A BIBLIOGRAPHY OF MENTAL PATIENTS' AUTOBIOGRAPHIES:
AN UPDATE AND CLASSIFICATION SYSTEM
Robert Sommer, Ph.D., Jennifer S. Clifford, B.S., and John C. Norcross, Ph.D. (1998)
American Journal of Psychiatry,155, 1261-1263.
Authors' Affiliation: Department of Psychology, University of California, Davis (RS)
and Department of Psychology, University of Scranton (JSC & JCN)
Professor Robert Sommer
University of California
One Shields Avenue
Davis, CA 95616-8686
First-person narratives provide an inside view of mental disorder that can be useful in teaching, public education, theory, and research. Autobiographies written by former patients have played a catalysing role in mental health reform and in theory development. To bring earlier bibliographies up to date, the authors list 7 anthologies and 48 autobiographies of former patients published since 1980 and introduce a classification system intended to increase the research value of this important archive.
A Bibliography of Mental Patients' Autobiographies: An Update and Classification SystemAutobiographies written by individuals diagnosed as mentally ill are available in the English language going back at least as far as the 15th century. The formats of these books range from privately printed tracts with little or no editing to books issued by major publishers. Several accounts, such as those by Shreber (1) and Beers (2), have become classics in mental health education, while others remain largely unknown. There are at least 25 published bibliographies and anthologies (3-27) the latter often meant to be used as corollary readings in psychopathology classes. These anthologies have brought the books to the attention of a wide audience of students, practitioners, and the public. Several of the autobiographies have been made into feature films. Other types of books about individuals with mental disorder, such as biographies, case studies, and fictionalized accounts, can be useful data sources and teaching tools; however, we have chosen to focus on autobiographies for several reasons. First-person narratives provide a valuable archival record of the phenomenology of mental disorder and the changes that have occurred in diagnosis, treatment, and public response over several centuries. This genre views mental disorder from the inside looking out, drawing upon the human capacity for self- description and self-analysis. In this way, memoirs complement research and case studies performed from the outside looking in. The accounts are written written in the person's own words, and emphasize issues that the writer, as distinct from a clinician, deems important. The books are interesting to read as narratives with a strong story line. Some authors are celebrities for whom a large amount of biographical information is available, permitting comparison of multiple data sources. The accounts show the disorder in its family and environmental context. The books span different centuries and cultures, and include women and men of different age, occupation, social class, and education, representing a multitude of diagnostic categories and treatment procedures. One can find personal impressions of exorcism, purging, leeches, insulin coma therapy, ECT, pharmacological treatments from ancient to modern, various types of psychotherapy, and self-help groups. In general the accounts are independent of one another, in that the authors give little indication of having read other books in the same genre. This particularity increases the research value of the autobiographies. Memoirs represent an archival data source amenable to qualitative and quantitative analysis that can be used to test theories. As an example, a systematic tabulation of reported visual hallucinations in the autobiographies found that the majority occurred under conditions of reduced sensory input, as when the person was in isolation and sometimes physically restrained (20). Finally the autobiographies portray mundane aspects of mental hospital life not often discussed in the clinical literature, including clothing policies, noise levels, the palatability of hospital food, visiting regulations, and the general provision of privacy in treatment settings. Some authors are noted writers, poets, and artists capable of portraying in words and drawings, beyond the talents of most clinicians, the inner world of mental illness. The updated listings include novelist William Styron's moving description of severe depression with its suicidal impulses and songwriter Dory Previn's haunting lyrics that depict thought disorder in schizophrenia. Autobiographies have been included in the curriculum for training mental health professionals (28). Some cross- validation of accounts written by patients can be found in books and article by nonpatients, including journalists, psychiatrists and social scientists, who lived on mental hospital wards as participant observers (29-33). Almost 40 years ago, the senior author and his colleague Humphry Osmond began a systematic compilation of these narratives (20-22). For a book to be included, it had to be a first-person published book by someone who had been hospitalized for mental disorder. This necessarily excluded fiction, biography, and case studies written by a second party. Collaborative works, such a book co-authored by a client and therapist, were acceptable if the client were specifically listed as an author. At the time, we included only books by individuals who had been hospitalized for mental disorder to avoid being overwhelmed by accounts of anxiety and distress with little basis for making qualitative or quantitative distinctions. In our view, the research value of the list was increased by consistent use of these criteria, even at the cost of excluding sensitive portrayals of mental disorder and treatment, such as Ward's The Snake Pit (34) or Plath's The Bell Jar (35), which were technically classified as fiction. A parallel literature exists of first-person accounts by family members that is beyond the scope of this article. Because there are literally hundreds of first-person accounts written by individuals hospitalized for a mental disorder, there seemed little reason to seek out and include marginal cases. The present article is intended to update earlier lists and to provide a framework for classification and further analysis. As of this date, there have been few attempts to classify the books according to factors other than diagnosis. This is understandable since previous bibliographies were prepared before widespread use of electronic data processing. The capacity to locate autobiographies written by individuals in specific occupations or social categories having a particular disorder, e.g. a songwriter with schizophrenia or a therapist with bipolar disorder, would increase the usefulness of these books for clients and family members. Earlier bibliographies and especially Peterson's (16) list, which is based on his 1977 dissertation, include very few titles published after 1980, so we will use that as our starting date. Because outpatient treatment has become a more feasible option, the updated list waives hospitalization as a criterion in cases where an individual has been diagnosed and/or treated for a major mental disorder. Several titles are new editions or reissues of earlier books that had gone out-of-print. In these cases, the earlier publication date is given in parentheses following the book title. LIMITATIONSNone of these books can be considered unbiased, objective, or representative. Subjectivity is both their greatest strength and greatest weakness. Similar to earlier bibliographies of this genre, there is an over-representation of celebrities and their close relatives; e.g., the current list includes the wife of a presidential candidate, several media figures, and various writers and journalists. Published books cannot be considered representative of all first-person narratives by individuals diagnosed or treated for mental disorder. In general, publishibility requires an author who has name recognition or an interest on the part of a therapist or editor who is able to promote the manuscript. There is selectivity by editors, co-authors, and in some cases, by ghost writers, in the portions of the narratives that are published. If the accounts are anthologized, there is further selectivity in the portions published. Most of the accounts do not have clear beginnings and ends, with the author's subsequent life influenced by publication of the book. As a consequence of "coming out" as a person who successfully overcame a mental disorder, several authors became active in mental health education. In this respect the published autobiography is both past and prologue, becoming a significant factor in the future course of the author's life. RESULTSAttesting to the continuing interest in these books, seven anthologies have been published since 1980 (6, 15-17, 19, 25, 27). By far the most comprehensive source is Peterson (16), who acknowledges that he was inclined toward inclusiveness in listing titles. Our preference, at least in developing a continuing bibliography of titles for research use, is to maintain strict criteria, for example, excluding fictionalized accounts which are often deliberately (rather than unwittingly) embellished to improve the story line. There is not even an informal prohibition against embellishment in fiction as exists in autobiography. Since there is no shortage of books meeting the strict criteria, there seems little logic in jeopardizing the quality of the information by including fiction. We located 48 autobiographies published since 1980 by individuals describing time spent in a mental hospital or who were diagnosed and treated for schizophrenia or a mood disorder without hospitalization (36-82). Duration of hospitalization ranged from none (53, 68) to in excess of 20 years (51, 52). There are some interesting differences between books published since 1980 and those from the previous two decades. The earlier list (22) contained nine accounts of Soviet dissidents confined in mental hospitals, while the updated list has no new books of this type. It is possible that such books are still being published in Russia, but American publishers in the post-cold war era appear to have lost interest in the genre and the practice of confining dissidents in mental hospitals has presumably ended in Russia. Relative to the previous two decades, the updated list contains a larger proportion of women authors (75% as compared to 41%), and of physician or behavioral scientist authors (nine compared to two in the 1960-79 period), making this the largest occupational category among authors on the updated list. Fewer recent books are critical of treatment received, and several are very positive. Greater respect for the civil right of committed patients and improved hospital conditions can be seen in a decrease of complaints regarding unjust confinement and staff brutality. Collectively, the various bibliographies contain several hundred titles of patient autobiographies published in the English language. This is a substantial body of material covering many time periods, diagnoses, and treatments. For comparision purpose, Alvarez lists over 400 titles (3), the three bibliographies compiled by Sommer and Osmond (20-22) contain a total of 150 titles, and Peterson's (16) list contains approximately 305 titles (exact counts are difficult to make since there are some republications with new titles and other ambiguities, plus each anthologist has used slightly different inclusion criteria). A systematic classification system would enhance the research and educational value of the material, allowing researchers and practitioners to locate historical sources according to treatment and demographic characteristics. We have developed a 4-page structured questionnaire for classifying patient autobiographies according to the book (publication information), the client (demographic characteristics; diagnosis, attitude toward the illness and treatments), treatments (number, type, duration), and the perceived value of the book for clients or family members. We have used this questionnaire ourselves to rate books on the updated list and have overseen its use by students reading autobiographies as a class assignment. The questionnaire is easy to complete, although there are not unexpected problems with missing information and personal bias. Unlike a formal interview, writers of autobiography do not cover the same topics in a consistent manner. Diagnosis is among the thorniest classification issues. Some authors do not mention a diagnosis (51, 52), or specify a diagnosis given in hospital but reject it (61). Since the books are life histories covering long periods of time, some list multiple diagnoses with little basis for choosing among them. Other books, written 10 or 20 years following hospitalization, present a revisionist diagnosis, e.g., concluding that because the individual has recovered, the original diagnosis must have been incorrect (50). We have dealt with these issues by recording both the diagnoses given to the client and the client's degree of acceptance of the diagnosis on a 5-point scale from strong disagreement to strong agreement. We have used this rating system on approximately 20 autobiographies on the updated list. Our long-range goal is to do this for all of the books and make this information available on-line as a precursor to an comprehensive electronic data bank. Readers who would like to obtain a copy of the review sheet and a preliminary annotated bibliography can access them on the World Wide Web at: http://psychology.ucdavis.edu/sommerr DISCUSSIONNo single archive exists of these books. Peterson (16) spent several years developing his major bibliography without being able to personally inspect all the titles listed. Some classics have been reprinted and are widely available, others have been excerpted in anthologies, but most are out-of-print and not easily located. This is particularly true of self-published books, some of which are known primarily from secondary sources. The typical research library will have a selection of titles on the shelves stored in several locations under different headings, e.g. Biography, Psychiatry, Psychology, History, or Social Studies. Many of the out-of-print works can be obtained from sellers of used books, some of whom belong to networks offering computerized lists of titles and prices. However, it would be costly and inefficient for libraries to compete against one another for the limited supply of out-of-print books in order to obtain partial collections. The research potential of these books suggests the value of an indexed comprehensive collection in a single location. This could lay the basis for an on-line reference system, with books classified by author's primary diagnoses, number of hospitalizations, treatments described, occupation, and demographic characteristics. An archive might begin with a single diagnostic category, such as mood disorders, and then increase coverage over time.
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