Language Matters: From "Mental Retardation" to "Intellectual Disabilities"
Sherrill, Claudine, Palaestra
Language does matter. This fact is well documented by research and practice (e.g., see American Association on Intellectual and Developmental Disabilities, AAIDD, 2010 or use search engines like Google for "Rosa's Law"). This article focuses specifically on change in terminology related to the population of individuals previously diagnosed as having "mental retardation." The issue is NOT whether to change but HOW to do so and WHY. How can PALAESTRA readers most efficiently change thought, speech, and writing behaviors from "mental retardation, MR" to "intellectual disability, ID?" Specifically, what changes should be made in legislation, academic disciplines, professions, school and community practices, and everyday life? Certainly, terminology in all adapted physical activity (APA) journals and textbooks needs immediate change, as well as all materials and practices related to conference presentations and all forms of professional preparation. We need also to join supporters of Rosa's Law (S. 2781) and similar grassroots movements in changing the outdated language of the Individuals with Disabilities Education Act (IDEA) and other legislation. Rosa's Law, a bipartisan bill to replace the terms "mental retardation" and "mentally retarded" with "intellectual disability" and "individual with an intellectual disability" in federal health, education, and labor laws was introduced in the U.S. Senate on November 17, 2009. Its future seems promising!
Who is Likely to Help Us Change Outdated, Stigmatizing Language?
Since the 1950s, when legislation began to move children (then called "mentally deficient") out of institutions and back to their homes, family members have been the primary change agents in the construction of appropriate language. In 1950, parents organized the National Association for Retarded Children (NARC), in 1959 renamed it ARC (Association for Retarded Citizens), and finally in 1992 arrived at the current name, The Arc, with no words attached to the letters. Today the Arc (in addition to its national headquarters) has branches in cities, counties, and states, where members strongly advocate for a society in which all persons share equal rights and access and none are burdened by labels. For me personally in the 1960s, ARC members (including self-advocates) were the most influential shapers of my knowledge, beliefs, and practices. They were the driving force in my initiating APA practica at Texas Woman's University, in involving myself and university students in Special Olympics, and in my efforts to convince school administrators to employ APA personnel throughout Texas. Through caring relationships with individual members of The Arc, we can establish networks and enhance success of projects of mutual interest.
Space permits only brief coverage of leadership of specific families (e.g., the legacy of President John E Kennedy (JFK) and siblings; Rosa and her family in Rosa's Law, 2010). JFK and siblings were made aware of the challenges of ID by their sister Rose who was diagnosed as having MR and subsequently placed in a residential facility. In 1961, JFK used the most up-to-date terminology when he appointed the first President's Panel on Mental Retardation to assess and improve societal conditions. Now named the President's Committee for People with Intellectual Disabilities (PCPID), it meets up to four times a year and advises the President on the adequacy of current practices and programs, www.acf.hhs.gov/programs/ pcpid. PCPID, now paralleled by similar bodies at the state and local levels, should be called on to help us advocate for language change, as well as support for APA in facilitating happy, healthy lifestyles for all. Since the 1960s, JFK's siblings have provided leadership in all kinds of federal legislation related to ID services, as well as to our own university-based APA professional preparation programs. Eunice Kennedy Shriver founded Special Olympics Inc. (SOI) in 1968, avoiding mention of MR in its title, and providing an ever-growing organizational structure that changes the lives of persons with ID, their families, those who coach them, and communities-at-large. …