Recent discussions about changing the term mental retardation to a different term may be considered in the broader framework of three distinct but related processes: naming (terminology), defining, and classifying. The three processes are analyzed according to their purposes and functions: In naming, a term is assigned; in defining, the term is explained; and in classifying, the group is divided into subgroups according to stated principles. The current status of each process is described, especially as represented in the 1992 AAMR manual, Mental Retardation: Definition, Classification, and Systems of Supports. We suggest three sets of guiding questions that may help evaluate proposed changes in naming, defining, or classifying.
Recent discussions in the field of mental retardation have been focused on whether to change the term mental retardation to another term. As the field begins to address a possible change in terminology, it is useful to consider the question of a term change in the context of the broader terminology, definition, and classification issues.
First and foremost, we emphasize that the term given to any disability is not the essence of any individual who has the disability. Individuals are people first.
Second, although the interaction of power and language is important in the dialogue about naming, defining, and classifying, such an analysis is beyond the scope of this commentary. Questions about who has the power to name, for whom are these decisions made, who are the arbiters of when a decision is appropriate, and how do the results of language changes affect the power relations between individuals warrant continuing discussion.
Naming (terminology), defining, and classifying are three distinct processes in the field of mental retardation (as they are in many scientific or partially scientific fields). Currently, the naming of mental retardation is engendering considerable discussion, but in the last 7 years or more, the defining and classifying of mental retardation has also engendered considerable discussion.
What issues have been raised in these discussions? In the naming process, discussion has focused on the stigma associated with the term mental retardation, the increasing rejection of the term by people with the disability and their families, and a desire in the field to use the most appropriate term possible. In the defining process, discussion has focused on the American Association on Mental Retardation's (AAMR's) 1992 new definition, particularly the functionalist and interactionist aspects of the definition. In the classifying process, discussion has focused on the AAMR 1992 new classification systems of supports, especially the omission of the more traditional classification by IQ score ranges (mild, moderate, severe, and profound) and the addition of classification by intensities of needed supports (intermittent, limited, extensive, and pervasive), which do not correspond to IQ score ranges.
In this article we discuss the three processes of naming, defining, and classifying. We attempt to clarify the concepts behind the controversies and offer an analysis of each process, its purposes, and current status. We also suggest a list of questions for each process that may help evaluate future proposed changes.
Naming refers to assigning a specific term to something or someone. Naming probably reflects a basic human desire to create order in the world. In order for a name to function in communication and to carry meaning, the name must be commonly accepted as the assigned term. Currently, the name most commonly used in the United States in the field of mental retardation is mental retardation.
In the natural development of a language, terms often appear and disappear, depending on their perceived usefulness. In the field of mental retardation, the term mental retardation has been used for approximately 50 years (Sloan & Stevens, 1976; Trent, 1994). A precise number of years cannot be calculated because, as with many terms, the period of routine usage was preceded by a period of only occasional use of the term.
The disability currently named mental retardation has had a variety of terms applied to it over the last 2,500 years. Over the past 200 years, these terms have included feebleminded, mental defective, mental deficiency, and others. The history of changing terms is reflected in the history of AAMR. At its founding in 1876, the association was known as the Association of Medical Officers of American Institutions for Idiotic and Feebleminded Persons. Later: the name was changed to the American Association for the Study of the Feebleminded (1906), then the American Association on Mental Deficiency (1933), and, most recently, to the American Association on Mental Retardation (1987). The Arc (formerly the Association for Retarded Children, later the Association for Retarded Citizens) also reflects changing terms, although less dramatically because it was founded in 1950 and, thus, reflects a shorter historical period.
Language is alive. Whether a name is a new term, a new application of an old term, or a modification of an existing concept, its likelihood of success is enhanced if it satisfies certain requirements. In naming, a term must be selected that is specific and consistent. The term should refer to a single entity and permit differentiation from other entities. That is, the term should refer to this and nothing else. The specificity of the term will increase consistent application and facilitate communication between individuals, disciplines, and societies.
In a variety of settings and among different people, the term should be used the same way. Consistency may be easily achieved after a long period of usage, but difficult to achieve at the beginning of a new usage. Consistency may be easier to achieve when a term is incorporated in the language of a single group and more difficult to achieve when incorporated in the language of different groups because different groups may use the same term but in varying ways. One of the complicating factors in considering a term for mental retardation is that the term is used by so many different groups (e.g., individuals, families, schools, psychologists, lawyers, physicians, neighbors, and professional organizations) and for so many different purposes that consistency is not easily achieved.
Another critical issue in naming is whether this term genuinely facilitates communication. The exchange of ideas, messages, and information that is the essence of communication should be enhanced by the use of the term. Further, especially in scientific fields, the term must adequately represent current knowledge and be able to incorporate new knowledge as scientific advances occur. Today, as advances in education, neurology, assistive technology, and other areas open new possibilities for people with mental retardation, a designated term for the disability should be able to accurately represent the existing state of understanding as well as readily incorporate new knowledge in the field.
The process of selecting a term will be aided if the purposes of the term are clearly expressed and agreed upon and if there is an analysis of whether the proposed term is responsive to those purposes. Part of the current discussion on a name change is the attempt to clarify the purposes of the term mental retardation.
Finally, an essential component of naming a group of people should be the communication of important values, especially respect toward the group. This is an aspect of the naming process that has generated a great deal of discussion, with many individuals asserting that the current name does not communicate respect. At the beginning of the 21st century, we find heightened awareness of the destructive potential of labels applied to people. The fear is that the very process of naming, and, thus, specifically identifying the differences between people, may lead to devaluation. There are several questions that should be asked when names or terms are considered:
Does this term name this and nothing else?
Does this term provide consistent nomenclature?
Does this term facilitate communication?
Does this term incorporate current knowledge and is it likely to incorporate future knowledge?
Does this term meet the purposes for which it is being proposed?
Does this term contribute positively to the portrayal of people with the disability?
Defining refers to precisely explaining a name or term. The term must be outlined clearly and differentiated from other terms. The purpose of defining is to establish the meaning and boundaries of a term. The process of informally defining terms has occurred since the beginning of human speech; however, systematic defining has occurred relatively late in language history. For example, the creation of the first alphabetically organized complete English dictionary did not begin until 1857 and required 70 years and extraordinary resources to complete (Winchester, 1998).
Defining a term can have tremendous consequences. Because the essence of a definition is that it separates something from another (named) thing, a major consequence of a definition is that it can cause people to gain or lose positives and/or negatives that are distributed by category. That is, a definition can make someone or something eligible or ineligible (as to serving on a jury), subjected to something or not subjected (as to involuntary commitment), exempted from something or not exempted (as from the death penalty), included or not included (as to protections against discrimination), entitled or not entitled (as to Social Security).
Defining a term is extremely difficult. Winchester (1998), in his history of the first English dictionary, described the challenges and some of the steps of the defining process:
Defining words properly is a fine and peculiar craft. There are rules—a word (to take a noun as an example) must first be defined according to the class of things to which it belongs, and then differentiated from other members of that class. There must be no words in the definition that are more complicated or less likely to be known than the word being defined. The definition must say what something is and not what it is not. If there is a range of meaning of any one word, then they must be stated. And all the words in the definition must be found elsewhere in the dictionary—a reader must never happen upon a word in the dictionary that he or she cannot discover elsewhere in it. If the definer contrives to follow all these rules, stirs into the mix an ever-pressing need for concision and elegance—and if he or she is true to the task, a proper definition will probably result. (p. 151)
The AAMR has a long history of defining mental retardation, beginning in 1921 and continuing through nine editions of the terminology and classification manual, most recently the 1992 edition (Luckasson et al.). The current definition has four components: (a) a statement that mental retardation refers to limitations in present functioning, (b) a requirement of subaverage intellectual functioning, (c) a requirement of coexisting related limitations in adaptive skill areas, and (d) a requirement that the disability was manifest during the developmental period. Also included as essential to the application of the definition are four assumptions that: (a) cultural, linguistic, communication, and behavioral diversity are recognized; (b) adaptive skills are assessed within the peer group and community context; (c) adaptive limitations coexist with adaptive strengths; and (d) with appropriate support, the life functioning of an individual will generally improve.
We suggest several questions for analyzing a proposed definition:
Does this definition indicate the boundaries of the term, that is, who or what is inside the boundaries and who or what is outside the boundaries?
Does this definition indicate the class of things to which it belongs?
Does this definition differentiate the term from other members of the class?
Does this definition use words that are no more complicated than the term itself?
Does the definition define what something is, not what it is not?
Does this definition allow some generalizations about characteristics of the individual or group named by the term?
Is this definition consistent with a desired theoretical framework?
Does this definition contribute positively to the portrayal of people included in the term?
With regard to Questions 1 to 6, the current definition of mental retardation is internally consistent and appears to define a class of members with the disability. Question 7, whether the definition is consistent with a desired theoretical framework, has given rise to conflicts. Because mental retardation is so complex, it requires the interaction of many disciplines. The members in each of these disciplines bring particular training, world views, and theoretical constructs to their understanding of mental retardation. The purpose of defining the term mental retardation may be unique to each discipline. For the law there is the need to set a line that defines what is acceptable and that which breaks the law; for medicine there is a constant dynamic of the human physiology that must be brought to optimal stable function; for policy development and implementation, there are populations who will receive benefits or access to specific supports and who will be denied those same or equivalent supports; for education there is the challenge of assisting students to learn. This creates the tension around a desired theoretical framework.
Finally, an essential question for a definition, as for the other processes, is whether it will lead to respectful understanding of people. Most evident is the labeling of people with limitations in functioning and subaverage intelligence—both are direct and indirect measures of being “not normal.” Certainly many people feel the ostracism and stigma of being labeled and marginalized as having mental retardation rather than being recognized for their participation in and contribution to their society. No one should be marginalized for needing supports to function. This is a very potent challenge to the value of including all members of society without prejudice and discrimination.
Classifying refers to dividing into groups what has been included within the boundaries of a name or term. In classifying, one creates subgroups or clusters within the defined group, according to some established criteria.
A system for classification may be created in many different ways and organized along different types of criteria. For example, medical disease classification systems are usually organized around etiology or prognosis; a classification/taxonomy of species is organized around physical traits; some new virus classifications are organized according to DNA patterns. Historically, classification in mental retardation created groups based on ranges of IQ scores. Classification systems such as the mild, moderate, severe and profound system (Grossman, 1983); the moron, imbecile and idiot system; and high grade, middle grade, and low grade hierarchy reflected divisions based on IQ scores or capacity.
Some have suggested that a classification system in mental retardation is not necessarily required. Naming and defining—that is, assigning a term and defining who is within the boundaries and who is outside the boundaries—might be sufficient. A classification system (or perhaps several different classification systems, depending on various purposes) may have, however, some useful purposes, including allowing coding, facilitating record-keeping, providing consistent nomenclature, facilitating communication, allowing generalizations, contributing to positive portrayal, providing a principled organizing system for incorporating new knowledge, allowing planning, and allowing some predictability about outcome. As a result, at least in recent history, classification systems have always been employed in the field of mental retardation.
The current AAMR classification system is the 1992 system. This system retained the IQ ceiling as part of the definition, but no longer classified by four gross IQ ranges. It changed from classifying the level of IQ to classifying intensities of needed supports. The individual's support needs in each of 10 applicable adaptive skill areas are classified as intermittent, limited, extensive, or pervasive. This sometimes is referred to as the ILEP classification system. Consideration of five factors contributes to the intensity decision: time-duration, time-frequency, settings in which the supports are needed, resources required for the supports, and degree of intrusiveness.
What was the basis for the change to the ILEP system? The 1992 system melded two prevailing theories about mental retardation. The system acknowledged the existence of genuine impairments in the individual but also reflected the idea that expression of the impairments is strongly affected by the life arrangements of the individual: biology in a social context. The 1992 system changed the focus of evaluators from determining what place an individual held on the IQ continuum to what can the person do and what supports does the person need in order to function better.
A classification system should allow the whole that has been named and defined to be divided into smaller groups, according to some consistent and meaningful criteria. Some have argued that the previous AAMR classification system of mild, moderate, severe, and profound was superior to the ILEP system because IQ testing produced consistent smaller groups. Even when adaptive behavior information was incorporated into the classification decision, the same IQ-based groups seemed to emerge consistently. Others challenged the IQ-based classification system, arguing that assigning someone to an IQ-based subgroup after already having determined the specific IQ score was redundant. Additionally, IQ scores alone do not predict the range or sophistication of learning that individuals will achieve during their lifetimes or the supports they will need in order to function better. It appears that the ILEP system has created movement toward a more useful classification system but has not yet reached the level of predictable sorting that the IQ-based system achieved. The work continues.
Whatever the conclusion to the debate on using meaningful criteria for classifying, a proposed classification system should accomplish other goals beyond merely creating smaller groups. For example, a classification system should facilitate record-keeping. Record-keeping may be necessary for determining efficacy, evaluating personal satisfaction, studying long-term effects, and many other uses. The system should also provide consistent nomenclature. As a student transfers from one school to another, for example, teachers in each school should have an understanding of the meaning of “Roy needs pervasive supports in social skills.” A classification system should facilitate communication. An important measure of utility should be whether a particular classification system enhances the transmission of ideas, messages, and information.
In addition, a classification system should allow some generalizations about the individual or small group. Unless the subgroups are sufficiently unified in character, as for example, everyone in the subgroup requires a particular intensity of supports, generalizations cannot occur. A classification system also has an important role to play in the organizing of knowledge. The system should lead to useful organizing of existing knowledge and create a framework for incorporating future knowledge. One of the tensions between the mild, moderate, severe, and profound system and the ILEP system is a tension between organizing knowledge into a trait-based framework versus organizing knowledge into a supports and interaction-based framework.
Related to the record-keeping role of a classification system is the role classification may play in the planning and allocating of resources. Many community-based supports providers have adopted a supports-classification system because it facilitates their agency's planning process and budgeting for supports. A classification system should also contribute to meaningful predictions. As the paradigm has shifted in the field of mental retardation, a revolution in the very nature of what ought to be predicted has occurred. A typical request for prediction in the past might have been “Will she benefit from education?” whereas now a more likely request would be “What supports will you need to achieve your dreams?” This leads to another important question for analyzing a classification system, namely, whether it is consistent with a desired theoretical framework. A classification system is not a scientific truth waiting to be discovered and implemented. It is a tool arising from a particular theoretical framework. The question has two parts: whether the proposed classification system genuinely reflects the theoretical framework and whether that theoretical framework is the desired one.
Finally, an essential aspect of analysis in the process of classifying, as with each of the other two processes, is “Does this proposed classification system communicate respect and contribute positively to the portrayal of individuals and groups?” The following questions can be used to analyze the classifying process:
Does this classification system allow coding into groups based on some consistent and meaningful criteria?
Does this classification system facilitate record-keeping?
Does this classification system provide consistent nomenclature?
Does this classification system facilitate communication?
Does this classification system allow some generalizations about the individual or group?
Does this classification system create a principled organizing system for incorporating new knowledge?
Does this classification system promote planning and allocation of resources?
Does this classification system contribute to meaningful predictions for individuals or groups?
Is this classification system consistent with a desired theoretical framework?
Does this classification system contribute positively to the portrayal of individuals or groups?
Naming, defining, and classifying are three distinct processes, although necessarily related to each other. In 1992, AAMR developed both a new definition and a new classification system. The AAMR accepted, at that time, the name mental retardation and did not address changing the term or the name of the organization.
Our purpose in this commentary was to attempt to clarify the three processes so frequently confused in discussions of whether to “change mental retardation.” By emphasizing the unique qualities of each process, and suggesting guiding questions for consideration of changes, we hope to contribute to clearer reflection and discussion. However, the discussion is not merely about changing words; it is also about tensions among competing theoretical frameworks, conflicting values, modern applications of traditional scientific activities, power relations, and the transitions of an organization that has been important in American society's responses to people with mental retardation for 125 years.
The AAMR began as an institution-based physician superintendents' professional organization. One of the greatest strengths of this organization today is that it embodies the history of care for, and thinking about, persons with mental retardation in the United States. Now we are faced with the challenges of incorporating new service models, more diverse professions, changed relations between people with mental retardation and their societies, and an international world view. It is important to remember that this organization holds part of the history of treatment and mistreatment of people with mental retardation and to honor the integrity of that history while changing to reflect new professional services and demands required in the coming decades.
Changing the name of this organization would have certain ramifications. Changing the term and its definition would have different effects within differing disciplines and within the social policy arena. As the field now explores whether to change the term mental retardation, and reviews the short- and long-term implications of changing a name or term, we hope that our analysis contributes to the discussion.
We extend appreciation to the other members of the present AAMR Terminology and Classification Committee: Sharon Borthwick-Duffy, Wil Buntinx, David Coulter, Robert Schalock, Martha Snell, Deborah Spitalnik, Scott Spreat, Marc Tassé, and Ellis Pat Craig.