Controversy over dropping the R-word from state agency's name in NY

From The NY Times:

ALBANY, N.Y. -- For the second time in a year, New York legislators are considering changing the name of one of the only state agencies in the country with “retardation” still in its title.

The term, once viewed as clinical and neutral, is now considered so demeaning that leading advocacy groups in the state have promoted a campaign against it and have dropped the word from their own titles.

And yet, the letterhead of New York’s chief caretaking agency still reads “Office of Mental Retardation and Developmental Disabilities.” Of the dozens of states that once used “retardation” in an agency or department title, only New York and Rhode Island still do.

Given the activism against the term here, it was a surprise last year when a proposal by Gov. David A. Paterson to change the office’s name to the “Developmental Disabilities Services Office” that had passed the State Senate was pulled before reaching the Assembly floor. And the protesters who blocked it were some of the very people who have worked hardest to secure the rights of those labeled “retarded.”

“There was an affinity for the name ‘O.M.R.D.D.’ by some advocates,” said Assemblyman Peter M. Rivera, who was then the chairman of the Mental Health Committee. “They felt there was a value to clarifying ‘retardation.’ ‘Developmental disabilities’ was not clarifying who you are talking about.”

Opponents of the name-change bill acknowledge that it was unsettling to block the elimination of language they disdained. But Mark Brandt, executive director of Nysarc, which once stood for New York State Association for Retarded Children, said that three generations of advocates who built the system that the state office governs were concerned that they had not been involved in the discussion to change the name.

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.”

When Mrs. Taylor’s son was born in the 1960s, the system did not always distinguish between cognitive disability and mental illness. Both populations lived by the thousands in overcrowded so-called state schools supervised by psychiatrists. Families who kept their children home invented their own schools and services. A court ruling in 1975 eventually led to the closing of the abuse-ridden Willowbrook State School on Staten Island, starting the move to vacate institutions. Federal civil rights legislation followed.

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.

“It took a Herculean effort to convince people at the state level that that is what they had to do,” said Henrietta Messier, 85, the mother of a daughter with Down syndrome, who in 1950 helped establish the Capital Region ARC, a chapter of the state ARC. “Mentally retarded meant our children weren’t being lumped together with offices for mental health or alcoholism.”

The office remains an unusual bit of state bureaucracy that works in partnership with its stakeholders. The system they oversee is the largest, best-financed and among the most innovative in the country.

Slowly, its goal has shifted from protecting people to recognizing their contributions in the workplace and other arenas. Many people see “retarded” as conflicting with the drive to emphasize strengths.

“It really is upsetting to me because it’s not just a word anymore; it’s identifying who I am,” said David Liscomb, 63, a consultant and president of the Self-Advocacy Association of New York State, who has developmental disabilities. “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.”

States that once used “retardation” in agency names were dropping it by the 1990s, and efforts accelerated in recent years. (Like New York, Rhode Island has introduced legislation to do so.)

Still, it caught advocates off guard last year when the New York Senate, at the request of Mr. Paterson, moved to rename the office.

The agency has worked since then to assuage fears that a new name would hinder services. “Our name may be changing, but who we are and what we do stays the same,” it said in a written statement.

In March of this year, the state agency’s commissioner, Diana Jones Ritter, convened a group of advocates in Albany, who agreed to yet another name: the Office for Persons with Developmental Disabilities.

The new legislation, which was approved by mental health committees in both houses last week, goes further than last year’s, striking “retarded” from state buildings and legal language.

It will now be considered by the finance committees. While some analysts say the change could cost hundreds of thousands of dollars, the office maintains there will be no expense because the new name can be phased in.

Some advocates say their hesitation to change the name is giving way. “Many years ago people weren’t speaking for themselves and now they are,” Mrs. Messier said. “We’ve worked very hard to give them that right, and they are saying they don’t like the denigrating language. To oppose this would be like clipping their wings.”