Mental r. We don't like those words. They were misused and misinterpreted by a lot of people. Especially children on the streets. Those words were also used to dehumanize people and to hurt them …. People with disabilities can not and never will be comfortable when they hear those words …. They will always be associated with the horrible things they remember in their past …. It is like a cloth with a bad stain. No matter how many times you wash it, the stain will never come out. We have to modify the language to refer to the same disability (Harvey Pacht, representing the Self-Advocacy Association of New York State, 1999).
I am pleased to have been invited to comment on the term mental retardation at a time when the Committee on Terminology and Classification of the American Association on Mental Retardation (AAMR) is considering changing it. My pleasure is not because of any personal or scientific convictions about the propriety or utility of these words. In a metascientific perspective, all scientific categories are socially constructed. Embedded in scientific concepts are ideas and viewpoints that can be judged as both “accurate” and “inaccurate” according to particular criteria. The proper meaning of scientific concepts are constantly being contentiously debated. Far from being immutable or objective, they change, at least their interpretation certainly changes, with great regularity, and increasingly with great swiftness. Mental retardation is a very good example. We have had several nomenclatures developed to describe the phenomenon—mental subnormality, mental deficiency, and mental retardation. Within these nomenclatures we have also seen profound reinterpretations of their concepts, three (soon to be modified again) definitions of mental retardation have been advanced by the American Association on Mental Retardation (AAMR) since 1959 (Heber, 1959). For concise histories of these changes in our field, see, for example, Dybwad (1996) or Mercer (1994).
The reason I am happy is not because I believe that we have come to a point where we will put forth a term or way of looking at persons with cognitively limiting conditions that will be scientifically valid, once and for all. The happiness is really a political thing. For too many years I have heard the complaints of my friends who have been labeled by this term, suffered its consequences, and developed a deep distaste for it. Without implying that all persons so-labeled do not like the term, the most vocal, the organized self-advocates, have been strongly advocating to see it changed but have been very frustrated in their efforts to do so. As with other minorities, they have a right to decide their social label, by what name they want to be known (minority-chosen labels have then gone on to become names of official academic disciplines, for examples, “African American Studies, “Gay and Lesbian Studies,” “Women's Studies”). Now, finally, self-advocates appear to have been successful at convincing the most single powerful organization that could change the term mental retardation to consider doing so, perhaps thereby establishing potentially another domain of academic study.
However, and this I suppose accounts for the ambivalent title to this commentary, as an historian of the field I also identify with the feelings of other friends. Despite deep sympathies with self-advocates, because I understand where “mental retardation” came from, I cannot but be somewhat saddened by its prospective demise. As I write this, I hold in my hand a copy of a mimeograph of the minutes of the Committee on Nomenclature of the American Association on Mental Deficiency (AAMD) from 1954. It was secured from one of the files of Elizabeth Boggs, who served as a parent representative on that committee and whose main objective was to convince the professionals to reject the nomenclature of mental deficiency and adopt that of mental retardation. I am sure that she manipulated her way on to the committee partially because of the general malaise of post-World War II parents with the existing terminology of the era, which sanctioned official medical terms such as idiot, imbecile, and moron. Boggs, like other parents of her era, appreciated the stigma that had accrued to these words. In fact, one of the founding parents of the earliest parent group in New York referred to these terms as part of “a nomenclature of despair” and declared that this terminology would be one of the organization's first targets (Goode, 1998).
There were other competing terminologies at the time, although by 1958 mental retardation was “most commonly used in the United States as a comprehensive term covering all degrees of impaired mental development regardless of cause.” This quote comes from a single page disseminated by the National Association for Retarded Citizens dated January 1958, which contains notes on some useful definitions; it appears to be a flier meant for parents. Other terms noted in this paper that were employed with regularity at that time were mental deficiency, mental subnormality (used by the World Health Organization), feeble minded [British], mental handicap, amentia, brain-injured, and psuedo-feeble mindedness [functional mental retardation due primarily to emotional factors]. There was a scholarly debate about the relationships among these terms and their proper usage; but it was a parent–professional coalition favoring the term mental retardation that led to its general usage and eventually to AAMD's action in 1959.
Thus, my ambivalence comes from the following historical irony: In the late 1940s and early 1950s, many parents of children with cognitive disabilities found themselves in dire straights. They began a movement in which they fought courageously and with much self-sacrifice to establish a better world for their children, including a kinder scientific nomenclature. Without their efforts many of the good developments that we see in our field today would probably never have come to pass. Their kinder nomenclature was based upon the concept of “mental retardation,” which at that time had little social stigma attached to it. They worked vigorously for its adoption. It is, therefore, no wonder that some of these older parents, today seen by many as retarding the development of the field, feel badly when they hear the term attacked and rejected. Given an appreciation of our history and their dedication to the field, I can also sympathize with their position.
History, however, moves on. As a historian I can appreciate the utility of earlier beliefs without necessarily adopting them myself. Contemporary leaders of the self-advocacy movement have strongly voiced objection to the stigma associated with the label “mental retardation.” This is based upon personal experiences with the term in their everyday lives, including for too many its role in their incarceration and severe abuse. From these experiences, and despite their parents' good intent, a deep generational difference developed. This difference illustrates a very important thing about labeling persons with disabilities, that the term per se is less important than the actual ways that it is used in everyday life. If social institutions and attitudes about persons with disabilities are structured negatively, as they were in the mid-20th century and arguably continue to be today, then adopting a nonstigmatic term in and of itself will not change things much. The new term itself will soon take on the historical baggage of the era. For the sons and daughters of the parents who fought so hard to have “mental retardation” adopted in the first place, the phrase became one associated with derision and social exclusion. In the late 1960s, anthropologist Robert Edgerton (1967) found that mental retardation was the most stigmatic label that could be used in our society.
No matter what term we decide to use today, it runs the same exact risk as mental retardation. There will always be both positive and negative ways any nomenclature will impact the lives of those to whom it is applied. Whether we are talking about researchers (who make up scientific labels), clinicians (who apply them to individuals), human service officials (who use them to determine eligibility for various entitlements), or the everyday person (who employs such terms in a variety of ways and for a variety of purposes), there will be both hurtful and helpful impacts on people with disabilities created by their work (i.e., in the ways that they actually utilize the nomenclature. Because some sort of distinguishing label is required for science, clinical work, and human services, there is no feasible way to do away with labels altogether. Whatever term we come up with at this juncture of history, and I strongly recommend that we involve self-advocates significantly in our deliberations, we will still be in exactly the same position with regard to minimizing its negative impacts while maximizing positive ones. We will still be in the very same position of having to positively influence social attitudes about the persons so-labeled. If we continue to do this diligently, then a change in terminology may indeed become part of an overall effort to improve the quality of life for persons who are today called “mentally retarded.”
At a meeting of self-advocates during which we discussed labels, one young man vigorously argued that we should have no labels at all, that we are all just people. As a person with multiple disabilities, he had experienced social uses of labels in ways that devalued and excluded him from society. One could identify with why he felt so strongly; and, of course, he was correct—in an ideal world. Although sympathetic, I explained that in the practical world we need labels. We would not want scientists to stop doing scientific research about disabilities. Scientists need such labels to do their work. We would not want clinicians to not be able to accurately diagnose and treat individuals with disabilities. They also require labels. Further, we do not want special educators or social security personnel to be unable to identify who is entitled, and who is not entitled, to specific services, supports, and benefits. They also need labels. At this point, convinced that some sort of distinguishing label was required the young man said, “Couldn't they just put an asterisk next to my name?” To which I answered, “Sure they could. But, if things in society do not change, then one day some kids would be teasing kids with disabilities by calling them “tisks” or “asters.”
NOTE: A fuller explication of these remarks will appear in a chapter entitled “What Was Mental Retardation?” in H. Switzky and S. Greenspan (Eds.), What is Mental Retardation? American Association on Mental Retardation (in press). Historical materials were collected at the Samuel Gridley Howe Library on the grounds of the Fernald School in Waltham, Massachusetts, for which the author is extremely indebted to the late Gunnar Dybwad. Some of the ideas presented are the result of conversations with Executive Director Ethan Ellis, New Jersey Disability Council.
Author: David Goode, PhD, Professor of Sociology, College of Staten Island & Graduate Center of C.U.N.Y., 2800 Victory Blvd., Staten Island, NY 10314.