Origins of self advocacy discourse by Jan Wallcraft


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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.

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Origins of self advocacy discourse by Jan Wallcraft

  1. 1. Origins of self advocacy discourse Dr. Jan Wallcraft CEDARE University of Wolverhampton
  2. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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.
  14. 14. 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.
  15. 15. 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
  16. 16. 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
  17. 17. 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)
  18. 18. 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.