How does psychiatry contribute to stigma
Diana Rose
I would like to thank the organisers for inviting me to give this talk. It
is a great honour although I don’t think everything I have to say will
commend me to the psychiatrists in the audience. The talk is about
how psychiatrists might contribute to stigma and it is resolutely from
the service user’s point of view.
I am the co-director of the Service User Research Enterprise (SURE)
at the Institute of Psychiatry, King’s College London. Our team does
research from the service user perspective putting the voice of the
service user into debates about mental health. Most of us have been
or currently are users of mental health services and thus we have
‘insider knowledge’ which we use in our research.
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Here is an overview of my talk. I will argue that mental health
professionals can contribute to stigma: unintentionally, tacitly and
overtly. Then I will go on to talk about normalisation. There is a very
weak evidence base for this. For example, I did a search on three
databases with the keywords ‘psychiatry’, ‘diagnosis’ and ‘consumer’.
This search retrieved no hits. There is work on how mental health
professionals contribute to stigma (Lauber, Thornicroft) but this is
aimed at professionals. What I want to talk about is the service
user’s point of view.
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This talk Is not meant to be a personal attack although not all
psychiatrists are angels. It is also not an ad hominem argument. I
am talking about systems which position people in certain ways and
put constraints on what they can and cannot do.
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How doe psychiatrists unintentionally contribute to stigma? I think the
best example is diagnosis. Some people experience diagnosis as a
relief. There is evidence here from the work of Johnstone who did a
small qualitative study with people with a diagnosis of personality
disorder. Some of her participants expressed relief. We know that if
something is chaotic and unspeakable then giving it a name renders
it less fearful. But Johnstone also found that some people reject their
diagnosis. They comprehend an attribute and reject it thus rejecting
the whole category. For instance, someone given a diagnosis of
schizophrenia may reject it on the grounds that they have never been
violent. In the INDIGO study, more than half of the people
questioned said that their diagnosis had been a hindrance rather than
a help (Thornicroft et al, 2009).
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A diagnosis can serve as what Goffman calls a ‘master status’. It
reduces the person to their diagnostic category so that all their other
attributes disappear and the diagnosis becomes their core identity
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both for mental health professionals and themselves. This process is
sometimes called ‘reification’.
Diagnostic categories can become ‘sticky labels’. Once you have it
you cannot get rid of it.
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Things are rather different in Early Intervention services which try to
avoid stigmatising labels. In particular, they avoid diagnostic
categories although they still use the language of symptoms. But I
think this is an advance. Many service users are happy to use the
term ‘psychosis’ but not a category like ‘schizophrenia’. Again, when
someone moves form an EI service to adult services it is likely that a
category will be assigned.
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As well as the problem of diagnosis as such, there may be a
tendency for mental health professionals to reduce everything to
symptoms. We can take the example of domestic violence which is
more common amongst service users than amongst the rest of the
population. There is a poster at this conference. Service users who
experienced domestic violence reported in interview that sometimes
they were simply not believed. A mental patient makes things up.
Others reported being seen as weak, this being the putative reason
why victims did not leave the abuser.
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So what should we call ourselves? There is no consensus on this.
Many people, including mental health professionals, no longer use
the term ‘schizophrenic’ but talk about ‘people with schizophrenia’.
Interestingly, many service users with a diagnosis of bipolar disorder
are happy to say ‘I am bipolar’ although they prefer that the word
‘disorder’ is not added. This seems to be because it is preferable to
the old term ‘manic depression’ with its overtones of ‘mania’ playing
into the hands of the worst representations in the tabloid press.
Some service users simply use the terms ‘people with a diagnosis’
declining to be specific and indicating simply that a diagnosis has
been assigned.
For service users, these changes in terminology are often associated
with a rejection of a biomedical approach. But not all groups reject
this. The neurodiversity movement embraces the biomedical model
wholeheartedly. People here will say ‘I am an autist’ and ‘every brain
is a beautiful brain – mine is just different – get used to it. These
issues are not resolved.
It has been put to me that this is all a matter of political correctness.
But I don’t think so. This is service users struggling to find a
language which matches their experiences. Often diagnostic
categories do not do this and so there is a dispute about how
appropriate they are.
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Mental health professionals can also contribute to stigma and
discrimination in a more tacit way. The ward round or case
conference do not give patients all the available knowledge.
Knowledge remains esoteric. Patients are excluded from information
about themselves. People know this and cannot understand why
some things need to be kept from them. What are they hiding from
me? It must be something dreadful. This is in contradistinction to the
badge of some service users ‘nothing about us without us’.
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Mental health professionals can discriminate overtly – what my friend
Rachel Perkins calls the ‘you can’t phenomenon’. You can’ get a job,
get married etc etc. People can believe these things. It happened to
me. After I was medically retired from a teaching job I was told by
services that I should never try to work again as it would bring on a
relapse. I believed this until I was so frustrated at living in the
community that I took another degree and looked for work. I do have
relapses but then I had relapses when I was a community mental
patient as well. My employers are very good about this. Ii don’t think
I experienced shame or lack of hope, I just believed I shouldn’t run
the risk of taking a job. In other words, this was not a matter of selfstigma.
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It is often said that people with mental health problems avoid services
because of the associated stigma. On the other hand, it may be that
the ‘help’ is not seen as helpful. This is particularly the case if people
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have been in touch with services in the past and have experienced
treatments that they found unhelpful or worse. I would argue that
often it is the experience of services and not stigma that keeps
people way from them.
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Mental health service users are the only group, amongst all medical
specialities, who can be detained against their will and subject to
treatment under compulsion. This can mean that people stay away
from services until their distress reaches such a point that they are
compelled. In a retrospective study, Priebe et al questioned people
who had been detained one year after this to gain their views on
whether or not their detention had been justified. 60% said it had not.
This is a very high number and the study had a large number of
participants.
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There is a strong move in mental health services towards recovery
and hope. Will it change all the things I have been talking about?
Will stigma on behalf of mental health professionals be reduced? Or
will this just be one more thing that professionals ‘do’ to their
patients? Some service users – including a very close friend of mine
– are terrified of the recovery discourse. Some would say that the
recovery discourse has been usurped by professionals. It was
service users who invented it.
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I would just like to say a word about normalisation. Anti-stigma
campaigns rest on the argument that patients are ‘just like you and
me’. This is particularly evident in social marketing campaigns. The
argument about normalisation was first applied to people with
learning difficulties with the aim of skilling them up to blend into the
wider society. So, how does this apply to people with mental health
difficulties?
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To put it bluntly, we are often seen as a bundle of deficits: cognitive
deficits, emotional deficits and behavioural deficits. These, according
to mental health professionals are to be ‘corrected’ with rehabilitation
techniques which will normalise the person. However, this can make
the recipient of these techniques feel completely inadequate. We are
in need of ‘correction’.
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Nevertheless, there are good things about normalisation strategies.
Psychiatry could work together with self-help groups who know about
the condition ‘from the inside’. It could help people to build selfconfidence. It could help people show to the outside world that
service users can lead fulfilling lives. There should be no more ‘you
can’ts’, we need to build on strengths. Mental health professionals
should encourage this and so should service users.
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However, normalisation strategies have their downsides. They have
a very restricted notion of what is ‘normal’. Treatments can increase
a sense of inadequacy or lead to feelings of failure. Even
psychological treatments can have side effects as showed in one
study (Rose et al, 2008).
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We are a diverse society here in the UK. We have people from
numerous different countries, we have a thriving feminist movement
and also a movement of lesbians and gay men. Could we add mad
people to this list so that we are celebrated for our difference instead
of being discriminated against? This is the aim of a movement called
‘Madpride’ which exists in different countries at the moment. It is light
years away from standard psychiatric discourse.
Difficulties
However, as everyone in this audience knows, mental health service
users are the most stigmatised of all groups. It is a huge task to
make madness acceptable to society. I suggest we try. We should
struggle for acceptance and not restrictive normalisation.
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What would we have to do to achieve this? There are some
differences for people with mental health problems especially for
people with psychosis. Some of these are iatrogenic being the side
effects of medication such as obesity and diabetes. Psychiatric
patients are mostly poor people. This means that they cannot afford
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new clothes and so look different. I want society to become tolerant
of these things and we need your help. But the balance of power
must change. Service users are not in a relation of equality with
professionals. Professionals want their own domain. The worst
example I have seen of this is the argument of E Fuller Torrey who
seems to think that society is correct to stigmatise psychiatric patients
because they will never play a full role in society.
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So what is discrimination anyway? I think the term has become
bland. It is an assault from the outside including from mental health
professionals. Different people react differently to such assaults and
certainly not always passively. Perhaps some people do internalise
stigma. But others are street wise – making conscious decisions, for
example, about whom to disclose to and whom not.
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My conclusions are simple. Mental health professionals should be
reflexive and examine their own practices. I hope I have given some
pointers to how this could be done. Psychiatric patients need to be
part of a dialogue here so that conditions are improved for everyone.
Thank you for listening.
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