alcohol problems or eating
disorders are each more likely to
be blamed for their conditions than other
patient groups
-
courtesy stigma refers to strangers feeling
pity for an individual.
-
The
following statements are true about people who
hold prejudiced attitudes:
-
knowing someone with mental illness is
associated with more benign attitudes
to people with mental illness
-
people who do not blame the
individual with mental illness are more
likely to get involved in
anti-stigma initiatives
-
women show more benign behaviours
to the stigmatised than men
-
parents with young children tend
to show a greater understanding of the links
between mental illness and violence
-
direct contact with someone who has acute
psychosis helps generate greater
understanding later on
-
Regarding research on the effects of stigma:
-
the
majority of research has been carried out by
psychiatrists
-
there has been a marked increase in
stigma-related publications over the past 10
years
-
stigma management is a concept first devised
by social workers
-
telling people they have schizophrenia is
associated with an increase in
suicidal behaviour
-
teaching patients about the nature
of bipolar disorder reduces the number
of manic relapses and improves social
functioning overall.
-
With
respect to stigma and the course of the illness
and its treatment:
-
social isolation is associated with a longer
duration of depression
-
general practitioners do not perceive themselves as
being involved in the care of
their patients with serious mental illness,
particularly if they are Black African, Black
Caribbean, or male
-
studies of people who had contact with psychiatric
institutions (USA), compared to controls,
show median ages of death of 66 and 76
respectively
-
measuring the attitudes of health professionals,
patients with anorexia were seen as
significantly "less likeable" than patients
with schizophrenia, and as being responsible for
their illness
-
since the publication of Goffman's Stigma in
1963, psychiatrists have been at the
forefront in campaigns to identify and
abolish stigma.
-
Research
on community attitudes to mental illness (Green
et al, 1987) show:
-
little or no change over 22 years in negative
attitudes to mental illness
-
attitudes to people with individual mental
illnesses have shown more
understanding as knowledge increased,
alongside phased community care
-
‘psychiatrists’ are held in
equally high esteem to ‘doctors’
-
to
be an "ex-mental patient" carries a
number of low positive ratings
-
stereotypical beliefs, such as "dangerous",
"worthless", "weak" and "foolish",
have persisted to the same degree over 22 years.
MCQ answers
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Byrne, P.
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Crandall, C.
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