Lunatic to patient to person

International Journal of Law and Psychiatry 25 (2002) 405 – 426

Lunatic to patient to person: Nomenclature in psychiatric history and the influence of patients’ activism in North America Geoffrey Reaume* Associated Scholar, Institute for the History and Philosophy of Science and Technology, University of Toronto, Toronto, ON, Canada

1. Introduction ‘‘Mentally ill called ‘loons’ on the job.’’1 This headline from an article in the Toronto Globe and Mail in October 1998 refers to evidence given at the first inquest into the shooting death of Edmund Yu by Toronto police on February 20, 1997. Mr. Yu was diagnosed as having had paranoid schizophrenia and lived on the margins of society, sometimes in rundown boarding homes, other times on the street. At the inquest into his death, the attitudes of police and public transit officials involved in Mr. Yu’s shooting revealed the derogatory views held towards people with mental disorders as being ‘‘loons.’’ This terminology has served to stigmatize and isolate people for centuries because of their mental state. In some instances, this prejudice has had fatal consequences, as it did for Mr. Yu who was shot to death while he wielded a small hammer, surrounded by heavily armed police officers in the back of an empty bus. The attitudes that helped to cost Edmund Yu his life have been around for as long as the term ‘‘lunatic’’ has existed. Yet, so too have the efforts to destigmatize the condition of people referred to as ‘‘lunatics’’ or ‘‘loons’’ to change the language that is used to categorize people in this way. This article will examine how nomenclature has been significantly influenced by mental health professionals in the period up to the 1970s and will then conclude with a discussion of the increasing influence of current and former psychiatric patients in recent decades.

* 19 Homewood Avenue, Apartment 301, Toronto, Ontario, Canada M4Y 2J7. Tel.: +1-416-324-8808. E-mail address: [email protected] (G. Reaume). 1 Jane Gadd, Mentally ill called ‘loons’ on the job: TTC officer: Term useful to summarize situation inquest told, GLOBE AND MAIL, October 7, 1998. 0160-2527/02/$ – see front matter D 2002 Published by Elsevier Science Inc. PII: S 0 1 6 0 - 2 5 2 7 ( 0 2 ) 0 0 1 3 0 - 9

406

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

Over the past 30 years in particular, people who have a psychiatric history have had a greater degree of influence than ever before in the debate over the shaping of terminology about people labeled mentally ill and the direction of public policies in regard to their treatment. This study will trace the recent history of this evolving terminology within the context of psychiatric patients’ activism, primarily since 1970. The purpose of linking these developments together is to show how recent changes to nomenclature grew out of community activism. In the course of this discussion, it will become evident that the way in which terminology is shaped has been greatly influenced by those who previously had labels imposed on them but who are now taking back the nomenclature, so to speak, and recasting terminology in a way that includes the perspectives of those people previously considered ‘‘lunatics.’’ Before getting into the recent history and influence of patients’ activism and their influence on what people call one another, a brief discussion of terminology up to the 1970s is needed.

2. Terminology up to the mid 20th century ‘‘Lunacy, like rain, falls upon the evil and the good; and although it must for ever remain a fearful misfortune, yet there may be no more sin or shame in it than there is in an ague fit or a fever.’’2 This line was written almost 150 years ago by an anonymous inmate of the Glasgow Royal Asylum for Lunatics in his book, The Philosophy of Insanity. If one were to simply change the word ‘‘lunacy’’ to something a bit more up-to-date, his words would ring as true now as when this unknown figure wrote these comments in the mid 19th century. This is particularly true in regard to his plea to remove the stigma associated with what he and his peers experienced. Down through the ages various terms have been used to describe people who have been and are experiencing mental disturbance. These terms have been, and continue to be, the subject of debate and controversy, both among people so described, as well as among family members and mental health professionals. This article will discuss how these terms have evolved, primarily from the 19th century and how they have been influenced by changing health care priorities and social attitudes towards people with mental health problems. The terminology dealt with here does not refer in any detail to the development of diagnostic categories such as schizophrenia but relates only to broad descriptions that were, or are, meant to describe people who are considered mentally disturbed. These terms range from lunatic during the 19th century to consumer and survivor at the beginning of the 21st century. The second half of this study will include a discussion of the diverse forms of selfdefinition, which recipients of mental health treatment have chosen and why some people have accepted certain terms and rejected others.

2

Anonymous, THE PHILOSOPHY OF INSANITY, By a Late Inmate of the Glasgow Royal Asylum for Lunatics at Gartnavel. Intro. Frieda Fromm-Reichmann 105 (1947).

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

407

This terminology is more than just verbalized. It carries with it potent visual images that have come down through history to make people with mental disorders into objects of scorn, ridicule, fear, and hatred. Portraying people with mental problems as behaving like an animal or as violent beasts has been with us for centuries. The Old Testament story of the Babylonian king Nebuchadnezzar, punished by God for his vanity, portrays him as a beastly, depraved figure during the 7 years that he ate grass and lived with wild beasts. At the end of this period, ‘‘my reason was restored to me,’’ a clear sign of his former state of unreason, or madness, when he had been ‘‘cast out from among men.’’3 This grotesque image of mad people has been perpetuated through visual representations and the popular imagination for generations, with William Blake’s 1795 painting of Nebuchadnezzar walking on his hands and knees with a wild look on his face, being a classic example.4 These horrific images are not the only images of madness, as madness and creativity are also well-known ideas in art and literature.5 However, the animalistic image of a madperson as someone to fear has remained the most powerful of these stereotypes, stereotypes that have survived in popular media representations and the public mind and that people have been fighting against for literally generations.6 Lunatic is probably the most enduring term to be discussed here. It was socially and medically acceptable to define people in this way well into the second half of the 19th century, just as the terms ‘‘idiot’’ and ‘‘imbecile’’ were used by doctors to describe people who had what we now call developmental disabilities.7 The fact that terms like these are used as insults when applied to any person today indicates how much this language has evolved and what it means to be called such names. However, as will be discussed shortly, there have been attempts by some people with a psychiatric history to reclaim words, like lunatic, that other people would just as soon leave behind as a bad memory. The term lunatic, of course, refers to the moon and was commonly used by the 13th and 14th centuries in Europe to describe people who were considered mentally unbalanced. Its origins stretch back to ancient times and humoral theories of health and illness. In ancient Greece and Rome, it was believed that too much black bile could cause madness, especially

3

NEW AMERICAN BIBLE, Book of Daniel, Chapter 4, 1029 (1992). Sander L. Gilman, DISEASE AND REPRESENTATION: IMAGES OF ILLNESS FROM MADNESS TO AIDS 33 (1988). For a fuller discussion of this point, see: Sander L. Gilman, SEEING THE INSANE (1982, 1996). 5 Notions of art and creativity have often romanticized madness as something positive, a point that has been quite contentious. For various views, see: Albert Rothenberg, CREATIVITY AND MADNESS: NEW FINDINGS ON OLD STEREOTYPES (1990); Kay Redfield Jamison, TOUCHED BY FIRE: MANIC DEPRESSIVE ILLNESS AND THE ARTISTIC TEMPERAMENT (1994); Allen Thiher REVELS IN MADNESS: INSANITY IN MEDICINE AND LITERATURE (1999). 6 Otto F. Wahl, MEDIA MADNESS: PUBLIC IMAGES OF MENTAL ILLNESS (1995); Scott Simmie and Julia Nunes, THE LAST TABOO: A SURVIVAL GUIDE TO MENTAL HEALTH CARE IN CANADA (2001). 7 Harvey G. Simmons, FROM ASYLUM TO WELFARE (1982); James W. Trent Jr., INVENTING THE FEEBLE MIND: A HISTORY OF MENTAL RETARDATION IN THE UNITED STATES (1994); Steven Noll, FEEBLE-MINDED IN OUR MIDST (1995); Elaine E. Castles, ‘WE’RE PEOPLE FIRST’: THE SOCIAL AND EMOTIONAL LIVES OF PEOPLE WITH MENTAL RETARDATION (1996). 4

408

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

melancholia.8 It was also popularly believed in antiquity that madness was caused by some supernatural power beyond the body, a belief that had its most horrific impact centuries later during the medieval period on women in particular who were condemned as witches and burned at the stake.9 In Roman mythology, Luna was the goddess who watched over the moon and the months, thus, luna came to mean the moon and a person who was considered mad was moonstruck, or a lunatic. The crescent-shaped moon, which is known in Latin as lunate or lunated, has come to be a celestial symbol for a lunatic.10 Yet, it was at the time of the full moon, or the new moon, rather than the crescent-shaped moon that so-called ‘‘lunatics’’ were considered to be at their most distressed state, though this word was also used to describe other types of behavior considered bizarre.11 While ideas about the causes of madness had long since moved away from the astrological belief in mental disorder by the mid 1800s, the term lunatic remained popular among both medical men and laypeople as a way to describe people who were ‘‘disordered in mind.’’12 Thus, the term Lunatic Asylums came to be used and was widely accepted well into the 19th century as a way of describing both the place and people who resided in these buildings. To what extent did asylum inmates have on influencing the way these places were viewed and referred to by the wider public? By the late 19th century, the term ‘‘asylum’’ had lost its original meaning as a place of refuge and was associated with abuses that had been widely publicized in pamphlets and newspapers, including by former inmates of asylums. One of the most well known of these writers was Elizabeth Packard. Her example shows that ex-insane asylum inmates could, and did, have an influence on nomenclature, even if it was to reinforce perceptions that already existed. In the 1860s, when she was in her forties, Elizabeth Packard was put in a state asylum for 3 years in Jacksonville, Illinois, by her husband, Reverend Theophilus Packard, because she raised questions about his Calvinist religious views to their children, in particular, his support for slavery, which she strongly opposed. Writers and activists who had once been insane asylum inmates, like Elizabeth Packard, were important in helping to raise public awareness about oppressive conditions in these places. She had great influence on reforming various state laws on inmates’ rights and committal procedures in an effort to prevent a wife from being locked up solely on the word of her husband as occurred to her, and also lobbied federal officials to protect inmates’ mail from being censored by asylum officials, though no such law

8

George Rosen, MADNESS IN SOCIETY: CHAPTERS IN THE HISTORICAL SOCIOLOGY OF MENTAL ILLNESS 74 (1969). 9 Ibid., p. 73; Franz G. Alexander and Sheldon T. Selesnick, THE HISTORY OF PSYCHIATRY: AN EVALUATION OF PSYCHIATRIC THOUGHT AND PRACTICE FROM PREHISTORIC TIMES TO THE PRESENT 66 – 68 (1966); Jane Ussher, WOMEN’S MADNESS: MISOGYNY OR MENTAL ILLNESS? 42 – 62 (1991). 10 Ibid., p. 66; Basil Clarke, MENTAL DISORDER IN EARLIER BRITAIN 105 (1975). 11 Allan Chapman, Astrological Medicine, in HEALTH, MEDICINE AND MORTALITY IN THE SIXTEENTH CENTURY 293 (1979); H.C. Erik Midelfort, A HISTORY OF MADNESS IN SIXTEENTH CENTURY GERMANY 128 – 29 (1999). 12 Alexander and Selesnick 66 HISTORY OF PSYCHIATRY.

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

409

was passed by the U.S. Congress, as it was by some states.13 Packard helped to popularize the idea of the asylum inmate as being no different than a prisoner. Titles from some of her books make this connection explicit: Marital Power Exemplified in Mrs. Packard’s Trial, and SelfDefense from the Charge of Insanity; or Three Years’ Imprisonment for Religious Belief, by the Arbitrary Will of a Husband with an Appeal to the Government to so Change the Laws as to Protect the Rights of Married Women (1866); Mrs. Olsen’s Narrative of Her One Year Imprisonment at Jacksonville Insane Asylum (1868); and The Prisoners’ Hidden Life, or Insane Asylums Unveiled . . . (1868).14 Thus, to be an asylum inmate in the second half of the 19th century was equated as not any better than being in a prison, according to ex-asylum inmate Elizabeth Packard. Considering her well-known and widespread activism on behalf of asylum inmates during this period, Packard’s terminology would have received a good deal of attention. Indeed, ex-asylum inmates were not the only ones who publicly referred to the penal nature of these facilities. Toronto Asylum Superintendent Daniel Clark, writing in 1891, referred to large asylums where people are ‘‘confined as in prison.’’15 Fully aware of these negative views towards the words ‘‘insane asylum inmate,’’ as well as ‘‘lunatic’’ during the late 19th and early 20th centuries, medical officials were intent on changing some of the words and impressions associated with these places and people. By the 1870s in North America, officials who ran Lunatic Asylums renamed them Insane Asylums, from the Latin ‘‘insanus,’’ or ‘‘unsound,’’ such as in Toronto where, by 1871, the ‘‘Provincial Lunatic Asylum’’ became the ‘‘Asylum for the Insane, Toronto.’’16 While the term ‘‘lunatic’’ continued to be used in published reports in Ontario up to 1905, ‘‘inmates’’ and especially, ‘‘patients’’ gradually came to supplant the older astrology-based term. Eventually, by the early 1900s, ‘‘lunatic’’ was dropped by medical authorities in places like Ontario as the primary term of reference for people in asylums. This was due in part because of its astrological connotations that doctors did not want to maintain for reasons of professionalism, and in part because of the way in which it had been adopted as a derisive way of describing anyone who had that label attached to them. Daniel Clark, Superintendent of the Toronto Asylum from 1875 to 1905, made this point in his 1900 Annual Report: The word lunatic has conveyed erroneous impressions to the public in respect to the insane. The inference is drawn that the moon has to do with, or in some mysterious way influences the mentally deranged . . . A large number of superstitions cluster around the supposed potency of lunar influences. This is very natural when the ignorant observe its attractiveness in tidal relations. This occult agency of the moon was expected to have a perturbing effect on the insane, hence the expression ‘moon struck.’ There is no foundation for this delusion, as

13

Barbara Sapinsley, THE PRIVATE WAR OF MRS. PACKARD 128 – 30; 138 – 44; 182 – 83; 188 – 90; 192 (1991). 14 Cited in: Jeffrey L. Geller and Maxine Harris, eds., WOMEN OF THE ASYLUM: VOICES FROM BEHIND THE WALLS, 1840 – 1945 347 – 48 (1994). 15 Daniel Clark, ANNUAL REPORT 7 (1891). 16 WEBSTER’S NEW UNIVERSAL UNABRIDGED DICTIONARY 2nd Edition 947 (1979). The title change is evident when contrasting the names in the provincial ANNUAL REPORTS for 1869 – 70 and 1870 – 71.

410

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

physical and mental diseases obey more powerful laws in their operation than any causes which could operate emanating from our satellite.17

Directly connected to these views, Clark had been lobbying for years to replace the custodial name ‘‘asylum’’ with the more scientific-sounding ‘‘hospital’’ since, he argued, ‘‘medical treatment has become a prominent feature’’ at such facilities.18 Though not commenting specifically on the term ‘‘lunatic,’’ Ontario’s Inspector of Asylums, Edwin R. Rogers, wrote in support of the change to ‘‘hospitals’’ in his 1905 report. He stated that provincial officials must ‘‘seek to inculcate the belief that patients sent to our Institutions are sick people, in fact hospital patients’’ [emphasis added].19 It is significant that in the Annual Report the very next year, and in subsequent years, the term ‘‘lunatic’’ disappears from the title and reports of Ontario’s mental institutions. Similarly, people who were confined in these facilities were less frequently referred to in public reports as prison-like ‘‘inmates.’’ Instead, by this period, ‘‘inmate’’ was gradually replaced more seriously than before with the term ‘‘patient.’’ In Ontario, by 1907, places that were formerly called ‘‘asylums’’ were now officially known as ‘‘Hospitals for the Insane.’’20 All of these changes took place during a period in which asylum superintendents were trying to improve the image of their profession among other medical professionals and the public at large by adopting more standardized classification techniques developed by the German doctor Emil Kraepelin and by Eugen Bleuler in Switzerland.21 Eliot Freidson has observed how efforts by medical professionals to secure ‘‘jurisdiction over the label of illness and anything to which it is attached’’ is important to ensuring their dominance in a given field.22 For an emerging mental health profession, being able to ‘‘reform’’ the language pertaining to asylum inmates and mental institutions was part of an effort to enhance their professional status. This effort to try to rename and redirect popular language that was used to describe mental hospitals and those who lived in them was therefore tied in with wider professional aims of promoting a supposedly more scientific model towards mental disorders. Canadian ‘‘alienist’’ C.K. Clarke hoped that this would put psychiatry ‘‘on a more solid basis than has yet been the case.’’23 Thus, a custodial term, like ‘‘asylum inmate,’’ came across as

17

Daniel Clark, ANNUAL REPORT 6 (1900). Daniel Clark, ANNUAL REPORT 6 (1895). 19 Edwin O. Rogers, ANNUAL REPORT xi (1905). 20 S.A. Armstrong, ANNUAL REPORT x (1906). For developments in Britain, see: Andrew Scull, Charlotte MacKenzie, Nicholas Hervey, MASTERS OF BEDLAM: THE TRANSFORMATION OF THE MADDOCTORING TRADE 263 – 265 (1996). 21 Thomas E. Brown, Dr. Ernest Jones, Psychoanalysis, and the Canadian Medical Profession, 1908 – 1913 in MEDICINE IN CANADIAN SOCIETY: HISTORICAL PERSPECTIVES 350 (S. Shortt, ed.,1981); G.E. Berrios and R. Hauser, Kraepelin: Clinical Section—Part II, in A HISTORY OF CLINICAL PSYCHIATRY 280 – 91 (G. Berrios, R. Porter, eds., 1995); Lynn Gamwell and Nancy Tomes, MADNESS IN AMERICA: CULTURAL AND MEDICAL PERCEPTIONS OF MENTAL ILLNESS BEFORE 1914 119 – 21 (1995). 22 Eliot Freidson, PROFESSION OF MEDICINE: A STUDY IN THE SOCIOLOGY OF APPLIED KNOWLEDGE 251 (1970). 23 C.K. Clarke, Dementia Praecox, 21 CANADIAN J. OF MED. AND SURGERY 220 (1907). 18

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

411

too harsh and oppressive for officials who ran mental institutions if they wanted to reshape their public image. On the other hand, the term ‘‘mental hospital patient’’ was intended by its promoters to offer the semblance of hope for a caring and curative environment, even if this was far from the reality in many cases. Similarly, referring to people as having a ‘‘mental illness’’ dates from this period in the early 1900s. Kraepelin’s ideas that psychic suffering was due to a biological or organic cause was, and remains, extremely influential in the reconceptualization of terminology about people who receive psychiatric treatment.24 In Ontario, by 1931, the word ‘‘insane’’ was completely dropped from the title of mental institutions and instead the term ‘‘hospitals for the mentally ill’’ came to be used in published reports.25 But, of course, the reality of how people referred to individuals in mental hospitals was another story. As the title from a 1909 novel called The Lunatic At Large shows, the use of the word ‘‘lunatic’’ was not about to go out of style because of a few elite-initiated semantic changes.26 It is unlikely that the doctors who made these changes in wording thought that such words would completely disappear from daily conversation. These ancient forms of categorizing people were too ingrained and the changes mentioned in medical reports did not have much effect initially since most people outside of the medical profession did not read such documents anyway. Indeed, Dr. C.K. Clarke admitted as much a year after these changes took effect when he mentioned that ‘‘even Acts of Parliament cannot change the habit of the general public in styling Hospitals for the Insane ‘Asylums.’ The name, innocent in itself, has become detestable . . ..’’27 It should not be surprising that this change was slow, but some changes in language did occur. This can be seen in patients’ writing from the period between the 1890s and 1930s, where a number of people in institutions in Toronto, St. Peter Minnesota, Elgin Illinois, and Vinita Oklahoma refer to themselves and others with whom they were confined as patients. Some also identify themselves as an inmate or a prisoner and most continue to identify the building as an asylum, though hospital is also used.28 The warehousing referred to earlier continued well into the mid 20th century, and it was in conditions like these that a new force for changing terminology evolved. People like Elizabeth Packard and Clifford Beers, another ex-inmate whose writing became well known after 1908, had made important contributions to

24

P. Hoff, Kraepelin: Clinical Section—Part I in A HISTORY OF CLINICAL PSYCHIATRY 269 – 73 (G. Berrios, R. Porter, eds., 1995). 25 This change can be seen in reports beginning with ANNUAL REPORT OF ONTARIO HOSPITALS FOR THE MENTALLY ILL, SUBNORMAL AND EPILEPTIC (1931). 26 J. Storer Clouston, THE LUNATIC AT LARGE (1909). 27 C.K. Clarke, ANNUAL REPORT 5 (1908). 28 ‘‘Alice Bingham Russell (1883, 1903 – 1906); Kate Lee (1899 – 1900); Marian King (1920s)’’ in WOMEN OF THE ASYLUM 193 – 213, 265 – 74 (Jeffrey L. Geller and Maxine Harris, eds., 1994); Marle Woodson, BEHIND THE DOOR OF DELUSION BY ‘‘INMATE WARD 8’’ (W.W. Savage, J.H. Lazalier, eds., 1994, originally published in 1932 by Macmillan); Geoffrey Reaume, REMEMBRANCE OF PATIENTS PAST: PATIENT LIFE AT THE TORONTO HOSPITAL FOR THE INSANE, 1870 – 1940 (2000).

412

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

advocating for the improvement of conditions in institutions.29 However, beginning in the mid 20th century current and former mental patients began to get together in organized groups to a greater extent than ever before. These diverse groups have exerted a greater degree of influence on public attitudes and language used to describe people who receive psychiatric treatment than their more isolated forebears were able to during the period prior to widespread patients’ activism.

3. From ‘‘we are not alone’’ to deinstitutionalization, 1940s to 1970 The first organized mental patients’ group in North America was called WANA—We Are Not Alone. Founded by a group of patients at Rockland State Hospital in New York in the mid to late 1940s, We Are Not Alone continued to meet in New York City as an ex-patient group after people were discharged.30 In its early years, this group was exclusively run by former patients as a self-help group offering support and advice to people who were current or former mental patients. By the early 1950s, however, WANA dissolved after it was taken over by mental health professionals who transformed it into Fountain House, a social service agency and clubhouse for ex-psychiatric patients, which continues to operate to this day. During this period, people who received psychiatric treatment identified themselves as patients, and this term was generally unchallenged as a self-description by current or former patients until the 1970s. However, the political dispute that brought about the end of the first mental patients’ group in North America is revealing for what it says about the evolution of concepts around self-definition by ex-patients themselves, which would eventually make itself felt in the way language is used. One of the members of WANA, Jordan Hess, noted that this group ‘‘was unique because patients ran it—that was abolished when it became Fountain House.’’31 Rather than being in charge of the group that they had established, the founders of WANA found themselves pushed aside by professionals with money and clout who made them ‘‘members’’ of the newly reconstituted organization. They were now back under the organizational control of people they wanted independence from, professionals who saw mental patients as ‘‘sick’’ and who needed guidance from those with the traditional power and influence in the mental health field—social workers and doctors.32 This patronizing attitude by health care workers breed resentment among some current and former patients that they could not do anything for

29

Sapinsley, MRS. PACKARD; Norman Dain, CLIFFORD W. BEERS, ADVOCATE FOR THE INSANE (1981). 30 Judi Chamberlin, ON OUR OWN: PATIENT-CONTROLLED ALTERNATIVES TO THE MENTAL HEALTH SYSTEM 87 (1978), says the founding date was ‘‘in the late 1940s’’; ‘‘Movement History’’ 37/38 DENDRON 7 (1996), places WANA’s founding date as 1943. 31 Chamberlin, ON OUR OWN, 88. 32 Ibid., pp. 90 – 91, 93.

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

413

themselves, a resentment that eventually found expression in much more militant groups beginning in the early 1970s and in the way some ex-patients chose to identify themselves. In the decade prior to the emergence of widespread activism by psychiatric patients in North America, there had already been a number of developments that contributed to later linguistic and conceptual changes. Well-known writings, which were highly critical of mental institutions, of psychiatry, and of the concept of mental illness, brought a sharper focus to this topic, beginning with Erving Goffman’s classic 1961 book Asylums: Essays on the Social Situation of Mental Patients and Other Inmates.33 Goffman, a sociologist, specifically used language like ‘‘asylums’’ and ‘‘inmates’’ that medical professionals had being trying to replace with less harsh sounding terms like hospital and patient, as was mentioned earlier, though he also used these terms as well. The very title, not to mention the contents, of Goffman’s book was a challenge to efforts by psychiatrists to reshape the terminology and perceptions about mental institutions and their occupants since the early decades of the 20th century. A reviewer in The Psychiatric Quarterly objected that Goffman’s approach goes ‘‘from prisons to mental hospitals to monasteries and convents, so that the picture is not one of a mental hospital, but of various types of institutions where ‘involuntary servitude’ of one type or another is accepted . . . His point of view is completely negative . . .’’34 In a supplement to this same publication, a second review questioned Goffman’s qualifications to do this research and stated that his book ‘‘does a disservice to the field of sociology’’ for his supposedly selective use of evidence and noted that ‘‘The classical meaning of the word asylum is missing in this book.’’35 Clearly, this sociological interloper had hit a nerve with the psychiatric establishment. The implications of the reviewer’s comments are clear—mental hospitals are not prisons but are instead places of refuge—this being the ‘‘classical meaning of the word asylum,’’ which Goffman did not mention. His critique of contemporary mental health facilities as being akin to a prison that were ‘‘total institutions’’ devoid of humane care was reminiscent of the writings of earlier critics such as Elizabeth Packard nearly a century before.36 The more things changed, the more things seemed to stay the same. But in fact, things had changed and would continue to change to a degree that Elizabeth Packard could not have imagined. Unlike earlier periods, there was now a vocal critic from within the ranks of psychiatry itself who attacked the very concepts and terms upon which the profession was based. Thomas Szasz, a professor of psychiatry based in Syracuse, New York, wrote a

33

Erving Goffman, ASYLUMS: ESSAYS ON THE SOCIAL SITUATION OF MENTAL PATIENTS AND OTHER INMATES (1961). 34 Review of ASYLUMS by Erving Goffman in 36:2 THE PSYCHIATRIC QUARTERLY 366 (1962, no author). 35 Review of ASYLUMS by Erving Goffman in 36 THE PSYCHIATRIC QUARTERLY SUPPLEMENT 363 – 64 (1962, no author). It is worth noting that other mainstream psychiatric journals, such as the AMERICAN JOURNAL OF PSYCHIATRY and the BRITISH JOURNAL OF PSYCHIATRY, did not even bother to review Goffman’s book. 36 Goffman, ASYLUMS, pp. 3 – 124.

414

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

number of books, the most famous probably being The Myth of Mental Illness, which was published the same year as Goffman’s study.37 In this and other books, Szasz attacked the medical model of mental illness and argues that this term is used to pass moral judgements on those who have been diagnosed and deprived of their liberty in the case of people who were confined. There were a number of other writers during the sixties who offered well-known critiques of psychiatry both in regard to its origins, as well as in regard to contemporary practices, such as Michel Foucault and R.D. Laing.38 Academic critics of psychiatry have been strongly criticized, most notably Szasz for his emphasis on patient autonomy and individual liberty, wanting to do away with mental hospitals regardless of the social consequences for people who live there, many of whom have only the streets to return to.39 These attacks on the institutions of psychiatry, coupled with the growing movement for civil rights for marginalized groups, had some influence on large-scale deinstitutionalization by the1960s in Canada and the United States. Another factor that has been advanced as a cause of deinstitutionalization has been the widespread use of neuroleptic drugs, beginning with chlorpromazine, which was first introduced in North America in 1954, and the desire to cut costs by governments in mental health care beginning in the 1960s.40 It needs to be pointed out that researchers disagree on the cause and effect argument in regard to the largescale discharge of psychiatric patients, the massive use of neuroleptic drugs, and changes in fiscal policy.41 What can be said with certainty is that these twin issues, the widespread use of drugs to treat inpatients and outpatients, and the lack of community supports, such as affordable, safe housing, for significant numbers of discharged patients, has become one of the most contentious legacies of this period.

37 Thomas Szasz, THE MYTH OF MENTAL ILLNESS: FOUNDATIONS OF A THEORY OF PERSONAL CONDUCT (1961). 38 Michel Foucault, MADNESS AND CIVILIZATION: A HISTORY OF MADNESS IN THE AGE OF REASON (1965); R.D. Laing, THE DIVIDED SELF (1960); R.D. Laing, THE POLITICS OF EXPERIENCE (1967). 39 Janet Vice, FROM PATIENTS TO PERSONS: THE PSYCHIATRIC CRITIQUES OF THOMAS SZASZ, PETER SEDGEWICK AND R.D. LAING (1992). For a defense of Szasz, see: Ronald Leifer, The Psychiatric Repression of Thomas Szasz: Its Social and Political Significance, 2:4 PSYCHNEWS INTERNATIONAL 1 – 30 (1997). 40 Harvey Simmons, UNBALANCED: MENTAL HEALTH POLICY IN ONTARIO, 1930 – 1989 157 – 96 (1990); Dylan Tomlinson, UTOPIA, COMMUNITY CARE AND THE RETREAT FROM THE ASYLUMS 5 – 7 (1991); Philip Bean and Patricia Mounser, DISCHARGED FROM MENTAL HOSPITALS 17 – 24 (1993); David Healy, THE ANTI-DEPRESSANT ERA 43 – 48 (1997); Peter Barham, CLOSING THE ASYLUM: THE MENTAL PATIENT IN MODERN SOCIETY 11 – 21 (2nd Edition, 1997); Barbara Everett, A FRAGILE REVOLUTION: CONSUMERS AND PSYCHIATRIC SURVIVORS CONFRONT THE POWER OF THE MENTAL HEALTH SYSTEM 37 – 38 (2000). 41 See for example: Andrew Scull, DECARCERATION: COMMUNITY TREATMENT AND THE DEVIANT, A RADICAL VIEW 79 – 94 (2nd Edition 1984); Michael McCubbin, Deinstitutionalization: The Illusion of Disillusion, 15 THE JOURNAL OF MIND AND BEHAVIOR 35 – 54 (1994); Edward Shorter, A HISTORY OF PSYCHIATRY 278 – 81 (1997); Robert Whitaker, MAD IN AMERICA: BAD SCIENCE, BAD MEDICINE, AND THE ENDURING MISTREATMENT OF THE MENTALLY ILL 155 – 59 (2001).

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

415

Thus, by the late 1960s and early 1970s, there were a number of far-reaching changes that had taken place, which saw more ex-patients released into the community than ever before. This occurred at a time when psychiatry was coming under increasing attack from within and without and widespread protest movements had transformed attitudes and ideas on a whole range of issues. It was in this atmosphere of change and challenge that a series of new psychiatric patients’ groups emerged who offered their own challenges to the way in which they were defined.

4. The growth of psychiatric patients’ activism in North America since the 1970s and their influence on nomenclature Most of the activism that has developed by mental patients occurred in the years after the Black civil rights movement in the United States achieved prominence during the 1950s and 1960s and also after the anti-Vietnam war movement and student movements were underway in the mid to late 1960s. This patients’ rights activism was also taking place during the time that the movement for women’s rights, or second-wave feminism, was happening, as was the struggle for the rights of gays and lesbians, as well as Native peoples and people with physical disabilities all were becoming more organized and outspoken. Thus, it was part of a broader movement for social and political change in the United States, Canada, and elsewhere. While mental patients’ activism has not had the level of popular support on the left as did the Black civil rights movement or anti-Vietnam war protests, people involved in patients’ rights activism have exerted influence on both mental health policy and terminology, influence that continues in varying degrees to this day. There was, and remains, a significant crossover of people involved in left-wing social movements and the ex-patients’ movement. While tensions have always existed with nonpsychiatrized leftists over inclusion of psychiatric patients’ issues, the experiences gained from involvement in other groups on the left has been important in helping to spur the growth of the ex-patients movement. With more people out of mental hospitals, there was a larger number of people who had experienced life in an institution who could now make links with one another—and develop links they did through political involvement in various progressive causes. It did not take long for ex-patients to realize that, if other people could organize to advance a common cause, ex mental patients could do the same. Dorothy Weiner, a ‘‘veteran radical at age 24’’ who had been active in the anti-Vietnam War movement, and about 10 others, including socialist Tom Wittick, established the ‘‘Insane Liberation Front’’ in the Spring of 1970 in Portland, Oregon.42 Though the Insane Liberation Front lasted for only 6 months, its influence in the history of North American ex-patients groups was notable. News that former inmates of mental 42

Kathy Hoke, Moment in the Movement: Spring 1970, 37/38 DENDRON 7 (1996). For developments in Britain at this time, see: Nick Crossley, Fish, field, habitus, and madness: the first wave mental health users movement in Great Britain, 50:4 BRITISH JOURNAL OF SOCIOLOGY 647 – 670 (1999). Thanks to Lilith Finkler for bringing this article to my attention.

416

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

institutions were organizing was carried back to other parts of the continent. Individuals such as Howard Geld, known as Howie the Harp for his harmonica playing, left Portland where he been involved in ILF to return to his native New York to help found the Mental Patients Liberation Project in 1971.43 During the early 1970s, groups spread to California, New York, and Boston, which were primarily antipsychiatry in outlook, opposed to forced treatment including forced drugging, shock treatment and involuntary committal.44 Members also chose to be public about their personal medical history of having been mental patients to an extent that had not been seen before in organized groups. Among these early ex-mental patient activists, there was a new found sense of militancy, a point that becomes clear when considering the terminology that they chose. Activists used words that were intended to cast off the stereotype of the passive mental patient incapable of doing anything for themselves, while also using language that wanted to convey a sense of fighting against oppression. These words included ‘‘liberation’’ and ‘‘inmates,’’ which are very much in line with the idea of a mental institution as a prison.45 The language also included ironic or satirical references to derogatory descriptions that they had endured and also stressed a separatist view towards psychiatry. In addition to organized groups, there were also newsletters and magazines. In 1972, the first organized group in Canada, the Mental Patients Association in Vancouver, started to publish In A Nutshell, which continues to be published to this day, while in the US that same year, the first edition of the first national publication by ex-mental patients, Madness Network News, was published in Oakland, which continued publishing until 1986.46 In Toronto, there were several groups that were active in the mid 1970s, but it was Ontario Mental Patients Association, which started in 1977, later called ‘‘On Our Own’’ that established the first psychiatric ex-patient group in Ontario. The explanation of why their name changed is revealing about how activists chose to self-identify during this period and is worth quoting at length: If you don’t recognize the name ON OUR OWN, it may be because we just adopted the name last month—March 1980 . . . We started out in 1977 as the Ontario Mental Patients’ Association (OMPA). We didn’t like the name much ourselves—the words ‘‘mental patient’’

43

Hoke, Spring 1970, 7. For a historical time-line (though some dates are different from other sources cited in this article), see the web site for Mad Nation re ‘‘Movement History of the Consumer/Survivor/Ex-patient/User Community’’: hhttp:// www.netwroksplus.net/fhp/madnation/csxuhistory.htmi. Other sources on the early history of psychiatric patients’ groups in North America include, Mel Starkman, The Movement, 2:3 PHOENIX RISING: THE VOICE OF THE PSYCHIATRIZED 2A – 16A (1981); Lenny Lapon, MASS MURDERERS IN WHITE COATS: PSYCHIATRIC GENOCIDE IN NAZI GERMANY AND THE UNITED STATES 159 – 216 (1986). 45 These points were made to the author during interviews with individuals who were activists in Toronto antipsychiatry groups during the late 1970s and early 1980s: Don Weitz (April 30, 1999); Mel Starkman (July 2, 1999); Carla McKague (September 7, 1999). 46 Bonnie Burstow and Don Weitz, eds. SHRINK RESISTANT: THE STRUGGLE AGAINST PSYCHIATRY IN CANADA 357 – 58 (1988); Sherry Hirsch, et. al. MADNESS NETWORK NEWS READER (1974). 44

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

417

have a lot of negative connotations—and planned to change it at some point. We were pushed into changing it by the Government of Ontario when we applied for incorporation. The government was afraid we might be confused with the Mental Health Association, so we couldn’t incorporate as OMPA. So we suggested the name Free Psychiatric Inmates. No, said the government. You’re implying that people in psychiatric hospitals are prisoners, and that will never do. To speed up incorporation we adopted a name almost nobody liked, but which was innocuous enough to please the government: the Ontario Patients’ Self-Help Association (OPSHA). And we’ve been OPSHA up until last month, when we voted to adopt a name that we felt said a lot more about who we are, what we’ve done, and where we’re going. So now, in name as well as in fact, we’re ON OUR OWN, and we think we can promise not to confuse you by changing our name again.47

In addition to being a self-help group, it was also a drop-in centre, completely controlled by ex-patients and had a used goods store that helped to raise funds for their work called ‘‘The Mad Market,’’ the title of which was meant to ‘‘satirize the traditional ‘mental illness/ mental patient’ myths and stigmas, and also to let the public know who we are—mad like a fox . . . Drop in soon—we guarantee you won’t go away mad.’’48 The name used for this drop-in centre was also the title for probably the best known book published by an ex-patient during this period, Judi Chamberlin’s On Our Own.: Patient-Controlled Alternatives to the Mental Health System, which was published in the United States in 1978.49 This title is important, for it stresses an independence from professional mental health workers that would eventually be a source of friction among activists, both in terms of how to relate to one another and how to use language to describe people who are in psychiatric treatment. Indeed, as the above quote about the drop-in centre indicates, the term ‘‘patient’’ came to be increasingly rejected by some activists during these early years of organizing. Toronto advocacy lawyer Carla McKague argued that this term has been used to pathologize people who received psychiatric treatment as being passive, sick, and therefore not worth listening to.50 A 1983 Canadian antipsychiatry article entitled, ‘‘Not Patients—Human Beings,’’ indicated the degree of hostility to this term that had developed among some people by this time.51 No doubt much of this was due to the stigma associated with the term ‘‘mental patient.’’ Helping to bring these changes over terminology into sharper focus, Judi 47 On Our Own [no author], 1:1 PHOENIX RISING: THE OUTSPOKEN VOICE OF PSYCHIATRIC INMATES 2 (1980). True to their word, the name of this drop-in centre was never changed again. It folded in 1996 rather quietly, quite in contrast to its robust beginnings. After the heady early years of this drop-in, many of its antipsychiatry founders were purged or resigned over political differences by the late 1980s. On Our Own’s operators avoided any controversial antipsychiatry positions during its final years, partly due to the insistence of the Ontario Government, which funded it, partly due to the views of the people involved in running it who supported the medical model. 48 On Our Own [no author], 1:2 PHOENIX RISING: THE OUTSPOKEN VOICE OF PSYCHIATRIC INMATES 7, 9 (1980). 49 Judi Chamberlin, ON OUR OWN: PATIENT-CONTROLLED ALTERNATIVES TO THE MENTAL HEALTH SYSTEM (1978). 50 Carla McKague, interview with the author, September 7, 1999, Toronto. 51 Bonnie Burstow, Not Patients—Human Beings, 4:2 PHOENIX RISING: THE VOICE OF THE PSYCHIATRIZED 30 – 34 (1983).

418

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

Chamberlin coined the word ‘‘Mentalism—the unreasonable fear of mental patients.’’52 It was a clear effort to raise awareness of the discrimination faced by psychiatric patients, as being along the lines of other negative ‘‘isms,’’ such as sexism or racism. It was in the context of criticisms of the word ‘‘patient’’ and the push for greater civil rights of people labeled mentally ill that the term ‘‘consumer’’ began to be promoted by mental health professionals. While ‘‘patient’’ continued to be used by professionals, ‘‘consumer’’ became increasingly attractive due to its tie-in with the North American capitalist system of a consumer society and the prospect of choice. The term ‘‘consumer,’’ of course, encompasses all manner of ‘‘transactions’’ from retail shopping to people choosing medical services. It first appears in health care literature in the late 1960s and early 1970s in both the United States and Canada as part of the wider consumer movement then gaining steam, and it was meant to encompass the entire health care field, not just psychiatry.53 By 1977, mental health professionals such as Robert Sadoff and Louis Kopolow in the United States connected psychiatric patient advocacy with ‘‘consumers’ rights.’’54 By 1979, this had become mental health ‘‘consumer demands,’’ and in 1981, an article was published entitled, ‘‘Reaction of an Angry Consumer,’’ though the author, Ellen Colom, an ex-patient, preferred to use the term ‘‘clients’’ in most of her comments.55 From rights to demands to anger, the term ‘‘consumer’’ began its life in the mental health field in a somewhat strident tone. This reflected the wider push for rights by ex-patients, many of whom had no desire to be identified as consumers. However, the initial stridency about ‘‘consumer demands’’ was mainly intended as a wake-up call to mental health professionals to reform the system from within by responding to organized ex-patients’ anger that was boiling up all around them. Louis Kopolow, then Chief of Patient Rights and Advocacy Program, National Institute of Mental Health, wrote in 1979: While the initial impetus of consumerism was to protect citizens from exploitation in the profitmaking market-place, attention soon shifted to conditions existing in nonprofit charitable service organizations such as schools and hospitals. There too, neglect of human rights and the delivery of poor quality of services were also occurring.56

Kopolow implored fellow psychiatrists to pay attention to these demands for change in order to create ‘‘a more responsive mental health system which is sensitive to the human

52

Chamberlin, ON OUR OWN, 196. William Boothe, Mary Alice Beetham and Marvin Strauss, BIBLIOGRAPHY ON CONSUMER PARTICIPATION IN COMPREHENSIVE HEALTH PLANNING (1969); J.T. McLeod Research Associates Ltd., CONSUMER PARTICIPATION, REGULATION OF THE PROFESSIONS, DECENTRALIZATION OF HEALTH SERVICES A Report Submitted to the Minister of Public Health, Saskatchewan, August 1973. 54 Robert Sadoff and Louis Kopolow, THE MENTAL HEALTH PROFESSIONAL’S ROLE IN PATIENT ADVOCACY: AN EMERGING FORCE IN CONSUMERS’ RIGHTS (1977). 55 Louis E. Kopolow, Consumer Demands in Mental Health Care, 2 INT’L J. OF LAW AND PSYCHIATRY 263 – 70 (1979); Ellen Colom, Reaction of an Angry Consumer, 17:1 COMMUNITY MENTAL HEALTH JOURNAL 92 – 7 (1981). 56 Kopolow, Consumer Demands, INT’L J. OF LAW AND PSYCHIATRY 263 (1979). 53

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

419

needs of patients as well as their clinical and legal rights.’’57 From the outset of its use, the term ‘‘consumer’’ was linked up with being part of a movement within mainstream psychiatry that wanted to be seen as incorporating the views of patients in their own treatment while also improving their ‘‘quality of services.’’ This connection eventually led to government funding by the mid 1980s with the aim of increasing ‘‘consumer empowerment’’ in the community.58 An indication of the fluidity of these terms can be seen in the fact that, in 1981, Kopolow published an article using the term ‘‘client’’ instead.59 While ‘‘client’’ has come to be widely used among mental health professionals, ‘‘consumer’’ was more widely taken up by increasing numbers of current and former psychiatric patients during the 1980s, so much so that, in 1985, the National Mental Health Consumers’ Association was formed in the United States.60 By this time, ‘‘consumer participation in mental health’’ was also being promoted in Canada.61 During this same period, nomenclature among antipsychiatry activists who had been in mental institutions took quite a different route. They saw people labeled with a psychiatric diagnosis not only as victims of oppression but also as having arisen from past trials, like a phoenix rising from the ashes of defeat—a name chosen for one of a host of antipsychiatry publications that sprouted up in the 1970s and 1980s. Phoenix Rising: The Voice of the Psychiatrized founded by Carla McCague and Don Weitz, both of whom had been in mental institutions, was published in Toronto from 1980 to 1990.62 Known across Canada for its antipsychiatry stance, most of its writers thought of themselves as ex-inmates, no longer as ex-patients. Its subtitle for most of its history—the ‘‘voice of the psychiatrized’’—encapsulates attempts by some of the most radical activists to try to find a term that was specific to their experiences and views of psychiatry without seeming to go along with the medical model. Political differences among activists involved in groups formed by people who had been in mental hospitals, is evident in the names they chose for themselves. A 1986 report on 57 Ibid., p. 270. Though ‘‘consumer’’ is prominent in the title of this article, ‘‘patient’’ is used most frequently in the text. 58 Athena McLean, Empowerment and the Psychiatric Consumer/Ex-Patient Movement in the United States: Contradictions, Crisis and Change, 40:8 SOCIAL SCIENCE AND MEDICINE 1054 (1985). See also the collection of articles on ‘‘consumer participation’’ in CANADA’S MENTAL HEALTH 37:2 (June 1989). The politics of government funding is also very much part of this story, though one which will not be addressed here other than to note that alternative consumer/survivor groups, like the National Empowerment Center in the U.S., which question orthodox psychiatric treatment, have come under frequent attack from right wingers who denounce their receiving public funding. See: Ellen Barry, Group stirs debate over schizophrenia, BOSTON GLOBE, March 3, 2002. 59 Louis E. Kopolow, Client Participation in Mental Health Service Delivery, 17:1 COMMUNITY MENTAL HEALTH JOURNAL 46 – 53 (1981). 60 Judi Chamberlin, Joseph A. Rogers, Caroline S. Sneed, Consumers, Families, and Community Support Systems, 12:3 PSYCHOSOCIAL REHABILITATION JOURNAL 96 (1989). 61 Canadian Mental Health Association, CONSUMER PARTICIPATION IN MENTAL HEALTH (1984). 62 PHOENIX RISING: THE VOICE OF THE PSYCHIATRIZED was the title from 1981 – 1990. The first four issues in 1980 had a different subtitle—PHOENIX RISING: THE OUTSPOKEN VOICE OF PSYCHIATRIC INMATES.

420

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

developments in the United States notes 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 . . .’’63 As increasing numbers of people with a psychiatric history became organized, self-identification took on more importance both in how they saw themselves and wanted others to see them. Whereas in the 1970s, some antipsychiatry activists continued to use the word ‘‘patient,’’ use of this term by the early 1980s called out for an explanation, as Bonnie Burstow offered in a footnote to a 1983 article on psychiatric patients’ rights in Ontario: I am using terms like ‘‘psychiatric patients’’ in this article only because the relevant legislation is written in this language. I am in no way suggesting that you are or should be ‘‘patient.’’ Far more offensive terminology will be coming up later. I am not changing it because I cannot do so without giving a confusing rendering of the act. This is just another example of the sort of dilemma that insensitive and inappropriate wording puts us in.64

The self-definition of rising from the ashes that developed out of the antipsychiatry activism of the 1970s, and which gave birth to magazines like Phoenix Rising, was tied in with the experience of people who pointed out that they survived psychiatric abuses. Thus, the term ‘‘survivors’’ appears in a few articles in Phoenix Rising beginning in 1985, alongside other articles that continue to use the term ‘‘inmates’’ and ‘‘patients.’’65 The term, ‘‘psychiatric survivors’’ began to be used on a widespread basis in Canada during the late 1980s especially after the first national conference of activists was held in Montreal in November 1989. At this event, called ‘‘Our Turn,’’ speakers from the United States, Britain, and Canada spoke of how they had survived the psychiatric system and resented being called consumers.66 By this time, the National Association of Mental Patients in the United States had become the National Association of Psychiatric Survivors.67 Some activists have tried to find a compromise between these terms and the views that go along with them. By the early 1990s, the terms, ‘‘consumer’’ and ‘‘survivor,’’ often joined, as in consumer/survivor, had become among the more well-known forms of self-definition.68 Initially, psychiatric survivor was identified with an antipsychiatry perspective, rejecting the concept of mental illness and wanting to replace psychiatry with survivor-run alternatives in the community. ‘‘Consumer,’’ on the other hand, is a term that connotes choice and 63

Brian McKinnon, The Movement, 6:2 PHOENIX RISING 7 (1986). Bonnie Burstow, Psychiatric Patients’ Rights in Ontario: An Explanation of the Mental Health Act, 4:1 PHOENIX RISING 27 (1983). 65 Leonard Roy Frank, Survivors Speak Out at Shock Doctor Conference, 5:2 and 3 PHOENIX RISING 70 – 76 (1985); Surviving Psychiatry [features section heading], 5:4 PHOENIX RISING 1 (1985). 66 Irit Shimrat, CALL ME CRAZY: STORIES FROM THE MAD MOVEMENT 81 – 83 (1997). 67 ‘Our Turn’ at last! Montreal hosts national gathering of survivors, 8:3/4 PHOENIX RISING 7 – 9 (1990) [no author]. 68 To take but one of countless examples, THE CONSUMER/SURVIVOR INFORMATION RESOURCE CENTRE BULLETIN began to be published by current and former psychiatric patients in Toronto in 1992 and continues to publish in 2002. 64

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

421

autonomy in treatment, an early demand of antipsychiatry activists, but with a significant difference—people who identify as consumers want to work for reforms from within psychiatry and accept the medical model of mental illness. There are also people who want to maintain bridges with both sides and therefore identify as consumer/survivor, individuals who try to remain inclusive of the varied perspectives within each of these approaches while also acknowledging that this term itself is rejected by more than just a few people who identify with either one or the other. Thus, this is a very diverse group of people with vastly different views of terminology. It is also important to point out that some people with a psychiatric history would not consider themselves as having a mental disability, especially people who are antipsychiatry. Self-identification as a person with a mental disability would more likely be chosen by an antipsychiatry activist as being based on their association with involuntary psychiatric treatments imposed on them by mental health professionals, such as lobotomy, electro-shock, and overmedication, rather than any organic cause. Still others who identify as consumers would be more inclined to regard their mental health condition as a disability due to organic causes and thus turn to mental health professionals for treatment. But here, too, all is not so simple. Caroline Fei-Yeng Kwok, who identifies as having a psychiatric disability, has written a highly critical account about aspects of her treatment, which undercuts any generalized stereotype of people who identify as consumers as being uncritical of the psychiatric system.69 Perhaps the most comprehensive critical report in this regard was issued in January 2000 by the National Council on Disability in the United States in a report entitled: From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves. The authors of this report argue in support of a voluntary mental health system and state, ‘‘people with disabilities should be the ones who make the major decisions about their lives.’’70 As with wider developments that saw people getting involved in local health care associations, formal and informal groups that offered peer support to psychiatric patients, and which advocated working within the mental health system, proliferated in communities across North America during the last two decades of the twentieth century.71 There are quite a few groups that now want to work in partnership with professionals rather than separately, unlike many of the early antipsychiatry groups in North America. Throughout these developments, the debate over nomenclature has persisted. The term ‘‘consumer’’ has been rejected by some people who have been in mental institutions, such as Louise Pembroke from Britain, who said she felt more ‘‘consumed’’ by psychiatry than a ‘‘consumer.’’72 There can 69

Caroline Fei-Yeng Kwok, THE TORMENTED MIND: A TRUE STORY OF MANIC-DEPRESSION (2000). 70 National Council on Disability, FROM PRIVILEGES TO RIGHTS: PEOPLE LABELED WITH PSYCHIATRIC DISABILITIES SPEAK FOR THEMSELVES (2000). Full text can be found at: hhttp:// www.netwroksplus.net/fhp/madnationi. 71 Paul J. Carling, RETURN TO COMMUNITY: BUILDING SUPPORT SYSTEMS FOR PEOPLE WITH PSYCHIATRIC DISABILITIES (1995). Sheryl Pedersen, A Patient’s Approach to Working Together in PARTNERS IN HEALING: PERSPECTIVES ON THE EXPERIENCES OF PSYCHIATRY 173 – 180 (A. Eppel, et. al., eds., 1999—see also other related articles in this book). Simmie, Nunes, THE LAST TABOO. 72 Shimrat, CALL ME CRAZY, 82.

422

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

also be no doubt that the widespread promotion of a word like ‘‘consumer’’ reflects the political climate of the times. It can hardly be a coincidence that such a word loaded with capitalist baggage was taken up to a very significant degree during the decade when rightwing economic policies ran rampant in the United States, Britain, and, in the latter part of the decade, in Canada. Indeed, some current and former patients reject this term because of its connection with ‘‘Tory consumerism,’’ as well as to disavow the notion that they are ‘‘getting something of value.’’73 The term ‘‘psychiatric survivor’’ has also received criticisms from ex-patients like Lanny Beckman who was one of the founders of the Mental Patients Association in Vancouver in 1971. He notes that ‘‘survivor’’ suggests that a person’s life was in danger and they escaped in the face of death, which, he argues, most psychiatric patients have not experienced. He supports the term as a metaphor rather than that it be taken literally.74 This term has also been strongly criticized by mental health professionals who feel put on the defensive by such language. E. Fuller Torrey, a well-known psychiatrist in the United States, published an opinion piece in the February, 1997 issue of Psychiatric Services magazine entitled, ‘‘Psychiatric Survivors and Nonsurvivors.’’ He argues that the term ‘‘psychiatric survivor’’ implies a status of a victim of oppression similar to that of a Holocaust survivor.75 Torrey then proceeded in his article to blame antipsychiatry activists for the death of half a million people due to suicides and deaths on the street, comments that elicited a firestorm of letters to Psychiatric Services magazine, ‘‘an all-time record’’ of 70 for a single article according to the editor, some in favour of Torrey but most against his inflammatory and completely unsubstantiated accusation.76 As the fierce exchange over Torrey’s article indicates, this debate over terminology has been filled with anger and recriminations from both sides, very much reflecting the highly contentious nature of how people choose to identify themselves, and by doing so, indicate how they view psychiatry and their own personal experiences. It also reflects the anger of people who have received psychiatric treatment who have been told for years how they should identify themselves by mental health professionals or had demeaning images of psychiatric patients promoted through caricatures in the media and in their personal life. While much has been made of the split between people who identify as consumers and people who identify as survivors, it is important to note that there are people who have a psychiatric history who reject both terms. Sue Goodwin argues: ‘‘Nobody knows what a 73

Anne Rogers and David Pilgrim, ‘Pulling down churches’: accounting for the British Mental Health Users’ Movement, 13:2 SOCIOLOGY OF HEALTH and ILLNESS 136 (1991). 74 Ibid., p. 55. 75 E. Fuller Torrey, Taking Issue: ‘Psychiatric Survivors’ and Non-Survivors, 48:2 PSYCHIATRIC SERVICES 143 (1997). It should be noted that Torrey himself used this term in the title of his book SURVIVING SCHIZOPHRENIA: A FAMILY MANUAL (1983). 76 Taking Issue with Taking Issue: ‘Psychiatric Survivors’ Reconsidered, 48:5 PSYCHIATRIC SERVICES 601-05 (1997—letters to the editor). The use of the term ‘‘survivor’’ is more widespread than is discussed in this article, and includes numerous people who are have survived various medical, physical and emotional trauma. The widespread use of this term has itself brought criticism from some commentators as making everyone into a potential victim: Rick Salutin, Who can not claim victim status?, GLOBE AND MAIL, August 25, 1995.

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

423

consumer or a survivor is. If I go around saying I’m a consumer, they think I work for Consumers Distributing [a well known Canadian store that went bankrupt]. And if I say I’m a survivor, people say, ‘Survivor of what?’ The truth is that nobody in the whole wide world understands what a consumer or survivor is.’’77 In spite of this proliferation, even confusion of terms, it can be said on the positive side that the period since the early 1970s has witnessed the largest numbers of current and former psychiatric patients involved in the reshaping of language and attitudes on this topic than at any previous time in history. This democratization of mass self-identity, however fractious, very much reflects the diversity that early mental patient liberation movement activists argued was an important part of the movement for social change for people previously labeled ‘‘lunatics,’’ ‘‘the insane,’’ ‘‘the mentally ill,’’ and other similar terms. This democratization of identity is more complex than some people, like E. Fuller Torrey, realize. Terms like psychiatric survivor are not static, with one definition alone. While people who are antipsychiatry generally dislike the term consumer, the same cannot be said for the term survivor by all people who support the medical model. A number of current and former patients who would not consider themselves antipsychiatry have, since the mid 1990s, redefined the term ‘‘psychiatric survivor’’ as meaning having survived mental illness rather than meaning having survived psychiatry.78 In this sense, they are referring to having overcome great obstacles due to their mental health problems and recovery, at least enough to no longer be in hospital. In most cases, for people on various sides of this debate, survivor also means remembering people who have not survived in the literal sense of this word— people who have ended their life, who have died on the streets, who died in mental institutions either after years of confinement or as a result of treatments inflicted upon people labeled mentally ill. Also, among people who support the medical model of mental illness, there are efforts to insist on no longer referring to people as ‘‘the mentally ill’’ or as ‘‘a schizophrenic’’ or ‘‘the insane.’’ Rather, the emphasis is on terminology that stresses someone as a person first as in a ‘‘person with a mental illness’’ or a ‘‘person with a psychiatric disability.’’ Using the term ‘‘person with a psychiatric disability’’ is also meant to stress links with other people who have disabilities and with their struggles for inclusion in society.79 Even the term ‘‘psychiatrized,’’ which was coined by antipsychiatry activists around 1980, has been more recently used as a self-description by activists who choose to work within the system.80 77

Sue Goodwin quoted in: Barbara Everett, A FRAGILE REVOLUTION: CONSUMERS AND PSYCHIATRIC SURVIVORS CONFRONT THE POWER OF THE MENTAL HEALTH SYSTEM, 142 (2000). 78 Carling, RETURN TO COMMUNITY, 71, notes that some people ‘‘prefer the term ‘psychiatric survivor’ because it reflects either their experience in mental health systems they view as fundamentally oppressive, and/or their ‘survival’ of the most challenging aspects of their disabilities.’’ Surviving one’s mental disability, rather than surviving psychiatry, is also the meaning when the term survivor is used in SCHIZOPHRENIA DIGEST, published in Fort Erie, Ontario since 1994 by William J. MacPhee who was diagnosed with schizophrenia. 79 Ibid. 80 PHOENIX RISING: THE VOICE OF THE PSYCHIATRIZED published in Toronto from 1980 – 1990 was the most well known antipsychiatry magazine in Canada. OUR VOICE/NOTRE VOIX: VIEWPOINTS OF THE PSYCHIATRIZED SINCE 1987 is published in Moncton, New Brunswick and includes material from both proand antimedical model perspectives.

424

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

Much of the attempted reclaiming of words and altering of terminology has taken much longer in the past than it has in recent years. It indicates how fluid all of these definitions continue to be. In addition to the terms already mentioned, the term ‘‘user’’ has been widely adopted in Britain as a form of self-definition among people who receive psychiatric services, but it has not caught on to any significant degree in North America.81 Of course, the older terms have not disappeared. This is especially true of ‘‘patient,’’ which continues to be very widely used when describing someone who is receiving psychiatric treatment, including by recipients of treatment themselves.82 Lunatic and crazy have long been considered insults by people who have been in mental institutions in the 20th century, but in the last generation, a number of people have used these very words to either indicate their political opposition to psychiatry or to simply throw back the epithets as a form of defiance.83 There was even a radio show, which called itself ‘‘Loony Radio,’’ run by psychiatric patients at Borda Hospital in Argentina in 1996 who deliberately mocked the negative stereotypes associated with madness in their show, that broadcasts to 1300 other patients in the institution and to millions of fans outside.84 Yet, among people who are the most vulnerable to name-calling—people with no social supports, or who are homeless, like Edmund Yu, being called a ‘‘loon’’ as he was, can have deadly consequences, which are anything but ironic or humorous. Whatever the differences in approach, this ongoing reformulation of language has a great deal to do with fighting persistent negative images that portray current or former psychiatric patients as dangerous, ridiculous people, objects of fear and ridicule—people labeled with mental illness as the dreaded other. The age-old fear of ‘‘lunatics at large’’ has been translated into a more contemporary fear of ‘‘patients at large’’ something that has led to the widespread adoption of coercive community treatment orders in North America. Here, too, people with a psychiatric history have been split on this issue, with people who choose to identify as psychiatric survivors being the most outspoken in opposition to

81

For an excellent collection of articles on this topic from Britain, see: Craig Newnes, Guy Holmes, Cailzie Dunn, eds., THIS IS MADNESS: A CRITICAL LOOK AT PSYCHIATRY AND THE FUTURE OF MENTAL HEALTH SERVICES (1999); Anne Rogers, David Pilgrim and Ron Lacey, EXPERIENCING PSYCHIATRY: USERS’ VIEWS OF SERVICES (1993); Mike Lawson, A Recipient’s View, BEYOND COMMUNITY CARE: NORMALISATION AND INTEGRATION WORK 62 – 84 (Shulamit Ramon, ed., 1991). 82 A recent survey of 427 people who receive mental health treatment in Ontario found that ‘‘54.8 percent preferred the term ‘patient,’ 28.8 percent preferred ‘client,’ 7 percent preferred ‘survivor,’ and 2.8 percent preferred ‘consumer.’’ Verinder Sharma, Diane Whitney, Shahe S. Kazarian, Rahul Manchanda, Preferred Terms for Users of Mental Health Services Among Service Providers and Recipients, 51:2 PSYCHIATRIC SERVICES 203 (2000). 83 Pat Capponi, UPSTAIRS IN THE CRAZY HOUSE: THE LIFE OF A PSYCHIATRIC SURVIVOR (1992); Shimrat, CALL ME CRAZY, Irit Shimrat has a web site called the Lunatics Liberation Front at: hhttp:// www.walnet.org/llf/i. 84 Calvin Sims, Loony Radio: fun and therapy, GLOBE AND MAIL, May 18, 1996.

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

425

these laws.85 As should be evident by now, how a person with a psychiatric history chooses to self-identify has a lot to do with how one views public policy on mental health care, as well as personal experiences and expectations of mental health treatment.

5. Conclusion ‘‘This is a nut. This is a person. Words Hurt. Think Twice.’’86 These words, printed on a poster in the 1990s issued by the Canadian Mental Health Association with a drawing of a nut and a person strategically located, bring us back to where this article began—name-calling— its impact on people, like Edmund Yu, and how terminology is shaped by changing attitudes and priorities in health care. While the early changes from lunatic to inmate to patient were largely driven by mental health care professionals and their concern with professional legitimacy, the evolution of terminology for people who receive psychiatric treatment has, since the 1970s, been influenced to a greater degree than before by current and former patients. This includes people who reject the medical model of mental illness and others who accept it, with still others somewhere in-between taking points from both sides of the debate, all of whom have been influenced by deinstitutionalization and the rise of social movements for previously disenfranchised members of the community. Redefining older terms as a form of defiance, while also coming up with different terms that stress themes ranging from oppression to choice and adapting them according to one’s experiences of psychiatry, has been part of this process. This evolution of language is as fluid today as it has been at any other time in recent history. It is rooted in the organized demands to be heard by people who had previously been excluded from such debates with stigmatizing labels imposed upon them. The stigma has not ended, nor has the debate over self-identification and what it all means. However, what these various and often conflicting terms have in common is a desire to reshape both popular language and attitudes to a point where we see someone with a psychiatric history as being a person rather than a label. And that is the best thing that any of these terms can mean.

85

Pat Capponi, Take Your Pills and Shove It: Compulsory drugging of ex-psych patients will only make the Tories feel better, NOW MAGAZINE, February 19 – 25, 1998; Canadian Mental Health Association, Ontario Division, THE USE OF COMMUNITY TREATMENT ORDERS FOR PERSONS WITH MENTAL ILLNESS (1998); Tom Lyons, The Chemical Asylum: The Yu inquest hears of a brave new world where homeless people are branded insane and controlled with drugs, EYE MAGAZINE, April 15, 1999; R. Borum, M. Swartz, S. Riley, J. Swanson, V. Aldige Hiday, R. Wagner, Consumer Perceptions of Involuntary Outpatient Commitment, 50:11 PSYCHIATRIC SERVICES 1489 – 1491 (1999), pp. 1489 – 1491.; E. Witmer, Minister of Health and Long-Term Care, Bill 68: An Act, in memory of Brian Smith, to amend the Mental Health Act and the Health Care Consent Act, 1996, Toronto: Legislative Assembly of Ontario, 2000; Queen Street Patients Council, ‘‘Submissions to the Standing Committee on General Government’’ regarding Bill 68, Jennifer Chambers, presenter, Legislative Assembly of Ontario, May 15, 2000; Don Weitz, Fighting Words—Community Treatment Orders and ‘Brian’s Law, CANADIAN DIMENSION 12 – 13 (September/October 2000). 86 A copy of this poster is in the author’s possession. It was issued by the Barrie-Simcoe, Ontario Branch of the Canadian Mental Health Association in the mid 1990s.

426

G. Reaume / International Journal of Law and Psychiatry 25 (2002) 405–426

Acknowledgments Earlier portions of this paper were presented to various psychiatric consumer/survivor groups in Toronto, Kenora, and Thunder Bay, Ontario, at the Institute for the History and Philosophy of Science and Technology, University of Toronto, and the Canadian Society for the History of Medicine. I wish to thank the people for their feedback at these talks. I also wish to thank Lilith Finkler and two anonymous reviewers for their comments.