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Psychiatric survivors movement

 

Psychiatric survivors movement

The psychiatric survivors movement (more broadly consumer/survivor/ex-patient movement[1]) is a diverse association of individuals who either currently access mental health services (known as consumers or service users), or who are survivors of interventions by psychiatry, or who are ex-patients of mental health services.[2]

The psychiatric survivors movement arose out of the civil rights movement of the late 1960s and early 1970s and the personal histories of psychiatric abuse experienced by some ex-patients.[3] The key text in the intellectual development of the survivor movement, at least in the USA, was Judi Chamberlin's 1978 text, On Our Own: Patient Controlled Alternatives to the Mental Health System.[2][4] Chamberlin was an ex-patient and co-founder of the Mental Patients' Liberation Front.[5] Coalescing around the ex-patient newsletter Dendron,[6] in late 1988 leaders from several of the main national and grassroots psychiatric survivor groups felt that an independent, human rights coalition focused on problems in the mental health system was needed. That year the Support Coalition International (SCI) was formed. SCI's first public action was to stage a counter-conference and protest in New York City, in May, 1990, at the same time as (and directly outside of) the American Psychiatric Association's annual meeting.[7] In 2005 the SCI changed its name to Mind Freedom International with David W. Oaks as its director.[3]

Common themes are "talking back to the power of psychiatry", rights protection and advocacy, and self-determination. While activists in the movement may share a collective identity to some extent, views range along a continuum from conservative to radical in relation to psychiatric treatment and levels of resistance or patienthood.[8]

Contents

  • History 1
    • Precursors 1.1
    • Early 20th century 1.2
    • 1950s to 1970s 1.3
    • 1980s and 1990s 1.4
  • The movement today 2
  • Impact 3
  • See also 4
  • References 5
  • External links 6

History

Precursors

The modern self-help and advocacy movement in the field of mental health services developed in the 1970s, but former psychiatric patients have been campaigning for centuries to change laws, treatments, services and public policies. "The most persistent critics of psychiatry have always been former mental hospital patients", although few were able to tell their stories publicly or to openly confront the psychiatric establishment, and those who did so were commonly considered so extreme in their charges that they could seldom gain credibility.[9] In 1620 in England, patients of the notoriously harsh Bethlem Hospital banded together and sent a "Petition of the Poor Distracted People in the House of Bedlam (concerned with conditions for inmates)" to the House of Lords. A number of ex-patients published pamphlets against the system in the 18th century, such as Samuel Bruckshaw (1774), on the "iniquitous abuse of private madhouses", and William Belcher (1796) with his "Address to humanity, Containing a letter to Dr Munro, a receipt to make a lunatic, and a sketch of a true smiling hyena". Such reformist efforts were generally opposed by madhouse keepers and medics.[10]

In the late 18th century, moral treatment reforms developed which were originally based in part on the approach of French ex-patient turned hospital-superintendent Jean-Baptiste Pussin and his wife Margueritte. From 1848 in England, the Alleged Lunatics' Friend Society campaigned for sweeping reforms to the asylum system and abuses of the moral treatment approach. In the United States, The Opal (1851–1860) was a ten volume Journal produced by patients of Utica State Lunatic Asylum in New York, which has been viewed in part as an early liberation movement. Beginning in 1868, Elizabeth Packard, founder of the Anti-Insane Asylum Society, published a series of books and pamphlets describing her experiences in the Illinois insane asylum to which her husband had had her committed.

Early 20th century

A few decades later, another former psychiatric patient,

  • The Antipsychiatry Coalition Coalition of people who have been harmed by psychiatry and their supporters
  • MindFreedom International Coalition of psychiatric consumers, survivors, and ex-patients fighting for "human rights in mental health"
  • Guide on the History of the Consumer Movement from the National Mental Health Consumers' Self-Help Clearinghouse
  • Cohen, Oryx (2001) Psychiatric Survivor Oral Histories: Implications for Contemporary Mental Health Policy. Center for Public Policy and Administration, University of Massachusetts, Amherst
  • Linda J Morrison. (2006) A Matter of Definition: Acknowledging Consumer/Survivor Experiences through Narrative Radical Psychology Volume Five
  • Shock Treatment - The Killing of Susan Kelly A poem by insulin/electro shock survivor Dorothy Dundas
  • McLean, A. (2003). Recovering Consumers and a Broken Mental Health System in the United States: Ongoing Challenges for Consumers/ Survivors and the New Freedom Commission on Mental Health. Part I: Legitimization of the Consumer Movement and Obstacles to It. International Journal of Psychosocial Rehabilitation. 8, 47-57
  • McLean, A. (2003) Recovering Consumers and a Broken Mental Health System in the United States: Ongoing Challenges for Consumers/ Survivors and the New Freedom Commission on Mental Health. Part II: Impact of Managed Care and Continuing Challenges International Journal of Psychosocial Rehabilitation. 8, 58-70.
  • American Iatrogenic Association "Promoting accountability for medical professiunals and institutions"
  • Transcript of interview with Peter Breggin, M.D., author of "Toxic Psychiatry," Talking Back To Prozac" and "Brain-Disabling Treatments in Psychiatry: Drugs, Electroshock and the Psychopharmaceutical Complex."
  • Psychiatry chapter from Heart Failure - Diary of a Third Year Medical Student by Michael Greger, M.D.

External links

  1. ^ Talking Back to Psychiatry: The Psychiatric Consumer/Survivor/Ex-Patient Movement (2005)
  2. ^ a b Corrigan, Patrick W.; David Roe; Hector W. H. Tsang (2011-05-23). Challenging the Stigma of Mental Illness: Lessons for Therapists and Advocates. John Wiley and Sons.  
  3. ^ a b Oaks, David (2006-08-01). "The evolution of the consumer movement". Psychiatric Services 57 (8): 1212.  
  4. ^ Chamberlin, Judi (1978). On Our Own: Patient-Controlled Alternatives to the Mental Health System. New York: Hawthorne. 
  5. ^ Rissmiller, David J.; Joshua H. Rissmiller (2006-06-01). "Evolution of the antipsychiatry movement into mental health consumerism". Psychiatric Services 57 (6): 863–6.  
  6. ^ Ludwig, Gregory (2006-08-01). "Letter". Psychiatric Services 57 (8): 1213.  
  7. ^ About Us — MFI Portal
  8. ^ "Talking Back to Psychiatry: Resistant Identities in the Psychiatric Consumer/Survivor/Ex-patient Movement - D-Scholarship@Pitt". Etd.library.pitt.edu. Retrieved 2013-09-21. 
  9. ^ a b c d e f Dain, N. (1989)Critics and dissenters: Reflections on anti-psychiatry in the United States Journal of the History of the Behavioral Sciences Volume 25 Issue 1, Pages 3 - 25
  10. ^ Crossley, N. (2006) Contesting Psychiatry: Social Movements in Mental Health Chapter: contextualizing contention. Routledge ISBN 0-415-35417-X
  11. ^ Clifford Beers, A Mind That Found Itself, Pittsburgh and London: University of Pittsburgh Press, 1981 ISBN 0-8229-5324-2
  12. ^ Phil Fennell (1996) Treatment Without Consent: Law, Psychiatry and the Treatment of Mentally Disordered People Since 1845 Routledge, 1996 ISBN 0-415-07787-7 pg108
  13. ^ Rachel Grant-Smith (1922) The Experiences of an Asylum Patient John P. McGovern Historical Collections and Research Center
  14. ^ a b c d e f g h i Reaume G. (2002) Lunatic to patient to person: nomenclature in psychiatric history and the influence of patients' activism in North America. Int J Law Psychiatry. Jul-Aug;25(4):405-26. PMID 12613052 doi:10.1016/S0160-2527(02)00130-9
  15. ^ Wendy Chan, Dorothy E. Chunn, Robert J. Menzies (2005) Women, Madness and the Law: A Feminist Reader Routledge Cavendish, ISBN 1-904385-09-5
  16. ^ "Disability History Timeline". Rehabilitation Research & Training Center on Independent Living Management.  
  17. ^ "Identifying and Overcoming Mentalism" (PDF). Counterpsych.talkspot.com. Retrieved 2013-09-21. 
  18. ^ New Law and Ethics in Mental Health Advance Directives: The Convention on ... - Penelope Weller - Google Books. Books.google.com. Retrieved 2013-09-21. 
  19. ^ Terry Messman Mad In America: An Indictment of Psychiatric Abuse and Brain Damage August 2005 Edition of Street Spirit, A publication of the American Friends Service Committee
  20. ^ Goldstrom ID, Campbell J, Rogers JA, et al. (2006)
  21. ^ Everett B (1994) Something is happening: the contemporary consumer and psychiatric survivor movement in historical context. Journal of Mind and Behavior, 15:55–7
  22. ^ a b Rissmiller DJ & Rissmiller JH (2006) Evolution of the antipsychiatry movement into mental health consumerism. Psychiatric Services, Jun;57(6):863-6.
  23. ^ Oaks, D. (2006) The Evolution of the Consumer Movement, Psychiatric Services 57:1212
  24. ^ a b c d e Hollis, I. (2002) About the impossibility of a single (ex-)user and survivor of psychiatry position Acta Psychiatrica Scandinavica Volume 104 Issue s410, Pages 102 - 106
  25. ^ "UN Enable - Working Group - Contribution by World Network of Users and Survivors of Psychiatry (WNUSP) 30 December 2003". Un.org. Retrieved 2013-09-21. 
  26. ^ "UN Enable - Promoting the rights of Persons with Disabilities - Contribution by WNUSP". Un.org. Retrieved 2013-09-21. 
  27. ^ "RESOURCE: Implementing the Disability Rights Treaty, for Users, Survivors of Psychiatry | We Can Do". Wecando.wordpress.com. Retrieved 2013-09-21. 
  28. ^ Mezzichi, J.E. (2007) The dialogal basis of our profession: Psychiatry with the Person World Psychiatry. 2007 October; 6(3): 129–130.
  29. ^ Will Hall, edited by Richard C Morais (2008) Healing Voices Forbes business magazine:Philanthropic Pitch August 29th
  30. ^ Gabrielle Glaser (2008) ‘Mad Pride’ Fights a Stigma. The New York Times." May 11
  31. ^ MindFreedom The Story of MindFreedom Free Live Internet Radio
  32. ^ Madness Radio Madness Radio
  33. ^ Anne Beales, Susie Crooks, Dan Fisher, Noreen Fitzgerald, Connie McKnight, Shaun MacNeil, and Jenny Speed (2008) Interrelate: A New International Mental Health Consumer/Survivor Coalition
  34. ^ Geoffrey Nelson, Joanna Ochocka, Rich Janzen, John Trainor (2006) A longitudinal study of mental health consumer/survivor initiatives: Part 1 - Literature review and overview of the study Journal of Community Psychology, Volume 34 Issue 3, Pages 247 - 260
  35. ^ Geoffrey Nelson, Joanna Ochocka, Rich Janzen, John Trainor (2006) A longitudinal study of mental health consumer/survivor initiatives: Part 2 - A quantitative study of impacts of participation on new members Journal of Community Psychology, Volume 34 Issue 3, Pages 247 - 260
  36. ^ Geoffrey Nelson, Joanna Ochocka, Rich Janzen, John Trainor (2006) Part 3 - A qualitative study of impacts of participation on new members Journal of Community Psychology, Volume 34 Issue 3, Pages 247 - 260
  37. ^ Geoffrey Nelson, Joanna Ochocka, Rich Janzen, John Trainor (2006) Part 4 - Benefits beyond the self? A quantitative and qualitative study of system-level activities and impacts Journal of Community Psychology, Volume 34 Issue 3, Pages 247 - 260
  38. ^ Torrey, 2002 Hippie healthcare policy: while one government agency searches for the cure to mental diseases, another clings to the '60s notion that they don't exist.
  39. ^ McLean, A. (2003) Recovering Consumers and a Broken Mental Health System in the United States: Ongoing Challenges for Consumers/ Survivors and the New Freedom Commission on Mental Health. Part II: Impact of Managed Care and Continuing Challenges International Journal of Psychosocial Rehabilitation. 8, 58-70.
  40. ^ E. Fuller Torrey (1997) Taking Issue: ‘Psychiatric Survivors’ and Non-Survivors, 48:2 Psychiatric Services 143

References

See also

Well-positioned forces in the USA, led by figures such as psychiatrists E. Fuller Torrey and Sally Satel, and some leaders of the National Alliance for the Mentally Ill, have lobbied against the funding of consumer/survivor groups that promote antipsychiatry views or promote social and experiential recovery rather than a biomedical model, or who protest against outpatient commitment.[38][39] Torrey has said the term "psychiatric survivor" used by ex-patients to describe themselves is just political correctness and has blamed them, along with civil rights lawyers, for the deaths of half a million people due to suicides and deaths on the street.[40] His accusations have been described as inflammatory and completely unsubstantiated, however, and issues of self-determination and self-identity said to be more complex than that.[14]

There has also been criticism of the movement. Organized psychiatry often views radical consumerist groups as extremist, as having little scientific foundation and no defined leadership, as "continually trying to restrict the work of psychiatrists and care for the seriously mentally ill", and as promoting disinformation on the use of involuntary commitment, electroconvulsive therapy, stimulants and antidepressants among children, and neuroleptics among adults. However, opponents consistently argue that psychiatry is territorial and profit-driven and stigmatizes and undermines the self-determination of patients and ex-patients[22] The movement has also argued against social stigma or mentalism by wider society.

A significant theme that has emerged from consumer/survivor work, as well as from some psychiatrists and other mental health professionals, has been a recovery model which seeks to overturn therapeutic pessimism and to support sufferers to forge their own personal journal towards the life they want to live; some argue however that it has been used as a cover to blame people for not recovering or to cut public services.

Further qualitative studies indicated that CSIs can provide safe environments that are a positive, welcoming place to go; social arenas that provide opportunities to meet and talk with peers; an alternative worldview that provides opportunities for members to participate and contribute; and effective facilitators of community integration that provide opportunities to connect members to the community at large.[36] System-level activism was perceived to result in changes in perceptions by the public and mental health professionals (about mental health or mental illness, the lived experience of consumer/survivors, the legitimacy of their opinions, and the perceived value of CSIs) and in concrete changes in service delivery practice, service planning, public policy, or funding allocations. The authors noted that the evidence indicated that the work benefits other consumers/survivors (present and future), other service providers, the general public, and communities. They also noted that there were various barriers to this, most notably lack of funding, and also that the range of views represented by the CSIs appeared less narrow and more nuanced and complex than previously, and that perhaps the consumer/survivor social movement is at a different place than it was 25 years ago.[37]

[35] A recent series of studies in Canada compared individuals who participated in CSIs with those who did not. The two groups were comparable at baseline on a wide range of demographic variables, self-reported psychiatric diagnosis, service use, and outcome measures. After a year and a half, those who had participated in CSIs showed significant improvement in social support and quality of life (daily activities), less days of psychiatric hospitalization, and more were likely to have stayed in employment (paid or volunteer) and/or education. There was no significant difference on measures of community integration and personal empowerment, however. There were some limitations to the findings; although the active and nonactive groups did not differ significantly at baseline on measures of distress or hospitalization, the active group did have a higher mean score and there may have been a natural pattern of recovery over time for that group (

Research into consumer/survivor initiatives (CSIs) suggests they can help with social support, empowerment, mental wellbeing, self-management and reduced service use, identity transformation and enhanced quality of life. However, studies have focused on the support and self-help aspects of CSIs, neglecting that many organizations locate the causes of members’ problems in political and social institutions and are involved in activities to address issues of social justice.[34]

Impact

A new International Coalition of National Consumer/User Organizations was launched in Canada in 2007, called Interrelate.[33]

Survivor David Oaks, Director of MindFreedom, hosts a monthly radio show [31] and the Freedom Center initiated a weekly FM radio show now syndicated on the Pacifica Network, Madness Radio [2], hosted by Freedom Center co-founder Will Hall.[32]

[30]

The United States Massachusetts-based Forbes business magazine.[29]

The National Coalition for Mental Health Recovery (formerly known as National Coalition for Mental Health Consumer/Survivor Organizations) campaigns in the United States to ensure that consumer/survivors have a major voice in the development and implementation of health care, mental health, and social policies at the state and national levels, empowering people to recover and lead a full life in the community.

[28] In 2007 at a Conference held in Dresden on "Coercive Treatment in Psychiatry: A Comprehensive Review", the president and other leaders of the

WNUSP is a consultant organization for the World Health Organization.

As well as advocacy and reform campaigns, the development of self-help and user/survivor controlled services is a central issue. The Runaway-House in London, England, that among other support and advocacy activities puts on an annual "Bonkersfest".

There are many grassroots self-help groups of consumers/survivors, local and national, all over the world, which are an important cornerstone of empowerment. A considerable obstacle to realizing more consumer/survivor alternatives is lack of funding.[24] Alternative consumer/survivor groups like the National Empowerment Center[1] in the US which receive public funds but question orthodox psychiatric treatment, have often come under attack for receiving public funding[14] and been subject to funding cuts.

The most common terms in Germany are "Psychiatrie-Betroffene" (people afflicted by/confronted with psychiatry) and "Psychiatrie-Erfahrene" (people who have experienced psychiatry). Sometimes the terms are considered as synonymous but sometimes the former emphasizes the violence and negative aspects of psychiatry. The German national association of (ex-)users and survivors of psychiatry is called the Bundesverband Psychiatrie-Erfahrener (BPE).[24]

In the United States, the number of mental health mutual support groups (MSG), self-help organizations (SHO) (run by and for mental health consumers and/or family members) and consumer-operated services (COS) was estimated in 2002 to be 7,467.[20] In Canada, CSI's (Consumer Survivor Initiatives) are the preferred term. "In 1991 Ontario led the world in its formal recognition of CSI's as part of the core services offered within the mental health sector when it began to formally fund over CSI's across the province. Consumer Survivor Initiatives in Ontario Building an Equitable Future' (2009) pg 7. The movement may express a preference for the "survivor" label over the "consumer" label, with more than 60 percent of ex-patient groups reported to support anti-psychiatry beliefs and considering themselves to be "psychiatric survivors." [21] There is some variation between the perspective on the consumer/survivor movement coming from psychiatry, anti-psychiatry or consumers/survivors themselves.[22][23]

The movement today

Science journalist Robert Whitaker has concluded that patients rights groups have been speaking out against psychiatric abuses for decades - the torturous treatments, the loss of freedom and dignity, the misuse of seclusion and restraints, the neurological damage caused by drugs - but have been condemned and dismissed by the psychiatric establishment and others. Reading about the experiences they suffered through has been described as comparable to reading the stories of Holocaust survivors.[19] Recipients of mental health services demanded control over their own treatment and sought to influence the mental health system and society's views.

An emphasis on voluntary involvement in services is said to have presented problems to the movement since, especially in the wake of deinstitutionalization, community services were fragmented and many individuals in distressed states of mind were being put in prisons or re-institutionalized in community services, or became homeless, often distrusting and resisting any help.[9]

In late 1988, leaders from several of the main national and grassroots psychiatric survivor groups decided an independent coalition was needed, and Support Coalition International (SCI) was formed in 1988, later to become MindFreedom International. In addition, the World Network of Users and Survivors of Psychiatry (WNUSP), was founded in 1991 as the World Federation of Psychiatric Users (WFPU), an international organisation of recipients of mental health services.

A 1986 report on developments in the United States noted that "there are now three national organizations ... The ‘conservatives’ have created the National Mental Health Consumers' Association ... The ‘moderates’ have formed the National Alliance of Mental Patients ... The ‘radical’ group is called the Network to Abolish Psychiatry".[14] Many, however, felt that they had survived the psychiatric system and its "treatments" and resented being called consumers. The National Association of Mental Patients in the United States became the National Association of Psychiatric Survivors. "Phoenix Rising: The Voice of the Psychiatrized" was published by ex-inmates (of psychiatric hospitals) in Toronto from 1980 to 1990, known across Canada for its antipsychiatry stance.[14]

By the 1980s, individuals who considered themselves "consumers" of mental health services rather than passive "patients" had begun to organize self-help/advocacy groups and peer-run services. While sharing some of the goals of the earlier movement, consumer groups did not seek to abolish the traditional mental health system, which they believed was necessary. Instead, they wanted to reform it and have more choice. Consumer groups encouraged their members to learn as much as possible about the mental health system so that they could gain access to the best services and treatments available. In 1985, the National Mental Health Consumers' Association was formed in the United States.[14]

1980s and 1990s

[9] Some activists condemned psychiatry under any conditions, voluntary or involuntary, while others believed in the right of people to undergo psychiatric treatment on a voluntary basis. Voluntary psychotherapy, at the time mainly psychoanalysis, did not therefore come under the same severe attack as the somatic therapies. The ex-patients emphasized individual support from other patients; they espoused assertiveness, liberation, and equality; and they advocated user-controlled services as part of a totally voluntary continuum. However, although the movement espoused

The major spokespeople of the movement have been described in generalities as largely white, middle-class and well-educated. It has been suggested that other activists were often more anarchistic and anti-capitalist, felt more cut off from society and more like a minority with more in common with the poor, ethnic minorities, feminists, prisoners & gay rights than with the white middle classes. The leaders were sometimes considered to be merely reformist and, because of their "stratified position" within society, to be uncomprehending of the problems of the poor. The "radicals" saw no sense in seeking solutions within a capitalist system that creates mental problems. However, they were united in considering society and psychiatric domination to be the problem, rather than people designated mentally ill.[9]

In 1978 Judi Chamberlain's book On Our Own: Patient Controlled Alternatives to the Mental Health System was published. It became the standard text of the psychiatric survivors movement, and in it Chamberlain coined the word "mentalism." [14][16] [17][18]

Some all-women groups developed around this time such as Women Against Psychiatric Assault, begun in 1975 in San Francisco.[15]

Dorothy Weiner and about 10 others, including Tom Wittick, established the Insane Liberation Front in the spring of 1970 in Canada, the Mental Patients Association, started to publish In A Nutshell, while in the US the first edition of the first national publication by ex-mental patients, Madness Network News, was published in Oakland, continuing until 1986.[14]

By the 1970s, the medical model, peer-run services were based on the principle that individuals who have shared similar experiences can help themselves and each other through self-help and mutual support. Many of the individuals who organized these early groups identified themselves as psychiatric survivors. Their groups had names such as Insane Liberation Front and the Network Against Psychiatric Assault.

Coming to the fore in the 1960s, an anti-psychiatry movement challenged the fundamental claims and practices of mainstream psychiatry. The ex-patient movement of this time contributed to, and derived much from, antipsychiatry ideology, but has also been described as having its own agenda, described as humanistic socialism. For a time, the movement shared aims and practices with "radical therapists", who tended to be Marxist. However, the consumer/survivor/ex-patients gradually felt that the radical therapists did not necessarily share the same goals and were taking over, and they broke away from them in order to maintain independence.

The 1950s saw the reduction in the use of lobotomy and shock therapy. These used to be associated with concerns and much opposition on grounds of basic morality, harmful effects, or misuse. Towards the 1960s, psychiatric medications came into widespread use and also caused controversy relating to adverse effects and misuse. There were also associated moves away from large psychiatric institutions to community-based services (later to become a full-scale deinstitutionalization), which sometimes empowered service users, although community-based services were often deficient.

1950s to 1970s

Originated by crusaders in periods of liberal social change, and appealing not so much to other sufferers as to elite groups with power, when the early reformer's energy or influence waned, mental patients were again mostly friendless and forgotten.[9]

[14] We Are Not Alone (WANA) was founded by a group of patients at Rockland State Hospital in

[13] In 1922, ex-patient Rachel Grant-Smith added to calls for reform of the system of neglect and abuse she had suffered by publishing "The Experiences of an Asylum Patient".[12] In the UK, the National Society for Lunacy Law Reform was established in 1920 by angry ex-patients sick of their experiences and complaints being patronisingly discounted by the authorities who were using medical "window dressing" for essentially custodial and punitive practices.[9]

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