In a recent issue of Mental Retardation, I recounted a story told by Professor Ignacy Goldberg during my doctoral studies at Teachers College, Columbia University (Smith & Mitchell, 2001). I offer this memory again here as an introduction to my invited remarks on the term mental retardation. I share this recollection also as a token of my affection and respect for a wonderful mentor and loving person. Dr. Goldberg passed away last spring.
The “Retarded Retarded,” the “Normal Retarded,” and the “Minimally Gifted”
As great teachers often do, Dr. Goldberg engaged his students with stories from his own life. I have frequently recalled his accounts from early in his career of working in an institution for persons diagnosed as having mental retardation. He remembered that during his first days there, an experienced staff member explained to him that there were actually three different populations in the institution, the “retarded retarded,” the “normal retarded,” and the “minimally gifted.” The retarded retarded needed constant care. This help was often provided to them by the normal retarded and the minimally gifted. The normal retarded were the mainstream population of the institution. They lived relatively independent lives within the culture of the institution. They were often given the most basic and unpleasant work to do (cleaning and caring for the retarded retarded). The minimally gifted made certain that things ran smoothly in the wards of the institution. They occupied the upper echelon of the residential society and were rewarded by the institution's staff for doing things the employees were actually paid to do. Their rewards included cigarettes, money, privileges, and other favors. The quality of institutional life often depended on the abilities, sensibilities, and compassion of the minimally gifted. Dr. Goldberg discussed the degrading nature of the terms used to describe the institution's residents, particularly the sarcastic designation “minimally gifted.” The concept underlying the terms, however, he found to be valid. There were distinctly different groups of people in the institution, yet all of them were referred to as being the retarded. He used his story to question the monolith that mental retardation had become in the thinking of the public and in many professional circles (Smith & Mitchell, 2001).
Mental Retardation: Essence or Aggregation?
Typology is the study of groups of individuals whose individual differences are thought to be eclipsed by underlying types or essences. In anthropology, typology means that homogeneous and valid classifications can be established for people who share critically defining characteristics. Gelb (1997) has found that definitions of mental retardation, regardless of their variations or details, have all been established on the assumptions of typological thought. From this perspective, the axis or core of the field of mental retardation is the conviction that there is an “essence” of mental retardation. This essence overshadows all of the individual differences that otherwise characterize the people who are classified by the term.
Even a glance at the panoply of etiologies associated with the term mental retardation is illustrative of the reductionistic allure and power of typological thinking. In 1992, the American Association on Mental Retardation (AAMR) delineated more than 350 causes of mental retardation (Luckasson et al., 1992). This list does not, however, take into account the varying degrees and specific types of disabilities associated with these etiologies. If these variables are added, the multiple and complex meanings of what is called “mental retardation” is staggering. The only conceptual “glue” that holds mental retardation together as a category of human beings is the typological notion that there is some fundamental essence to the universe of characteristics and the vastly differing needs of the people identified by this term. Clearly, however, mental retardation is a term used to describe an aggregation of diverse human circumstances. The only rationale for this aggregation appears to be the typological reasoning that Gelb has described.
Mental Retardation as a “Felt Necessity”
The eminent American psychologist Seymour Sarason has observed that “Mental retardation is never a thing or characteristic of an individual, but rather a social invention stemming from time-bound societal values and ideology that makes diagnosis and management seem both necessary and socially desirable (Sarason, 1985, p. 233). The “time-bound” nature of the social values that have produced and preserved the concept and language of mental retardation is powerfully illustrated by a statement from Oliver Wendall Holmes. In Common Law, Holmes wrote: “The life of the law has not been logic; it has been experience. The felt necessities of the time … [are the sources of law]” (Holmes, 1881, p. 1).
When Holmes spoke for the majority of the U.S. Supreme Court in 1927, supporting the constitutional right of the Commonwealth of Virginia to sterilize people who were diagnosed as “feeble minded,” he was upholding a “felt necessity” of his time and culture. He was also acting in accord with a long history of “felt necessities” regarding mental retardation as defined by the dominant social and political forces in society.
The Myth of Mental Retardation
In The Conquest of Mental Retardation, Burton Blatt (1987) wrote of the importance of stories. “Every story can enhance life or destroy it. Every story can lift us or depress us. Stories sustain if not make a person's world. And thus, the storyteller holds a certain power (and responsibility)” (p. 141).
In very important ways, stories of mental retardation have created and sustained the concept. Sometimes the stories have been positive. The stories of Itard and Victor, Samuel Gridley Howe, and Edward Sequin have encouraged generations of parents and professionals who care deeply about children and adults described by the term mental retardation. More often, however, the nature and intent of mental retardation stories have been negative. The pessimistic and cynical tales of the Kallikaks and Jukes questioned the efficacy of providing education and social services for people identified as retarded (Smith, 1985). The story of Carrie Buck became central to the argument for institutionalizing and sterilizing thousands of people labeled with the term (Smith & Nelson, 1989).
In speaking of the meaning of the term mental retardation, Trent (1994) defined it as a “construction whose changing meaning is shaped both by individuals who initiate and administer policies, programs and practices, and by the social context to which these individuals are responding” (p. 2). He argued that the term has sometimes been used in the name of science, sometimes in the name of protecting people, and sometimes in the name of economic necessity. In every case, however, it has been used for the purpose of controlling people perceived to be a threat, an inconvenience, or a societal drain.
In 1961, Thomas Ssasz rocked the psychiatric world by proclaiming the “myth of mental illness.” He asserted that the medical terminology associated with the vast array of emotional and social difficulties that people may encounter in life was inaccurate and misleading. According to Ssasz, although the term mental illness
made good historical sense—stemming as it does from the historical identity of medicine and psychiatry—it made no rational sense. Although mental illness might have been a useful concept in the nineteenth century, today it is scientifically worthless and socially harmful. (p. ix)
Mental Retardation: Disaggregation as a Paradigm Shift?
The authors of the 1992 AAMR manual (Luckasson et al.) have characterized their revisions to the definition and classification of mental retardation as a paradigm shift. This shift is presented as consisting of two facets. The first of these is a change in the conception of mental retardation from a trait existing in an individual to an expression of the interaction between a person with limited intellectual and adaptive skills and that individual's environment. The second element of the shift is an emphasis on the pattern of the person's needs rather than deficits (Schalock et al., 1994).
Paradigm shifts may be critical to advancement and improvement in any field of endeavor. Thomas Kuhn (1962), in his classic book The Structure of Scientific Revolutions, defined paradigms as shared world views. Kuhn argued that these shared views eventually become so strong and institutionalized that only a sudden and dramatic break from these conventional perspectives can bring on a positive revolution in thinking.
It must be recognized, however, that unlike physics, where a paradigm shift from the world view of Newton to that of Einstein did nothing to change the reality of the physical universe, a paradigm shift in mental retardation is likely to have profound implications for the education, care, and treatment of millions of human beings.
The effort to define mental retardation in a way that is scientifically accurate has been continuous for centuries. The effort to define it in a way that promotes greater sensitivity to the needs of people described by the term has also been continuous. A scientifically sound and socially helpful definition of the term mental retardation, however, may not be achievable. Perhaps the paradigm shift that is needed is an even more dramatic one than that which was achieved in the 1992 AAMR manual. What shift might best serve the interests of the people who are and those who could be defined in the future as having mental retardation? The most positive paradigm shift might be the deconstruction of mental retardation. The best definition of mental retardation may be no definition.
In my opinion, it is time to admit that the term mental retardation is, to use Ssasz's (1962) words “scientifically worthless and socially harmful.” It is time to face the reality that it is a manifestation of typological reasoning that has created a false and unhelpful categorization of people with very diverse needs and characteristics. Perhaps the plurality of the term developmental disabilities would better describe the heterogeneity of the people who have been labeled mentally retarded. It would be a more accurate term, and it would likely be less stigmatizing because of its generality.
Although the implications of abandoning the term for resource allocations and the provision of services must be carefully addressed, the term mental retardation should become an historical artifact of the evolution of our thinking about children and adults with developmental disabilities. The millions of people within the spectrum of developmental disabilities who have been described as having mental retardation deserve this change in the manner in which they are regarded and treated. A disassembling of the aggregation that mental retardation is may provide an opportunity to enhance our vision of who these people are as individuals and our understanding of their rightful place in our communities.
Author: J. David Smith, EdD, Dean, School of Education and Human Services, Longwood College, 201 High St., Farmville, VA 23909. (firstname.lastname@example.org)