WEST PALM BEACH, Fla. — All of a sudden, Eleanor Trachtenberg isn’t sure what she is supposed to call all those people she has worked so long and hard to help.”Why are people offended?” she wonders, and a cloud of hurt feelings and anger darkens her face. “It’s like saying a dirty word, that’s all I can tell you.”
The dirty word Mrs. Trachtenberg has been saying is “retarded,” and at this month’s meeting of the organization she founded 25 years ago, the word came up again, and the question, “Should we change our name?”
“I told them point-blank I was 100 percent against a change,” Mrs. Trachtenberg says. “I said I would go along with the majority, but I just feel so vehement about this.”
Her voice suddenly takes on a hint of defiance. “The good work of Friends Of Retarded speaks for itself.”
On that point, everyone agrees. Friends Of Retarded indeed have been friends but to whom?
Consult a dictionary, and the definition seems clear:
“Retarded: Slow or limited in mental, physical or emotional development.”
The debate is not so much about what people say as what others hear. It’s not only about what a word means, but also what it implies.
Many local social service professionals favor the term “developmentally disabled.”
“We like to think of our folks, all of whom are developmentally disabled, as persons first,” says Bill Ferris, executive director of the Habilitation Center of Boca Raton, Fla., which serves about 200 adults. “Therefore, we don’t refer to them as disabled persons, but rather as persons with disabilities.”
Charlotte Weinpress, whose daughter, Sharon, has Down syndrome, worries that all the “politically correct” alternatives are so vague they threaten to blur the important distinction between mental retardation and mental illness, a point advocates for the retarded have struggled for years to impress on the public.
“Mentally handicapped?” Mrs. Weinpress asks. “What do you call a person who’s schizophrenic? Isn’t that a mental handicap, too? I don’t think we should change our name, because this is what we do. We’re not helping people with muscular dystrophy here. We’re not helping the blind. We help the retarded, and I’m not offended. My daughter is what she is.”
The debate also shows how much words can change in a quarter-century.
In 1976, Mrs. Trachtenberg and a friend, Anne Swerling, who has since died, organized a luncheon at the Fountains Golf & Tennis Club in suburban Lake Worth, Fla. The speaker was Rose Kennedy, mother of both a murdered president and a retarded daughter, and the luncheon raised $12,000.
Friends Of Retarded was born. Since then, it has held an annual luncheon.
Today, the group claims about 450 members, down from a peak of 600 in the 1980s. Some have retarded children. Some, like Mrs. Trachtenberg, are simply devoted volunteers. They have collected pennies outside supermarkets. They have bought appliances for group homes, paid for repairs and made donations to area agencies.
In that time, they have raised about $600,000, and in 1985 the Association for Retarded Citizens of Palm Beach County (now known as the Arc) named one of its group homes the Eleanor Trachtenberg Res-idence in gratitude for her service.
Mrs. Trachtenberg turned 86 in April, and again she celebrated by hosting a luncheon for her namesake’s residents, in the clubhouse at the Fountains, where she still lives.
Then the contentious issue arose.
Earlier this year, board member Evelyn Bluestein was selling tickets for the annual Friends Of Retarded luncheon to her neighbors at Wycliffe Golf & Country Club.
“Why do you call it that?” a neighbor snapped. “That’s awful.” For whatever reason, she didn’t buy a ticket.
Then, on Oct. 26, the group’s president, Frances Gross, attended the open-house dedication of the Arc’s new Courim Center in West Palm Beach.
“And who are you with?” a stranger asked.
“I said ‘Friends Of Retarded,’” Mrs. Gross recalls, “and she pointed at me and said, ‘We don’t want to be called retarded.’ She was the mother of a child, and she was vehement. I just turned and walked away.”
A formal vote wasn’t taken, but at the most recent meeting the group’s 18 board members seemed to be evenly divided.
“I’d change it in a minute,” Mrs. Bluestein says. “It just goes against my grain, but it’s causing so much dissension and I don’t want that to happen, so let it stay.”
Mrs. Gross, who has been involved with the group since 1980, initially favored a name change but softened her position after learning it might require a lawyer’s fee to retain the group’s nonprofit status.
“If people feel it has a bad connotation, it would be a good time to change it,” she says, “but it doesn’t make a bit of difference to me. I thought it might help us sell tickets, but we can’t afford to go through the extra expenses at this time.”
Sol Tenzer, a member whose daughter, Wendy, lives at the Eleanor Trachtenberg Res-idence, opposes a change.
“It doesn’t offend me,” he says. “A lot of times I use that word to describe Wendy. When I used to solicit money, I wrote down Friends Of Retarded. Now I just put down FOR, and if they ask I tell them.”
At Alpert Jewish Family & Children’s Service, soon to open a third group home, Executive Director Neil Newstein also favors “developmentally disabled.”
“People of that generation said ‘retarded,’ and it’s hard to change,” he acknowledges. “Is it politically correct? Absolutely not. But am I willing to give a break to people from a previous generation using an anachronistic term? Sure. They’re trying to do the right thing, but it is incorrect.”
On the other hand, some point out, cerebral palsy is also a developmental disability, making the term so broad it lacks the specificity of “retarded.”
When the Friends Of Retarded hold a luncheon meeting at the Palm Beach Habilitation Center, Executive Director Tina Phillips posts only the acronym “FOR” on the daily activities board. She is as passionate in her praise for the organization as she is candid in her disapproval of the name.
“It’s an important organization, but they’re not going to attract younger parents and younger people by carrying around old baggage,” she says. “It’s old baggage and insensitive baggage.”
At the center’s Thanksgiving luncheon, Mrs. Phillips sketched a suggestion on a paper napkin: “FOR People With Disabilities (formerly Friends Of Retarded).”
“I wish they’d change their name and never stop doing what they’re doing,” Mrs. Phillips says, “because their love is so powerful. The minute they walk in the room, it’s a powerful feeling.”
As outspoken in his defense of “retarded” as Mrs. Phillips in her opposition is Fred Eisinger, executive director of Seagull Industries for the Disabled.
“My personal opinion is that it’s not negative,” Mr. Eisinger says. “It’s a word people understand, and to use another word instead is to camouflage who they are, as if it’s something to be ashamed of.”
Certainly no group has wrestled with the question longer than the Arc, a national organization based in Silver Spring, with independent chapters throughout the country.
In 1953, the group was founded as the National Association for Retarded Children.
In 1973, it became the National Association for Retarded Citizens.
In 1981, it became Association for Retarded Citizens of the United States and adopted a simple logo that said “ARC.”
Since 1992, it has been simply the Arc of the United States.
“No other term means the same thing,” says Steve Eidelman, the Arc’s national director. “And there is no other good term, so no one knows what to do. We just try to minimize the use.”