Mental Retardation in America: A Historical Reader
http://www.100md.com
《新英格兰医药杂志》
This is a highly readable and well-edited historical anthology, a wide-ranging collection that deals with mental retardation over two centuries. The focus is on the views and actions of society. The book deserves perusal by anyone interested in mental retardation.
The editors consider the history of retardation in the context of general history. There are only two sections that deal with medicine: one concerns a history of the recognition of "Mongolism" by John Langdon Down, the racial detour that accompanied that recognition, and the eventual delineation of trisomy 21 as the cause; the other is a treatise on the pathology of mental retardation by Dr. William Fish, of the Albany Medical College, which he wrote in 1879. The treatise is welcome fare for a physician reader. Discussed are consanguine marriages, abnormalities of the "minute structure of the brain," microcephaly, epilepsy, and cretinism in Switzerland (". . . the precise element or elements producing it have not as yet been determined"), hydrocephaly, trauma, and paralysis. Equally clear is Dr. Fish's prescription: "The necessity for training schools and asylums for the reception of the idiotic and imbecile is now unquestioned. . . . [It is] the duty of society to provide for these `feeble ones.' . . . An idiot child in the family of a laboring man is a burden weighing heavily upon him, and may indirectly be the means of rendering the whole family dependent on the state for support."
This rather straightforward approach contrasts with the complexity of the history of mental retardation in American society, which "is reflective . . . of the larger course of events in American society." The full sweep of that history is outlined — from retarded persons functioning as integral parts of their families in the Colonial and early rural United States to the almshouses of the late 18th and early 19th centuries, where the poor, infirm, "insane," and "idiotic" were conflated in conditions of indescribable depravity. Later came the specialization of institutions for epileptics and the retarded. The pressures of urbanization and industrialization, the needs of immigrant families, and the application of scientific concepts to the definition of retardation (e.g., the advent of intelligence tests and the familiar categorization of the retarded as "idiots," "imbeciles," and "morons") led to the heyday of institutionalization. Between 1870 and 1880, there was a fivefold increase in the number of "feeble-minded" people.
Social forces and scientific interest led to intense focus on and very convoluted thinking about the retarded. The 19th-century view of "degeneracy" (roughly synonymous with "bad heredity") led theorists to conceive of social problems such as insanity, poverty, intemperance, and criminality — as well as idiocy — as interchangeable. This view was expounded in The Jukes: A Study in Crime, Pauperism, Disease, and Heredity (Richard Dugdale, 1875), a study of a rural clan that "over seven generations produced 1,200 bastards, beggars, murderers, prostitutes, thieves and syphilitics." The second equally influential study was The Kallikak Family: A Study in the Heredity of Feeble-Mindedness (Henry Goddard, 1912). Inspired by the new mendelism, the study traced back six generations of the family of a young institutionalized woman and found "an appalling amount of defectiveness." Yet there was also information about "a good family of the same name." It emerged, of course, that the forebear met "a feeble-minded girl by whom he became the father of a feeble-minded son." Subsequently the father "married a respectable girl of good family," by whom he produced children with "a marked tendency toward professional careers," who had "married into the best families . . . signers of the Declaration of Independence . . . etc." Goddard invented the pseudonym Kallikak by combining a Greek root meaning "beauty" (kallos) with one meaning "bad" (kakos). The lesson was clear and dramatic: the study linked medical and moral deviance and fused the new mendelian laws with the old biblical injunction that "the sins of the fathers shall be visited on the sons."
These ideas fueled the eugenics movement and the campaign for sterilization of the mentally retarded, which, according to the editors, was "the nadir of the American experience with mental retardation." The Supreme Court upheld eugenic sterilization in 1927, with Oliver Wendell Holmes's pronouncement that "three generations of imbeciles is enough." After World War II and the revelation of the Nazi experience with eugenics, support for sterilization faded. The sterilization issue inspired writers — especially Steinbeck and Faulkner — to explore the lives of mentally retarded characters in works that are sensitively reviewed in this book.
After World War II, and with the ensuing general prosperity, the activism of parents on the behalf of their physically and mentally handicapped children arose; such activism was inspired by a new belief in human rights after the Nazi atrocities and by the "intense middle-class familialism" of the postwar years. This attitude led to a desire that retarded children be a part of their families and receive the same degree of care and concern — and ultimately the same services, including education — as "normal children." Deinstitutionalization followed, and in 1975 Congress enacted a guarantee of free public education to children with disabilities by passing the Education for All Handicapped Children Act. The special role of President John F. Kennedy, his sister Eunice Kennedy Shriver, and the rest of the Kennedy family in supporting services — including the Special Olympics, an important example of the "ideology of normalization" — and advocating for mentally retarded persons should be noted. Further steps were taken to bring persons with mental retardation under the equal protection of the laws as American citizens; these measures included the ruling that people should be served in the least restrictive environment and the decision that established the community as the site of services for people with mental retardation and disallowed that condition as the sole justification for institutionalization.
A problem in reading the various chapters of this book, which is also true of working with mental retardation in the real world, is the wide range of persons who are classified as mentally retarded. This is illustrated at one extreme by the vignettes of formerly institutionalized young men inducted into the armed services during World War II, who, in many instances, served effectively. In that time of great social need, it was these soldiers' abilities, not their disabilities, that counted. At the other extreme, in my work I encounter youngsters whose mental retardation is insignificant as compared with their severe disorders of behavior. Finally, it is the behavioral disorder and not intellectual retardation that is decisive and destructive to family life. This suggests a fundamental flaw in the concept of mental retardation: "mental" life constitutes not only intellectual ability (as measured by IQ tests), but also attributes that are emotional and moral (for lack of a better word) as well. The overvaluation of IQ seems to be leading to decisions regarding capital punishment. The underestimation of emotional and behavioral dyscontrol and the systematic abolition of residential placement for children still give rise to situations as burdensome and cruel for families as any described in this book.
Mental Retardation in America tells a story with a broad sweep — how a society has dealt with mental retardation through profound social and scientific changes. At this end, we are in many respects back where we started, with retarded children cared for within their families. The plot is powerful, the questions profound, and the answers that have been given over the years show the usual flaws and faults of most human endeavors.
G. Robert DeLong, M.D.
Duke University Medical Center
Durham, NC 27710
delon006@mc.duke.edu((The History of Disabilit)
The editors consider the history of retardation in the context of general history. There are only two sections that deal with medicine: one concerns a history of the recognition of "Mongolism" by John Langdon Down, the racial detour that accompanied that recognition, and the eventual delineation of trisomy 21 as the cause; the other is a treatise on the pathology of mental retardation by Dr. William Fish, of the Albany Medical College, which he wrote in 1879. The treatise is welcome fare for a physician reader. Discussed are consanguine marriages, abnormalities of the "minute structure of the brain," microcephaly, epilepsy, and cretinism in Switzerland (". . . the precise element or elements producing it have not as yet been determined"), hydrocephaly, trauma, and paralysis. Equally clear is Dr. Fish's prescription: "The necessity for training schools and asylums for the reception of the idiotic and imbecile is now unquestioned. . . . [It is] the duty of society to provide for these `feeble ones.' . . . An idiot child in the family of a laboring man is a burden weighing heavily upon him, and may indirectly be the means of rendering the whole family dependent on the state for support."
This rather straightforward approach contrasts with the complexity of the history of mental retardation in American society, which "is reflective . . . of the larger course of events in American society." The full sweep of that history is outlined — from retarded persons functioning as integral parts of their families in the Colonial and early rural United States to the almshouses of the late 18th and early 19th centuries, where the poor, infirm, "insane," and "idiotic" were conflated in conditions of indescribable depravity. Later came the specialization of institutions for epileptics and the retarded. The pressures of urbanization and industrialization, the needs of immigrant families, and the application of scientific concepts to the definition of retardation (e.g., the advent of intelligence tests and the familiar categorization of the retarded as "idiots," "imbeciles," and "morons") led to the heyday of institutionalization. Between 1870 and 1880, there was a fivefold increase in the number of "feeble-minded" people.
Social forces and scientific interest led to intense focus on and very convoluted thinking about the retarded. The 19th-century view of "degeneracy" (roughly synonymous with "bad heredity") led theorists to conceive of social problems such as insanity, poverty, intemperance, and criminality — as well as idiocy — as interchangeable. This view was expounded in The Jukes: A Study in Crime, Pauperism, Disease, and Heredity (Richard Dugdale, 1875), a study of a rural clan that "over seven generations produced 1,200 bastards, beggars, murderers, prostitutes, thieves and syphilitics." The second equally influential study was The Kallikak Family: A Study in the Heredity of Feeble-Mindedness (Henry Goddard, 1912). Inspired by the new mendelism, the study traced back six generations of the family of a young institutionalized woman and found "an appalling amount of defectiveness." Yet there was also information about "a good family of the same name." It emerged, of course, that the forebear met "a feeble-minded girl by whom he became the father of a feeble-minded son." Subsequently the father "married a respectable girl of good family," by whom he produced children with "a marked tendency toward professional careers," who had "married into the best families . . . signers of the Declaration of Independence . . . etc." Goddard invented the pseudonym Kallikak by combining a Greek root meaning "beauty" (kallos) with one meaning "bad" (kakos). The lesson was clear and dramatic: the study linked medical and moral deviance and fused the new mendelian laws with the old biblical injunction that "the sins of the fathers shall be visited on the sons."
These ideas fueled the eugenics movement and the campaign for sterilization of the mentally retarded, which, according to the editors, was "the nadir of the American experience with mental retardation." The Supreme Court upheld eugenic sterilization in 1927, with Oliver Wendell Holmes's pronouncement that "three generations of imbeciles is enough." After World War II and the revelation of the Nazi experience with eugenics, support for sterilization faded. The sterilization issue inspired writers — especially Steinbeck and Faulkner — to explore the lives of mentally retarded characters in works that are sensitively reviewed in this book.
After World War II, and with the ensuing general prosperity, the activism of parents on the behalf of their physically and mentally handicapped children arose; such activism was inspired by a new belief in human rights after the Nazi atrocities and by the "intense middle-class familialism" of the postwar years. This attitude led to a desire that retarded children be a part of their families and receive the same degree of care and concern — and ultimately the same services, including education — as "normal children." Deinstitutionalization followed, and in 1975 Congress enacted a guarantee of free public education to children with disabilities by passing the Education for All Handicapped Children Act. The special role of President John F. Kennedy, his sister Eunice Kennedy Shriver, and the rest of the Kennedy family in supporting services — including the Special Olympics, an important example of the "ideology of normalization" — and advocating for mentally retarded persons should be noted. Further steps were taken to bring persons with mental retardation under the equal protection of the laws as American citizens; these measures included the ruling that people should be served in the least restrictive environment and the decision that established the community as the site of services for people with mental retardation and disallowed that condition as the sole justification for institutionalization.
A problem in reading the various chapters of this book, which is also true of working with mental retardation in the real world, is the wide range of persons who are classified as mentally retarded. This is illustrated at one extreme by the vignettes of formerly institutionalized young men inducted into the armed services during World War II, who, in many instances, served effectively. In that time of great social need, it was these soldiers' abilities, not their disabilities, that counted. At the other extreme, in my work I encounter youngsters whose mental retardation is insignificant as compared with their severe disorders of behavior. Finally, it is the behavioral disorder and not intellectual retardation that is decisive and destructive to family life. This suggests a fundamental flaw in the concept of mental retardation: "mental" life constitutes not only intellectual ability (as measured by IQ tests), but also attributes that are emotional and moral (for lack of a better word) as well. The overvaluation of IQ seems to be leading to decisions regarding capital punishment. The underestimation of emotional and behavioral dyscontrol and the systematic abolition of residential placement for children still give rise to situations as burdensome and cruel for families as any described in this book.
Mental Retardation in America tells a story with a broad sweep — how a society has dealt with mental retardation through profound social and scientific changes. At this end, we are in many respects back where we started, with retarded children cared for within their families. The plot is powerful, the questions profound, and the answers that have been given over the years show the usual flaws and faults of most human endeavors.
G. Robert DeLong, M.D.
Duke University Medical Center
Durham, NC 27710
delon006@mc.duke.edu((The History of Disabilit)