The Declaration on the Rights of Mentally Retarded Persons proclaimed rights and called for national and international action to guarantee their protection. The enactment and initiation of legislation has also been an important factor in research and development of care for the mentally retarded since the declaration.
Tens of millions of men and women of all ages, races, cultures, and economic conditions have some degree of mental or intellectual disability, deficiency, handicap, or retardation (the terms are often used interchangeably) that involves significantly below-average intellectual functioning (an IQ, or intelligence quotient, of seventy or below as measured on the Stanford-Binet test) and that inhibits these individuals from adapting to the daily demands of the social environment. More than three-quarters of persons with mental retardation are classified as “mildly retarded.” They experience the emotions of joy, sadness, anger, pain, interest, and boredom common to all people and can successfully become part of their communities with appropriate education, training, and personal care.
Mental retardation is always associated with limited intellectual capacity that becomes apparent before the age of eighteen and is permanent. Mental retardation is frequently caused by chromosomal abnormality as in Down syndrome, metabolic disorders such as phenylketonuria (the inability to oxidize a metabolic product of phenylalanine), and events or situations that impair development, such as damage to brain tissue, malnutrition, or an unstimulating environment.
Historical studies of mental retardation analyzing the rights of mentally retarded persons in the United States portray a sobering picture. In the mid- to late 1800’s, states almost routinely institutionalized mentally ill and mentally retarded persons because of presumed incompetency in decision making or because of purported danger to themselves or others. In the early 1900’s, many states established boards of control that were responsible for moving persons with mental illness and mental retardation out of jails and almshouses into state hospitals. By 1934, under eugenic sterilization laws, involuntary sterilization of persons with mental illness or mental retardation was legal in twenty-nine states.
In 1956, S. Krugman and J. P. Giles initiated a long-range study of viral hepatitis at Willowbrook State School, a home for about forty-five hundred retarded children in Staten Island, New York. They collected twenty-five thousand serum specimens from more than seven hundred patients, deliberately infecting some of the incoming children with the hepatitus virus prevalent at Willowbrook. Krugman and Giles pointed out that their studies were reviewed and approved by the New York State Departments of Mental Hygiene and Mental Health, the Armed Forces Epidemiological Board, and the human experimentation committees of the New York University School of Medicine and the Willowbrook School. The studies also met the World Medical Association’s Draft Code on Human Experimentation.
A sociological study of involuntary sterilization of mentally retarded persons by G. Sabagh and R. B. Edgerton reported in Eugenics Quarterly in 1962 concluded that of forty retarded persons who had been sterilized prior to institutional release, many “understood the meaning and implications of sterilization” and 68 percent “disapproved” of being involuntarily sterilized. Concrete cases of human rights violations of mentally retarded persons could be further illustrated. Throughout most of the twentieth century, many “mildly retarded” persons spent their entire lives institutionalized, were involuntarily sterilized, and were denied educational opportunities. Where considered legally incompetent, they were not able to marry, have children, live alone, or enter into any contractual relations without the consent of a guardian.
The World Health Organization
It was the concern of the Economic and Social Council
ECOSOC’s Commission for Social Development met in March, 1971, to take up the question of implementing the International Development Strategy for the Second United Nations Development Decade. One important aspect of the commission’s work was to submit a report indicating progress made toward achieving the objectives of the Second Development Decade in the context of an integrated approach to social policy and development planning. The text of the Declaration on the Rights of Mentally Retarded Persons was initially drafted in this context, and, in turn, transmitted to the U.N. General Assembly on May 21, 1971.
The preamble to the declaration calls for national and international action to ensure that the declaration be used as a common basis and frame of reference for the protection of human rights. The U.N. General Assembly noted the necessity of assisting mentally retarded persons to develop their abilities and to promote their integration in “normal life.” The assembly also voiced its awareness that certain countries, at their existing stage of development, had limited resources to devote to the goals and rights outlined in the declaration.
The declaration also states that mentally retarded people have, “to the maximum degree of feasibility,” the same rights as other human beings. The mentally retarded person has a right to proper medical care and physical therapy, to education, training, rehabilitation, and guidance, to economic security and a decent standard of living, to a qualified guardian whenever necessary, to protection from exploitation, abuse, and degrading treatment, and if prosecuted for an offense, to due process of law with recognition of the person’s degree of mental responsibility. Whenever possible, mentally retarded people ought to live with family members or foster parents and participate in various forms of community life. The declaration stipulates that the family should receive assistance for such care, and if institutionalization is necessary, then care should be provided in surroundings and circumstances closely resembling “normal life.” In those cases in which a mentally retarded person is unable to exercise rights because of the nature of the handicap, or where rights are restricted or denied, legal safeguards should be implemented against every form of possible abuse.
Since the 1971 U.N. declaration, the routine paternalistic treatment of mentally retarded people has been increasingly challenged. In 1974, the Jenkins v. Cowley
In Great Britain, educational psychologist Margaret Dubberley,
At the international level, the WHO has given priority since 1971 to action and intervention concerned with the needs of children to avoid unnecessary risk factors in the development of mental retardation. Improved prenatal care policy has included family planning, genetic counseling, and regular supervision and diagnosis, such as detection of “at-risk” births and the use of amniocentesis and ultrasound. Perinatal and postnatal care measures include the use of skilled attendants at birth, provision of neonatal screening, and implementation of general public health measures such as adequate nutrition, hygiene, sanitation, basic health care, and public education.
The enactment and initiation of legislation has also been an important factor in research and development of care for the mentally retarded since the declaration. An international survey of mental health legislation conducted by the World Health Organization in 1976, however, found that in forty-two countries surveyed, only six had separate legislation covering the needs and rights of mentally retarded human beings. In twenty-six countries, there was specific reference to the mentally retarded either in mental health or public health legislation, and in ten countries there was no legal provision of any kind. Much work remains to be done in the formulation and enactment of national policy to prevent many of the causes of mental retardation and to ameliorate mental deficits. The financial and human resource outlays remain prohibitive for many developing countries.
Advocates for persons with intellectual disabilities have argued that those who are intellectually disadvantaged should be treated exactly like others, with the same basic human rights as all other citizens. In its 1981 Code of Rights, the Australian Voice of Intellectually Disadvantaged Citizens
The United Nations has recognized that mentally retarded people constitute a sizable minority in all communities around the world. The sad fact remains that, in far too many instances, mentally retarded people remain underprivileged, deprived of their full human rights and unable to develop their full potential for productive and enjoyable lives. Another, often ignored, fact is that families continue to care for many mentally retarded persons, providing quality care even without governmental or international intervention. The role of local and national governments, and then of international bodies, is to facilitate and support the primary caregivers. The ongoing task for international organizations such as the WHO, the International Association for the Scientific Study of Mental Deficiency, and the International League of Societies for Persons with Mental Handicap is to devise strategies for spreading knowledge and skills to all those who interact with mentally retarded human beings and to utilize community resources to provide comprehensive services that aim to help all mentally retarded people to remain in the local community and contribute to it as fully as they are able. Teaching and rehabilitation techniques are still the primary means of enabling mentally retarded people to learn and to use skills that allow them to live as full members of the human family.
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Castles, Elaine E. “We’re People First”: The Social and Emotional Lives of Individuals with Mental Retardation. Westport, Conn.: Praeger, 1996. Looks at how mental retardation affects the lives of children and adults living with the condition. -
Dybwad, Rosemary Ferguson, ed. International Directory of Mental Retardation Resources. 3d ed. Washington, D.C.: U.S. Department of Health and Human Services, 1986-1989. An invaluable international directory organized around international organizations and individual country reports. -
Herr, Stanley S. Rights and Advocacy for Retarded People. Lexington, Mass.: Lexington Books, 1983. A comprehensive historical review of the legal and judicial processes that have shaped the field of mental retardation. Identifies assumptions undergirding treatment of the retarded and proposes a future agenda for advocates of those who serve mentally retarded persons. Highly recommended. -
League of Societies for the Mentally Handicapped. Step By Step: Implementation of the Rights of Mentally Retarded Persons. Brussels: Author, 1980. This text is in brochure format and discusses the implementation of the major recommendations of the 1971 U.N. Declaration on the Rights of Mentally Retarded Persons. -
Macklin, Ruth, and Gaylin Willard, eds. Mental Retardation and Sterilization: A Problem of Competency and Paternalism. New York: Plenum Press, 1981. Presents the results of the Hastings Center’s project titled “Ethical Issues in the Care and Treatment of the Mildly Retarded.” Appendix includes excerpts from five court cases involving the sterilization of mentally retarded persons. -
Sarason, Seymour B., and John Doris. Educational Handicap, Public Policy, and Social History: A Broadened Perspective on Mental Retardation. New York: Free Press, 1979. An encyclopedic work treating mental retardation from a social history perspective. Recommended for the professional. Extensive bibliography, name and subject indexes. -
Walters, Leroy. “Commentary—Sterilizing the Retarded Child.” In Cases in Bioethics: Selections from the Hastings Center Report, edited by Carol Levine. New York: St. Martin’s Press, 1989. Part 5 treats mental incompetence and decisions on behalf of the incompetent. Glossary and bibliography. -
World Health Organization. Mental Retardation: Meeting the Challenge. Geneva: Author, 1985. A document that was prepared in collaboration with the Joint Commission on International Aspects of Mental Retardation. Organized around the nature of the international problem, etiological factors, national policy formation, mental retardation services, and the role of voluntary and international organizations. References. No index. -
Zigler, Edward, and Dianne Bennett-Gates, eds. Personality Development in Individuals with Mental Retardation. New York: Cambridge University Press, 1999. Contributing authors argue that emotions, personality, and motivation, not just intelligence, are influential in the lives of mentally retarded individuals.
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