The demarcation of intellectual disability.

03Original abstract

I leave it to the historians to identify the origin of the classification of people, but I suspect the event lies well beyond the reach of recorded history. It is in the nature of humans to name and subdivide ourselves. How we do this is a matter of endless debate, though some approach the task with greater certitude than others. British scholar Galton (1884) was an early proponent of the “scientific” measure of man and human nature: “I do not plead guilty to taking a shallow view of human nature, when I propose to apply, as it were, a foot-rule to its heights and depths. The powers of man are finite, and if finite they are not too large for measurement' (p. 732). In the centuries since then, we have applied an endless variety of “foot-rules” to the measurement and classification of ourselves.Intellectual disability (ID) is an important part of this history. Our definitional conventions have evoked significant controversy along the way as the labels and criteria have evolved with diagnostic methodology and in reaction to the cultural Zeitgeist. I fully anticipate having to someday explain my role as editor of a journal that had the hopelessly pejorative label, “intellectual disability.” Change is inevitable. The United States is in the midst of a legislatively mandated replacement of the term mental retardation with intellectual disability in various federal statutes as a consequence of Rosa's Law (2010). Additional proposals are on the table for changes of terminology in the Medicare, Medicaid, and Social Security programs. The American Psychiatric Association is completing deliberations over a terminology change in their Diagnostic and Statistical Manual. In the discussions over the 11th edition of the International Classification of Diseases (ICD), intellectual developmental disorders is the proposed replacement term for mental retardation.These considerations involve more than subtle shifts in the rules of classification and naming conventions. These two threads—classification rules and their labels—are distinct but are inextricably intertwined. In his analysis of classification, the psychologist Estes (1996) noted the importance of conceptually distinguishing the two cognitive processes of classification: applying rules for grouping of objects or people together and the attribution of properties to each member on the basis of the group to which he or she belongs. A more metaphysical perspective is provided by Jenkins (1998) who referred to the “ontological status” of the person that is communicated by our disability classifications (p. 8). In other words, categories convey truths about those labeled. Defining and naming is a judgment on the human condition.These dual concerns are woven throughout the articles of this special issue. The intent of this issue is to provide perspectives from the American Association on Intellectual and Developmental Disabilities (AAIDD) community on the current and proposed conventions for classification and naming of ID. We are very fortunate to have a roster of authors familiar to readers of the ID research literature and the key thinkers on the topic of definition, classification, and assessment. The first commentary, by Schalock and Luckasson (2013), summarizes the contemporary basis of ID terminology and definition. Both scholars have been essential contributors to our current approaches to definition and classification. In their critical overview of the four functions of naming—defining, diagnosing, classifying, and program planning—they draw attention to the fact that though our labels have changed, the essential operational elements of ID definition have been in place for half a century. Perhaps more critically, elements of the definition provide direct links to the conceptualization of supports and services.In their companion piece, Luckasson and Schalock (2013) outline specific recommendations and the rationale for how the field should proceed and the implications of alternative approaches. Again, propositions emerge from the act of naming, and the thrust of their argument is that our definitional conventions must lead to “person-referenced” and “service-delivery” propositions such as inclusion and empowerment, antidiscrimination, and accountability.Legal perspectives have shaped our contemporary approach to ID in profoundly important ways and so we present two legal evaluations of the issue. Ellis (2013) considers the classification and naming choices through the lens of the law, exploring the genesis and implications of the concepts of “disorder” and “disability.” In his analysis, etiology and medical classifications have played a lesser role in legislation and court rulings than have the disability-related concepts of function and limitations in life activities. His analysis leads to propositions similar to those suggested by Luckasson and Schalock, specifically that the current application of ID concepts help underscore the importance of compensatory and supportive actions.I use the word conundrum often, which I suppose reflects poorly on my choice of problems to work on. In their respective articles, both Tassé (2013) and Wehmeyer (2013) use the word to good effect in their analyses of the proposed revision of the ICD. Tassé explores the intersection of the disorder–disability distinction in terms of the historical development of our conceptions of ID. Some basic background on the structure and logic of the ICD is provided and the challenge of the proposed ICD–11 revision is introduced. The “disorder” versus “disability” conundrum theme is developed further in Wehmeyer's article. He describes the shifting of disability conceptions and theories since mental retardation was first incorporated into the ICD–10 in 1990. The ICD classifies diseases, not disabilities, but is so closely linked to the allocation of resources that removal from the classification system is simply not an option. Wehmeyer asks, “What to do?”Tassé, Luckasson, and Nygren (2013) address this most difficult of tasks: making sense of a complex topic area while providing practical recommendations. A cogent summary of the proposed changes to the ICD, 11th edition, is presented—and, perhaps more importantly, they address Wehmeyer's “What to do?” query. The recommendations were given to the World Health Organization Secretariat and represent the board endorsed position of AAIDD on naming, definition, and diagnosis. A rationale accompanies each of the recommendations.The Supreme Court's ruling that the application of the death penalty for those with ID amounted to “cruel and unusual punishment,” presents the exemplar of high-stakes implications in the consideration of definition and classification (Atkins v. Virginia, 2002). Olley (2013) uses the analytic lens of legal interpretation and the death penalty in his evaluation of classification and naming schemes. Each element of definition can play a role in determination: notions of competence, relevance of dimensions other than IQ, the nature of the relationship between adaptive behavior and intellectual functioning, and the use of more expansive terms such as cognitive function. The essential message in Olley's analysis is that even superficially modest changes can have significant implications.Ford, Acosta, and Sutcliffe (2013) take up the collateral meaning of names from a federal policy and consumer-oriented perspective in the brief review of the transition from mental retardation to intellectual disability in the United States. Included in their review are the outcomes of Rosa's Law (2010) in the language of federal statutes. Changes are beginning to ripple through the federal system, even across key government programs exempted from the law. They discuss the “grassroots” implications of our classification schemes. At the heart of their article is the message that the most critical implications are the effects on and reactions of those who are labeled and their families. It is critical that people with ID and their families be part of the dialogue.In the interrogation of the distinction between disorder and disability, virtually all the contributors invoke concepts such as “context” and “environment” and the “interaction” of these setting considerations with the person. Shogren (2013) extends the discussion of classification and naming in a comprehensive consideration of the meaning of “context.” Her conceptual framework moves beyond our common understanding of the proximal environment and attempts to tie together the many different levels of context relevant to disablement: the individual and the family, neighborhood and community, culture and society, and context across time.“Intellectual disability” is a contested concept. The “foot-rules” for its measurement have been points of debate in the past and most certainly will continue to be into the future. If definitions and associated labels were merely a matter of self-reference, then I would be quite comfortable with an agnostic perspective on labeling: There are different conventions for different purposes. The “population” of persons with ID is best viewed as a collection of overlapping subgroups, with considerable, but not total, communality. But this is a high-stakes matter at a critical juncture in time. We must classify and name. Whatever your biases on this matter of definition and labels, I hope these articles help highlight the conceptual ambiguity and vagaries of classifying human variance into simple dichotomies.

Intellectual and developmental disabilities, 2013 · doi:10.1352/1934-9556-51.2.083