How support grew to ban ‘retarded’ from state books

Erin Thompson lives with Down syndrome, but she refuses to use the “R” word. She and others want the state of Virginia to follow suit.

Legislation is moving through the General Assembly to remove the phrase “mentally retarded” from thousands of pages of state code.

The new phrase would be “persons with intellectual disabilities.”

Last week, the Senate Education and Health Committee unanimously endorsed the measure after hearing from Thompson, who is 21, and 31-year-old Jill Egle’ of the Arc of Northern Virginia, an advocacy group. A similar bill has already cleared a House panel. A rally at Saint Paul’s Episcopal Church — near the General Assembly — on Monday attracted about 500 people and was intended to focus attention on a broad range of mental health issues.

The rally, organized by the Richmond-based Coalition for Virginians with Mental Disabilities, is an annual event, but it has taken on added significance this year. Mental health reform has moved to the top of the legislative agenda after last year’s mass shooting at Virginia Tech by a student with a history of mental illness.

”We’re just really trying to bring awareness,” said Lauren Cunningham, a student at Virginia Commonwealth University who works with the Arc of Virginia. “There are hundreds, thousands of people who are affected by this issue, and something needs to change.”

As for the language bill, it may just involve a phrase, but the initial positive reception is welcome news to activists such as Pam McGregor, executive director of the Arc of Greater Williamsburg, which works with 140-plus clients. The Arc is a nationwide nonprofit organization that works to improve the quality of life for children and adults with mental disabilities.

“Society is just not compassionate at times,” McGregor said. “Hopefully, this will rectify that.”

For Susan Ackerman of York County, a change in the language would be a good thing. She’s spent the last 30 years hearing the teasing and enduring the stares that come from having Down syndrome, a genetic condition that can cause mental difficulties.

Ackerman has never let it slow her down.

A 1997 graduate of York High School, Ackerman has for the past five years worked at the Williamsburg-based Colonial Services Board, which helps people with mental illness, mental difficulties and substance abuse. She takes the bus five days a week to her job, where she performs duties such as preparing mailers and doing laundry for the Williamsburg Winery and the Coast Guard.

Ackerman, a past Special Olympics gold medalist who excels at swimming, doesn’t consider herself disabled.

”Having disabilities, that doesn’t count,” she said. “It’s the abilities that count. I see the good side of people.”

The phrase “mentally retarded” can be hurtful not only to the disabled, but also to parents of disabled children who live with the daily challenge of raising them, McGregor said.

“Every parent has the same dreams and expectations for that baby,” she said. “Any time society can become gentler, more compassionate, it speaks volumes for that society.”

Changing the language would cost taxpayers about $75,000 for new letterhead, business cards, signs, plaques, licenses and other documents. Supporters say the investment would be well worth it.

“Some words hurt,” said Sen. Janet Howell, D-Fairfax, who has sponsored one bill. “Some words sting and some words stigmatize. Retardation is one of those words.”

Ackerman said she sees herself as so much more than a word.

“I don’t let it get me down, because I’m a strong person,” she said. “It doesn’t matter what you have. You can’t help it. It’s just the way you are.”

Howell said some professional groups that deal with this issue have already undergone a name change, such as the President’s Committee for People with Intellectual Disabilities. Virginia is one of only seven states that has not made the switch, according to testimony at the Senate meeting.

There are a few hurdles to overcome.

Because it affects state spending, budget committees will have to approve it. The Senate version of the bill is headed to the Courts of Justice Committee because of concerns over capital punishment. Virginia does not execute people if they are deemed mentally retarded, and lawmakers want to examine that portion of the state code to make sure the switch does not result in any confusion.

The measure also received an endorsement from the Virginia Association of Community Services Boards.

“This is a consumer movement to change it,” said Mary Ann Bergeron, executive director. “I think we’re moving in the right direction.”

The power of words was evident after the Senate hearing. Egle’ has been diagnosed as mentally retarded, but like Thompson and Ackerman, she rejects the label. As she spoke with reporters about the importance of changing people’s attitudes, she broke down in tears.

Moments later, she regained her composure.

“I’m just feeling proud for myself,” she said.

Reprinted with permission from dailypress.com, Newport News, Virginia