Pathological Selves: Hearing Voices and De-subjectivation

1. Pathological Selves: Hearing Voices and De-subjectivation

2. Outline • How do people negotiate pathological identities? How do people manage the assumption that their life is not worth living? The label of a pathological identity? • What does it mean for people’s identity and what are the implications for their selfhood, in living a life that society thinks shouldn’t be lived, is unworthy of being lived?

3. Labelling theory – effects of labels on identity; • Positive – provides an ‘explanation’ for behaviour, access to special services • Negative – stigma of label, discrimination because of illness • ‘Looping effect’ (Ian Hacking) – moves on from labelling theory • Constantly being made and remade through classifications • Classifications (such as ‘schizophrenia’, depression, ADHD) effect how people understand and recognise themselves, and how they interact with the world on the basis of these classifications. • Positioning – • people draw upon particular discourses in context-dependent ways. In doing so they position themselves, and are positioned, by discourses, with the view that such positioning exposes them to societal knowledge associated to the position they occupy (see HARRÉ [1998] for broader explication of positioning theory). People who receive a diagnosis of schizophrenia are exposed to societal knowledge regarding that classification, and subject to institutional practices associated with it, namely, psychiatric services, and the illness/medical model they mostly work within’.

4. Diagnostic Identities Tucker, Ian. (2009) “This is for Life”: A Discursive Analysis of the Dilemmas of Constructing Diagnostic Identities, in Forum: Qualitative Social Research (FQS), Vol. 10, No. 3, Article. 24 (online) ‘Far from perceiving identity as a stable cognitive entity, discursive models have considered identity as produced through interactional "work". The everyday business of discursively producing knowledge is the practice of "doing" identity work’. (p2) [compares theories of identity as fixed to those where it is malleable, dependent on context and multiple] Diagnosis can have important consequences for identity How we are produced but also produce ourselves in relation to particular categories and diagnoses – demands that we speak of ourselves in particular ways (i.e. to gain access to resources, services, medication etc). ‘This raises questions such as "what does it mean to enter a diagnostic category of schizophrenia, and how are such categories taken on and re-worked through the localised concerns of individual service users?"’ (p2)

5. Dilemmas Construction of diagnostic identities as dilemmatic; A dilemma of ‘seeking to account for distressing events in one's life whilst recognising that a psychiatric explanation brings with it identity-threatening connotations’ (Ticker, 2009: p9) ‘For the people who receive psychiatric diagnoses, the process of categorisation can become an important means through which they become socially visible’. (p2) Important for claiming resources, benefits, special education etc But a diagnosis can be threatening to the formation of a positive identity; ‘An issue with psychiatric diagnoses is the potential pervasive nature of their power to form identities that exist across multiple contexts. Whilst identities can be transient and multiple, differing according to context, diagnostic identities can have the power to be the dominant identifying feature in multiple contexts, and become the prime identifying feature’ (KNIGHT et al., 2006; PINFOLD et al.,2003; SCHULZE & ANGERMEYER, 2002). For example: medical records stay with you through life, can be seen by employers etc

6. Ben’s Dilemma Extract 1 Ian: mm (2) what about your diagnosis then? Have you always agreed with it? Ben: well I always knew there was something wrong cos you don't hear voices for (.) no apparent reason (I: mm) (3) and I kept, when wh..wh..when they didn't diagnose me at first (.) I kept saying you know (.) I know there's something wrong (I: mm) (1) and then when it was, the diagnosis was given (.) to me it was like (1) finally some closure (.) you know what I mean I..I..I have got something wrong (I: mm) (1) but then I (.) on the other hand it was like schizophrenia (.) I've got to live with that for the rest of my life (I: mm) (1) so it was kind of mixed emotions ... (from Tucker, 2009: p9) Ben ‘was relieved to receive an explanation for the distressing behaviour ("I knew there was something wrong"), but it came at a cost, namely membership of a challenging category’ (Tucker, 2009: p10)

7. Ben’s ‘solution’ Extract 2 Ben: yeah, that's the way I look upon it cos it's not getting any better Ian: but is that Ben: it's not getting any easier Ian: mm (1) have you been told that have you or? Ben: I haven't been told that no I just, my mum's got it, my my real mum, biological mum (I: mm) she's got it (.) she's got schizophrenia, and my uncle has (I: mm) (.) and my biological dad had a personality disorder (I: mm) so (1) there was an increased chance that (I: mm) (.) I'd get it but (.) only by a little (.) so Ian: mm (3) so do you think there's sort of a (.) gene.. genetic element to it then? Ben: yeah (I: mm) (1) yeah definitely (1) sometimes when I'm off on one and I (.) can't come back (1) er (.) come back to (.) society (2) I'll always say, Frances, that's my real mum, shouldn't have had kids (I: mm) (1) cos I'm not going to have kids (.) cos I wouldn't like to pass it on (I: mm) so (1) and e..e...er that's just a decision I've made (.) (I: so you..) I wouldn't like, I wouldn't like to wish this on anyone you know what I mean (I: mm) ... (from Tucker, 2009: p10-11) The ‘solution’ Ben introduces his identity as occurring due to his family history and genetics – biological determinism. This counters seeing the ‘problem’ as psychological or due to Ben’s social environment. It suggests Ben is not personally responsible for his diagnosis. ‘This again points to the dilemmatic nature of identity for Ben, to retain a sense of agency requires very difficult and potential negativising decisions to be made (i.e. not having children).’ (Tucker, 2009: p11).

8. Constructions of dangerousness A diagnosis of ‘schizophrenia’ is particularly dilemmatic because it is associated with violence and being a danger to self and others ‘Examples were seen of some of the difficulties in presenting oneself as a service user with a diagnosis of schizophrenia. Crucially, this involved seeing diagnosis as positive in terms of providing an explanation of distressing mental health difficulties. But recognising that with the initial relief of diagnosis came a subject position exposed to negative factors (e.g. "diagnosis for life", and connotations of risk).’ (Tucker, 2009:15) Media monopoly on constructions of particular identities: Media reports involving schizophrenia very often link people diagnosed to notions of risk and violence (Harper, 2002) Public understanding of schizophrenia is ‘overly informed by media reports that disproportionately produce negative, violence related, coverage of schizophrenia.’ (Tucker, 2009: p16) Those constructed as dangerous are not regarded as subjects, they are ‘humans who are not conceptualised within the frame of a political culture in which human lives are underwritten by legal entitlements, law, and so humans who are not humans’ (Butler, 2005:77)

9. Politics of Grievability • ‘Who counts as human’? • ‘Whose lives count as lives’? • ‘What makes for a grievable life’? (Butler, 2005: p20) • What frames of recognition govern what we understand and apprehend as a ‘life’? (Butler, 2009)

10. The ‘Ashley Treatment’ Ashley Treatment - http://www.youtube.com/watch?v=YDCA6a9WDFc Ashley developed static encephalopathy shortly after being born, meaning that at ‘six years of age, the child was still at the developmental stage of an infant, both physically and emotionally’. Her parents noticed signs of accelerated growth and proposed to their Doctor that they further accelerate her growth to minimise her adult height and weight. Under the agreement of the hospital ethics board, doctors performed growth attenuation therapy and surgery in order to ‘significantly elevate Ashley’s adult quality of life’. In their online blog about Ashley, her parent’s explain, ‘The Ashley Treatment is the name we have given to a collection of medical procedures for the improvement of Ashley’s quality of life. The treatment includes growth attenuation through high-dose estrogen therapy, hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and the associated discomfort to Ashley’. The issue that has emerged as particularly problematic in debates around the ethics of this procedure is the notion that it is ‘acceptable to render disabled children's bodies “more convenient" for care givers’. However Ashley’s parents have reacted against accusations that the procedure was carried out to make their lives easier in caring for Ashley, and firmly state that it was done to alleviate unnecessary suffering on their daughter’s part. They say that, ‘given Ashley’s mental age, a nine and a half year old body is more appropriate and provides her more dignity and integrity than a fully grown female body’. The ‘Ashley Treatment’ has been recommended in medical journals as a viable ‘treatment’ option for other children who are ‘developmentally disabled’. In fact Schmidt (2007), one of the doctors making this recommendation, asserts that; ‘a developmentallydisabled child may have only a minimal right against interferencewith her growth. In those instances, parents may be acting ethicallyif they use medical interventions to inhibit the growth of theirchild for the purposes of facilitating better care. But theymay so intervene only when the child's disabilities are so profoundthat the child has no personal interest in developing an adultsize’. References Protecting disabled children's right to bodily integrity. HealthLawWeek (2010)http://www.allbusiness.com/society-social/families-children-family/14160671-1.html See Ashley’s parent’s online blog: http://ashleytreatment.spaces.live.com/blog. Accessed 11/10/2010 Schmidt, E B. (2007) "Making Someone Child-sized Forever?: Ethical considerations in inhibiting the growth of a developmentally disabled child" Clinical Ethics 2 (1): 46-49.

11. a young disabled man who was admitted to hospital with pneumonia. When his parents arrived at the hospital their son had not been given oxygen and "Do Not Resuscitate" had been written on his notes. (Human Rights Joint Committee, Memorandum submitted by Scope, Parliament.co.uk, 2009) Within this normative framework, even death may be considered in a disabled child’s ‘best interests’.

12. ECT: De-subjectivation and life not worth living • A new approach recently developed in the USA for ‘correcting the ‘behaviour problems’ associated with autism provides a glimpse into how such constructions and justifications of’ treatment’ take place.[1] Here an eight year old boy who performed self-injurious behaviour constructed as ‘not responsive to treatment’ was given a course of Electro-Convulsive Therapy (ECT) as a last resort. The fact that this course of ‘treatment’, involving 15 sessions of ECT, reduced his self-injury is thus seen as a justification to develop this ‘therapy’ for use on more children with autism. • claims that the ‘life of a disabled person is not worth living unless an intervention or accommodation raises their existence to an acceptable “quality of life”’, even if this intervention itself causes injury. [1] D. Chieco, 'Case Study Suggests New Therapy for Autism' (2009) The John Hopkins News-Letter.

13. ‘Outside’ Normality • Another production of life not worth living is to medicalise experiences that may have their origins in the social environment. • The decontextualisation of people’s lives and experiences through diagnosis may divert attention from the meaningfulness of such experiences, and casts difference as deficit • Behaviour comes to be constructed as apolitical, as if it cannot be understood politically or socially – thus the person is seen to exist ‘outside’ of reason, and as outside the human community (see Judith Butler, 2004: p89). • Certain experiences, such as hearing voices and self-injury, are constructed as ‘outside’ the realm of ‘normal’ human experiences, and so ‘outside’ of human rights (Spandler and Calton, 2009) • Certain subjects undergo a suspension of their ontological status as subjects (Agamben, ‘Homo Sacer: Sovereign Power and Bare Life,1998).

14. Rosenhan experiment – ‘I can hear a voice and it says “thud”’ http://www.youtube.com/watch?v=hqaptRYjhq4

17. ‘The 7 year old schizophrenic’ Jani video from Oprah http://www.oprah.com/oprahshow/Oprah-Meets-a-Child-with-Schizophrenia-Video http://www.oprah.com/oprahshow/Children-with-Schizophrenia-Find-Friendship-Video Major implication in biomedical / neurochemical / psychiatric explanations is that it diverts attention from meaningfulness of experiences and preventing professionals from changing social environments and contesting State conditions and provisions Once framed as ‘irrational’, ‘psychotic’, ‘delusional’ etc people are not listened to, everything they say is constructed as illegitimate by definition. (see Georgaca, 2006, for discussion about the meaningfulness of talk constructed as ‘delusional’)

18. Implications... Children, Mental Illness and the Law children can say yes but not no to medical treatment ‘no minor of whatever age has the power by refusing consent to treatment to override a consent to treatment by someone who has parental responsibility for the minor’ (Lord Justice Donaldson, 1991) a ‘competent child under 16 has the right to say “yes” but not to say “no” to medical treatment’ (Fennell, Harpwood and Ngwena,1992:234). can never be competent if mentally ill she could not have possibly understood the implications of medical treatment because even if she understood on ‘a good day’, her ‘mental disorder’ ‘was such that on other days she was not only Gillick incompetent, but actually sectionable. No child in that situation can be regarded as Gillick competent’ (Lord Donaldson, 1991). that any refusal is framed as irrational and can thus be overridden ‘What is not acceptable is the automatic assumption that refusal is irrational and can be overridden whether or not the patient is competent’ (Fennell, 1992:327)

19. Dear Oprah,We are writing this letter in response to your program about “The 7-Year-Old Schizophrenic”. This concerned Jani, a child who hears voices, and was broadcast on the 6th October 2009. We do so in the hope we can provide a more hopeful and positive alternative to the generally pessimistic picture offered by the members of the mental health community featured in the program, and in the accompanying article on your website. What upset us most and moved us to write the letter, is that, as a result of the program, parents of children who have similar experiences to Jani will be left with the impression that they are powerless and will not be able to do anything constructive to help their children to come to terms with their experience of hearing voices. For it is simply not true that nothing can be done. We say this because we have been researching and working with adults and children like Jani and their parents for the last twenty years, and in doing so have reached very different conclusions from the ones reported on your program. We write this letter primarily for parents and care givers, in the hope that it will enable them to develop a new and more empowering way of thinking about their children's experiences, and that it will help them to find ways to help those children with their emotional development and with recovering from being overwhelmed by hearing voices. http://www.power2u.org/articles/selfhelp/intervoice-letter.html (These alternative understandings of hearing voices not as pathological, but as a response to trauma, and as a personally meaningful coping strategy, will be discussed next lecture)

20. ‘The voices are not (always) the problem, its other people’s reactions’ (Pete) “At first I thought everyone shared this experience, but when I talked to a friend about it she said she had not had this experience and she thought I was strange because she had not heard about anyone who heard voices. At the same time, I thought she was strange because to me hearing a voice was normal.” (comment from a young girl, Children’s Conference , Amsterdam, 1993) “far from being some sinister psychiatric symptom, the phenomenon was probably no more than my own externalised thoughts’…‘it was a useful indicator to me of how I was really feeling” (Ellie) “These very ordinary feelings of adolescent insecurity were immediately interpreted as symptoms of a diseased mind” (Eleanor) “But now something is happening to me that I think people think is abnormal and which I am also seeing as being more abnormal too” (Children’s Conference, Amsterdam, 1993). 

21. Belief ‘The doctors told the other staff not to pay attention to me when I spoke about the voices; they said it would be playing into my delusions.’ (Hadjimatheou, 2009) ‘They did’nae believe things I was saying, they said it was all in my head but I tried to tell them it was real to me, that was what was happening’. ‘I tried to tell people but I was never believed about the abuse. And I sort of shut up and I stopped talking about them. Because nobody was believing me, I stopped talking about the voices’. ‘I think I’d have liked them to believe me about everything…The abuse and the voices because its real to me. I mean I’m not saying they have to say “Oh aye we hear them as well” but if they said well you know “Well I can understand that must be frightening.”‘ (The above quotes are from my research interviews)

22. Marie heard voices for a long time; they helped her and comforted her while her parents sexually abused her. However sometimes they caused her distress, usually a sign for her that she was getting stressed or a reminder that she should tell someone about the abuse she experienced as a child and kept secret for a long time afterwards. After a particularly distressing experience she found herself sectioned, face to face with a psychiatrist. She found the courage and told him for the first time she had ever told anyone that she was abused as a child. He told her she hadn’t been abused and that she was only saying that because she was ill. She made a decision, she knew ‘that this wasn’t somewhere she’d get well’, so she pretended to comply, pretended to agree, nodded her head to whatever the psychiatrist said, in order to get out as fast as she could. (story told to me during research with people who heard voices when they were children, RIHSC, MMU, December 2007-March, 2008).

23. This story highlights the political significance of delegitimising someone’s experiences through rendering them ‘irrational’ and pathological’. When we consider that many children who hear voices have experienced physical and sexual abuse, we are lead to question how the right to their bodily integrity (UN Convention on the Rights of the Child (UNCRC)) is violated yet again through forced ‘treatment’ and detainment by medical professionals, repeating previous traumas that children may have experienced. • Psychiatric consultations and the process of being diagnosed can repeat the initial trauma (the experience that may have led someone to hear voices in the first place) • Thus the unvalued and delegitimated identity keeps being reiterated / repeated by society = trauma • But then initial trauma, i.e. of loss of control, of violation of bodily integrity may also be repeated within psychiatry = trauma • However this constant repetition and re-working of identity does open the possibility for identity to be repeated differently, and more diversely and ethically (see Judith Butler ‘Bodies that Matter’, and Gender Trouble’).

24. Politics of Disposability Judith Butler – ‘precarious lives’ + ‘politics of grievability’ (links to ‘indefinite detention’ and construction of certain kinds of violence as ‘terrorism’, and certain people as ‘illegal combatants’ – who according to the Department of Defense (from 2002) can be detained indefinitely without trial (see Butler, 2005, chap 2) Assume that some people’s lives are not worth living, and are ungrievable in death. Henry Giroux (2009) – those people who are seen as not contributing to the economy (i.e. those who don’t / can’t work) and those who are constructed as an economic ‘burden’ (i.e. people who claim benefits) are constructed as disposable ‘Under the logic of modernization, neoliberalism, and militarization, the category “waste” includes no longer simply material goods but also human beings, particularly those rendered redundant in the new global economy’ (Giroux, 2009: 308) Entire populations are seen as products with no value, ‘they are leftovers in the most radical and effective way: we make them invisible by not looking and unthinkable by not thinking (Bauman, 2004: 27).

25. De-Subjectivation People are then not only constructed as subjects, occupying and negotiating identities such as ‘psychotic’, ‘disabled’, ‘service-user’ etc, they are managed and regulated through their de-subjectivation. Constructing certain lives as ‘unworthy of being lived’ works to de-realize the humanity of certain subjects – so they are no longer seen as people or as humans. Produces ‘the human differentially by offering a culturally limited norm for what the human is supposed to be. It is not just that some humans are treated as humans, and others are dehumanized; it is rather that dehumanization becomes the condition for the production of the human to the extent that a “Western” civilization defines itself over and against a population understood as, by definition, illegitimate, if not dubiously human’ (Butler, 2004:91).

26. Reading Agamben, Giorgio. (1998) Homo Sacer: Sovereign Power and Bare Life. Heller-Roazen, Daniel. (Trans.) Stanford University Press, California. Butler, Judith. (2009) Frames of War: When is Life Grievable? Verso, London. Butler, Judith. (2005) Precarious Life: The Powers of Mourning and Violence. Verso, London and New York. S. Escher, M. Morris, A. Buiks, P. Delespaul, J. Van Os, and M. Romme, 'Determinants of outcome in the pathways through care for children hearing voices', (2004) 13 The International Journal of Social Welfare, 208-222. Giroux, Henry. A. (2007) Violence, Katrina, and the Biopolitics of Disposability, in Theory, Culture and Society, Vol. 24, 7-8, pp 305-309. (online) Lefrancois, B. A. '"It’s Like Mental Torture”: Participation and mental health services' (2008) The International Journal of Children’s Rights, Vol. 16, p.212 (online) LeFrancois, B.A. (2006) "They will find us and infect our bodies": The Views of Adolescent Inpatients Taking Psychiatric Medication  http://radicalpsychology.org/vol5/LeFrancois.html Parker et al. (1995) Deconstructing Psychopathology. Sage Publications, London. (especially chapter 5 ‘pathological identities) H. Spandler and T. Calton ‘Psychosis and Human Rights: Conflicts in mental Health Policy and Practise’ (2009) 8 Social Policy and Society 248. (online) Tucker, Ian. (2009) “This is for Life”: A Discursive Analysis of the Dilemmas of Constructing Diagnostic Identities, in Forum: Qualitative Social Research (FQS), Vol. 10, No. 3, Article. 24 (online)

27. Online resources www.voicecollective.co.uk Information about young people’s experiences of hearing voices / seeing visions, and peer support. www.hearing-voices.org Organisation that raises awareness about hearing voices / seeing visions, promotes alternative approaches, runs self-help groups. www.intervoiceonline.org International resource on hearing voices, including stories and publications. www.madnessradio.net Madness Radio: Voices And Visions from Outside Mental Health brings you personal experiences of 'madness' from beyond conventional perspectives and mainstream treatments; includes interviews with key people in the hearing voices movement (this is a brilliant resource). www.asylumonline.net A magazine and website for exploring ideas of democratic psychiatry and psychology. (The magazines are great and there is an Asylum North-West group that meets in Manchester for discussions, talks by key figures etc – see http://www.facebook.com/pages/Manchester-Asylum/119701104744803 ) http://www.theory.org.uk/ctr-fou1.htm this website has got good resources on identity and postmodernism (with pictures!)