Stu Smith, Ph.D.
Around 1970, a golden age began for people with mental retardation (and mental health problems). Deinstitutionalization and community placement were in their infancy before 1970, as were mainstreaming, gainful employment, active treatment, and even behavioral interventions. The visions of self-determination, empowerment, home ownership, inclusion and justice by recent AAMR presidents (Herr, 1999; Wagner, 2000) would have seemed like science fiction back then. Self-advocacy, person-centered philosophy, IDEA, and heated arguments about the death penalty, psychotropic medication, and restraints belong to recent history.
Many direct care and professional staff younger than 40 or 50 have only worked during the golden age and have a limited knowledge of the 100 years before. The following summary of key historical trends and tragedies in the United States may not only be interesting, but should serve as a reminder of the protective role that must continue to be played. We should embrace the present but be(a)ware of the past; for the past can come ahaunting againnot only with hard economic times, but also with scientific and technological achievement. The final discussion will elaborate on this.
Because favorable historical trends in the U. S. have been the exception, while unfavorable ones have been the rule, the latter will be emphasized. This focus will show what must be avoided in the future. Although offensive today, some outdated terminology will be used, in order to better represent the historical times. Despite being inconsistently defined over the century, feebleminded generally refers to the upper mild-to-borderline range of mental retardation, imbecile the upper moderate to mild range, and idiot the slower ranges. Much of the following can be found in the far more detailed historical texts by Scheerenberger (1983) and Trent (1994). Table 1 summarizes some of the major trends over the century that are still ongoing today.
In the Beginning: Colonial Days. During colonial times, a variety of methods helped people cope with child and adult imbeciles and idiots. Although prosperous families were able to provide the necessary care and supervision, poor families had fewer resources. As the child aged or became adult, if unable to contribute to the family, then bidding out (being auctioned off), marrying out, or passing out (being abandoned in a strange town) became options. Over time, concern about these led to the construction of almshouses and poorhouses. Originally, these were probably similar to todays nicer Rescue Missions. However, they became so overcrowded with the poor and dangerous that budgets, health and safety suffered. By 1840, Dorothea Dix was leading a major movement for better conditions in facilities and asylums.
1850- 1900: From Optimism to Pessimism. Around 1850, Hervey Wilbur opened the first private residential school for a few idiots in Barre, Massachusetts, Samuel Howe opened the first public residential school in Boston, and Edward Seguin arrived from France with an Educational model for improving the knowledge and behavior of idiot, imbecile, and feebleminded children. He focused on strengthening the will through muscular, nervous, and sensory training, as well as strengthening cognitive and moral (social) skills. The goal of these optimistic forerunners was to help children learn to live independently enough to avoid poverty after eventually returning home from their special schools. Unfortunately, as news of success with the feebleminded and imbeciles spread, many idiot children were referred, as were older children and adolescents, some who were just slow.. When the few available teachers were not able to cope with the large increase in students (Special Education was still several decades away), the original goals and optimism disappeared. A Medical model, with physicians who were experienced in running large facilities but prone to seeing pathology, began to replace the Educational model; especially when the economic Panic of 1857 resulted in the admission and retention of many less capable idiots. At first, much of the motivation behind referrals was charitable and protective: With the increase in joblessness and the poor, these children would not have to live in a poorhouse or almshouse with more dangerous, and sometimes criminal, children and adults. Unfortunately, this protectiveness led to a large growth in institutions and a practice of life long residence, particularly for the many who would otherwise have to return to poverty stricken families and dangerous environments (especially during and after the Civil War).
Benevolent attitudes began to change quickly with large immigration during the economic Panic of 1873. Not only were business failures and increasing joblessness causing fear, but there was mounting evidence that many immigrants were poor, criminal, and feebleminded. The feebleminded portion was often viewed as immoral and in need of close supervision, especially the women who were easy prey for men who might impregnate them. When Dugdales analysis of the lineage of the Jukes family was misinterpeted by the public as confirmation of a very strong link between heredity and feeblemindedness, calls for control and prevention intensified. Institutions not only increased, but grew larger as more adults and women began to be admitted. This was magnified in 1883 when Sir Francis Galton, who was greatly influenced by Charles Darwins hereditary concepts of natural selection and survival of the fittest, introduced the term Eugenics. Eugenicists believed that the human race would improve only if good stock reproduced. Because segregation could prevent pregnancy of poor stock, many institutions began to follow a farm colony model, became more self-supporting, and opened cottages for women of childbearing age.
The feebleminded, whose increasing number had begun to be viewed as a burden, were described in very degrading ways by eugenicists. This influenced caretakers and professionals who tried to prevent further proliferation with involuntary commitment, marriage restriction laws, and voluntary and involuntary sterilization. In the 1890s, tubal ligation, vasectomy, and castration became common options. Even Kerlin, in his 1892 presidential address to the Association of Medical Officers of American Institutions for Idiotic and Feeble-Minded Persons (todays AAMR) suggested asexualization to control epileptic tendencies and inordinate desires. Such attitudes, coupled with the economic Panic of 1893, saw a change in goals for institutions. Independence and return to the community were replaced by goals of custodial care and increasing independence within the institution.
The 20th Century: From Burden to Menace.
Adding fuel to the hereditary fire at the turn of the century was the pioneering psychologist Henry Goddard whose faulty research led to the tragic myth of the menace of the feebleminded. His widespread use of the recently developed Stanford-Binet intelligence test led to the finding that 40-50% of immigrants were feebleminded, and his faulty inspection of the lineage of the Kallikak family led to the conclusion that the feebleminded were hopelessly and incurably inferior. Although by 1920, he had changed his views about incurability and the roles of education and social forces, Goddard had given scientific respectability to eugenicists and others who supported institutional segregation, custodial care, and sterilization. By 1915, the institutional census had climbed to 33,000. Lincoln (Illinois) had a population of 1888, with the state paying less than $13 per month per person. Compare this to the current national average of over $200 per day.
By the 1920s, there was beginning to be less animosity toward mental defectives, in part because many had made important contributions during World War I. People with Mental Ages of 8 or above had been accepted by the armed forces, as had many others in support services abroad and at home. Unfortunately, after the war, there was no Community Services system in place, so a return to the institution was common. However, pressure for community services grew when institutions no longer had the resources to house all the feebleminded, scandals in institutions made parents wary, a strong link between heredity and crime had not been confirmed, public schools were opening more doors, and some discharged people had proven they could live acceptably in the community. Still, despite improved sensitivity toward mental defection, it was still often seen as a perpetual condition that needed control. Mental defection continued to be viewed by some as a menace. In 1927, a U. S. Supreme Court ruling in Buck v. Bell permitted sterilization by the states, and 27 states passed sterilization laws by 1931. There was even support by 80% of 317 members of AAMR in a 1930 survey. Although there was little desire to discharge people to likely poverty and unemployment during the Great Depression of 1929, even when the economy improved and discharge became a realistic option, sterilization became an unwritten rule for the parole of those of childbearing age. Even H. Watkins, the president of the American Association on Mental Deficiency (AAMR), advocated sterilization for those eligible for discharge. By 1938, Virginia had sterilized over 1000 people.
By 1940, mounting research indicated that mental retardation was not always inherited or incurable, and did not cause poverty, delinquency or crime. Further, many people had shown they could live at home and in the community. There was also a growing emphasis on learning and adjustment, thanks in part to the spread of Special Education, which had become mandatory in all states by 1918. Unfortunately, although research and shifting attitudes led most states to end restricted marriages, sterilization, and institutionalization as their primary means of controlling mental retardation, sterilization continued in the U. S. until the total was over 60,000 men and women by 1970. However, World War II helped slow its use. As in World War I, a manpower shortage led to appreciated contributions. Further, when Germany defended sterilization of millions of its disabled and unwanted by pointing to U. S. practices, its continued use here became less appealing. Sympathy increased when it was reported that about 300,000 of Germanys mentally disabled were euthanized, including 100,000 with mental retardation. Still, institutional growth and overcrowding continued in the U. S. In 1956, Rome State School had a census of 4958, and by 1960, there were 346 state operated institutions.
Precursors of the Golden Age. Treatment and attitudes began to shift more quickly when parents formed the Association for Retarded Children in the 1950s. In 1962, the sad story of President Kennedys sister Rosemary, who had had both mental retardation and an unsuccessful lobotomy, increased public sensitivity. Advances in mental health medicine and psychotropic medication led to less need for institutionalization, and Community Mental Health Centers appropriations were approved in 1963. With horror stories about Rome and Willowbrook in New York, public attention focused on mental retardation, and the Presidents Committee on Mental Retardation was formed in 1966. Special Olympics was founded shortly thereafter, and the United Nations offered its Declaration on the Rights of Mentally Retarded Persons in 1971. The golden age was beginning and gained force in 1974 with Wyatt v. Aderholt It ruled Alabamas sterilization law to be unconstitutional and led to more humane standards of treatment. Children were soon included in the golden age with passage of PL94-142, the Education of All Handicapped Children Act (which became IDEA in 1997). Words such as rights and dignity were beginning to be heard as the federal government, parents, and courts became intimately involved.
Looking forward while glancing backward. Despite recent gains, alarms have been sounded, particularly by those who see a future that includes a weaker value of life and acceptance of the disabled. Wolfensberger (1989, 1994) cites the legitimate deathmaking of devalued groups, e.g., the unwanted unborn, the severely disabled newborn who might have medical intervention withheld, the poor and homeless who are excluded from the health care system, the terminally and chronically ill who might be assisted in dying (mercy killing), and especially the elderly and people with mental retardation who might receive too many prescription drugs for too long. He estimates 200,000 to 400,000 unnecessary deaths per year (not including abortions) of these and other devalued people. Wolfensberger cites numerous reasons for deathmaking, and emphasizes the rise of modernism. He defines this as including a preoccupation with materialism, a turning away from spiritual belief systems and moralities, and a self-centered want for whatever feels good here and now..
Others have also had very strong concerns about deathmaking. Hollander (1989) and Elks (1993) offer very sober historical accounts of euthanasia and mental retardation, as does OBrien (1999) who describes how labels and metaphors such as organism can dehumanize a devalued group further and make it at risk of euthanasia and eugenic solutions. Baroff (2000) denounces Singer (1994) who suggested that parents should have the right to terminate the life of an infant born with significant disabilities within the first 28 days of life. This implies that personhood and legal protection of the infant does not really exist until then (one of Singers examples includes Down Syndrome). Baroff views Singers attempt to define what a real person is as a dangerous logical extension of societys generally negative view of disability, particularly mental retardation. Heifetz (1989) has strong concerns about the vulnerable left behind in institutions. They have become fewer, less visible, more disabled and more elderly.
Advances in genetic engineering, the likelihood of human cloning, and eugenic writings have prompted Smith (1994) to be concerned about recent attempts to relate euthanasia decisions to a projected quality of life for the child, parents, and society in general (a sort of costs/benefits ratio). To support his anxiety, he points to the Eugenics Special Interest Group of the MENSA organization of intellectually gifted members; especially the New Perfectionists subgroup. In 1991, members voted on several recommendations related to Down Syndrome, including termination of all Down Syndrome pregnancies and the prohibition of people with Down Syndrome from having children. Smith (1995) also has concerns about the Human Genome Project. Although he agrees that the mapping of human genes on every chromosome will likely have enormous benefits with respect to the identification, treatment, and prevention of genetically caused illness and disability, many ethical and legal issues will need to be addressed, e.g., Who should have the right to be born? Who should decide? Should parents have the right to reproduce if they have a discovered genetic defect? Is mental retardation a disease that should always be prevented? Will employers and insurance companies be able to discriminate against couples who want to become parents if they have a known genetic defect, or even weakness?
A Bright FutureHopefully. Although history has not often been very favorable for people with mental retardation and/or mental health problems, especially during stressful economic times, Herr (1999) emphasizes many positive trends as the new millennium gets underway. In his presidential address, he views the current age as one of advocacy and acceptance, as a collective effort to do justice for people with disabilities through involvement, case law, and statutory law. Particularly helpful have been the break with the medical model, the rise of the interdisciplinary habilitation approach, and the increases in funds, supports, self-advocacy, and friends in places of power.
Despite impressive accomplishments during the golden age, a relaxation of vigilance might jeopardize Herrs vision. If social, political, and especially economic circumstances change, the concerns of those who have sounded the alarm may become a reality. Embrace the present, but be(a)ware of a past.
Baroff, G. S. (2000). Eugenics, Baby Doe, and Peter Singer: Toward a more Perfect society. Mental Retardation, 38, 73-77.
Elks, M. A. (1993). The Lethal Chamber: Further evidence for the euthanasia option. Mental Retardation, 31, 201-207.
Heifetz, L. J. (1989). From Munchausen to Cassandra: A critique of Hollanders Euthanasia and Mental Retardation. Mental Retardation, 27 , 67-69.
Herr, S. S. (1999). Presidential address 1999Working for justice: Responsibilities for the next millennium. Mental Retardation, 37 (5), 407-419.
Hollander, R. (1989). Euthanasia an mental retardation: Suggesting the unthinkable. Mental Retardation, 27 (2), 53-61.
OBrien, G. V. (1999). Protecting the social body: Use of the organism metaphor in fighting the Menace of the Feebleminded. Mental Retardation, 37 (3), 188-200.
Scheerenberger, R. C. (1883). A history of mental retardation. Baltimore: Paul H. Brookes Publishing Co.
Singer, P. (1994). Rethinking life and death. New York: St. Martins Press.
Smith, J. D. (1994). Reflections on mental retardation and eugenics, old and new: Mensa and the human genome project. Mental Retardation, 32 (3), 234-238.
Smith, J. D. (1995). The Bell Curve and Carrie Buck: Eugenics revisited. Mental Retardation, 33 (1), 60-61.
Trent, J. (1994). Inventing the feeble mind. Berkeley and Los Angeles: University of California Press.
Wagner, B. R. (2000). Presidential address 2000-Changing visions into reality. Mental Retardation, 38 (5), 436-443.
Wolfensberger, W. (1989). The killing thought in the eugenic era and today: A commentary on Hollanders essay. Mental Retardation, 27 (2), 63-65.
Wolfensberger, W. (1994). A personal interpretation of the mental retardation scene in light of the Signs of the time. Mental Retardation, 32 (1), 19-33.
For further information:
Dr. Stu Smith
408 North Main St.
Darlington, SC 29532