Erasing a Hurtful Label From the Books
November 22, 2010
http://online.wsj.com/home-page
Article written by Clare Ansberry:
Cliff Poetz of Minnesota, now 61 years old, went to Washington 40 years ago and told lawmakers they shouldn't use the term "mentally retarded" to describe him and others with intellectual disabilities.
"It meant we were dumb and stupid," said Mr. Poetz, who is neither. Born with cerebral palsy and other developmental disabilities, he spoke out about what it was like living in institutions and was invited by the late Sen. Edward Kennedy to testify at a hearing on the Developmental Disabilities Assistance and Bill of Rights Act. He now works at the University of Minnesota.
His plea, and that of thousands of other early activists with disabilities, remained largely unheeded until recent years when grass-roots and national groups representing those with disabilities, including the Special Olympics, created a campaign to "Spread the Word to End the Word." They said "retarded" had become a mainstream putdown of anyone who was considered incompetent or acting unacceptably.
The movement gained an indirect boost earlier this year when it was disclosed that former White House Chief of Staff Rahm Emanuel told a group of liberal activists that it was "retarded" for them to run ads attacking some Democrats. Mr. Emanuel later met with disabilities advocates and apologized.
"It's used a million times a day by schoolchildren and adults to denigrate. It's a gross insult to people with intellectual disabilities and their families," said Paul Marchand of the Arc, a national advocacy group for people with intellectual and developmental disabilities.
For decades, "mentally retarded," which came into popular use in the 1950s, was considered medically accurate and a huge improvement over earlier labels of mentally deficient, imbecile and moron.
But Charlie Lakin, who studies disability-related issues at the University of Minnesota, said the term became prejudicial, implying that a person was incompetent.
Now, states have begun removing "mentally retarded" from departments and regulations, the latest being New York and Rhode Island. Last month, Congress stripped the words "mentally retarded" from most federal, health, education and labor statutes, and replaced it with an "individual with an intellectual disability."
The swap doesn't affect services, benefits or eligibility. But for those with such disabilities, and their families, it is a significant breakthrough. Many had to be declared or labeled as "mentally retarded," which they found hurtful, in order to receive services, because that was the legal term.
"This doesn't solve prejudice or discrimination, but it helps that the government isn't reinforcing it," Mr. Lakin said. Other countries dropped the term years ago, he added.
Since the 1950s, special-education teachers have classified children as "trainable mentally retarded" and "educable mentally retarded." The single-largest advocacy group was called the Association for Retarded Citizens until 1992. At that point, the name was changed to the Arc, but only after hot debate between those uncomfortable with the word "retarded" and those afraid of losing the group's name recognition.
Growing up, Jeff West of Portland, Ore., described his older brother Ricky as mentally retarded. Even as a small child, Mr. West knew the label set Ricky apart. "It meant he was different, that he couldn't do what we could do," Mr. West said. Doctors encouraged his parents to send Ricky to an institution, which they reluctantly did. Mr. West tracked his brother down 50 years later and helped reunite the family.
"Today I describe Ricky as my brother," he said. "I don't want any label to be used."
The problem with a label, particularly "mentally retarded," is that those who hear it assume they know everything about that person, said Cecilia Belasco, whose youngest brother, Mike, 52, and youngest son, Eddie, 23, were both born with intellectual disabilities.
"It becomes the entire narrative for that person," Ms. Belasco said. "It implies someone will forever be a child, that growth has stopped and that they have no dreams or possibilities."
When Ms. Belasco talks about Eddie, she mentions that he graduated from the local Catholic high school, has a job, plays the drums and works out with a personal trainer. She shows pictures of him with his girlfriend, Loren, and on his 21st birthday, at a bar with his older brother and two sisters, toasting with Apple Sour shots. Goal-oriented, Eddie plans to get engaged at Christmas and married in 2012, and is saving for an apartment.
A few weeks ago, in a ceremony in the East Room of the White House, President Barack Obama signed legislation called Rosa's Law, which removes the term "mentally retarded" from most federal laws.
It was named after nine-year-old Rosa Marcellino of Maryland, who was coded as "mentally retarded" on the state's individualized education forms. The words struck her mother, Nina, as harsh and archaic, and offended Rosa's older siblings, who circulated a petition at their grade school. "We the kids at Central Elementary think it is unfair to call kids in special education 'mentally retarded,' " the petition read.
Nina Marcellino, who appealed to state lawmakers to change Maryland's rules and sponsor the federal legislation, takes little credit for the change, saying her family came in at the end of a movement started by people like Mr. Poetz.
"All we did was get on the bandwagon and push things along," she said.
The concern, by some, is that eventually new terms will become a new pejorative. " 'Intellectual disabilities' carries less baggage with it at this moment," said Douglas Biklen, dean of the School of Special Education at Syracuse University. "Twenty years from now, it can become the new epithet."
Rosa's 15-year-old brother, Nick, doesn't think it will. Maybe school kids will taunt others, he said, by saying " 'What are you, intellectually disabled?' That's pretty hard to say, so I doubt it."
