Origins of self advocacy discourse by Jan Wallcraft - a presentation from the symposium on social movements and their contributions to sociological knowledge on mental health at the University of Wolverhampton. Held on 13 June 2014.

1. Origins of self advocacy
discourse
Dr. Jan Wallcraft
CEDARE
University of
Wolverhampton

2. What is a discourse?
Foucault’s approach
• Foucault said ‘I shall take as my starting point whatever
unities are already given (such as psychopathology, medicine
or political economy) but …I shall make use of them just long
enough to ask myself what unities they form; by what right
they can claim a field that specifies them in space and a
continuity that individualises them in time; according to
what laws they are formed…I shall accept the groupings that
history suggests only to subject them at once to
interrogation; to break them up and then to see whether
they can be legitimately reformed; or whether other
groupings should be made; to replace them in a more
general space which, while dissipating their apparent
familiarity, makes it possible to construct a theory of them.
Once these immediate forms of continuity are suspended,
an entire field is set free….’
• Foucault argues that the discourses of psychopathology, for
instance, on melancholia, or neurosis, ‘constituted its object
and worked it to the point of transforming it altogether. ‘
• That is, that the objects described are ‘shaped by measures
of discrimination and repression’…
• He argues that this process happens under particular
conditions of relations between institutions, economic and
social processes, which are outside of the object being
described. In other words, discourses shape the way in
which we view and respond to objects or phenomena.
• (Chapters 1-3 The Archaeology of Knowledge)(Foucault,
1972)

3. The role of physicians
• Foucault argues that the introduction of doctors
to the asylums had less to do with science than
with the introduction of a new personality, the
doctor, ‘whose powers borrowed from science
only their disguise, or at most their justification’.
(Foucault 1971 p.271):
• The science of mental disease, as it would develop
in the asylum, would always be only of the order
of observation and classification. It would not be
a dialogue. (Foucault 1971 p.250)
• The discourse of psychopathology, therefore, was
founded, according to Foucault, on a monologue
of psychiatrists about patients, in which they
were not included. People on the receiving end
of psychiatry have continued to be excluded until
they were able to work collectively to begin to
challenge this.

4. Assimilation of ‘reform’
• Ultimately even the reformers themselves helped to
legitimise the new discourse of psychopathology
(Bynum (1981) by seeking to compromise with
physicians, so that insanity could be recognized as an
illness and the mad be removed from jails and
workhouses and placed in asylums under the care of
doctors. The doctors were concerned that the
writings of reformers such as Tuke undermined the
value of physical remedies for the treatment of
madness, thus threatening the special role of doctors
in the treatment of the mad. Johnstone (2000) shows
that the physicians eventually succeeded in
establishing the hegemony of their discourse by
offering what seemed like a reasonable compromise,
to incorporate moral methods within medical
treatment, though, she implies, this was a dubious
bargain:
• What this did, in fact, was to reduce the status of
moral treatment from a whole philosophy of care to a
mere collection of techniques, while the doctor, as the
only one who understood both approaches, was left
firmly in charge of the whole enterprise. (Johnstone
2000 p.149)

5. Assimilation of ‘reform’2
• The Quaker concept of moral treatment allied to
medical power resulted in a more subtle and
pervasive form of social control than had been
possible before that time. Even Freud’s
psychoanalysis did little to empower the patient’s
own view of his or her condition. According to
Foucault (1971) Freud re-established the power
of language, but not dialogue:
• Psychoanalysis doubles the absolute observation
of the watcher with the endless monologue of the
person watched -–thus preserving the old asylum
structure of non-reciprocal observation but
balancing it, in a non-symmetrical reciprocity, by
the new structure of language without response.
(Foucault 1971, p.250-251)
• The power of interpretation in psychoanalysis,
therefore, remained in the hands of the physician
and available only to those who could afford it,
not to the majority of patients. This situation has
shifted but in some ways has not changed much
even in the days of IAPT. Similar patterns can be
observed now.

6. Physical treatments of
‘psychopathology’
• Innovations in physical psychiatric treatment in
the early 20th century such as insulin coma
therapy introduced in 1934, prefrontal leucotomy
in 1935 and ECT in 1938, followed in the mid-
1950s by major tranquillisers (Pilgrim and Rogers
1993).
• The discourse of psychopathology was
strengthened by these physical treatments and
has remained a powerful force until the present
day.
• The persistence of the infantilising aspect of the
discourse is demonstrated by the frequent
statement in mental health legislation and
psychiatric texts, that patients must be treated
against their will ‘for their own good’ or ‘in their
own best interests’.
• The pervasive discourse of psychopathology has
made it seem as irresponsible not to impose
treatment on ‘mentally ill’ people as for parents
to neglect to feed their children or teachers to fail
to teach grammar and arithmetic to pupils.

7. Psychopathology
rules OK?
• The discourse of psychopathology
established in the 19th century and still
dominating the research field today,
resulted from the self-interest of an
increasingly powerful group, the medical
doctors, who wished to establish their
professional hegemony over the treatment
of a large new group of patients.
• They achieved their goals by redefining this
group as suffering from a set of diseases
which only they had the expertise to
diagnose and treat.
• They were successful in convincing other
powerful interest groups including
politicians and the legal profession to leave
the management of ‘lunacy’ in their hands,
where it has largely remained

8. Discourse of self advocacy
• I have argued that by speaking
out in our own voices in whatever
form we do this, we challenge the
discourse of psychopathology,
formed in the absence of our
voices
• Whatever we have produced in
terms of written and recorded
statements of our own truths is
creating a new discourse or
discourses where we redefine our
lives, experiences, problems,
needs, hopes and futures.

9. Forms of self advocacy
discourse
• Formation of groups and networks to provide
support and advocacy
• Collections of narratives published
• Development of survivor led services – peer
support, self management and training
• Survivor –led research – from small scale and
local to involvement in meta-reviews at SURE at
the IOP(Fleischmann, 2009)
• Chapters in many text books on mental health.
• Reports on the aspects of self advocacy such as
On Our Own Terms (Wallcraft et al., 2003) and
Recovery and Resilience (black women’s
narratives) (Kalathil, 2011)
• Books such as ‘This is Survivor
Research’(Sweeney et al., 2009), ‘Handbook of
Service User Involvement in Mental Health
Research’ (Wallcraft et al., 2009),‘Mental Health
Service Users in Research’STADDON, P. (ed.)
2013. Mental Health Service Users in Research -
Critical Sociological Perspectives: Policy Press.
• and ‘Doctors of Deception’.(Andre, 2009)

10. Self advocacy re crisis
• (Campbell, 1996) lists the main themes
of what mental health service users say
they want in crisis as:
• more of their own control over crisis
situations
• opportunities to learn from a crisis; and
to be treated with respect and dignity.
• He states that though the demand for
twenty-four hour crisis services is
gaining acceptance, there is still a strong
resistance to the notion of non-medical
crisis services, which are seen by the
medical establishment as ‘anti-
psychiatry’.
• He argues for a more open debate on
what is meant by a non-medical crisis
service.

11. Self advocacy – self-harm
(Pembroke, 1994) writes from the perspective of
people who self-harm:
– Many of us would like to see user-led/run crisis
services, where there is a phone number available
to call 24 hours a day, 7 days a week. Where
someone can come to see us at a time of crisis and
offer support at home, or talk over the phone.
– The Bristol Crisis Service For Women operate the
only phone line in the country with a specific
service for women who self-harm. There is a clear
need for self-harm help-lines in every city.
– Many of us want access to short term sanctuary
without diagnosis/’treatment’/drugs/Sections.
Houses with ‘rage’ facilities (a room to smash
things in), where people can go without going
through exhausting admission procedures.
Everyone may need access to this, not just those
of us who seriously self-harm.
– We all have explosive feelings that need to be let
go to stop them from going bad. (Pembroke 1994,
p.53)

12. Self advocacy: ECT
• Linda Andre’s masterful work – ‘Doctors
of Deception (Andre, 2009)– What they
don’t want you to know about shock
treatment’ – combines personal
accounts – her own and others, detailed
socio-technical analysis of the ECT
industry in the US, a history of shock
treatment’s origins in Fascist Italy and in
the Nazi massacre of mental patients
which began the holocaust and a
summation of the moral and ethical
issues about paternalism and informed
choice.
• Andre uncovers the morally biased
‘science’ base underpinning ECT where
PR has been seen as more important
than actual evidence of safety or
benefits, and the experiences of
patients routinely ignored.

13. SELF ADVOCACY DISCOURSE

16. Self advocacy discourse-
key themes
• Human rights-
choices and
freedom
• Equalities and
diversity –respect
for differences
• Reorienting policy
to service user
preferences
• Humanity and
respect from staff
• Integration and
understanding in
wider society
• Right to define
problems and
needs and what
helps
• Recognition of severe
and long term
distress as a human
experience-not a
disease
• Understanding of
effects of trauma
• Reasonable
adjustment in
education and work
• Opportunities to talk
and be heard
• Opportunities to
contribute based on
lived experience
• Not ‘recovery
journeys’ but living
one’s own life – self
definition.

17. Why we need different
discourses
• The biomedical discourse is not fit for
purpose in 21st century patient-led services
– does not frame problems in person
centred ways or address right questions
• Service user involvement is largely
ineffective because we are rarely in a
position to directly challenge the
underlying discourse and its power to
define us.
• We cannot change things effectively until
we can recognise, collate, analyse and
disseminate the discursive products of our
movement and set our facts and
knowledge firmly in opposition to the
‘evidence base’ created around the objects
defined by psychopathology, using their
methods of knowledge creation, which
harm us and limit our possibilities for
growth, wellness +recovery on our terms

18. How strong is self
advocacy discourse now?
• We have a large amount of textual
records of personal experience and
alternative– non-pathologising –
ways of seeing ‘distress’ including
many book chapters and collections.
• We are strengthening and claiming
access to the alternative means of
knowledge creation developed in
sociology, eg narrative work,
participatory action research.
• We have set up some service user
led forms of help eg advocacy, crisis
houses, peer support
• We have strongly influenced many
practitioners

19. Legal and political
challenges
• Challenges to the political and legal
aspects of the discourse of
psychopathology are more difficult
• We do have national and
international bodies – NSUN,
ENUSP, WNUSP – but these are not
always a strong or united voice for
us.
• The strongest current challenge
comes via UNCRPD and this year’s
review of the UK’s compliance with
it. There is an opportunity for a
serious user-led challenge which
allies could support.(UN, 2006)

20. References
ANDRE, L. 2009. Doctors of Deception: What they don't want you to know
about shock treatment., New Brunswick, Rutgers University Press.
Bynum, W. (1981) Rationales for Therapy in British Psychiatry 1780-1835, in
A. Scull(ed.) (1981) Madhouses, Mad-Doctors, and Madmen: The Social
History of Psychiatry in the Victorian Era, London: Athlone Press.
CAMPBELL, P. 1996. What We Want from Crisis Services. In: READ, J. &
REYNOLDS, J. (eds.) Speaking Our Minds. Milton Keynes: Open University.
FLEISCHMANN, P. 2009. Literature reviews: An example of making traditional
research methods user focused. In: ANGELA SWEENEY, P. B., ALISON
FAULKNER, MARY NETTLE AND DIANA ROSE (ed.) This is Survivor Research.
Ross-on-Wye: PCCS Books.
Foucault, M. (1971) Madness and Civilisation, London: Routledge.
Foucault, M. 1972. Archaeology of Knowledge, London, Routledge.
Johnstone, L. (2000) Users and Abusers of Psychiatry, London: Routledge.
KALATHIL, J. 2011. Recovery and resilience: African, African-Caribbean and
South Asian women’s narratives of recovering from mental distress. London:
Mental Health Foundation.
PEMBROKE, L. R. 1994. Eating Distress: Perspectives from personal
experience, Survivors Speak Out London.
STADDON, P. (ed.) 2013. Mental Health Service Users in Research - Critical
Sociological Perspectives: Policy Press.
SWEENEY, A., BERESFORD, P., FAULKNER, A., NETTLE, M. & ROSE, D. (eds.)
2009. This is Survivor Research: PCCS Books.
UN 2006. United Nations Convention on the Rights of Persons with
Disabilities. USA.
WALLCRAFT, J., READ, J. & SWEENEY, A. 2003. On Our Own Terms: Users and
survivors of mental health services working together for support and change.
London: Sainsbury Centre for Mental Health.
WALLCRAFT, J., SCHRANK, B. & AMERING, M. 2009. Handbook of service user
involvement in mental health research, Wiley.