Copyright is owned by the Author of the thesis. Permission is given for a copy to be downloaded by an individual for the purpose of research and private study only. The thesis may not be reproduced elsewhere without the permission of the Author. Changing the Paradigm: reflections on experiences in workshops to reduce stigma and discrimination in mental health services. A thesis submitted in partial fulfilment of the requirements for the degree of Master of Philosophy at Massey Unversity, Aucldand, New Zealand. Ruth Gerzon, December 2001 Massey University ID 07953615 CHANGING THE PARADIGM: REFLECTIONS ON EXPERIENC!;S IN WORKSHOPS TO REDUCE STIGMA AND DISCRIMINATION IN MENTAL HEALTH SERVICES A thesis submitted in partial fulfilment of the requirements for the degree of Master of Philosophy at Massey University, Auckland, New Zealand. Ruth Gerzon 2001 - l - ABSTRACT One of the key objectives of the national Like Minds, Like Mine project against stigma and discrimination associated with mental illness is to work with the mental health sector to change attitudes and behaviour through education and policy development. This action research thesis examines the effectiveness of workshops aimed at reducing the stigma and discrimination within mental health services. Most hospital based mental health services were developed within the ' medical model' based on professional power. Non-discriminatory services are seen to be those that support a ' recovery model ', as promulgated by the Mental Health Commission, which is based on partnership and participation by service users. For many services this requires a change in their culture. This research examines the effectiveness of workshops designed to support such cultural change, facilitated by people with experience of mental illness. Observation, evaluation and reflection on two workshops, and the findings of a literature search informed practices, with new techniques developed and trialled . DEDICATION To people with experiences of mental illness and mental health service staff who hold a vision of services where respect, partnership and participation are a reality. Abstract Contents - II - CONTENTS ............................... . ............... ..... .. .. ..... .... ..... . ............ .. 1 ................ . ........ . ......... . ................................... ....... ...... II List of figures and tables ........ ... ...... ...... ... ................................................ v Glossary ...... ... .. .................... .. .......... ........................................ v1 Acknowledgements ....... ........... .................................................. .......... .. vii Chapter One: The context of discrimination .............. ..... ... .. ..... ........... 1 Introduction ................................. .. ... ..... .............. ..... ... .... . I Stigma and discrimination and mental illness ........... .. ....... 2 The history of stigma and discrimination in mental health services in Aotearoa/New Zealand ...... ....... ..... ... .... . 7 Institutionalisation ............... ......... .... .......... .......... . 7 Deinstitutionalisation ........... ......... ........... ....... ....... 9 Paradigms in health care ...... ..... .. .. ... ........... .... ....... 9 The culture of mental health services ....... ..... ....... 15 New paradigm: moving to a recovery model... ..... 18 The role oftraining ............... .. ............... .. ............ 24 Chapter Two: Leaming and social change Introduction ............ ......... .... ... ........................................ 28 Adult learning ................... .................. ............................ 28 Education and social change ....................... ... ...... 30 Experiential learning ............. .. ............................ 33 Attitude change .......................... ........... ............... ........ ... 36 Lessons from anti-racism education .................... ... ..... .... 39 The centrality of discourse ................... .. ......................... 40 Discourse and racism ......................................... .. 41 Who speaks for whom ........ ............ ...................... ......... . 43 - 111 - Chapter Three: Methodology Action research in the field of education .... ..... .. ....... .... .... 46 Processes ..... .......... .... ..... ....... .. ..... ...... ... ...... .. .. ............. ... 50 Group process .. ...... ..... ........ .. ...... .... ...... ..... ... ..... .. 50 Participants .............. ... ..... ...... .. .... ........ .... ... .. ....... 52 Cultural issues ...... ..... .. ........................ ........... ..... 52 Data collection .... ... .... .... .. .... ..... .. ... ..... .............. .. . 52 Quantitative data .... ................ .................... .. ....... 53 Ethical issues ..................... ........ .... .... ..... ....... ...... 55 Workshop selection ... .......... .... .... ......... .. ..... .. ..... . 55 Participant selection .. ............... ... .... ... .. . .. ...... ..... .. 56 Interview format.. ..... ........ .... ........ ... ..... ............... 56 Conflict oflnterest.. . ............ ... ....... ....... . .... 57 Data analysis procedures ... .. .. .... .... ...... ........... .. .. . 57 Validity Issues ... ....... .. .... ..... .......... .. .. ...... .... ...... . 58 Chapter Four: the cycles of research Issues of facilitator identity ......... ... .... ........ ...... ...... .. ..... 60 Process of inquiry ..... .. ...... .......... .... .. ... ..... ..... ... .. . 61 Workshop aims ....... .. ..... .... ... .. ... ..... ................. . 62 Identity is~ues .. ... ..................................... .. .. ........ 63 Safety and effectiveness .. .................. ... .. .... ... .. ..... 68 Decision .... ... .. ...... .... .. ........... ...... .. ... ....... .... ........ 72 Reflection on previous workshops ...................... ............. 73 Planning for Workshop One .. .. ... .. .......... ...... ....... .. ...... ... 75 Aims .. ...... .... .... ..... .. ..... .. ... .... ......... .... .. .. ............. 75 Literature search .... ........ ............. ....... .. .... ........... 7 6 Resource development ...... ........ ....... ..... ..... ......... 77 Workshop One delivery ............. .. .. ........ .................... ..... 80 Evaluations and interviews following Workshop One .. ... 82 Questionnaire responses ........ ......... ...... ......... .. .......... ..... 81 Evaluation forms .. ....... ...... .. ... .................. ...... ........ .... .. .. 84 - IV - lnterviews ... ..... .... ... .. .. .. ... ... .... .. ....... .... ............ ...... .... .... 86 Reflection and redesign following Workshop One .......... 90 Process ......... .. .... ... ... .. ... ...... ...... ........ ................. 91 Content.. ........... ...... ...... ... ..... ... .. ... ... ... .... ........... 101 Workshop Two Delivery ..... ........... ................... ...... ... .. 103 Evaluations and Interviews follo\\~ng Workshop Two .. 103 Chapter Five: Reflection and redesign ............................ .... .. ..... ..... .. 109 The Recovery Model .. ............... .. ....... .. .... ...... .. 109 Clarifying cultural changes ...... ............. ............ 109 Avoiding dualism .......... ....... ........ ........... ........ .. 111 Credibility ...... ........... ............... ... ...... ............... 112 Resistance and the transtheoretical model ........ . 112 Systemic change ... ... ................ .. .... .......... .. ... .... 114 Conclusion ... ...... .... .................................... .................. l 15 Appendix One: Ethics application ...... .. .... ... ........ ....... ......... .... ............ ... 121 Acceptance ............ ... ... .. ..... .. .. .... ... .... ... .. .... .... ...... .. .. ..... 128 Information and consent fonns ......... ........ .................... . 129 Appendix Two: Questionnaire .. ....... ......... ........ .. ..... ...................... ......... 135 Evaluation forms .................. ... .......... ...... ...... .......... ...... 136 Interview questions ......... ................... ........ .. ............ ..... 140 Appendix Three: Workshop One timetable ...... .... ..... ................................ 141 Workshop One handouts .... ....... ..... ... ..... .... ........ ... .... .... 143 Appendix Four: Workshop Two timetable ........ ................. ..... .. ......... .... 147 Workshop Two handouts ..................... .... ........ ........ ...... 153 Bibliography ... .. ...... ....... ......... ... ................ .. ....... ........ ..... ...... 160 - v - FIGURES Figure 1: The up-hierarchy of open ego learning .. .... ..... ........... .... .... ...... 34 Figure 2: Open ego learning as a cycle ... ... ...... ......... .............. ......... .... ... ..... 35 Figure 3: The cycles of action research ........ .............. .............. ..... .. .... ..... 49 TABLES Table l : Issues arising from the initial literature review .......................... 45 Table 2: A framework for understanding relationships .. .... ..... .. ... ........ ... 79 Table 3: The framework: participant responses .................. ... ..... ....... .... 81 Table 4: Summary of changes made for Workshop Two ......... ... ....... ... I 02 Table 5: A draft framework of cultural changes in services ......... .... .... . l 10 Table 6: Summary of Changes planned fo llowing Workshop Two..... ... 11 5 Aro ha Awhi Karakia Kaumatua Kaupapa Mamae Mana Manaaki Mihi Mokemoke - Pak eh a Porangi Rangimarie - Tauiwi Tipuna Tumeke Turoro Waiata - VI - GLOSSARY love, affection cherish, embrace prayer elder plan, theme pained, distressed influence, authority to show respect, kindness greeting lonely a person of predominantly European descent living m Aotearoa/New Zealand beside oneself, out of one' s mind, mad quiet, peaceful different tribe, those who came later (Pakeha, Samoan, Chinese etc., all non-Maori in Aotearoa/New Zealand) ancestor ' too much ' - slang term meaning something is really good sick person song - vu - ACKNOWLEDGEMENTS Heartfelt thanks go firstly to people involved in the Serious Fun 'N Mind Trust who contributed the vision and patiently accompanied me on this journey contributing so much to joint learning recorded here. Secondly I thank my family, friends and supervisors for their support and encouragement. Without them this would never have been completed. - 1 - CHAPTER ONE: THE CONTEXT OF DISCRIMINATION INTRODUCTION This chapter backgrounds my interest in this research and examines the context in which discrimination occurs in mental health services. The focus on these workshops stems from my role in the mainstream Like Minds, Like Mine, project against stigma and discrimination associated with mental illness. The Ministry of Health (formerly Health Funding Authority) contract for the project in the Bay of Plenty is held by the Serious Fun 'N Mind Trust, my employer. With a Jewish background l have had a long-standing interest in education to counter discrimination. Since the mid 1980s I have facilitated anti-racism workshops (in latter years called Cultural Safety, Te Tiriti 0 Waitangi etc) and, from 1990, disability studies courses in which issues of discrimination associated with physical and intellectual disability have been a major component. I have worked collaboratively in anti-racism work with other Tauiwi and with Maori facilitators. Throughout those years we continually refined and improved our courses, and developed new resources and teaching techniques. However 1 have had frustratingly I ittle time to research relevant theories and best practices in often challenging work. This study has given me time to do this, informing my practice in all areas of adult education to counter discrimination. I came to work in the campaign against stigma and discrimination associated with mental illness in 1999 with no background in mental health and no real understanding of either the sites or depth of discrimination associated with mental illness. On talking to people with experience of mental illness over the first few months I became aware that one of the key sites of discrimination that impacted negatively on their lives was within mental health services themselves. People with experience of mental - 2 - illness reported unnecessary levels of coercion, coupled with paternalism, disrespect and lack of voice. A workshop for mental health services was developed to reduce this discrimination. My role in this research has been to develop resources, arrange training for facilitators, organise workshops for mental health service staff and students, evaluate them and, through this research further refine them. STIGMA AND DISCRIMINATION AND MENTAL ILLNESS Discrimination in the field of mental illness is linked to other forms of group oppression, such as racism, sexism, and heterosexism in Western societies. Hodge, Struckman & Trost (I 975) saw these as rooted in Dualism, a term they used with a capital ' D' to refer to the notion of the opposition of objective forces of good and evil and the notion of the will. These two concepts underpinned traditional western thought and cultural life, with good seeking mastery over evil. People and their actions could be ranked in order of their proportions of good and evil; and good should control evil. These views justified the concepts of hierarchy and authoritarian rule underlying Western racism (white people were more 'good'), sexism (men were more 'good' and should have authority over women) and colonialism. These concepts are also central in the modernist medical model of mental health services prevalent in Aotearoa/New Zealand. Although cultural concepts and justifications link discrimination in the field of mental illness with other oppressions, discrimination associated with mental illness is especially strong and hard to dislodge. In western discourse people with experience of mental illness are non-people, for they cannot 'think straight' and have 'lost their mind'. Not only are their thoughts and ideas of no worth, but they are inherently and irredeemably dangerous or 'evil'. There is no positive value in mental illness. Community structures and social conditions, such as poverty and exclusion, are not viewed as having a role in provoking or maintaining mental illness, as mental illness - 3 - is located in individuals. The strength of this discourse and justifications of discrimination may be a reason for the relatively recent growth of this movement for social change. In the National Project to Counter Stigma and Discrimination Associated with Mental Illness, stigma and discrimination were defined in the following way: stigma is like the ' stamp of disapproval ' carried by an individual: a mark of shame or social disgrace. It is something attached to a person that can mark them as unacceptable. Discrimination, on the other hand, is an act or belief that results in the systematic unfair treatment of a person or group because they are different (Like Minds, Like Mine pamphlet: Mental fllness : Changing Our Attitudes, 2000). Stigma is a mark seen as attached to the individual, whereas discrimination occurs as a result of behaviour. Discriminatory behaviour denies people a voice and access to employment, accommodation and good services. It has a profound effect on the quality of people's relationships and lives. The stigma and discrimination associated with mental illness is deeply entrenched in western society's commonsense notions of ' reality ' and informs the practical ways in which mental illness is perceived, problematised and ' treated'. Jenny Morris (1991) wrote about the effect of having a physical disability, but her story was similar to many told by people with experience of mental illness : I didn ' t fully realise it then, but by stepping over that wall I became someone whose physical condition others feared ... They therefore used a variety of defense mechanisms to prevent themselves having to identify with my reality. These defense mechanisms all took the form of people separating off from me ... In subtle and not so subtle ways a number of people conveyed to me that they felt my life was no longer worth living. (p.2) Yet there are also differences between the discrimination experienced by people with physical disability and people with experience of mental illness. The nature of the illnesses is fundamentally different. A diagnosis of mental illness is a judgment - 4 - primarily based on a person's behaviour, so there is an implied criticism that can be seen by the person or by others as an attack on their identity and self-esteem (Rogers, Pilgram & Lacey, 1993). The consequences of the label of mental illness are much greater than those of physical i llness. In her seminal work on stigma and discrimination associated with mental illness, Sayce (2000) wrote that it was common for people to tell their employers that they were sick, implying they were physically ill when they were in fact distressed. People preferred to keep distress private was because it was a stigmatised state. Charlton (L998) noted that, in his international work in the disability rights movement, he received "almost universal confirmation that people with mental illness are the most discriminated against and the most isolated in their respective countries". (p.6/7) Unlike the stigma of physical disability, which often arouses the emotion of pity, the stigma of mental illness arouses fear. When I discussed the need to avoid the ' charity and pity' approaches, with a member of the Trust' s advisory group, he said, "Pity would be a good start" (Geoff Harman, personal communication, 1999). Fear is a more primal emotion, harder to dislodge, and more distancing than pity. Films and media reinforce the idea that peop le who have lost their mind are capable of unpredictable atrocities. Public debates are held in the media on whether to extend professional power to restrain or remove people or force them to take medication. Chomsky and Herman ( 1988) saw the media playing the greatest role in ' manufacturing consent' through the use of fi lters that selected and shaped information. Because of this view that people with a mental illness are to be feared , discrimination in the field of mental illness may be more difficult to counter than the discrimination surrounding other disabilities. In England it has also been shown to be more pervasive. Sayce (2000), quotes an English Harris public opinion survey that found 19% of those surveyed said they would feel comfortable with someone with a mental illness, compared to 59% with someone using a wheelchajr. (p.67) - 5 - Stigma and discrimination are widely regarded as barriers to people becoming well after an episode of mental illness. Seeking help from mental health services brings both advantages and disadvantages: help and support, but also a psychiatric diagnosis and label, which may affect self-concept, future employment and relationships. Difficulties experienced obtaining work and housing; retaining good relationships with families and friends contribute to social isolation, poverty and stress. The Mental Health Commission (l 998b) noted that One of the most painful , widely felt, and insidious problems for people who experience mental illness, is social exclusion. The direct effects of mental illness may contribute to social exclusion in some cases and at some times, but the major contributor is discrimination. People with mental illness may be the subject of ridicule, harassment and abuse. Or they may simply be forgotten or ignored, denied access to opportunities most people take for granted. (p.2) Becoming internalised, stigma and discrimination work insidiously, denying hope and the possibi lity of recovery. Many people with experience of mental illness develop shame, coming to believe that they are less able than others. The feelings of inferiority make it difficult for many people with experience of mental illness to confront and contest their own powerlessness. The Blueprint for Mental Health Services in New Zealand (I 998a) echoed this One of the biggest barriers to recovery is discrimination. That is why stopping discrimination and championing respect, rights and equality for people with mental illness is so important. It is as important as providing the best treatments or therapies. (p. 18) But it is not only service users who are hurt, for the discrimination also acts as a barrier to people accessing services. Sayce, (2000), wrote that discrimination on mental health grounds affected millions because "so many people fear being ' on the wrong side of the line' and go to such pains to make it clear, not least to themselves, that even when distressed they are not ' mad"'. (p.9) - 6 - Sustained discrimination brings oppression. This occurs when groups are placed in positions of inferiority, controlled by powerful others. Power is diffuse and complicated; working not only through overt tactics such as force and coercion but through legitimation and consent. Prevailing ideologies impress on people the normality of the power and privilege held by certain groups such as professionals. Foucault (l 980) explored how power shaped relationships, established and implemented through discourse. The 'commonsense of exclusion' for example, was seen in the words 'mad' and 'insane' used to refer to anyone who was outcast or not worth consideration. Historically humans were thought in Western Europe to be partly driven by primitive animal instincts that were evil making them potentially greedy, selfish and hostile. From the middle ages people with experience of mental illness were seen as having a predominance of animal within them (Foucault, 1963) and lacking the capacity for reason. Reason was the mechanism through which people controlled their passions, enabling them to be moral, and autonomous. Such people, fulfilling their duties as citizens could access the rights of full inclusion in society. In contrast, ' mad' people became frustrated as they were unable to use reason to satisfy their needs and this upset their nervous systems. They were not worthy of respect or citizenship. In need of protection from themselves, it was in their best interests that others made decisions for them. According to Sayce (2000), this 'commonsense of exclusion' said people with mental health problems should be placed at a distance. -7- THE HISTORY OF STIGMA AND DISCRIMINATION IN MENTAL HEAL TH SERVICES IN AOTEAROAINEW ZEALAND The history of mental health services in this country is almost entirely dominated by Western practices and concepts of mental illness. Only in the last decade has there been recognition of indigenous beliefs and ways of supporting people with experience of mental illness. Maori people with experience of mental illness face discrimination on two counts: both discrimination because of their experience of mental illness and through their inabili ty to access culturally appropriate and safe support within most mental health services. Women also report difficulties accessing appropriate and safe services, as women-only services are rare. I NSTITUTIONAL!SA TION For over a century discrimination was practised through the physical segregation of people with experience of mental illness into institutions. New Zealand followed English practices with the first institution, the Karori Lunatic Asylum, opening in l 854, as a "place of refuge for troubled minds" (Williams, 1987 p.3 ). The earlier harsh treatments in British institutions using strait jackets and irons and fetters were no longer in vogue, and treatment was by 'moral management'. Quiet routines, ordered programmes of church services, recreation and manual work in the gardens would restore patients to health . These first asylums were close to towns to enable family contact. Patience, gentle treatment, nourishing diet, cleanliness with light employment or exercise goes far to recover the lunatic, and in chronic cases serves to make them comfortable and even happy. Amusements for the insane are indispensable ... Good example in the - 8 - attendants is the greatest guide and gives confidence to the patients (Dunedin Asylum Keeper's Journal, 20 April 1884, cited in Brunton 1985 p.46). New Zealand asylums were under the control of lay people until doctors successfully campaigned in the early 1870s to put medical men in charge (Williams 1987 p. 21 ). In the mid 1870s the clientele of the asylums began to change from people seen as acute and curable to a predominance of people whose illness was viewed as chronic. Williams (1987) documented the reasons for these changes : The country was entering a depression and there was an aging bachelor population, no social welfare and workers suffering from syphilis and drink had no relatives to care for them. (p.28) With stretched resources and overcrowding, custodial care, seclusion and mechanical restraint became common. From the early 1870s the asylums became to be identified with incurability and stigma associated with mental illness was clearly on the mcrease. A sojourn in an asylum leaves behind it a ban and a disqualification which the relatives of the insane are unwilling to incur ... A belief is cherished that restoration to reason may be obtained by home treatment and hence the insane are not sent to asylums until hope and patience are exhausted (Wellington Independent 12 October 1871 cited in Brunton, 1985, p.49). The heightened stigma has been blamed (Williams, 1987; Brunton, 1985) on the tendency for the new penny daily newspapers of the 1870s, to publish sensational stories of horror and violence in asylums overseas. They followed these stories with a hunt for similar incidents in this country. Williams (1987) wrote that this caused a public reaction of fear and withdrawal and a demand for tighter security at the local asylums. The public mood changed from sympathy to one of suspicion, self-protection and indifference. (p. 28) Fearing exposure of the deteriorating conditions in the asylums, public access was limited. Security was tightened, walls became higher, and new asylums, Sea.cliff, - 9 - Porirua and Tokanui, built from 1878 to 1912, were further from cities. This led to more ignorance about mental illness and increased antagonism in the community. Depersonalised, overcrowded, remote institutions, starved of funds gradually became the norm during the next 80 years as policies and procedures became a compromise between the desirable and the politically possible. DEINSTITUTIONAL!S{\JION Small improvements occurred after both world wars, as returned servicemen suffering from shell-shock were seen as worthy of better treatment. There was a renewed emphasis on rehabilitation and therapy. Acute wards within hospitals were developed in order to treat people without sending them to the institutions. But most changes occurred from the mid 1950s as the use of new medications resulted in shorter admissions and more people were discharged (Abbott, I 986, p. v and Brunton, 1985, p. 57). Community care was viewed as feasible and community residential services began with the first hostel for former long-term patients opening in Wellington 111 1961. Deinstitutionalisation accelerated in the 1960s, partly fuelled by public concern and critiques (Goffman, 1961) of institutions, on the grounds of the loss of identity and competence resu lting from living in rigid organisations. The move out of institutional care was also influenced in the 1970s and 1980s by the availability of improved medication and a new emphasis on human rights. PARADIGMS IN HEALTH CARE Seedhouse ( 1988) saw signs of a shift in the medical paradigm on which health care has been based. Common assumptions in this paradigm, or medical model, steeped in positivism and modernism, were that health was the absence of disease; disease would be cured through medical science, medical training centred on facts and - 10 - technical skills, and there was a strict hierarchy among professionals who made decisions without involving patients. Paradigms are created and reinforced through discourse. Language plays a central role in the formation of ideas, constructing commonsense reality and giving a basis for identity. The creation of these discourses, influenced by people in power, defines how life is experienced, seen and interpreted. THE MEDICAL MODEL Large institutions no longer exist but the discourse and practices of the medical model still hold sway and have a major influence in the discrimination and marginalisation of people with a disability or experience of mental illness. In the field of mental health, medical power is especially strong with the Mental Health (Compulsory Assessment and Treatment) Act, 1992 (and amendments) enabling medical authorities to take away a person's right to refuse or to choose treatment. Seedhouse (1988) noted this paradigm as one where the medical profession .. . defines its own rationale and influence without consulting those it seeks to serve, where the health service is organised in strict hierarchical lines, where curing disease through science is the primary motive ... (p. 9) Foucault (1980) showed how power relations function at the level of knowledge, of creation of ideas. Power was not merely a negative force, used to oppress, but was linked to the production of the social world through the legitimation of social discourses. The discourse of applied science enabled the medical profession to control individuals. Individuals were observed, categorised and contained, becoming 'cases' or 'patients', their behaviours meticulously documented in ways used to justify continuing control. In an influential critique of professional power, Illich (1976) wrote that a patient's sickness - 11 - . . . is taken from him and turned into the raw material for an institutional enterprise. His condition is interpreted according to a set of abstract rules in a language he cannot understand .... the sick person is deprived of meaningful words for his anguish .... (p. 175) Professionals gave ordinary processes strange and powerful names to gain control and mystify lay people, both patients, families and communities. Technical language was an integral part of the professional fa~ade (Brandon, 1991; Tilich, I 976). The illusion of control was based on the assumption that the medical profession was able, using scientific methods, to accurately control and treat people. When media reports in creased community fears of people with mental illness (both in 1870s and currently) there were frequent calls for the medical profession to be given even greater powers to control and incarcerate people who were unwell. Once labelled with a mental illness people become enmeshed in the medical model and may find it difficult to get out. In 1973 Rosehan (l 989), along with seven others gained admission to 12 different hospitals in the United States by talking about ' hearing voices '. Even though they reported their voices stopped on admission, it took some of these researchers many weeks to convince medical authorities they were well enough to be discharged . Most of their behaviours were interpreted in the light of their illness, and used to confirm the original diagnosis . Clearly within the classic medical model there is no place for the voice of people with experience of mental illness. Their history is written by others, the validity of their perspectives denied by the label they receive. Cath Roper of Australia, who has experience of mental ii lness, wrote I have no space to speak until I cast off the labels I have been given, until I discard the medical model - become the ' insightless creature' . Because how do you speak when you are only asked certain questions which have certain answers? How do you speak when you hear the gavel of dismissal : the rules are all pre-determined, the court is in session, the way you demonstrate insight is to say you know you have no insight? ... I cannot live in that place, that has been marked out for me - that - 12 - narrow, arid, sterile place, that hopeless place, where dreams are only disease. I have been filed, taken, classified, named, categorised, abused, labelled by your institutions (Roper and Pearson, 1999). W ithin the overarching medical paradigm there are different understandings of the causes and treatment of mental illness that have informed service development in the past century, both biological and psycho-social models. Common to both is professional power. The relationship between professionals and people with experience of mental illness is one where those seen as ' knowledgeable' and ' skilled' act on those labelled ' unwell '. THE BRAIN DISEASE (BIOLOGICAL) MODEL Tn this approach, the hope of the future rests with science (Sayce, 2000). As the genetic and biochemical roots of problems such as schizophrenia and depression are gradually uncovered, we wi ll see that a disease of the brain is no different from a disease of some other bodily organ. Beliefs in biological and genetic causes of mental illness have gained favour in recent decades, both within the profession and in public education, especially in the United States. Studies have shown a correlation between these beliefs and negative attitudes towards people with a mental illness (Read & Harre 200 I ), finding they reinforced the view that people could not contrnl themselves and were likely to be unpredictable. Exaggerating the difference between those that have, and those that have not yet had a mental illness encouraged distancing, fear and scapegoating. ft also produced patronising attitudes. 'They ' were not only different from 'us', but also child-like. People used to be called crazy and lunatic. A lot of hatred was directed at them. NAMJ1 stepped in and said, no, don' t hate them, they' re sick. Pity them. Now we' re stuck with a lot of pity. l wish someone had had more foresight and substituted something different for the hatred (woman user/survivor, Massachusetts, 1995, quoted in Sayce, 2000, p. 94 ). I The National Association for Mental Lllness - 13 - One study showed that within mental health services, professionals with a biological perspective were less inclined to involve patients in the provision or management of mental health services than were professionals with a psychosocial perspective (Kent & Read, 1998, cited in Read & Harre 2001 p. 225). The brain disease model had the advantage of being a 'no fault' one, with any inability to function seen as caused by the individual's illness. Such beliefs, locating the cause of mental health problems outside an individual's personality, did not blame the person and had been shown to be associated with better health outcomes than beliefs that are blaming (Barnes 1999). Yet the brain disease model also left no room to acknowledge, or act on, disempowerment caused by the person 's social or physical environment, nor understanding that mental illness may be exacerbated by stigma and discrimination within both services and community. THE INDIVIDUAL GROWTH OR PSYCHOSOCIAL MODEL This model sees wellness and unwellness as a continuum and both the social and physical environment as causing distress . Therapy is the primary method of rehabilitation. Ultimately everyone could benefit from counselling which helped us become emotionally literate. Psychotherapy from the early 201 h century and the New Age and self-help movement in the late 20ll1 century have permeated our culture. Subconscious feelings and defense mechanisms have become part of everyday language (Sayce, 2000). The advantage of this model to service users is that professionals working within it are often less judgmental. Read and Law (1999, p. 219) cite studies showing that medical model professionals perceived a videotape of a 'patient' as more disturbed than did professionals with a social learning perspective. However therapists still strictly maintained their professional distance. - 14 - This psychosocial model has widened the scope of professional power through bringing more life events into the domain of therapists and psychologists. McKnight (1995) gave an example of the growth of grief counselling replacing and undemuning friends, family and natural community support at a time of bereavement. He saw the rise in services as disempowering communities and pathologising everyday stressors. A subset of the psychosocial model is the one seen as perhaps the least discriminatory - the social deprivation model. This approach sees marginalisation as a causal factor in the prevalence of mental illness among ethnic minorities (for example, statistics show up to 60% of patients in psychiatric institutions are Maori: Johnstone & Read 1999) and people living in poverty. Brandon (1991 p.5) noted that the 'most important and relevant symptoms of mental illness are frequently poverty and powerlessness'. The medical model is now being challenged on many fronts, both from people with experience of mental illness and from within the professions. A Harvard psychiatrist, Mack, (cited in Spaniol & Cattaneo, 1997) saw many of the disorders professionals encounter in people with psychiatric disabilities resulting from the sense of powerlessness and helplessness engendered by their treatment. Walsh ( 1994) quoted evidence by a psychiatrist to an Australian enquiry that viewing patients within the medical model, increased dependency, lowered self-esteem and empowerment. He advocated empathic relationships between staff and patients, noting that nurses used the excuse of ' professionalism' to objectify patients. He gave as examples ... the standard patient greeting, 'how are you today?' which gives the impression you neither care nor are really expecting a reply. Or staff handover where patients are spoken of as a constellation of behavioural problems. Or when patient distress is first met with medication rather than empathy. (p.117) Few people hold solely to one or other of the models. Most see mental illness as a result of various factors, genetic, individual, social, but vary in their views of the importance of these factors. - 15 - THE CULTURii OF M~NJAL !jEALTH §f;BV!Cf;§ Both the biological and psychosocial models remain firmly within the overarching medical paradigm, which informs the culture of mental health services. In the psychosocial model some therapists advocated a democratic model of therapy with a partnership approach, yet power was given with strings attached and could be taken back if progress (measured by the therapists) was not made. Brandon (1991) saw phrases such as 'therapeutic reality' as concealing authoritarianism, and modem 'democratic' therapists as heirs of the moral management tradition of the early 191 " century, "concerned with the good of the people rather than the transfer of power". (p.146) He noted that even with changes in beliefs abou~ the causes of mental illness and treatments offered, little changed for the patients. It was still the individual that needed to be changed and just a different group in charge of the changes. Professionals view themselves as the ones bringing knowledge, skill, ' reason' and control into their relationship with people with experience of mental illness. This view lies behind the culture of mental health services with its staff-user relationships of 'high distance' . Most staff interact only in a task oriented way with service users. Interventions, such as behaviour therapy, are aimed at diagnosing problems and changing people, rather than accepting and responding to their perceptions and expressed needs. When a relationship of manipulation became the sole relationship the person was treated as an object instead of as a human 'subject' (Seedhouse, 1995, cited in Barnes, 1999). Some service users have seen manipulation as the motive for professionals' interest in users' views. Roger, Pilgrim and Lacey (1993) noted The goal of compliance with treatments prescribed by medical practitioners, accompanied by an uncritical acceptance of the inherent desirability of professional practices, often seem to lurk behind a concern to find out the 'patient's views' . (p.2) - 16 - Within tertiary mental health services the distance between staff and people with ex:perience of mental illness is maintained through mechanisms underlining the difference in status between the two groups. Language, uniforms, secrecy (a reluctance to share information) use of physical space (separate staff rooms, toilets) all signal who is assumed 'well' and who is viewed as 'unwell '. Much discourse clearly delineates those who have power from those who don ' t, through the use of such words such as 'paro le', 'allowed ' and ' compliant'. Discrimination resided in the way staff made every day decisions and developed and controlled their relationships with people with experience of mental illness (Dominelli 1997). An example, cited by Patricia Deegan (1997) was the rage she felt when, as a teenager, she was given a diagnosis, with little hope for a quality life. She wrote that "one must recover not only from the mental illness, but also from the internalised stigma, low expectations and dehumanising clinical practices" (p.16). Often staff stay within their offices or workstations, acting as observers, reducing their opporhmities to interact with patients. Staff roles emphasise monitoring distress rather than responding to it. Brewin commented that ... psychologists traditionally work with either the ability to remember or forget distressing experiences, rather than actually hearing these memories (quoted in Barnes, 1999, p. 404). Users experienced such social relations within services as abuse (Barnes, 1999) . Barnes echoed the ideas of Mack (cited in Spaniol & Cattaneo, 1997), noting that lack of respect within services led to further trauma, added to distress and exacerbated illness. As a condition of treatment, within the culture of mental health services, service users had to discard their own self-concept and take on the staffs version of themselves. People with experience of mental illness viewed the medical paradigm as abusive and oppressive (Brandon, 1991; Roper, 1999; Deegan, 1997). Deegan noted " .... any act - 17 - which reduces the human subject to an object to be acted on is an oppressive act" (p .14). Consumer-led research into acute, hospital based care noted The loss of self-esteem and loss of our dignity . . . the effects of being treated like children, directed, controlled and spoken to with less than adult respect; powerlessness and the frustration of not being able to make ourselves heard over the clamour of 'science'; the awful effects of profound shame and sometimes self-disgust; anger and frustration when we are locked up against our wishes and don't understand or when drugs don' t work or have side effects which cripple us [and] for some of us sheer relief that our pain is being taken seriously at last (Wadsworth & Epstein, 1996, p. 65). People with experience of mental illness acknowledge many individual examples of good practice by staff, yet with the medical model underpinning serv ice culture, it remains authoritarian, paternalis tic, monocultural and damaging. MAORI EXPERIENCES OF MENTAL HEAL TH SERVICES Colonisation led to the imposition of Western medical practices on Maori. These were based on individualism and independence and economic rather than social or spi ritual values . One Maori who had experienced mental illness said I'd wake up in hospital and they' d say ' We're go ing to help you'. And I beli eved them. They didn' t ask me anything about who I was, where l came from, that kind of stuff. Just that they were going to help me .... .I felt intimidated, suspicious and very much alone. But I also met people in hospital who 1 identified with and they always happened to be Pakeha. I had given up on being Maori, The shame thing. I didn't want to be Maori . I don ' t think there was even a Maori on the staff on my ward. That was a major hindrance to my cultural well-being.' Fenton & Te Koutua (2000, p. 20-21). Such experiences have been noted in government reports where policy changes have been signalled. The Mental Health Commission' s Blueprint for Mental Health Services in New Zealand (1998) noted that The high Maori re-admission rates into hospitals attest to the fact that Maori needs are not being met and something dramatically different needs to happen. Accepting Maori concepts of healing and ensuring that service contracts are supportive of this are essential if - 18 - significant improvements in Maori mental health status are to be achieved. (p.58) In the past decade some residential and community supports have been provided by and for Maori. In some inpatient wards, Maori staff now support Maori service users. Yet, of practising psychiatrists surveyed in 1999, more than half said their training did not prepare them to work effectively with Maori (Johnstone & Read, 2000). NEW PARADIGM: MOVING TO A RECOVERY MODEL Given that the pervasive medical paradigm underpinning the culture of mental health services is recognised as damaging, what is the vision for change? Seedhouse (1988) believed a new paradigm in general health services was beginning to take effect, based on a belief that health is more than the absence of disease. In this paradigm, curing disease was important, but not as important as creating and increasing the autonomy of people who request or need health care ... and as respecting people's choices even if they conflict with given advice. (p. 9) This was a vast shift in the understanding of the nature of health and removed it from the exclusive realm of applied scientists. lf autonomy and choice were to be central to health services significant changes in relationships and practices were necessary. Moves towards autonomy and recognition of the validity and importance of the patients ' views are more problematic in the field of mental health. Because of what is seen as ' impaired mental status' service professionals working within the medical model may see users as lacking the ability to assess their own treatment adequately. In Aotearoa/New Zealand there is a growing consumer movement but so far it has been less visible than in the other disability and health areas. There have been notably fewer complaints about mental health than physical health services since the inception of the Health and Disability Services Consumer Rights Act (1994) (website: www.knowledge-basket.co.nz/hdc ). - 19 - Marsh et al ( l 999) saw mental health services as needing to be committed to a recovery model. This would develop "a person-driven system that can meet the essential needs of people with mental illness - as they perceive them - in their communities" (p. 358). They envisaged a paradigm shift in professional practice from a disease based model to a health based development model; from a view of a person as mentally ill to one of a person with a disability, from the goal of intervention being treatment to a goal of recovery; from professionals as practitioners to professionals as consultants; from an authoritarian service to an educational service. Such practices are sometimes termed 'strengths' or ' resiliency ' models, but are more commonly linked with a recovery model, based on the concepts of partnership and participation. There are signs that a paradigm shift towards such models is occurring, signalled by go vernment legislation such as the Health and Disability Commissioner Act (1994), which limited professional power and supported the ri ghts of health consumers to full inforn1ation and decision making. Within the mental health field this power is still limited by the right of professionals to insist on treatment where there is (in the eyes of the professionals) significant danger to the person who is unwell o r to others. In allied fields, there are some models of how this new paradigm may be applied . Within social work the ' anti-oppressive practice' approach focused on creating a relationship that maximised the autonomy of service users. Empathy and power sharing were central (Dom.inell i, 1998). Practitioners needed to understand how power operated within social relations, and apply the principles of egalitarianism in the relationships with their ' clients'. ln counselling, narrative therapy (Parton & O ' Bryne, 2000) builds on people' s stories in an empowering and respectful way to help them re-author their lives to bring about change. Yet pure egalitarian relations are acknowledged as unreachable in relationships between professionals and clients. Dominelli (1 998) noted "the best that can be achieved is a lowering of the power imbalance through a continual process of identifying the sources of power differentials and eliminating as many of these as possible". (p. 9) - 20 - Approaches that increased autonomy and reduced the distance put by the medical model between staff and people with experience of mental illness were endorsed by Deegan (1997), a service user and professional. She wrote ... the hard part is daring to be bold and brave enough to step out from behind our professional fa~ade and to allow our hearts and minds to be touched, broken open and moved to compassion by the strength, courage and fiercely tenacious spirits of people with psychiatric disabilities as well as the suffering, poverty and injustice that people labelled with mental illness experience. (p. 13) She advocated putting the 'human' back into human services, noting that power was not finite but could be created when staff allowed themselves to be vulnerable and moved by the suffering of those they supported. Wadsworth & Epstein (1996) noted that a 'culture of busyness' made real communication rare. "You tell your story and somebody makes a decision about you and you're shunted off'' (p.67). Research supported this approach as good for recovery. Barnes (1999) wrote that in settings as diverse as inpatient services and community care, staff-user relationships characterised by low distance (with staff joining service users in activities) resulted in "good mental health outcomes and increased user involvement". (p. 410) These approaches all centre on enabling the perspectives of service users to be acknowledged and validated. The historical silence imposed by the medical paradigm gives way to an acknowledgement that the voice of service users must be heard, both in the individual relationships between people and their health professionals and in management and policy decisions. In this new paradigm premised on western individualism, personal autonomy is central to health care. This does not fit easily with Maori views of the importance of whanau. Criticism has been made of the privacy legislation on these grounds (Selby, 1995). O'Hagan (2001) pointed to the need to acknowledge the potential influence - 21 - and importance of whanau and communities to support recovery in Aotearoa/New Zealand. Discrimination against people with experience of mental illness is now the focus of a major public health campaign in Aotearoa/New Zealand. The five year Project to Counter Stigma and Discrimination associated with Mental Illness, (known as Like Minds, Like Mine, Like Mine), was initiated in 1996, by the then Health Funding Authority with an initial allocation of $10.4 million. The project, now jointly managed by Public Health and Mental Health for the Ministry of Health has been extended to 2003. Its vision was to 'work towards creating a nation that values and includes people with mental illness' (Like Minds, Like Mine, National Plan, May 1999). National strategies link with community based projects, such as those of my employer, the Serious Fun 'N Mind Trust, which aims to achieve sustained respect for people with experience of mental illness. The origin of this campaign goes back to the 1996 report of the government inquiry into mental health services (Mason, Johnston, & Crowe). A chapter was devoted to the difficulties caused by sensationalist media coverage and the need for a public education campaign to counter discrimination in the community. This was followed in 1998 by the Mental Health Commission' s Blueprint for Mental Health Services, which delineated the problem of discrimination within services based on the medical paradigm. It is widely acknowledged that discrimination generated by the mental health sector against people using services is a major issue .... At all levels, discrimination leads to decision-making by the workforce without the involvement of service users. At the individual level, service users o"fi:en complain that mental health workers fail to give them respect, protection of rights and equality. It is almost inevitable that when people experience discrimination from others, they will internalise the messages they are given, The mental health workforce must recognise this, and develop a recovery - 22 - approach that gives service users hope, a sense of self-worth, and a sense of belonging. (p.19) The driving force behind changes in this country has been the Mental Health Commission, set up in response to the recommendations of the government's 1996 "Inquiry Under Section 47 of the Health and Disability Services Act 1993 in Respect of Certain Mental Health Services" (commonly known as the Mason Report). Established as a Crown entity in 1998 the Commission's role was to ensure the implementation of the National Mental Health Strategy by monitoring and reporting on the performance of key agencies. In 1998 the Mental Health Commission published a "Travel guide for people on the Journeys towards equality, respect and rights for people who experience mental illness". One section was devoted to ways to move towards a health sector that "values people with mental illness and treats them fairly". Some actions advocated were to: o Raise awareness of the harmful effects of some standard health practices and systems on mental health . o Dissolving the 'them and us' attitude. o Train workers in the kaupapa of zero tolerance of discrimination. o Ensure that the relationship between service users/people with experience of mental illness and workers in mental health services is one of equality, respect and power. o Have people with mental illness involved in mental health workforce recrnitment, selection, performance appraisal, education and training. (p. 16/17) Towards the end of this research the Commission also published (2001) a set of Recovery Competencies for staff of mental health services, compiled by Mary O'Hagan. Recovery is defined in the Blueprint as the ability to live well in the presence or absence of one's mental illness. Mary O'Hagan wrote that the recovery approach for people with major mental illness came from the United States and has three main sources: the generic recovery or self-help movement; the mental health - 23 - service user movement, and psychiatric rehabilitation focussing on community integration. She added that This vision comes out of the United States and is more individualistic and monocultural than many New Zealanders feel comfortable with .. .. the competencies in this paper are .. . an attempt to redefine recovery for the contemporary New Zealand context. (p.2) The competencies for mental health staff included demonstrating: ... an understanding of discrimination by the health workforce. including and ... an understanding of discrimination in the management of services eg. weak consumer participation, lack of a complaints procedure. ... an understanding of one-to-one discrimination eg. derogatory or incomprehensible language, controlling behaviour, paternalistic attitudes, neglect, abuse. (p. 55) The leadership of the Commission reinforced the Ministry of Health policies and protocols such as the National Mental Health Standards (1997) and Guidelines for Consumer Participation (1995). Another visible sign of change has been in language. In many movements against oppression the right to name ones own group has been a symbol of growing assertion. As de Bono (1985) wrote Words come to be laden with emotional values and once so laden can never be cleansed. Words are a living accumulation of our history and through them we become trapped in idioms which are long past their usefulness. (p.69) 'Niggers' became 'blacks' and 'African Americans'; 'girls' became 'women', 'handicapped' became 'disabled'. In the field of mental illness, the changes have been from 'patients' to 'clients' to 'consumers', with most changes spearheaded by professionals or managers. In Britain the term 'service user' or 'user' is common. - 24 - Tn Aotearoa/New Zealand, people with experience of mental illness in the 1990s used the term ' psychiatric survivors'. More recently concerns have been voiced about the use of the term 'consumer', which implies a passive role and choice of service - a privilege almost unknown, except by those who can afford private care. A term that gained increasing usage during the course of this study was 'tangata whai ora'. Suggested by Professor Mason Durie, it can be translated as ' people seeking wellness', emphasising the active role people play in their own recovery. Yet some service users (Deegan, 1997) and other researchers (Shera & Delva­ Tauil ii Ii , 1996) have pointed out that changes in the names we call one another, from doctors and patients, to staff and clients, to providers and consumers, have yet to change the fundamental relationship between those labelled with mental illness and those who are not. This relationship " ... has remained essentially unchanged for centuries" (Deegan, p.13). In the United States, Deegan (l 997) saw only surface changes over the past decades, writing that changing systems, language, reallocating funds and moving to community based models was !he 'easy part ' . She noted that real change was quite uncomfortable and we may content ourselves with superficial change. ln Aotearoa/New Zealand Mental Health Commissioner, Julie Leibrich ( 1998), echoed her concerns, seeing discriminatory behaviour in the semantic games, playing with words so you avoid dealing with something. It is about renaming and renaming something rather than confronting the underlying problem. (p. 6) Sayce (2000) echoed the need for change to affect relationships, not just the language, method and site of services . . . . we are quick to spot recent changes in mental health policy and practice, such as hospital closure programmes. It is harder to notice the deep continuities of belief, and treatment of users - although it is often apparent to users .... In 20 years' time, the continuities will be more apparent. It will be clear that by 2000, we had changed the place and organisation of services and opened up some new - 25 - opportunities, but not effectively challenged the whole notion that people with mental health problems are inferior. (pp. 77-78) !Hfi ROLE OF TRAINING Even when supported by government policy, changes to the culture of mental health services so that they support recovery will require sustained effort on a number of fronts. Braye and Preston-Shoot (1995) called for management styles which were democratic rather than autocratic, user involvement in planning, and a culture in which power was recognised and feedback on how it was used was permitted and encouraged. Part of the change would come though training of staff and students, but to be effective training must be accompanied by structural and cultural changes to cement in desired behaviours. Training should be broader than a focus on skill development, to include a staff and organizational development approach, where agency policies and strategies are connected directly to individual and group learning needs. Equally knowledge and skills from training will wither if not linked to an empowering agency culture containing, inter alia, supervision, teamwork and appraisal. (p. 172) The 2001-3 Like Minds, Like Mine, Like Mine national plan advocated a rights-based approach to change involving the enforcement of sanctions against discriminatory behaviour, accompanied by workplace training to he lp people understand why legal provisions are in force. This was in keeping with the findings of positivist attitude change research that pointed to the importance of context. After years of controversy over the attitude­ behaviour relationship most researchers now agreed that behaviours did not always reflect attitudes and the social context surrounding the behaviour was important (Allport, 1954). Someone may act positively towards people with experience of mental illness in one setting, but act differently when among peers who shun people with experience of mental illness. - 26 - Changes in policies and procedures necessary for cultural change within organisations was clearly beyond the scope of this research, which focussed only on the effectiveness of a five hour workshop, a small part of the whole picture. This thesis aimed to discover how to make staff education as effective as possible, so their practices are consistent with a recovery model. Barnes (1999) recommended that education developed students' understandings of the meanings of discriminatory social relations for mental distress. Like Deegan (1997), she suggested it was important for students to have the opportunity to dialogue with service users to open the door for students to be moved, motivating real commitment to work for the service user. The acknowledgement of the voice of people with experience of mental ii lness as not just valid but essential to good health care is beginning. Recent government policies have encouraged the employment of consumer advisers within tertiary mental health services with the aim of influencing management and policy decisions. However the voice of people with experience of mental illness is rarely heard in the training of mental health support workers and clinicians. Only occasionally is someone with an experience of mental illness invited to speak to staff or st11dents. This often remains a to ken input (perhaps a couple of hours for every I 0 weeks of training), without payment. The level of stigma and discrimination within the mental health field and community in general has been so high that few people with experience of mental illness, on becoming well enough to work, wish to remain in the mental health field . Many learn to cope with their illness, renew their former lives, careers and parenting commitments and rarely acknowledge their mental illness to themselves or others. Others build on their experience and work in mental health services but do not divulge their own history of illness. With the media advertisements in 2000 raising the visibility of the Like Minds, Like Mine movement, more people are beginning to acknowledge their tangata whai ora - 27 - status, whether publishing articles and books about their ex:penences, attending courses in public speaking or offering to faci litate courses for other people with ex:perience of mental illness and for mental health services. A long-term goal of some people with experience of mental illness supporting the Bay of Plenty project has been to become key facilitators of training of mental health service staff, although this goal was challenged during this study (see Chapter Four). This goal appears achievable. A first step to the goal was to develop a five-hour workshop facilitated by people with experience of mental illness. This would enable their voice to be heard and demonstrate their abi lity to play an important role in staff development. The one-day workshop central to this research represented this first step, and its development is the subject of follov,ring chapters. Chapter Two summanses the main learning from the initial literature search on learning, attitude change and initiatives in anti-discrimination education that informed the first workshop of this study. Chapter Three delineates the research techniques used. Chapter Four details the learning that resulted from the observation and reflection on the workshops and their subsequent redesign, and the results of further literature searches that were carried out. Chapter Five reflects on the second workshop and plans for the future, as well as the wider implications of ideas and reflections that have come about during this process. - 28 - CHAPTER Two: LEARNING AND SOCIAL CHANGE INTRODUCTION There are a number of social and psychological studies that can inform the design of workshops to reduce discrimination. Some which informed the development of the early workshops, trialled before this study began in 2000, were: o Theories of adult learning, particularly those of experiential learning and critical reflection for adult students and professionals. o The role of workshops and learning in movements for social change. o Theories of attitude formation and change and the relationship of attitudes to behaviours. o Experiences of anti-racism workshops aimed to reduce discrimination. o Reflections on the centrality of discourse in establishing and sustaining discrimination . o Reflections on the effect of facilitator identity on workshop effectiveness. This chapter will examine each of these in tum. Literature searches were also carried out before the first workshop included in this study and after each workshop was evaluated . These informed analysis and raised new questions. These findings are integrated into Chapter 4. ADULT LEARNING A central debate in western education circles has been the role of the teacher or facilitator in learning. In traditional societies learning focussed on acquiring the outlook, knowledge and skills necessary to perform well-established roles and customs. Learning was confined to preserving ways of knowing, and the continuation of culture.. As western academic education evolved, indirect knowledge was transmitted by teachers. Within formal education settings student participation was often confined to following lectures and answering questions. These forms of learning - 29 - have been challenged by experiential learning theorists who advocate techniques closer to the meaning of the Latin origins of the word ' education: 'educare' . This is literally translated as ' to bring out of' or 'to lead forth'. Andragogy was a term proposed for the study of adult education back in the 1960s (Merriam 2001, p.5) with five assumptions about adult learners underlying it: 1. They had independent self-concepts and could direct their own learning 2. They had accumulated a reservoir of life experiences that were a rich resource for learning 3. Their learning needs were closely related to their changing social roles 4. They were problem centred and interested in immediate application of knowledge and 5. They were motivated to learn by internal rather than external factors . The first four seemed to have held true for most of the participants on our workshops although the fifth was less clear, and by the second workshop, which was compulsory for some participants, clearly not all participants were self- motivated. A major stream of adult education research has been that of experiential education which was based on the understanding that learning was by nature autonomous. No one can learn for someone else. To learn was "to come to understand something or to acquire a skill, either of which is retained by practice or rehearsal" (Heron, 1993, p.14). All learning was re-learning, for no one came to education as a blank slate, but with a wealth of experience, (Kolb, l 984). Learning occurred and knowledge was created when, through new experiences or information, previous knowledge was reassessed and changed. This did not deny the legitimacy of educational authority, for knowledge and skills could be passed on. Facilitators could offer alternative perspectives, different concepts and frames with which to view the world, help people name realities not visible within the dominant discourse, and contribute stories of how others have operated within power constraints. Carefully crafted questions could support the search for meaning of experiences. The challenge for teachers was to bring their own - 30 - perspective and facilitate learning without dominating, usmg their authority to promote student autonomy. The ideas of experiential learning have spread widely through western education circles. Weil and McGill (1989) saw four areas in which experiential learning theory informed practices: 1 . Assessing and accrediting learning from life and work experience. 2. For group consciousness raising, community action and social change. 3. Bringing about change in structures and techniques used in adult education. 4. For personal growth and development and group effectiveness. The second and third areas are relevant in this study as they have been used to suppo1t professionals who bring a wealth of experience to workshops, to reflect on and change their work practices. EDUCATION AND SOCIAL CHANGE All learning has consequences for society as well as for individuals, whether acquired in education institutions or through daily life. People live in social networks, their learning and behaviour affecting their interactions with others. Several commentators have seen education as a system of social control in societies characterised by relations of power and domination (Freire, 1972 & Illich, 1977). The traditional 'banking' approach to education reinforced this control with learners viewed as empty vessels, there to absorb knowledge that would fit them for their roles in society. Freire worked to support people from oppressed and marginalised groups to understand their oppression and take action to transform their world. (Freire, 1972). This he termed liberating education, education that emphasised participation and dialogue. Freire used the term praxis for the process whereby learners were distanced from their world in order to view it in a new and more critical light - 31 - Knowledge was not an independent entity that could be given to someone. Instead it was continually created and recreated by each learner. ln problem posing experiential education, teachers gave up some of the power of their position to become facilitators or 'animators', raising questions for participants who actively described their situations, analysed them and planned action. Through such processes people became disenchanted with the old ways and more willing to change. Alinsky (1971 ), in his manual for social change, saw revolution as needing to be preceded by reformation. People would be motivated to change by becoming aware of the problems in the prevailing system. Freire's early work (1970) was based on non-fom1al education of the oppressed in South America, but his later work ( 1987) was applied in new social movements in western societies. Throughout, his focus was on the oppressed , !:,TfOups that had been marginalised. This study however, focuses on people who work for and represent 'oppressors', for mental health servi ces are seen as a site of discrimination. ln spite of this different focus, Freire' s educational approach, which supported people to reflect on and analyse their own situation and role, is useful for both the group holding power and those seeking to increase their power in a movement for social change, as it supports individuals to reflect on their role in resisting or promoting social and organisational change. Yet some difference in approach may be necessary to ensure effectiveness when working with the group that holds the greater power. Rather than supporting people to understand their own oppression, the aim is to make visible how people' s actions may oppress others, to help them empathise with the group that is oppressed. Whereas an oppressed group can see direct personal benefit in changing their behaviours in order to liberate themselves from oppression, behaviour changes by people in power may not bring direct personal benefit. This may be especially true where management does not support changes. Only where managers support the new paradigm will new behaviours of participants be welcomed and rewarded in their workplaces. - 32 - A useful overview of forces that work for social change was put forward by Gladwell (2000). His central thesis was that ideas, products, messages and behaviours spread like viruses. He studied both social change and epidemics of disease and found three 'agents of change' in common which he named as follows: 1. The Law of the Few. Social 'epidemics ' were driven by a handful of exceptional people who were energetic, influential and willing to take risks. Some were connectors, bringing people together; others acted as ' mavens': gathering and spreading information. Yet a third kind were salesmen with energy, enthusiasm, charm, and optimism. 2. The Stickiness Factor. People promoting new ideas often looked for ways to reach people with messages but it was even more important that messages stuck in people's minds. Advertisers used catchy tunes or coupons that people had to fill out; public health educators needed to g ive instructions and aids to make new behaviours easier to perform. 3. The Power of Context. Epidemics were very sensitive to conditions and circumstances. Specific situations were so powerful they overwhelmed people's inherent predispositions, values, and upbringing. Even fundamental characteristics such as honesty varied according to circumstances. For example, people studying religion more often ignored someone in need when they were in a hurry. Although people's individual characters, habits, interests, were important they were hugely influenced by context (p. J 60). Small environmental changes could make a big difference to behaviours. There are some useful messages here for anti-discrimination work in organisations: o Cultural change may be hastened with the 'buy-in ' of a few key people (not necessarily those in power but those who are respected or central to networks). o Key messages of workshops must be ' sticky' in order to be retained . o The context of work practices (policies and procedures, performance appraisals and the like) needed to be changed in line with new learning. - 33 - Most workshops ai med at social and cultural change used experiential learning techniques involving active participation by learners. Kolb' s early work (1984) on ex.periential learning and further work by Heron (1993) pointed to the importance of reflection also being central in workshops. In its broadest sense, experiential learning arose from first hand direct experience. Participants personally encountered people or places or things that were relevant. Within workshops this may happen either literally or symbolically, through structured classroom based experiences. Encounters could be immediate, or recalled from past personal experience. Reflection on experiences turned them into learning. Kolb (1984) developed early experiential learning theory. He recorded that he was influenced by the work of Dewey, Lewin and Piaget, who all challenged the traditional way knowledge was thought to be transmitted. Dewey showed how education, work and personal development could be integrated, and stressed the value of experience as a source of knowledge. Through humanist psychologists such as Jung, subjective experience came to be valued and Lewin worked with these ideas in early action research; and Piaget's work on cognitive development pointed to the value of experience. Erikson extended Piaget's approach to children's learning and showed the influence of environment on adults. Leaming came to be understood as a life-long process. Building on the work of these theorists, Kolb (1984) developed education techniques based on the way people learn from experience. He advocated a four stage learning cycle as the basic educational structure. Concrete experiences were followed by reflective observation, leading to abstract conceptualization and then active experimentation with new modes of experience. Each stage promoted different abilities - behavioural, affective, symbolic and perceptual. Learning took place as knowledge was actively transformed within this cycle with the reflective stage seen as critical (Schon, 1987, Boud, 1985, & Freire, 1970). - 34 - Taking time to reflect on one's practice is increasingly important for professionals. Once seen as unquestioned authorities in their field, professionals now often face criticism and blame for mistakes, ineffectiveness and impropriety. Much professional education and practice used to be grounded solely in systematic scientific knowledge. In contrast, an experiential learning theorist, Schon (1987), saw effective professionals, whether engineers or clinicians, needing skills to make decisions in situations of uncertainty and in the face of conflicting demands. Schon promoted ' reflection in action ' for all professionals: a process he saw as artistry rather than a scientific process. However the skill of reflection is not yet central in the education of health professionals. Boyle (1994) noted nursing students on practice experienced discomfort as they knowingly participated in "care which can best be described as routinised, desensitized, habitualised" (p. 154). Due to a lack of emphasis on reflection and autonomy in their education, they were not prepared to effectively deal with such situations. A particularly useful model of experiential learning is that developed by Heron (below). In a four-stage ' up-hierarchy' model of experiential learning, that he termed 'open ego learning', the more deeply each stage was entered into, the more it enriched and empowered subsequent ones. Our psyches were grounded in feeling Practical mode Conceptual mode Imaginal mcx.le Affective mode A L Practice ~ / ' Discriminating basic concepts Variety of perceptual experiences imaginatively developed Personal orientation and positive emotional arousal Figure One: ]be up-hierarchy of open ego learning (Heron, 1993, p.82). - 35 - and from them emerged our imagination, memory and perception. Based on these were the domains of thought and language (conceptual mode) and then the practical modes of intention and action. Open ego learning was a first step toward full blown holistic learning, which involved intuition and reflection and deeper levels of the psyche. Developing the up-hierarchy into a learning cycle, Heron showed how it could be used to incorporate the stages into workshops. 3 PROPOSITIONS Discrim- ination of the basic structure Conceptual mode 2 PA ITERNS A variety of perceptual experi ences imaginatively developed lmaginal mode 1 PERSONS Perceptual orien­ tati on and positive emotional arousa l Affective mode 4 PRACTICE Active applicati on and foedback Practical mode Figure Two: Open ego learning as a cycle (Heron 1993 p. 83). 1 Persons referred to the "grounding importance of conscious feeling" (Heron, 1993, p.87), about acquaintance, empathy and attunement, a pre-condition of all experience. Heron saw this as a spiritual stage as the person opens up, acknowledging the transcendental self. Leaming occurred when, "emotionally engaged I can notice that what I perceive is discrepant from my conceptual models so I modify my actions" (Heron, 1993, p.87). In workshops this encompassed orientation and physical and - 36 - mental relaxation exercises that helped participants attain a positive emotional attitude to learning and resolved the negative emotions that obstructed learning 2 Patterns inter-wove and combined perception, memory and imagination. Heron (1993) noted that too often in Western culture facilitators went straight for conceptual content and left out the essential creative imagination. In a workshop setting this might involve a wide range of images, stories, songs that illustrate ideas using techniques such as role play, stories, analogy, sound, graphics etc. 3 Propositions refers to the more commonly used experiential technique of reflection. In workshops this might involve using questions and discussion to raise issues and tease out problems. 4 Practice was the action part of the cycle. In a workshop this might involve looking at the practical implications of learning and making action plans. Within this part of the workshop there was often a secondary cycle, as what was being experienced affected the learner, was taken in and processed. Heron also recommended using multi-perceptual techniques. What had been termed 'superleaming', emphasised techniques appealing to sight, hearing and kinaesthetic senses, encouraged relaxation and increased indirect learning. After researching these techniques and processes of experiential learning underpinning the design of the Trust's workshops, my attention turned to literature on attitude and behaviour change. ATTITUDE CHANGE A large body of positivist research in social psychology also proved useful in the design of workshops. There remain heated debates in this field (Olson & Zanna, 1993) but some common ground and useful insights are to be found. Early research on university students concentrated on quantitative studies of attitudes. An attitude was an 'evaluative state of mind towards some object' (Fishbein & Azjen,1975) and was a product of people's thinking (cognjtion), emotion (affect) and action (behaviours). It - 37 - was hoped that through influencing people's attitudes, behavioural changes would result. Various strands of attitude research evolved that have relevance to this study: 1. Personality research (Adorno, Frenkel-Brunswick, Levinson, & Sanford, 1950) examined the personalities and childhood experiences of people whose attitudes were measured as prejudiced, aiming to discover why some people were attracted to democracy and others to fascism. They found that people with authoritarian personalities were more likely to be fascist. This allowed for variability of individuals but made prejudice pathological. Yet racism and stigma and discrimination associated with mental illness are based on widely accepted beliefs. This approach did not account for prejudices held by people who may not be authoritarian, prejudices that may manifest as 'benevolent' paternalism. 2. Cognitive dissonance research looked at how people gained information and developed ideas or beliefs about the attitude object. Festinger, (1957, cited in Eagly & Chaiken 1992, p. 505) researched the idea that people tended to approach and attend to information that upheld their attitudes and beliefs but avoided or paid little attention to conflicting information. Cognitive dissonance theory showed people reluctant to advocate a view that violated their own attitudes unless they were motivated by a strong inducement. 3. Attitude change. Research by Brehm & Cohen (1962, cited in Eagly & Chaiken, 1992, p. 582) showed that strong attitudes were resistant to change; and attitudes became stronger and more resistant to change to the extent that people engaged in behaviour that linked them to their existing attitudinal position (Keisler, 1971, cited in Eagly & Chaiken, 1992, p.582). Other researchers (Cooper & Fazio 1984, cited in Eagly & Chaiken, 1992, p.677), have shown attitude change following dissonance more strongly in situations where subjects took responsibility for bringing about an unwanted consequence. They hypothesised that the 'good person-bad deed' inconsistency made people uncomfortable and induced them to change their attitude. - 38 - 4. The complexity of motivations. Early research looking at how attitudes affect behaviour was challenged by Fishbein & Azjen (1975), who showed that attitudes were not the only precursors or predictors of behaviour. More complex cognitive representations and processes, including beliefs, intentions and goals, interacted with attitudes in the planning and execution of actions. For example, researchers in the 1980s (Dovidio et al., 1989, cited in Olson & Zanna, 1993) demonstrated that beliefs in fairness and equality may restrain people who espouse racist attitudes from overtly racist behaviours. Only when they could be rationalised, did negative behaviours emerge. An example can be seen in the paternalism rife in the field of mental illness, justified by the belief that an experience of mental illness leaves people unable to make good riecisions. 5. Behaviour change preceded attitude change. Eagly & Chaiken (1992) acknowledged the relationship between attitudes and behaviour was more complex than had previously been recognised, identifying habits, self-identity and norms as also influencing behaviours. They also reported on studies showing that behavioural change often preceded attitude change. Although a person may feel negative towards someone, their behaviour might be positive because of other factors (perhaps the person is their employer, or legislation and policies prohibiting discrimination may be enforced). Over time attitudes changed to conform to their behaviours. This was in accord with Gladwell's (2000) 'Law of Context" and also underpinned the rights based approach in the Like Minds, Like Mine movement, which promoted policies, procedures and laws to enforce non-discriminatory behaviours. Current recommendations are that these approaches still need to be supplemented by education to help people understand why policies have been put in place (Like Minds, Like Mine, Like Mine national plan 2001 p.6). 6. Role playing and attitude change. Arising from the idea that behaviour change could precede attitude change came studies that measured the attitudes of subjects after they either advocated for a position themselves or listened to someone else advocating for a position. Results showed that communicating a position oneself, rather than listening to someone else do so, was the more - 39 - effective way to change attitudes (Janis & King, 1954, cited in Eagly & Chaiken, 1992, p.501). As well as pointing to a need for organisations holding workshops to be concurrently reviewing their policies and procedures, the understanding that behaviour change often comes prior to attitude change also has implications for workshop design. It would be helpful for participants to have opportunities to behave in ways congruent with the new paradigm during the workshop, through techniques such as role-play or group discussions where they can advocate new ideas. This pointed to the need to use experiential learning techniques that involved not only reflection on previous experience but also practical demonstration of new values, discourse and behaviours. This approach was also confirmed by my personal experiences and literature in anti­ racism education. LESSONS FROM ANTI-RACISM EDUCATION A study by the International Labour Organisation (1999) examined the effectiveness of one day workshops aimed at achieving equality for migrant and ethnic minority workers in Europe. It looked at workshops solely providing information; ones aimed at attitude change; and ones focussed on behaviour change through compliance with policies and regulations. It was found that workshops concentrating on giving information on different cultural characteristics appeared to act to confirm stereotypes. The International Labour Organisation report (1999) suggested cultural information also needed to emphasise characteristics different cultural groups have in common. The findings were supported by Dorninelli (1997) who noted that such approaches focussed attention on ethnic minorities and their communities rather than on white people and their power structures. Notably participants attending workshops centred on attitude change left feeling frustrated and powerless to change the phenomenon of discrimination in their daily work. While they recogilised that discrimination was a problem they had not been provided with the tools to resolve it. This finding echoed the earlier critique of - 40 - Katz' s Racism Awareness Training (1978) by Dominelli (1997, p.18), as having failed to root racism within a patriarchal capitalist society; and having created an end product of paralysing guilt rather than a spur to action. Maximum effectiveness, according to the ILO study, resulted when this spur to action was provided, in workshops that aimed at behavioural change and offered concrete and practical guidelines. THE CENTRALITY OF DISCOURSE Experience may be the basis of learning but the language describing experiences frames them. Language closely mirrors power relations so people can become trapped within the dominant paradigm and see no other ways of being. Discourse creates stigma through 'commonsense' understandings: widespread beliefs and attributions. In the area of stigma and discrimination associated with mental illness beliefs and attributions such as the linking of violence and mental illness are used to justify the marginalisation of people with experience of mental illness. Assumptions that are so widespread in a community that they become ' commonsense', work invisibly to lead people to interpret the world in certain ways, blinding them to the reality of how power works. For example, the term, ' mental illness' and linked beliefs (such as unpredictability) that accompany the label lead to assumptions that someone shouting angrily is doing so as a result of their illness rather than as a natural response to disempo werment. The concept of discourse embodies the notion that language is not only a means of communication of facts and feelings, but also of ideology: the choice of particular words and phrases structures expectations and aspirations, and frames what is legitimate to think and to do (Boud & Miller 1996, p 19). For example, many people believe democracy enables all citizens to have an equal voice. This belief may lead them to deny forces acting to silence oppressed groups in democratic societies. In such ways discourse may establish, sustain and reinforce oppressive relationships. - 4] - Another theorist, Fairclough (1989), noted that Ideology works when its workings are least visible. If one becomes aware that a particular aspect of common sense is sustaining power inequalities at one's expense, it ceases to be commonsense and may cease to have its capacity to sustain power inequalities, that is, to function ideologically. (p.85) Power as evident in discourse is fragmented and dispersed, seen in acts of resistance as well as in rituals of the powerful. In psychiatry (Foucault, 1973) the rituals of power were used to regulate and categorise, assess and observe people, defining what was ' normal' behaviour. Ideas expressed in discourse also worked on the minds of the oppressed, persuading people that their interests coincided with the powerful, encouraging subservience (Illich, 1976, & Breggin, 1991 ). DISCOURSE ANO BAC!SM Wetherell and Potter (1992) examined the way discourse was used in discrimination in Aotearoa/New Zealand, interviewing Pakeha on issues of race. They tracked the twists and turns of argument and showed the construct of ' attitude' may itself be an illusion, with variations in the 'attitudes' espoused by people, even within the space of one conversation. They noted how discourse had a number of functions such as disclaiming, justifying or blaming. Words used varied in meaning and implication (e.g. ' immigrant'), as did the context in which people used language. Their research affirmed the subtlety and ambiguity of racism as people used arguments to justify sometimes contradictory stances. Anti-racist arguments can be meshed together with support for racist policies; an argument mobilized in one direction only to veer back on itself Unlike the positivist psychologists ' view of discourse as a symptom of prejudice located in individuals, and prejudice as an error of judgment, postmodernist discourse - 43 - structure within which struggles arose, through analysing the effects of the discourse that legitimated it and basing anti-discrimination practice on small struggles related to specific issues. This literature was useful in pointing to the centrality of discourse and need for workshops to examine the language we use daily, how it reflects the use of power in mental health services and its implications for practices, language and behaviour. WHO SPEAKS FOR WHOM What you do speaks to me so loudly that I cannot hear what you are say mg - Quaker saying Not only what is spoken but also who may speak is an issue of power. There has been a growing service user movement among people with experience of mental illness that began with self-advocacy and self-help groups. Now there is also service user involvement in the Like Minds, Like Mine project to counter stigma and discrimination, with a national advisory group to the project and individuals involved in actions throughout the country. There are also consumer advisers in many secondary mental b alth services and a few individual consultants working as trainers, evaluators, and advisers to services. The often-used slogan 'nothing about us without us ' was the title of a book by James Charlton (1998). He saw this slogan as encapsulating the source of oppression in emphasising issues of control and voice. He quoted Ed Roberts, a leading figure of the disability rights movement, saying "when others speak for you, you lose" (p. 4). People with experience of mental illness who were advisers to the Trust, and who formed the reference group for this study, wished to facilitate workshops for mental health service staff themselves. This would give them a platform to be heard and model the changes they were advocating: that staff in mental health services should - 44 - listen to the voice of those they support. It would turn the common power dynamic of ' patient' and staff on its head. This pattern of people who have been hurt by discrimination expressing this in workshops for the group that have perpetrated the discrimination is usual in the disability rights movement, where there is an intrinsically and inextricably close relationship between service user and the service provider. It differs from some practices in anti-discrimination workshops in the area of racism, where some practitioners prefer members of the group that perpetrates discrimination to facilitate workshops for other members of their own group. There are a variety of practices in the field of anti-racism and these are examined in Chapter Four, as part of a detailed inquiry that arose after the facilitation of workshops by people with experience of mental illness was challenged. Research suggested that the voice of people with experience of mental illness was effective in promoting change. Studies on ways to reduce prejudice have often focussed on contact with members of a stigmatised group. This did not always produce positive attitude change. However evidence showed contact was beneficial where both groups cooperated and had equal status (Olson & Zanna, 1993) and had the opportunity to get to know one another (Desforges, Lord, Ramsey, Mason, Van Leeuwen, & West, 1991 ). Shera & Delva-Tauiliili (1 996) confirmed this finding with studies of social work students' attitudes before and after sessions of structured contact with someone described as mentally ill. Many researchers now feel that structured contact with 'mentally ill persons', which emphasizes their strengths and allows them to educate the non-mentally ill person, is critical to long-term generalisable attitude change towards the severely mentally ill. (p. 161) Interaction with a 'former mental patient', studied by Dansereau (1988, cited in Olson & Zanna, p.145), showed an increase in favourable attitudes among initially prejudiced subjects. This research however may not be generalisable to this study as it - 45 - was based on contact between people new to the field of mental illness who mostly had little prior contact with people with experience of mental illness. Here the focus is on mental health service staff who all have frequent and on-going contact with people with experience of mental illness, some for many years. Frequent contact is central in the relationship between people with experience of mental illness and mental health service staff when they are unwell, although distance is maintained through professional boundaries. However staff interaction with people who have experienced mental illness but are currently in a state of wellness is less common and may help to reduce stigma and discrimination. Many staff in mental health services see people only when they are unwell, adding to the strength of stereotypes. To conclude, this initial literature review informed workshop plans in the following ways: Table One: Issues arising from the initial literature review Issue Considerations 1 Adult learning theory Ensure there is application to practice 2 Experiential learning cycle A