Legislators in New York are considering changing the name of a state agency currently called the Office of Mental Retardation and Developmental Disabilities. While many states once used the word ‘retardation’ for such an agency, it’s currently only New York and Rhode Island that still do so. This is, the June 7th New York Times reports, the second time New York legislators are considering the name change; last year, Gov. David A. Paterson had proposed to change the office’s name to the ‘Developmental Disabilities Services Office.’ As the NYT points out, some of the very people who have worked hardest to secure the rights of those labeled “retarded”‘ — including parents of developmentally disabled adults, some of whom are now middle-aged and older—are those who are blocking the proposal.
Living at a time when there’s a well-publicized campaign afoot to end the use of the ‘r-word,’ any attempts to keep a term such as ‘mental retardation’ in play may seem puzzling, if not downright irrational. The NYT article presents a brief history of terms used to describe individuals with developmental disabilities that suggests how, as knowledge and cultural attitudes about those who are ‘different’ change, so does—so must—our language. But change is easier called for than made.
The debate over erasing the term “retarded” illustrates the issues that can arise as language shifts. Terminology was important to the parents who fought on behalf of children who until the 1950s were labeled “moron” or “imbecile.” For them, the initial popularizing of the term “mentally retarded” was a victory. A once-hidden population now had a name and a state agency.
What would happen if the familiar labels changed again? “I’d worry about a new, younger congressman or legislator coming in who we’d have to re-educate,” said Joan Taylor, 84, who 40 years ago began advocating for her son, now deceased, whom she describes as “profoundly retarded.” “I don’t think it would be as effective to use the word ‘developmental disabilities.’ They wouldn’t know who we mean. I think we should call people what they are.”
But ‘what’ term to ‘call people’ has changed. As self-advocate, 63-year-old David Liscomb a consultant and president of the Self-Advocacy Association of New York State, says, ‘“It really is upsetting to me because it’s not just a word anymore; it’s identifying who I am…….I want to be identified as a person, and I don’t want the label on buildings and I don’t want the state calling me that.”
Things were indeed different when Liscomb and Mrs. Taylor’s son (who was born in the 1960s) were born. At that time, no distinction was made between those with a ‘cognitive disability’ and those with ‘mental illness’ and individuals with both diagnoses ‘lived by the thousands in overcrowded so-called state schools supervised by psychiatrists.’ Families who chose not to institutionalize their children had to provide for their own education and services. Consequently,
For New York’s pioneering parents, the crowning achievement was the creation in 1977 of the Office of Mental Retardation and Developmental Disabilities, which removed care of their children from the Department of Mental Hygiene. The office’s first commissioner, Thomas Coughlin, was the parent of a child with a developmental disability.
New York—and Rhode Island—should change the name of the Office of Mental Retardation and Developmental Disabilities. The meanings of words aren’t set in stone, but change as people use them, and use them in new and different ways. Someday we may find ‘developmental disability’ a term we’d rather cast aside in the same dustbin as ‘feeble-minded,’ ‘cretin,’ and, yes, ‘retard.’
Photo by the author.