“A great many people think they are changing when they are only rearranging their prejudices”—William James
Regardless of our varied personal experiences and individual backgrounds, or our different professional disciplines, or the collection of philosophical approaches to which we ascribe, we are all part of a truly remarkable field. In a nation that has tied its growth and health to the individual self-interest of capitalism, we stand out by our comparative selfless determination to help others. We are a unique field in that we are thoroughly interdisciplinary, and we were among the very first organized groups of helping professions to fully understand the value of such an approach. At the same time, our heterogeneity and divergent backgrounds can sometimes lead to a potentially unhealthy amount of internal squabbling. The prospect of terminology change that we now face is likely to lead to a profusion of viewpoints and to inevitable disagreements. In this essay I offer some ideas on how we might think about elemental change in our terminology so we can achieve a healthy outcome without simply “rearranging our prejudices.”
First, we need to come to a better understanding of how language evolves in a living culture, and, in particular, how our field's technical terms have changed over time. In a sense, the apprehension we may feel as our terms change is only, really, about words; and words change. Second, we need to avoid the trap of allowing a simple change in terminology to serve as a proxy for larger ideological battles.
The Changing Nature of Language
Even a half-hearted onlooker cannot help but realize that in this fast-paced world, most aspects of popular culture are constantly changing, including that particular “subculture” that we know as the field of developmental disabilities. As our world changes, our words, and the way we use them to describe the world, change as well. It is not far-fetched to say that changes in our language are among the most obvious indicators of overall societal change. Although names for most things survive over an extended period, a great many do not. New terms are created or enter from other cultures (astronaut, e-mail, day trader, website, salsa); old terms fall from common use (doughboy, ice box, neurasthenia, feeble minded); some words acquire new meanings and usages (e.g., link as a click-point to a related web page; input as a verb; and rap as something you listen to instead of something you do with your knuckles).
Sometimes the names of things do not change, but what they refer to, their referents, change dramatically. For example, the particular collection of tasks, duties, skills, abilities, and knowledge that give meaning to the term nurse in today's operating rooms or trauma centers, is immensely different than what the term nurse may have meant on a battlefield during the Civil War. Similarly, principals still manage schools; however, today they often need to have the savvy of a business person, the persistence of a labor negotiator, and the fortitude of a police commissioner in addition to their abilities as educators. Over time the referents for these two words (nurse and principal) have shifted. Indeed, much of our world is now a swirling cacophony of changing words and referents, driven in large part by all of us, we who, for better or worse, make up a highly charged, media-savvy, corporate-logo, politically sophisticated world. It is in this climate of cultural change, language change, and changing referents that we find ourselves contemplating new terms in our field.
Although we have evolved from the societies that existed in our own earlier times, those that existed in the 1780s, the 1860s, the 1920s or even the 1970s, we do not live in them. Today we live differently. We work differently. We use information differently. We understand things differently. And we think differently. Consequently, we speak differently. The differences between our own and earlier times demonstrate that change, constant change, that is growing ever more rapid, is an inherent part of our human culture. Cultural change not only affects language but also washes over the political and social group affiliations that exist in society. Nearly all our cultural institutions are more diverse, for example, with respect to race, gender, and, yes, disabilities than they were, for example, in 1950. This does not mean that they are as diverse or as accommodating as they should be, only that they are certainly different than at the middle of the previous century.
In fact, changes in terminology have been going on for as long as we have known about what we (temporarily) call “mental retardation.” The first widely used general term in America was feeble mindedness (a term, by the way, that was memorialized in the first name of the Association sponsoring this Journal), which became widespread in the early part of the 1900s. Eventually, feeble mindedness itself was divided into subgroups, or levels: moron, imbecile, and idiot, corresponding roughly to our understanding of mild, moderate, and severe–profound mental retardation, respectively (Scheerenberger, 1983). Prior to the beginning of the 1900s, variants of the term idiot were used to describe general classes of individuals who were considered outside the realm of “normality” (cf. Trent, 1994).
These terms (moron, imbecile, idiot, and now retarded), which now strike our sensibilities as derogatory and belittling, clearly demonstrate how terminology used in the past to describe this population acquires negative connotations over time. These terms have become “fightin' words” in many contexts, from playgrounds to city council chambers. We do not find these terms quaint and picturesque or consider them as interesting remnants of the past as, for example, a neurologist might find the term homunculus. Instead, colloquial use of terms for mental retardation have become school-yard and mass media insults; many individuals use them to deride those they loathe. It should not be surprising that the individuals we serve who have the cognitive capabilities to comprehend the negative connotations do not like these terms.
Over time, partly because of growing disdain for them and partly because the field moved on, the terms used in the late 1800s and the first half of the 20th century, fell away. By the middle of the last century, in the 1940s and 1950s, the terminology was again shifting, as the field continued to struggle to understand the phenomena we know as mental retardation. The term mental deficiency is typical of this period. Its initial lack of negative connotation is supported by the fact that this term also became part of the Association's title until rather recently (i.e., American Association on Mental Deficiency). Over time, the “deficiency” and “defectiveness” aspects of terms of this era gave way to one that incorporated the idea of developmental rate, and “mental retardation” came to be the term used most often.
What is often overlooked is that none of these terms, when proposed, were intended to negatively stereotype individuals. Rather the scientists and practitioners who proposed them were attempting, first, to understand the mental and developmental phenomena they observed and, second, to achieve some standard language with which to communicate about these phenomena. Thus, as understanding of the “referents” of the phenomena expanded, new terms came into being. We should not be surprised by the expectation that, over time, we need to use language differently in referring to the changed relationships among words, their referents, and the people who use them. In short, changes in terminology in our field are inevitable. Because they are, we should not engage in policy fights, identity crises, or other ideological wrestling matches when the time comes to change terms.
Today, most people realize that, to some extent, beneath the acquisition of negative connotations for terms describing mental retardation is the devalued nature of the referents or the characteristics of mental retardation itself (e.g., Wolfensberger, 1972). By understanding that fact, we can further understand that the real question about individuals should not be what we are going to “call them” in the future, but whether or not they will continue to be devalued because of certain personal characteristics associated with their development. When the essential issue is more properly construed as “valuing versus de-valuing” rather than what to call them, then it matters less what terms we use. But it still matters, a point to which I will return in a moment.
Because of the valuing versus de-valuing issue, over time, the terms we select, no matter how acceptable at first, will become less desired and, therefore, less useful. There is a lesson in this for how we might go about adapting the ever-changing nature of language to our professional, technical, scientific classification, and to our everyday language needs as well. Put simply, every so often we may need to let particular words go, while preserving the essential nature of our field and its knowledge base. We would do well to recognize that the words we use will need to evolve and change in a natural way (perhaps every generation or two) because those we serve can be hurt as the very words used to denote them come to be seen as negative.
In the end, we need to be aware that, given the ever-changing nature of language along with the fact that terms for mental retardation inevitably (so far) have acquired negative connotations, the terms we employ are simply the tools we happen to be using at the moment. When they wear out, we should get new ones. In an ironic way, perhaps, that is precisely what has been happening without our realizing it—how else, in little more than a century, could we have gone from idiocy to feeble mindedness to mental deficiency to mental retardation?
The Separation of Ideology and Terminology Change
Because terminology for mental retardation has been changing “of its own accord” with the language all along, why should we worry about potential problems now? The answer to that question might be subsumed under the general heading of political correctness. It is one thing to comprehend that language changes and that terms acquire certain connotations, and it is quite another to actively bend the language for political and ideological ends, which is precisely what political correctness does. Admitting that specific terms can become negative and need to be updated should not be equated with a desire to jettison the entire scientific paradigm that originally gave rise to the terms. My fear is that we are likely to hear exactly this from certain elements in our field. The need for scientific classification, which some have confused with “labeling,” continues to be vitally important. Especially now, with the promise of new technologies, such as genome and syndrome research and advanced information technology, science is finding ways to explicate more aspects of developmental disabilities. In such contexts, the activities of labeling something and describing its characteristics are not, in and of themselves, negative endeavors. Indeed, classification and labeling form part of the foundation for science and are critical to understanding our world and all the people in it, including those with disabilities.
There are those in our field who have quite progressive ideas about self-determination and assuring that control of services, and payment for them, is directed by the consumers of services. It is likely that some of these folks, however well-intentioned, will see imminent changes in terminology as an opportunity to address a policy agenda as to the nature of services. To the extent that these individuals succeed in having all service systems function under control of the individual, for all individuals, it is likely that a substantial portion of people with developmental disabilities will be poorly served. This is so because people with mental retardation and related developmental disabilities are not homogeneous; rather, they range from individuals who have few, if any, self-preservation skills and require intense round-the-clock supports, to individuals who differ very little from the general population. It is folly to think a one size fits all service system will suffice. Unfortunately, institutions and, to some extent, community agencies, as well as very specialized professional services for those with more intense needs, have sometimes come under attack from this camp.
This segment of our field has often called for change to be as sweeping as possible (i.e., a paradigm shift), rather than accept the incremental progress of knowledge and technology that is typically characteristic of a human service field, and, by the way, of science. Or they have abandoned the “field” altogether and viewed what we do as a “movement” or civil rights struggle. The critical question is whether we want our field shifting from one in which professionals and paid staff work with people who have developmental disabilities and their families and friends in an effort to provide care and treatment along with supports, to one in which human service workers take a back seat to what amounts to a civil rights movement.
This is important in the present context because this question is likely to underlie ideological squabbles that may attend the terminology change discussions. In the heat of debate, we are apt to overlook the clear possibilities that exist (a) to fashion a service system that gives the consumers of services more of a voice in the control and management of those services, (b) to validate the long tradition of caring and dedication that constitutes the life work of hundreds of thousands of personnel in this field, and (c) to continue to actively engage the scientific community. We can begin to employ new terms while fashioning a progressive service system, without having endless fights over this or that model; without denigrating those who have chosen to work in the field because they are paid; and without overthrowing the scientific underpinnings of services that, on balance, have served many people with developmental disabilities quite well.
Although I am skeptical of the larger postmodern philosophical enterprise, which has, in part, influenced the progressive vanguard in our field, one interesting tenet of this approach is that language and one's prevailing construction of reality are linked. It is in this way, as I noted earlier, that it does matter what term we choose to replace mental retardation, and that we, in fact, need to choose something.
If we do not choose, or choose poorly (i.e., in a way that seeks only to minimize the differences about people with mental retardation in the vain hope of enhancing group membership in the general population), then we do a disservice to these individuals as well as to those who work with them. Here is an example of how muddled thinking can arise. When I give seminars and workshops to staff members from facilities and agencies, it is my practice to ask them what term they use to describe the people they serve. In one recent workshop the attendees replied that they refer to those they serve as “persons” to avoid labeling them. I then asked how they referred to the people who provided the care and services, and they said they referred to them as “staff.” I found this ironic, but looked up to realize that no one in this little audience seemed to grasp the ironic inconsistency of their own policy (i.e., labeling one group and not the other).
Each of us carries a lot of “labels” (and I mean a lot; mine include father, brother, nephew, taxpayer, voter, human service worker, psychologist, homeowner, customer, client, boss, patient, college graduate, pet owner, poker player, reader, driver, dieter, researcher, and so on). This is not a bad thing; it is a necessary thing. As to all those prattling practitioners of political correctness who misconstrue fiddling with the words used to denote someone (client, consumer, self-advocate, individual, member, person) as making lasting cultural change, let me paraphrase Yogi Berra and say that 20 cents worth of that sort of reform ain't worth a nickel.
This should not be taken to mean that language and terminology are not important; they are vitally important. Rather, it implies that a healthy field of endeavor is one that goes about its business reaping the benefits of its collective energy, with full knowledge that what we call something at any given moment in time is not nearly as important as what we are doing. We should know that the terms we use for things really do not change their essential nature (despite protestations from the constructionists). I can call a “fish” a “pancake” all I want, and still a piece of fish will not taste good at breakfast drenched in melted butter and maple syrup.
Thus, although language may not directly affect the nature of what it describes, we can still do some damage with language. Using the terms retard and moron in negative ways, is simply hurtful. Another example is the evoking of prisons in writing about say, institutions, which does an injustice to both sides of the comparison. One acquaintance of mine in the field, for example, uses (I am convinced unwittingly) a reference to “prisons” at virtually every mention of publicly funded institutions. In addition to being wrong (I do not think this person has set foot in a modern ICF/MR congregate care facility in ages), it demeans our field and this person's place in it. Likewise, despite our desire to “celebrate our diversity,” people who are strikingly different from the mainstream, and have concomitant problems relative to the larger population, will always garner some level of disapprobation. Terms will be needed by those desirous of providing support and assistance. Over time, such terms will acquire negative connotations, and we will, again, be faced with the need to change language to avoid hurting those we want to help. Thus, although we need to advocate for them forever, ceaselessly acquire new knowledge, and never stop being creative in building our service systems, we need only get a suitable name for a generation or two.
A Modest Proposal
Having offered some ideas on separating ideological conflict from the natural course of language change in a field, I offer my “2-cents” on what terminology we actually might choose. Of critical importance is that we strive to keep the basic nature of what we have known as “mental retardation” intact. Actually, I have never thought mental retardation was such a good term for this syndrome because our definition has traditionally included adaptive behavior, and yet there is nothing about adaptive behavior readily accessible in the words mental or retardation. Using intellectual disability or cognitive disability only makes the same mistake again. Learning disability may be a bit closer and could be seen to incorporate adaptive elements, but in America the term is already taken. To adequately take both cognitive as well as adaptive elements into account, we may find that the most appropriate term may necessarily be hyphenated (e.g., cognitive–adaptive delay. Indeed, from a practical perspective, most people who work in the field actually provide services that are directed toward the “adaptive behavior” side of the definition rather than to the somewhat more immutable intellectual side.
Something hyphenated and contracted like “cognitive–adaptive” disability or delay may have the hidden benefit that it may be more immune to corruption into a pejorative. For example, it was an easy step from “mental retardation” to “retard” and, although we should never underestimate the power of our language to adapt, it does seem slightly more difficult to come up with an easy pejorative for this hyphenated term. A hyphenated term such as “cognitive–adaptive disability” may also be beneficial in that typical usage may be made easier. For example, one could speak of aspects of cognitive–adaptive capabilities, skills, abilities, limits, levels, and so forth, in addition to disabilities, with ease. Furthermore, the terminology lends itself to a description of characteristics as opposed to elements of the person. For example, describing someone with cognitive–adaptive disabilities as having “limitations in cognitive–adaptive skills,” is little different than describing this writer as being unable to play ice hockey for the Philadelphia Flyers because he has “limitations in skating skills.” That is, the term refers to specific skills, capabilities, and characteristics, and, therefore, may be even more resistant to the acquisition of negative connotations.
In the end, the strong feelings of “identity” that people in this field feel toward their various positions and beliefs, whatever they are, should be seen by all of us as something good. When there ceases to be a diversity of positions and beliefs in a field as heterogeneous as ours, we will be in danger. Our challenge now is to select new terminology for what we currently know as “mental retardation.” The terminology we adopt needs to be standardized (there are already an alarming number of “terms” being used); it should continue the knowledge-rich tradition that we have built over the last century; it should be functional and clearly related to what we know about the syndrome itself; and, above all, it needs to be seen as respectful by those the term denotes. I, for one, believe we are quite able to do this if we understand the changing nature of language, listen to all the voices involved, and work together toward our common goal.
Author: Kevin K. Walsh, PhD, Director of Quality Management and Research, Developmental Disabilities Health Alliance, Inc., Sourthern New Jersey Office, 223 Gibbsboro Rd., Clementon, NJ 08021-4135. (email@example.com)