Fairfax woman fights to eradicate 'R word': mental retardation

Nancy Mercer, left, and Jill Egle serve as co-executive directors of the Arc of Northern Virginia.
Nancy Mercer, left, and Jill Egle serve as co-executive directors of the Arc of Northern Virginia. (Arc Of Northern Virginia)
By Kali Schumitz
Fairfax County Times
Thursday, October 14, 2010

Even though the organization's mission is to assist and advocate for people with intellectual and developmental disabilities, some in the Arc of Northern Virginia were taken aback when Executive Director Nancy Mercer wanted to bring on Jill Egle as co-executive director.

"They weren't used to thinking about someone with an intellectual disability in a leadership role," Mercer said. But she recognized leadership abilities in Egle, who originally joined the Arc staff as an administrative assistant.

"It's amazing what this nonprofit has done for me," Egle said of the Arc, while dabbing tears away.

Egle continuously strives to exceed others' expectations of her abilities. With Mercer as a mentor, she goes to meetings, lobbies state legislators and helps raise money for the nonprofit.

"She raised $50,000 in her first year," Mercer said. "People don't say no to her."

When Egle took on the role of co-executive director in 2007, one of her first goals was to get rid of "the R word" in Virginia. While others might view mental retardation as a clinical diagnosis, people who have been on the receiving end of the insult "retard" their entire lives, as she had, hate the term.

An Arc board member tried to lower Egle's expectations and told her it could take six years to change state law. Egle helped rally others with intellectual disabilities, and the law was changed within six months.

In 2008, the term "mental retardation" was replaced with "intellectual disability" in everything from agency names to state code related to the death penalty. Egle says she sees this as the beginning of a civil rights movement.

"When you change the word, it changes the expectations," Mercer said.

After their success in Virginia, the mother of a girl with Down syndrome from Edgewater, Md., contacted Egle and Mercer for help getting the law changed in Maryland. Nina Marcellino rallied other parents and successfully got the terminology changed in the state in April 2009.

In November 2009, Maryland Sen. Barbara Mikulski (D) then introduced "Rosa's Law," named for Marcellino's daughter, in the U.S. Senate. It changes the terminology in federal education, health and labor laws.

"This law is about families fighting for the respect and dignity of their loved ones," Mikulski said in a statement.

President Obama signed the legislation last week, and Egle was invited to attend a related reception at the White House on Friday.

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