In Romeo and Juliet, Shakespeare asked, “What's in a name?” That is an apt question for the American Association on Mental Retardation (AAMR) and a suitable introduction to our article. We begin by addressing three major objections to a change in the name of AAMR and in the terminology now titled mental retardation. (We acknowledge that these issues are related but not identical, as we point out later.) These objections are as follows:
Stigma will attach, regardless of the terminology that describes an impairing condition; simply changing the term mental retardation fails to address stigma.
Voice of the Retarded (advocates for institutional placement under the theory of “choice”) will have greater legislative influence for “the retarded” and for all the wrong policies if other organizations (such as AAMR and The Arc) do not have mental retardation in their name or in their tagline or as the descriptor for their constituents.
People with mental retardation may lose their rights (e.g., Americans With Disabilities Act [ADA]), entitlements (e.g., Medicaid, Social Security Disability Insurance, and Supplemental Security Income), and supports (e.g., Individuals With Disabilities Education Act (IDEA) and Vocational Rehabilitation) if legislators do not have an easily identifiable beneficiary constituency or if legislators use a terminology change to narrow eligibility for supports.
We conclude by proposing a long-term agenda to preserve these and other rights, entitlements, and supports to enhance the lives of individuals with mental retardation and their families and to embed any change of terminology and Association name within the larger agenda.
The Turnbulls' Perspective
Let us first consider the objections related to stigma and the Voice of the Retarded. (We join the other authors in addressing the policy agenda in a later discussion.)
Some people believe that regardless of what term is used, stigma will be associated with it and that a change will not end the iterative stigmatization process. We, however, believe that mental retardation has become especially pejorative to many individuals with mental retardation and their families. The term itself is not the primary problem; in our view, the derivatives of the term—retard, retardate, EMR, TMR, etc.—are the basic expressions of stigma.
To try to counterbalance stigma is worthy, but we must acknowledge that, if history repeats itself, any term we endorse will be turned against people with cognitive impairments. As a professional community, we are obligated to rename our Association by a less pejorative term and to use less pejorative terminology. We must mitigate the damage and battle prejudice and stigma wherever they exist and whatever their source. Even more, we must constantly advocate to maintain, protect, and enlarge the rights, entitlements, and services–supports that now exist.
Just as one of us led the effort to jettison deficiency when he was president of AAMR, so both of us (including the one who will be president in 2003–2004) want to abandon retardation as part of the name. Whatever terminology and name are ultimately adopted, and assuming that there would be a different term than mental retardation, the Terminology and Classification Manual (Luckasson et al., 1992) must be amended to reflect the fact that any new term refers to and means the same as the condition now called “mental retardation.” Given that a new edition of the Manual will be published in 2002, and given that a terminology and Association name change may not be adopted by then, it seems entirely proper for the next edition of the Manual to acknowledge that there is a debate about the Association's name and, more fundamentally, about the terminology and to pledge to conform the Manual to the term and name if and when they change. There has to be consistency between the name of the organization and the terminology used in the organization's Manual; likewise, the constituency served by the professionals in the organization must still be identified as those individuals who have what is now known as mental retardation.
With respect to the battle against prejudice and stigma, it is essential to engage in a massive campaign to both include all people in communities and educate those who do not have a lot of contact with people who have mental retardation; absent such a campaign, any term we chose will become pejorative, too.
The Consortium on Language, Image, and Public Information has recommended a comprehensive public relations campaign to reverse the stigmatizing aspects of mental retardation. Fine, but it seems more desirable to agree on a new name for our Association and term for the impairment and to have a public relations campaign to ensure that the new term is fully understood by all stakeholders and that it is associated with the ideals of and policy and programs that advance the nation's disability policy goals. Note that it is possible to have a name for the Association that is not identical to the terminology; The Arc does this.
Credibility of Voice of the Retarded
The argument is that we should retain mental retardation in the name of AAMR so that Voice of the Retarded would not be the only organization asking for legislative support for citizens with mental retardation. Moreover, the argument goes, if we do not use the term mental retardation, Congress will assume that Voice of the Retarded is these citizens' only advocacy and parent organization. Others note that Special Olympics International may not be amenable to changing the term either and that most of the positive national press about people with mental retardation is identified with Special Olympics.
We do not believe that a terminology and name change necessarily would strengthen Voice of the Retarded. On the contrary, a name change could isolate Voice of the Retarded as being obsolete on rights, entitlements, and services and supports. Voice of the Retarded's impact would be comparable to the impact of organizations representing people of different races, ethnicities, genders, and sexual orientations if those organizations used the most pejorative of terms associated with those traits and choices.
To isolate Voice of the Retarded may be to limit it, especially if our agenda (described later) is adopted. The paradox is that, even though Voice of the Retarded is now isolated from the mainstream progressive associations in the field of mental retardation, it has significant influence in some policymaking circles. A name change alone will not diminish Voice of the Retarded's influence, but a name change coupled with other action might. Ultimately, it is not a matter of Voice of the Retarded and its influence, however important that is; it is, instead, a matter of who gets what and why and who influences that decision.
That is why it is so important for all parties (legislators, professionals, parents and other family members, people with mental retardation, and researchers and trainers) to be consulted before any terminology and name change are proposed for adoption. We hope that they would want to buy into whatever term finally emerges and to recognize that the name of the organization follows the term that the field uses. The widespread “buy-in” (with marketing efforts made before the change) may well assure that Voice of the Retarded will not emerge as the voice of people who have what we now call “mental retardation.”
Likewise, premarketing may well assure that the professionals, policymakers, and others who now shape programs and policies will understand that the term is changing but that the people with the condition are not and that the programs and policies should not be changed in any way adverse to the needs of those people.
Recently, when we met with parents who have young children with mental retardation, the parents described in detail their child's specific syndrome. Notably, one parent tearfully apologized because her child did not have a specific syndrome. Equally notable, not a single one of these parents used the term mental retardation. A sizable number of parents in the generation behind us—those who now have young children—do not identify with the term mental retardation or any of the organizations that use this term.
The reason is simple enough: The field of early intervention and early childhood education uses the term developmental delay. Only when the children with such a delay enter the special education system or, later still, the adult service-delivery system do they acquire the label of “mental retardation.”
Whatever the reason, the point remains that the larger field of mental retardation is balkanizing. Many parents and professionals are affiliating with the “syndrome” groups and not finding common ground with the more generic organizations that cover the broad spectrum of mental retardation and that represent the largest number of people with mental retardation, most of whom have no syndrome-based label. Obviously, there are advantages for people to identify with others whom they perceive to be as closely aligned to them as possible, but we worry about the core of the field—the common ground that we can all find when we see our similarities rather than our differences and when we write around a generic term to advocate for rights, entitlements, and services that benefit all people and families affected by the same basic condition.
A common sense approach to the balkanization problem is to create an umbrella organization—an administrative services organization—that would include all of the mental-retardation-related groups, that would advance their common agendas, that would be the forum for discussions about finding still more common grounds and agendas, and that would tolerate (much as the Consortium for Citizens With Disabilities does) separate issue advocacy when that is necessary or appropriate. The administrative services organization also could provide day-to-day background management, financial help, and technical/computer support or other services as desirable.
Perspective From Paul Marchand
Any initiative to change the terminology and organizations' names opens up the doors for legislative, programmatic, and even judicial mischief. Congress and state legislators, federal and state–local executive agencies, and federal and state courts need no new reasons to try to roll-back so many hard-won policy gains. Like it or not, the term mental retardation is relatively well understood by the general public and especially by our “friends” in the Congress. Unfortunately, we have far fewer real friends in Congress now than in the past. As a result, during a time of growing pressure to cut social programs, fewer Senate and House leaders will stand to preserve the rights, entitlements, and supports that now exist for people with mental retardation. There will be pressure enough to cut the budgets of these programs even under the best of conditions. If our profile is lowered on Capitol Hill through changes in terminology and names, we will invite those who would like to erode or limit our progress to go on the offensive. It would be foolish to take such a risk. Any proposed change should first be thoroughly vetted with policymakers and legislators before being proposed for adoption.
Indeed, the fundamental issue is not even the consequences of a change (in terminology or name) in policymaking forums. The basic issue, which constitutes a very high hurdle, is whether the nation will adopt a needs-based approach to rights, entitlements, and services and supports that no longer depends on labels or diagnoses.
Citizens with mental retardation do not constitute a homogeneous population. They have a common impairment, but the extent and diversity of their needs vary greatly, and so do their claims for policy responses to their needs. That is the message of the 1992 AAMR classification and terminology approach; and it is the message that has yet to be cut into the stone of public policy. The challenges, then, are to succeed on two grounds: first, and as a necessary prerequisite to the second, to articulate and succeed in advancing a needs-based approach in policy, and, second, to mesh any change in terminology and names within that advocacy and policy reform framework. Any change should first be part of a carefully coordinated, well-conceived, broad-based, long-term effort to enhance the services and supports for individuals with this condition. Only under these conditions should we take the risks that are inherently involved with a terminology change at this time in our country's history.
Perspective From Steve Eidelman
People with mental retardation may be the last group of the “worthy poor” in this post welfare-reform era. In Colorado, where they hate the term, the local county Board of Douglas-Arapahoe counties is campaigning for a tax levy increase for services. They are using the term mental retardation because in focus groups people identified strongly with this group of individuals as being “deserving.” Rights are wonderful. Rights without supports to realize them are not rights at all.
I have never been so conflicted about any change in our field. Usually, I can spend time discussing the pros and cons of an issue and then decide what I think the right thing is for me to do, given my role. On this issue of a change of terminology, I cannot find that right thing. Like most members of AAMR, I want to do what our constituents want. Changing the term will make many people happy. That happiness will quickly fade when the new term is used as a pejorative. Without a long-term effort to include everyone and to educate those with negative or neutral attitudes toward our constituents, a change in terminology will become the new pejorative very quickly.
Perspective From Steve Warren
There are risks in anything we do—some obvious, some less so. Holding onto the status quo may have some short-term advantages, but in the long-term it leaves us on increasingly shaky ground with self-advocates, parents, and many professionals within the field. Can we afford to fight among ourselves? I think not. However, change that is not well-orchestrated and carefully thought out could have a range of unintended and harmful consequences.
After grappling with this issue for the past 3 years as a member of the AAMR leadership and as a representative to the Consortium on Language, Image, and Public Education, I am convinced that we (the field in general, not just AAMR) need to distance ourselves from the term mental retardation. To mitigate the inherent risks in this action, I believe a change in terminology and in organizations' names must be part of a larger effort to reinvigorate the field and move aggressively forward on a host of issues. As part of such an effort, a change in name and terminology could have many advantages. As an isolated act, the risks are too great.
Perspective of All Authors
For a long time we (all the authors of this paper) have had a growing awareness that the field of mental retardation needs a “jump start” for a new century. Beginning in the early 1960s, President Kennedy launched a “revolution in mental retardation” by envisioning bold goals in the areas of science, law, professional development, families, and service delivery. Tremendous progress has been made, but the revolutionary spirit has dissipated, a counterattack is underway, and bold goals for the next several decades need to be articulated and advanced. A state-of-art agenda should be launched as soon as possible, using the excellent conceptualizations of AAMR's Terminology and Classification Committee to operationalize a needs-based model for rights, entitlements, and services and for accountability in the areas of law and policy, service, teaching, and research.
With all due respect to the thoughtful work of the Consortium on Language, Image, and Public Information and to its decision to separate the change of the names of organizations from the concepts regarding terminology and classification, perhaps it is propitious to rethink that separation and instead to consider a “clean sweep.” There is a solid base of conceptualization for the condition mental retardation, as evidenced in Mental Retardation: Definition, Classification, and Systems of Supports (1992). One problem lies not in the conceptualization but in state and local application. In a recent study, Denning, Chamberlain, and Polloway (2000) showed that only about 6% of all states use the actual or even adapted 1992 definition. The same can be said for the term developmental disability. Different states use different combinations of new and old definitions with varying AAMR classifications from different editions thrown in for good measure. The Centers on Disease Control use a different definition than does the Administration on Developmental Disabilities. Schools seem to create categories out of whole cloth. None of those facts should deter us from doing what must be done. Just what must be done?
First, we must acknowledge the brilliance of the 1992 definition of mental retardation (that will be even stronger in the 2002 version) and the concept of intensity of supports. Here, too, local understanding and application are limited. It is a wonderful conceptual framework but less so an operational one because many policy leaders and program administrators want a single IQ number as the dispositive demarcation boundary for deciding who gets what. The intensity-of-support concept holds the environment responsible for providing needed supports. We believe that the 2002 conceptualization will provide a foundation for us to operationalize an intensity of supports model for determining entitlements.
Second, we must advance and secure acceptance of a needs-based, label-free public policy. For far too long, who gets what has been determined by who calls whom by what term and who defines the beneficiaries by what cut-off score. Given the fact that many people with mental retardation have co-occurring disabilities and that they and their families also are challenged by reason of socioeconomic, racial/ethnic, and cultural–familial conditions, it seems reasonable, indeed necessary, to move toward needs-based policy within the self-determined services period. Until, however, needs-based policy is embedded and the need-level is not placed at a desperation level, changing the terminology and organizations' names seems premature.
Third, we suggest merging the terminology and name-change initiative with a multi-year agenda that entails the following action steps:
Hold focus groups with key Congressional staff members to gain their perspectives on the best strategies for acquiring need-based services for our protégées. Embed in those discussions an education about terms, names, and which organizations are progressive and which are not. Wait to start until after mid-term elections to know who is chairing which committees, especially in the House of Representatives.
Create an accountability system for policy leaders, program administrators, and other professionals responsible for providing supports based on need. Establish a rigorous method for measuring benchmarks-to-progress at periodic intervals and publish a national report card on supports for individuals with mental retardation and their families. Find one or more phrases to capture, in layman's terms, the support/accountability approach. These phrases need to be understood by the average citizen.
Given the national report card, develop short-term and long-term agenda for law and policy, research, professional development, family support, and technical assistance reform; tie the agenda to enhancing outcomes through needs-based supports.
Recognize that this agenda requires the support of our allies in the Congress and in the administration and in state legislative and executive agencies, too, and that the support may be problematic nowadays but, nevertheless, must be solicited vigorously.
Recognize that the change of the Association's name and, more fundamentally, the change of terminology requires a multi-year effort to reeducate policymakers (e.g., Congress, executive agencies such as the Office of Special Education and Rehabilitation Services, and independent entities such as the Social Security Administration), professional colleagues (e.g., American Psychological Association, American Psychiatric Association, and Council for Exceptional Children), consumers (the parents of younger and older people with mental retardation and the people themselves), and the public.
Retain the Consortium's approach of combating stigma by focusing on the individual gifts, positive contributions, strengths, and inherent worthiness of each person with the impairment. But, rather than limiting ourselves to conducting a national public relations campaign on minimizing stigma associated with the term mental retardation, take the additional step of trying to transform the national public relations campaign into one that promotes full citizenship for individuals with mental retardation. That is a double-barreled approach: address stigma and promote full citizenship. Key aspects of this campaign would be (a) the intensity of supports as based on needs and (b) holding environments responsible to provide the supports and enhance those gifts, etc. Explain the name change in the context of these concepts and introduce the notion that every single citizen can contribute to personally satisfying outcomes for individuals with mental retardation and their families.
Learn from the efforts of other countries that have changed their terminology and preserved rights to federal and local entitlements and services. Although their system of determining eligibility is different than ours, study what they are doing, garner what is applicable, and put together the “nuggets” of best practices that can be adapted to the American system. Bear in mind that our counterparts from other countries refer to themselves as “Civil Society” organizations, relying on the work of the Soros Foundation. It is a respectful term, and one that carries high status because a civil society ensures support for its vulnerable numbers. The AAMR and The Arc are referred to as “special interest groups,” a pejorative term.
Make no change in the name of our organization until (a) the name change is made concurrently with the terminology we use to describe what is now known as mental retardation and (b) the Terminology and Classification Manual is amended throughout to define and explain the condition to be identical to the condition we now call mental retardation.
What's in a Name? What Should We Do? Change Our Name? Change our Terminology?
Yes, we should change the terminology and the Association's name, but we should not do so without also attending to the issues of terminology, the policies based on supports, and the agenda that we have previously described, particularly the accountability agenda. There is no simple solution to the issue of terminology and Association name change. That is so because there is no term now available in this country that we can use that readily identifies with the condition of mental retardation. Accordingly, we are obliged to (a) use a term that accurately describes the condition, that does not disconnect with the Manual's approach to defining the condition, that is understandable to the general public and policymakers, and that does not carry the stigma that the present term carries; (b) conduct a public relations campaign to explain the term and prevent stigma from attaching to those who are called by that term; and (c) wage a fierce war for needs-based supports and to preserve all of the rights, entitlements, and services and supports now available. What's in a name? A great deal more than Shakespeare allowed or than Romeo and Juliet themselves understood.
NOTE: Each author's contribution is set out under that person's name; that is an individual voice not necessarily attributable to any other author. However, the introduction and the section entitled “Perspective of All Authors” incorporates the views of all of us; it is the collective, not the individual, voice. Each author is a member of AAMR. Each writes in his or her individual capacity and not as a member of the staff or officer or director of any organization in the field of mental retardation
Authors: Rud Turnbull, LLM, and Ann Turnbull, EdD, Beach Center, University of Kansas, 3111 Haworth Hall, Lawrence, KS 66045–0001. Steve Warren, PhD, University of Kansas-Schiefelbusch Institute, 1052 Dole Human Development Center, Lawrence, KS 66045–2930. Steven M. Eidelman, MSW, The Arc, 1010 Wayne Ave. #650, Silver Spring, MD 20910. Paul Marchand, BA, Assistant Executive Director for Policy and Advocacy, The Arc of the United States, 1730 K Street, NW, Suite 1212, Washington, DC 2006.