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Wednesday, July 6, 2016

Rosa's Law : legislation replacing the word "retarded" with “intellectual disability” throughout federal policy : a retrospective

[Courtesy Photo. Rosa Marcellino, 9, second from left, is shown with siblings Maddie, 13, Gigi, 11, and Nick, 15, during the Special Olympics state games, held in June. Rosa has Down syndrome and is the inspiration behind “Rosa’s Law” that removes the terms "mentally retarded" and “mental retardation" from federal education, health and labor laws]

Rosa's Law :

A journey that began as one Maryland family’s battle for respect and acceptance for their daughter and sister, Rosa, became a significant milestone in the ongoing battle for dignity, inclusion and respect of all people with intellectual disabilities when United States President Barack Obama signed bill S.2781 into federal law on October 5, 2010.

Known as “Rosa’s Law,” the law removes the terms "mental retardation" and "mentally retarded" from federal health, education and labor policy and replaces them with people first language “individual with an intellectual disability” and “intellectual disability.”

The bill, championed by Sen. Barbara Mikulski (D-Md.) and Sen. Mike Enzi (R-Wy.), garnered unanimous support in passing both the House of Representatives and the Senate. Rosa’s Law was commemorated in a White House ceremony on October 8 with an 11 member delegation of Special Olympics athletes, leaders and self-advocates present to celebrate the milestone. See the list of delegates.

"Respect, value, and dignity – everyone deserves to be treated this way, including people with intellectual disabilities," said Dr. Timothy P. Shriver, Chairman and CEO of Special Olympics. "The President’s signature and the unanimous support of both the House and Senate show that our elected officials understand and embrace this ideal. I congratulate Sen. Mikulski and Sen. Enzi for their vision and sensitivity to people with intellectual disabilities everywhere.”

"For far too long we have used hurtful words like 'mental retardation' or 'mentally retarded' in our federal statutes to refer to those living with intellectual disabilities," said Sen. Mikulski. "Rosa's Law will make a greatly-needed change that should have been made well before today — and it will encourage us to treat people the way they would like to be treated."

Special Olympics, as the world’s largest movement dedicated to promoting respect and human dignity for those with intellectual disabilities, has long championed the use of people first language. In 2004, in response to its athletes' call for change, the Special Olympics International Board of Directors adopted a resolution to update the movement's terminology from "mental retardation" to "people with intellectual disabilities." In 2008, Special Olympics launched the website www.r-word.org to combat the inappropriate use of the R-word in common usage and helped lead protests against media use of the word in response to the film ‘Tropic Thunder.' In 2009, the youth-led "Spread the Word to End the Word" campaign launched with rallies in K-12 schools and universities around the country, enlisting young people to combat use of the word and collecting more than 100,000 signatures to pledge inclusion and respect towards all people.

In order to learn more about youth experiences with the R-word, the Special Olympics Global Collaborating Center at the University of Massachusetts Boston, and Harris Interactive®ii worked together to design an online survey. In this online survey, youth across the U.S. were asked questions about the R-word, including whether they have ever heard the word, and if so, how they reacted to hearing it. Over a thousand youth between the ages of 8 and 18 responded to the online survey. A bulleted summary of some of the results is below, or you can read the full results of the survey.

  • •92% of young Americans (ages 8-18) report having heard the R-word used, while 36% have heard the word used specifically toward someone with an intellectual disability.
  • •Only 50% of those who heard it used to refer to someone with an intellectual disability told the person who used the word that it was wrong to do so.
  • •The study also confirmed that as young people progress from elementary school, to middle school and then on to high school, they are less likely to feel bad or sorry for the person being picked on, and more likely to laugh, do nothing, and/or not care.

Youth leaders like Spread the Word to End the Word campaign co-founders Soeren Palumbo and Tim Shriver have used viral and grassroots methods to garner support amongst their peers and in schools across the United States and around the world. By highlighting the pervasive use of the R-word in mainstream media and reaching out to people like Bill O’Reilly when the R-word is used on his show, the campaign has begun to have a noticeable impact. FOX adopted the campaign’s ideals when they edited out multiple uses of the R-word in the movie “Miss March” and replaced it with alternatives in the DVD release. The F/X network now includes the R-word as one of three words that are not allowed to be broadcast. MTV has also embraced the campaign by bleeping out the R-word just like any other curse word or slur in shows like “The Real World” and “Teen Mom.”

“Meaningful change is often slow to occur, but we’ve found that once we are able to get our message in front of people, whether they’re a neighbor, a friend, a studio executive, celebrity or politician, they generally get it,” said Palumbo. “It comes down to the human connection we all share. No matter where we come from, what our background is, we are all human, and we all deserve that requisite respect.”

“What people, I hope, are starting to see is that making their pledge to stop using the R-word is just the beginning of a whole new and amazing world that opens up to them,” said Shriver. “Once you open your heart to people with intellectual disabilities you’re going to want to do more and that’s where Special Olympics comes in – it’s the next level of activation. Young people today are desperate to make change, to channel their passions in meaningful ways and whether it’s starting a unified team at your school, or just cheering at a competition, that’s what Special Olympics is offering – a way for young people to make meaningful change in the world.”

Why ‘Mental Retardation’ is Outdated
Although originally a clinical term and introduced with good intentions, the term "mental retardation" and its pejorative form, "retard" have been used widely in today's society to degrade and insult people with intellectual disabilities. By instead using "intellectual disability" and "an individual with an intellectual disability" in federal laws, the United States sends a strong message that language is important and that no form of the 'R-word' should be used to refer to any of its citizens.

Champions of Rosa’s law made sure that by updating language in federal law that the bill would not expand nor diminish services, rights, responsibilities or educational opportunities duly owed to individuals with intellectual disabilities. It simply makes the federal law language consistent with that used by the Centers for Disease Control, the World Health Organization, and the White House through the President's Committee for People with Intellectual Disabilities. The changes will occur during routine revisions to laws and documents over the next several years. Since the alterations will be implemented gradually, the legislation is not expected to incur any cost.

How ‘Rosa’s Law’ Began
A family in Edgewater, Maryland provided the inspiration for the law. Nina Marcellino is the mother of four children, including Rosa, a child with Down syndrome. In 2009, Marcellino learned that Rosa had been labeled retarded at school. Marcellino didn't allow the R-word in her house, and none of her children described their sister that way. Nina teamed up with other parents and her state delegate to introduce a bill to change the terminology in Maryland state law. Before the bill was brought up for consideration in the Maryland General Assembly, they held a hearing on the implications of changing the term.

There were several witnesses at that hearing, but the testimony that had the greatest impact was given by an 11-year-old boy: Rosa's brother, Nick. "What you call people is how you treat them," Nick said. "What you call my sister is how you will treat her. If you believe she's 'retarded,' it invites taunting, stigma. It invites bullying and it also invites the slammed doors of being treated with respect and dignity."
Nick's comments speak to the core values of Special Olympics – respect, dignity, acceptance and inclusion. Special Olympics congratulates and thanks all involved in passing ‘Rosa’s Law.'

Special Olympics Delegation to White House Commemoration of ‘Rosa’s Law’

  • Dr. Timothy Shriver, Special Olympics Chairman and CEO
  • Loretta Claiborne, Self-Advocate and Special Olympics International Board Director
  • Eddie Barbanell, Self-Advocate, Actor and Special Olympics International Board Director
  • Soeren Palumbo, Co-founder “Spread the Word to End the Word” Campaign, Co-founder SO College
  • Tim Shriver, Co-founder “Spread the Word to End the Word” Campaign, Co-founder SO College
  • Erica Wheeler, Self-Advocate and Special Olympics Maryland Board Director and Athlete
  • Danielle Liebl, Self-Advocate and Special Olympics Minnesota Athlete, Youth Activation Committee Member
  • Roberta Blomster, Self-Advocate and Special Olympics Minnesota Athlete and Global Messenger
  • Frank Stephens, Self-Advocate and Special Olympics Virginia Athlete
  • David Egan, Self-Advocate, Special Olympics Virginia Board Director and Athlete
  • Julie Petty, Self-Advocate from Fayetteville, Arkansas.

(The above information is from Special Olympics)
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Timothy Shriver’s thoughts on Rosa’s Law :

Friday, October 8, 2010
President Obama Signs Rosa's Law!

Today, I attended a reception at the White House with Special Olympics athletes to celebrate the enactment of Rosa’s Law. The bill’s passage is a huge victory for everyone, not just people with intellectual disabilities, as it acknowledges the power of words to separate, alienate, and ultimately dehumanize people when they are categorized as ‘other.’ While we still have so far to go in eliminating the use of the r-word in society and in showing others the extent to which demeaning language can hurt, we celebrate this tremendous milestone.

While some might scoff at this change as mere political correctness, I wish you could have been at the reception with these Special Olympics athletes and have heard their many stories of pain and isolation that resulted from the use of demeaning language. Although you couldn’t be there today to hear it from the athletes themselves, so many others have articulated the hurt and isolation they have experienced, including Special Olympics Global Messenger Frank Stephens:

"So, what's wrong with "retard"? I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the "in" group. We are someone that is not your kind."

Today is one victory in an ongoing battle and we ask you to join us March 2, 2011 to Spread the Word to End the Word.

Saturday, September 25, 2010
Rosa's Law is a Good First Step

Over the past two years, youth activists within the Spread the Word to End the Word campaign have secured nearly 140,000 online pledges from schools and communities across the country, setting off a national conversation about humiliating speech and the language of discrimination. It is not hard to see the fingerprints of thousands of youth activists, so athletes, and the families and communities on the passage of Rosa's Law this week, which is now on its way to the President for his signature.

I know I join millions of Americans in hoping for a quick signature by the President, and I also join them in recognizing that changing statutory language is not the end. The debate over language is only an opening to a discussion about attitude change and authentic inclusion. Our part at Special Olympics is promoting unity on the playing field and in communities through sport. We're committed to engaging millions more in the U.S. and around the world.

Critics who say that changing words can not solve problems are right. But it's a good start.

Congratulations to Senators Barbara Mikulski and Michael Enzi, and all the 72 co-sponsors across party lines, on this important accomplishment. Rosa's law is an historic triumph of self-advocacy and youth advocacy on behalf of our country's most vulnerable. This may be a first, but it won't be the last!
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Family Campaigns to Eliminate the Word 'Retarded'


ABC World News (refresh if no video)

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U S Senator Barbara Mikulski’s Press Release:

Mikulski Applauds Committee Passage of Rosa's Law
Bill strikes “mental retardation” and “mentally retarded” from federal education, health & labor law advances in Senate

May 26, 2010


WASHINGTON, D.C. – U.S. Senator Barbara A. Mikulski (D- Md.) applauded the Health, Education, Labor and Pensions (HELP) Committee’s passage today of Rosa’s Law, a bill introduced by Senator Mikulski to eliminate the terms “mental retardation” and “mentally retarded” from federal education, health and labor laws. HELP Chairman Tom Harkin (D-Iowa) and Ranking Member Michael B. Enzi (R-Wyo.) are original cosponsors of the bill.

Introduced by Senator Mikulski in November of 2009, Rosa’s Law replicates a law recently adopted in the state of Maryland. The family of Rosa Marcellino, a nine year-old girl diagnosed with Down syndrome, worked with their state representative to pass the legislation in the Maryland General Assembly. Shortly before it passed the Assembly, Senator Mikulski met Rosa’s mother Nina Marcellino at a roundtable on special education. Senator Mikulski promised that if Rosa’s Law passed in Maryland, she’d take it to the Senate floor.

“This bill is driven by a passion for social justice and a compassion for the human condition,” Senator Mikulski said. “At its core, it comes down to what Rosa’s brother Nick said in testimony before the Maryland General Assembly, ‘What you call people is how you treat them.’”

Under Rosa’s Law, the terms “mental retardation” and “mentally retarded” would be replaced with “intellectual disability” and “individual with an intellectual disability” in federal education, health and labor law.
“I'm thrilled that this bill has garnered so much support and is moving smoothly through the legislative process,” said Nina Marcellino, Rosa’s mother and advocate. “Thanks to the hard work of Senators Mikulski, Harkin and Enzi we are moving closer to getting rid of the stigmatizing label that carries so many hurtful memories of a period in our history when people with intellectual disabilities were disrespected. This has always been about so much more than just changing words or political correctness. It's about marking a new era where the dignity of people with intellectual disabilities is respected and their value appreciated. I'm eternally grateful to Senator Mikulski for keeping her promise and steadfastly supporting people with disabilities.”

The bill does not expand nor diminish services, rights, responsibilities or educational opportunities duly owed to individuals with intellectual disabilities. It simply makes the federal law language consistent with that used by the Centers for Disease Control, the World Health Organization, and the White House through the President’s Committee for People with Intellectual Disabilities.
“The Marcellinos’ story is a perfect example of effective citizen advocacy. They pulled together to pull us all to another way of thinking. They fought for the respect and dignity of a loved one. The more than 6 million people with intellectual disabilities in America deserve that same respect and dignity,” Senator Mikulski said.

The legislation has 43 cosponsors from both parties, including 17 members of the HELP Committee. In the next step of the legislative process, the bill will be considered by the full Senate.
The full text of Senator Mikulski’s statement, as prepared for delivery at today’s HELP Committee mark-up, follows:
“I’m glad that we have the opportunity today to consider Rosa’s Law. This bill takes ‘mentally retarded’ out of the federal law books and replaces it with ‘intellectual disability,’ a change that will have a positive effect on more than 6 million Americans.

“I want to thank Chairman Harkin and Ranking Member Enzi, both original cosponsors of Rosa’s Law, for helping me champion this bill. Their support, and the support of many members of this committee from both sides of the aisle, shows that this is an issue where we can tip our hats to boys and girls with intellectual disabilities by checking our party hats at the door.

“Let me tell you about the family that was the inspiration for this bill. Last year, a mother of four named Nina Marcellino found out her youngest daughter, Rosa, a child with Down syndrome, had been labeled retarded at school. Nina didn’t allow the R-word in her house, and none of her children described their sister that way.

“The Marcellinos worked with their state representative to craft a bill that took ‘retarded’ out of the state law books. Before they brought the bill up for consideration in Annapolis, they held a hearing on the implications of changing the term. One of the witnesses was Rosa’s brother, Nick. He told the legislature, “what you call people is how you treat them.”

“Last year, I had the opportunity to meet Rosa’s mom, Nina, at a roundtable I hosted in Maryland to talk about special education. She told me about Rosa’s Law and how they planned to bring it for consideration before the Maryland General Assembly.

“I thought it was a terrific idea. I promised Nina if it passed the Assembly, I’d take it to the Senate floor. Two weeks later, Rosa’s Law swept through the General Assembly with unanimous approval and was signed by Governor O’Malley last April.

“My bill is simple and straightforward. It substitutes ‘intellectual disability’ for ‘mental retardation’ and ‘individual with an intellectual disability’ for ‘mentally retarded.’ This bill will not diminish services, rights, or educational opportunities.

“The change would make federal health, education, and labor law consistent with language used by the CDC, the World Health Organization, and the White House, which changed the name of its Committee on Mental Retardation through Executive Order to the Committee for People with Intellectual Disabilities. It also follows the actions taken by many states to eliminate the r-word, including Virginia, Alaska, Massachusetts, New Hampshire, Tennessee, and Wyoming. It is a change advocated by the American Psychiatric Association, the group of physicians who wrote the definition for mental retardation.

“When I introduced the bill in November, I invited the Marcellinos to come down to Washington to see their bill get introduced and watch my floor speech. Before I went to the floor we had a chance to visit and I got to speak with the whole family – the parents, and their four kids, including Rosa. They told me about the steps they took in Maryland to get the state law passed. One of their ways to rally support was by giving people buttons that say ‘I support Rosa’s Law!’ It has Rosa’s face on it – she’s eight years old.

“They gave me one of those buttons and I look at it every day before I go to work. It reminds me of why I came to the Senate – to be a voice for Marylanders and to bring the best ideas of the people to Washington.

“This bill is driven by a passion for social justice and a compassion for the human condition. At its core, it comes down to what Nick said – that what you call people is how you treat them. The Marcellinos story is a perfect example of effective citizen advocacy. They pulled together to pull us all to another way of thinking. They fought for the respect and dignity of a loved one. The more than 6 million people with intellectual disabilities in America deserve that same respect and dignity.

“That’s why I introduced Rosa’s Law. I thank the chair and ranking member for their consideration of this bill and urge other members to vote to report this bill for consideration on the Senate Calendar.”
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#prevously posted June 2011

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