CAC Corner: Time to celebrate!

June 1, 2011 by cpehrson

This CAC Corner blog was written by Tom Brownlee, Chair of the CPD Consumer Advisory Council.

In February of this year, Utah Governor Gary Herbert signed House Bill 230 into law eliminating the term “mental retardation” in all state documents.

For many years, for people with disabilities, this (term) has been very offensive, and not appropriate, as well.

From my past experience, it was very personal for me, getting teased and called that name.

So, we’ve been trying over the years to get this changed, and finally, on the federal level, there’s Rosa’s Law. (This law will  replace the terms “mental retardation” and “mentally retarded” with “intellectual disability” and “individual with an intellectual disability” throughout federal health, education and labor policy.)

And now, on the  local level, a true milestone has been reached (as HB 230 goes into effect). It is a time to celebrate for all here in the state of Utah!

Note: Rosa Marcellino’s brother, Nick, stated when President Obama signed Rosa’ Law into effect,  “What you call people is how you treat them. If we change the words, maybe it will be the start of a new attitude towards people with disabilities.”

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Top ten from 2010

December 29, 2010 by JoLynne Lyon

With 2011 on our doorstep, we’re taking a look back at our past year. Here  are our top ten blog posts from 2010. 

We wish you the very best for the coming year.

#10:  CPD Legacy Story: Heidi Hill

#9: Barstow and Sachin–instant love

#8: CPD’s Judith Holt honored with Lifetime Service Award

#7: Legacy Story: Felipe Candelario

#6: From Richard Roberts, retiring division director: Farewell, and on to new adventures

#5: Rosa’s Law will have profound effect

#4: Silver Ribbon denotes disability awareness

#3: CPD Legacy Story: Gordon Richins

#2: CPD Legacy Story: Dax Drysdale

#1: Special Education Law Conference

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What’s in a name?

October 11, 2010 by JoLynne Lyon

The CPD’s own history reflects how words fall out of favor.

Our center’s beginnings date back to the President’s Panel on Mental Retardation, convened in 1961 by President John F. Kennedy. The panel’s cringe-worthy title was common terminology back then—and many sources cite the panel’s creation as a milestone in the disability field. It certainly led to this center’s existence.

The panel made recommendations that were later incorporated into public laws 88-164 and 88-156, allocating money to university-affiliated facilities that would provide research and services for people with disabilities. (Interestingly, those laws both had names, and both included the R-word. When they’re referenced now, it’s by their numbers.)

The Center for Persons with Disabilities—or the Exceptional Child Center, as it was known then—was one of the university-affiliated facilities. In those early days, services for people with disabilities were focused on curing and preventing what was then termed mental retardation (MR). “Nationally the verbage in the laws talked mostly about MR, but even then it was much broader than that,” said Dr. Marvin Fifield, former CPD director.  Muscular issues, speech and language pathologies and health issues caused by autoimmune diseases were all put under the same umbrella. Today they fall under the developmental disability category.

“At that point in history mental retardation was a disability that needed addressed through research and services,” said Gordon Richins, the CPD’s consumer advocate. Over time, though, the term became less medical, more insulting. Today it offends people with disabilities. (See the comments by people with disabilities and their family members below.)

Federal lawmakers agreed it was time for a change in terminology when they passed Rosa’s Law last month. “Mentally retarded” will now be replaced by “person with an intellectual disability” in federal health, education and labor law. As the terms change, so does the philosophy, which is less centered on curing and preventing disease and more focused on services, education and employment to people with disabilities.

Here are some reactions to the changes in terms and in philosophy from members of the CPD’s Consumer Advocacy Committee:

“You’re labeling individuals in a demeaning manner when you use the R word.”
–Gordon Richins, CPD Consumer Advocate.

“Another shift has been the move from diseases to conditions. This is important especially when a condition is something you cannot catch.”
— Matthew Bone, family advocate, CPD Consumer Advisory Council.

“Boy did someone hit my ‘hot button’ when it comes to the R-word…I have hated that word, well, since it was linked with part of my daughter’s disability.  Kids throw it around like it’s a substitute for ‘stupid.’  What’s worse is that I have heard adults use the same word interchangeably.  One goal that was set at Logan High (actually when my oldest was still attending there) was to ban the use of the ‘R-word’, and it worked for a long time.  Now with two daughters there still, I walk the hallways and hear ALL sorts of things from kids’ mouths…but you know what I have to think?  They hear it from somewhere too, and if they are allowed to repeat what they hear at school, it spreads like a cancer.  Words can be hurtful, and when you hear them as a parent as applied to any child, you want to shake the individual and tell them how ‘stupid’ THEY are. … I am not a violent person, but when I hear certain words they put me on edge. I wish I could go on ‘Oprah’ (since everyone watches her) and announce that very statement. Off my soapbox now…breathing normally….thank you for listening!”
–Charlotte Spencer, CPD Consumer Advisory Council member

“My experience with the old term was that I was teased and called it growing up. Kids tried to fight me as well. It was very challenging for me, being called and seeing others being called it as well. I wanted to give up at times but got through it. I am so thankul for Rosa’s Law now.”

–Tom Brownlee, CPD Consumer Advocacy Council Chairman.

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Rosa’s Law will have profound impact

September 29, 2010 by cpehrson

Rosa’s Law is on its way to President Obama’s desk for his signature.  After passing last month in the Senate and last week in the House by unanimous consent, the law to eliminate the terms “mental retardation” from federal education, health and labor laws will soon be put into effect.

U.S. Senator Barbara A. Mikulski (D-Md.), who introduced the bill to the Senate, states that “This law is about families fighting for the respect and dignity of their loved ones.  This change will have a positive effect on more than 6 million Americans.”

For Rosa Marcellino’s family in Edgewater, Maryland, the passing of this law is a celebration they won’t soon forget.  Last year, when Rosa’s mother learned that Rosa, who has Down syndrome, had been labeled retarded at school, she teamed up with other parents to introduce a bill to change the terminology in Maryland state laws.  Rosa’s brother, Nick, testified at the hearing before the General Assembly, saying “What you call people is how you treat them.  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.”

Rosa’s Law will replace the phrase “mentally retarded” with “an individual with an intellectual disability” in health, education and labor law. It makes the language in federal law consistent with that used by the Centers for Disease Control, the health arm of the United Nations, and the White House through the President’s Committee for People with Intellectual Disabilities.

“I’m pleased that the House has approved Rosa’s Law, and hope the President will sign it quickly,” Senator Mike Enzi (R-Wy.), a co-sponsor of the bill, said. “This bill is simple in nature but profound in what it will do when it is enacted.  For far too long we have used hurtful words like ‘mental retardation’ or ‘MR’ in our federal statutes to refer to those living with intellectual disabilities. While the way people feel is important, the way people are treated is equally important. 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.”

We applaud the Senate and the House for recognizing and respecting the dignity of people with intellectual disabilities. We applaud the Marcellino family for supporting Rosa and taking action on something that will affect people positively for many years to come.

NOTE:  President Obama signed Rosa’s Law legislation on October 5, 2010.

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