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Love–NOT Labels: Rosa’s Law

Love–NOT Labels

With families, “Love” is all that matters–no matter what, unconditionally.

The love we feel for our child, our baby, our sister, brother, son, daughter can never be replaced by a medical or psychological term some professional puts on a chart. So in isolation, it shouldn’t matter if the diagnostic label is “retarded” or “intellectual disability.”

As we spoke about in the post Circle of Life (click here) each person and family is part of a much larger system and what affects one part of the system affects all the parts of the system.

And that is where the chosen word and label does matter–big time.

Yesterday in the related post, “Retarded”–no more (click here) I briefly wrote about Rosa’s Law and showed one of the press releases/alerts sent by parents and advocacy groups to change the words, “retarded” to “intellectual disability.” Some of these advocates are professionals who make their living working with people with disabilities. But like most of the legislation of the last 60 years, Rosa’s Law came about through the vision and hard work of families.

If you want more information on what parents have accomplished visit Parallels in Time I (click here) and II (click here)

I was going to summarize Senator Mikulski’s Statement on the Introduction of Rosa’s Law (below) but since her words still make me cry, I figured you’d want to see the “primary research document”. Especially check out Nick Marcellino’s comments. And get the Kleenex handy.

This is just one family who went to one more meeting, talked with one more politician–but this time, with a lot of hard work and uniting allies, they changed the system. Maybe it is just a small step in the scheme of things. There are still thousands of people with intellectual disabilities and their families who do not have the services they need. But, this small step gives us all hope that our democratic system works. An individual can make a difference.

It amazes me that in an election year when politicians can’t agree on anything, they unanimously voted for this law. That alone makes it memorable.

Comments Please:

What do you think about Rosa and her family? Have you ever been an advocate for change? How, When, Why? How did it feel?

How is this press release different than the one in Retarded–no more?

Keep Climbing: Onward and Upward

All the best,

Mary

Rosa Marcellino and her family

FOR IMMEDIATE RELEASE:
17-Nov-2009 CONTACT: Press Office
202-228-1122

Senator Mikulski’s Statement on Introduction of Rosa’s Law

WASHINGTON, D.C. – U.S. Senator Barbara A. Mikulski today introduced Rosa’s Law, a bill that will eliminate the terms “mental retardation” and “mentally retarded” from the federal law books. U.S. Senator Michael B. Enzi (R-Wyo.), Ranking Member of the Health, Education, Labor and Pensions Committee, is the Republican sponsor of the bill.

Senator Mikulski’s statement as delivered on the Senate floor follows:

“Today I rise to introduce legislation that I’m calling Rosa’s Law. This bill began by listening to the people in my own state. It began when a mother told me a compelling story about her own daughter, her family’s efforts to give her daughter an opportunity for an education and to be treated with respect and with dignity. And at the same time, it began with the advocacy of not only she and her husband, but of her entire family, including her 14 year old son Nick who testified at the Maryland General Assembly.

“As a result of their effort, I’m introducing Rosa’s Law. Before I say more about the bill, I want to tell you about the family. I want to tell you about the Marcellinos, Joseph and Nina who are parents to four children – Nick, Madeleine, Gigi and Rosa. They’re in the gallery now watching this and I wish you could have been with me in my office as I met with the parents and talked with the family.

“Last year, at a roundtable on special education, I met Nina Marcellino for the first time. She told me about her daughter Rosa who was labeled at her school some years ago as mentally retarded. She told me about the stigma, the pain, and the anguish it caused both Nina and her husband, Rosa’s brother and sisters as well as the Rosa herself.

Nina and Joseph reached out to their local disability advocacy organization, The Arc, to see what could be done to change the law. They then reached out to a member of the Maryland General Assembly, a wonderful Representative named Ted Sophocleus. He introduced legislation in the General Assembly that would change the word ‘mentally retarded’ and substitute it with the phrase ‘an individual with an intellectual disability.’

“That’s why I stand on the Senate floor today to introduce, at the request of the family, a law on behalf of this little girl and on behalf of all of the children of the United States of America who are labeled, stigmatized and bear a burden the rest of their lives because of the language we use in the law books.

“My law changes the phrase ‘mentally retarded’ to ‘an individual with an intellectual disability’ We did this in health, education and labor policy without in any way negatively impinging upon either the educational or other benefits that these children are entitled to.

“When it came time to bring the bill before the General Assembly, the family was there. And who spoke up for Rosa? Well, her mom and dad had been speaking up for her. Her brother Nick and sisters Madeline and Gigi had been speaking up for her. This wonderful young boy, Nick, at the time 13, this is what he said to the Maryland General Assembly,

‘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.’

“Nick’s words were far more eloquent that day than mine are today. I want to salute Nick for standing up for his sister, but I think we need to stand up for all because in changing the language, we believe that it will be start of new attitudes towards people with intellectual disabilities. Hopefully, people will associate new words with the very able and valuable people that go to school, work, play soccer or live next door.

“Eunice Shriver believed in this when she created the Special Olympics. She knew that special needs children need special attention but they can do very special things, and look what she started. I had the opportunity to talk to Rosa’s mom Nina while this bill was under consideration by the Maryland General Assembly. I promised her then that if that bill passed the Maryland legislature, I would bring it to the floor of the United States Senate.

“Well, it passed unanimously. Governor O’Malley has signed it and today I stand before you introducing the legislation. It makes nominal changes to policy in federal education, health and labor law. It simply substitutes ‘intellectual disability’ for ‘mental retardation.’ This bill will neither expand nor diminish services, rights or educational opportunities. We vetted it with legal counsel. We reached out to the very wonderful advocacy groups in this field and they concur that this legislation would be acceptable.

“This is not the first time we’ve updated this terminology. Our laws once referred to boys and girls as ‘feeble minded.’ We thought we were being advanced when we changed it to ‘mentally retarded’ in the 1960s. Now, 40 years later, let’s take another big step and change it to ‘intellectual disability.’

“This bill makes language used in the federal government consistent. The President’s Committee on Mental Retardation was changed by executive order so it is now the Committee on Individuals with Intellectual Disabilities. The CDC uses ‘intellectual disability,’ the World Health Organization uses ‘intellectual disability,’ so my law makes the language consistent within the federal government.

“I’ve always said that the best ideas come from the people. Rosa’s Law is the perfect example of effective citizen advocacy. A family that pulled together for their own and in pulling together they’re pulling us all along to a new way of thinking. I want to recognize the Marcellino family who is with me in the gallery and the namesake of the law Rosa’s Law pictured behind me. She is also up there today.

“I also want to take the opportunity to thank my colleagues. It was indeed an honor to represent this family. I believe that in our country people have the right to be heard and that we should listen. They have a right to be represented, which I’ve tried to do. And now, let’s try to change the law.

“It was a pleasure to work with Senators Harkin and Enzi, the Chair and Ranking Member of the HELP Committee. I have their wholehearted support. This is going to be a nonpartisan bill. We’re going to check our party hats at the door and move ahead and tip our hat to these boys and girls.

“This bill is driven by a passion for social justice and a compassion for the human condition. We’ve done a lot to come out of the dark ages of institutionalization and exclusion when it comes to people with intellectual disabilities. I urge my colleagues to join me in a step further. Help sponsor the legislation that I offer on a bipartisan basis. Help me pass the law and know that each and every one of us makes a difference. When we work together, we can make change.”

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33 Responses to “Love–NOT Labels: Rosa’s Law”

  • It’s interesting to see the difference of a family’s love vs. the love of others towards people with disabilities. Of course, every parent loves their own child whether they have disabilities or not but those specific people only really have their family to fall back upon and their families are their only support system. As a society we should be treating everyone as an equal and giving them the support that they need so they have more than just their families as lifelines when they are in need of something.
    I really enjoyed this article!

  • Helen Macmann says:

    I love how it says a disability doesn’t just affect the person with it, but the whole family, and everyone connected to that person. It was wonderful how much Rosa’s family supported her and took care of her loved her no matter what. I have been an advocate for change before, when I was about 11 years old my grade school wanted to take away our recess to prepare us for high school where we wouldn’t have recess. So some friends and I decided to protest it and started a petition, and got over 100 signatures and spoke to the school about it with a convincing argument and eventually we got our recess back and the recess back for the 7th and 8th graders. It toke a long time , but it was something we really cared about and believed students needed that time to let out some energy and relax, that we needed more than the lunch period. Its good to fight for something you believe in, if you don’t fight for something it never changes. What would our school system be like if the parents of children with disabilities spoke up and fought, what would public location be like if they weren’t handicap accessible. When it’s important you should never give up.

    • Mary E. Ulrich says:

      Congrats Helen, sounds like you and your friends did a great job advocating for recess. Bet that was a learning experience. And, what we do for one affects many. Bet you were the hero of the school. 🙂

  • Abby Scherch says:

    This Article showed the meaning of family. Rosa’s family loved her and supported her in many ways. And this reminded me about my Uncle Larry who is disabled and our family. We would do anything for him and support him in every way possible.

    • Mary E. Ulrich says:

      And I’d bet Uncle Larry would do anything for you. That’s what family is all about. Talk to him and see what his ideas are about “disability”–bet he would have some keen insights.

  • Paige Bracke says:

    I thought that this article was very good. I thought that it was very neat how supportive and loving the family is. It definitely shows that we are all human and should be treated with respect and love no matter what the circumstance is. People with special needs are no different than everyone else.

  • Margaret Lehmenkuler says:

    This article showed the support and love that this family has for Rosa. It reminded me of my family. I have a cousin who is intellectually disabled and anyone in my family would stand up for her in a heart beat. I do believe that the term “mentally retarded” is a negative term, and her brother, Nick, was right in what he said. His words have so much truth to them. The term itself just sounds disrespectful and mean.

    • Mary E. Ulrich says:

      Thanks for sharing about your cousin Margaret. The personal connections we have with our loved ones make all the difference. Rosa’s family made a difference for ALL of us and long live Rosa’s law.

  • Sophie Roos says:

    I have to start off by saying that I was unaware that the term “mental retardation” was still being used, especially in the school system. This is a little shocking to me. I think the term “intellectual disability” is a much more suiting term. Just because a person has a mental handicap does not mean that they are stupid. “Mental retardation” makes a person sound as though they have no intelligence.

    This family is very special and reading their story is touching. I love the ways in which Rosa’s brother, Nick, describes her. He truly loves her despite her handicaps.

    • Mary E. Ulrich says:

      I think we all love Nick. What courage and what a demonstration of his love for his sister. Thanks for your comment Sophie, we all need to hear such good news.

  • Victoria Seitz says:

    This story truly melted my heart. Like most posts posted above I think one of the best parts of this story is when 13 year-old brother, Nick explained his thoughts about his sister. When a group comes together such as a family, friends or an organization they can truly make a difference and an impact. This story inspires me to do just that. Not because I want to be recognized but because it makes me stronger as a person.

    • mary says:

      I agree. This story is about love and advocacy. What parents/families have been doing all through the ages. Nick is an amazing young man.

    • Mary E. Ulrich says:

      You are right Victoria, when one person is stronger–we all benefit. ANd, we all need stronger circles of support.

  • Megan Heckmann says:

    I really like how this article shows a family advocating for the rights of their daughter/sister who could not advocate for these rights herself. I don’t have a family member who is intellectually disabled, but I do have friends who are intellectually disabled, and my brother works directly with young adults who are intellectually disabled, so I cannot stand when people use the term “retard” or “mentally retarded”. Those terms come with such negativity and disrespect, which no person should have to endure. I feel like changing the term from “mentally retarded” to “intellectually disabled” is a step in the right direction to try and stop the bullying that happens to those who have been labeled as “retarded”.

    • mary says:

      Hi Megan, it’s wonderful that you have friends with intellectual disabilities. Most people don’t have that personal connection. You’ll have to tell us more about your friends and your brother’s work. 🙂

  • Cecilia T Slonkosky says:

    Every person, disabled or not, deserves to be respected and treated with all the dignity in the world. Reading this article about Rosa’s Law helped me realize that the language we use to label or characterize someone with a disability can effect the way we view them as a person all together. And that view tends to be quite negative in society. The language change from Mentally retarded to “individuals with intellectual disabilities”, in my opinion, is an amazing piece of legislation, and I know that in time, people will use the words Retarded less and less. I dislike using the word already, because my little sister, Magdalena has an intellectual disability. Her disability, though, is not preventing her from living such a successful life. Her little accomplishments and advancements in school is astonishing and we need to positively reinforce their progress by using positive language. We are headed in the right direction, and my hopes have greatly increased after reading this post. Thank you!

    • Mary E. Ulrich says:

      You are right Cecilia,

      Everyone deserves to be respected. And, is it really so great an imposition to ask to use language with dignity? It seems so small in the scheme of things. You’ll have to share more about your sister. We love success stories. I’ll bet part of Magdalena’s success comes from having a great sister. 🙂

  • Jaden Salensky says:

    I just wanted to say that my little sister is intellectually disabled, so I’ve seen first hand what being called a retard does to a person with that label. It kills me. I have since done my best to encourage the people around me not to use that word in that way.

    I know that there are some ways in that the word retard is okay -music for an example- but I firmly believe that we have to be advocates for people who cannot advocate for themselves. People really can make a difference.

    • Mary E. Ulrich says:

      Hi Jaden,
      Love it! So you are an advocate, not only for your sister but for everyone who is different. You’ll have to tell us more about your sister. I can tell from your short response that you are close and probably have many stories.

  • So important that Nick and his family were there Tuesday as Sen. Barbara Mikulski, D-Md., introduced a bill in the U.S. Senate.
    Wilson Peters recently posted..No last blog posts to return.

    • Mary E. Ulrich says:

      HI Wilson, were you there? That would be an amazing memory. You saw history being made. If you want to share any more of the experience that would be awesome. Thanks for your comment.

  • Samantha Billington says:

    I think this is an amazing story about how a family came together to support another family member. What really hit me in this story was what Nick who was thirteen at the time said about his sister. It was so inspiring and true and the fact that it came from a thirteen year old about his own sister is made it that much more heartfelt. I think it shows that when you come together for a good cause you really can make a difference in not only their sisters lives but families around the country.

    After reading this it made me realize that people can make a difference!

    • Mary E. Ulrich says:

      I thought Nick was the hero too. He even testified before congress–that had to be one powerful speech. I wish we all had their courage–they really changed the law, changed thousands of legal laws and documents and though they named it Rosa’s Law–it really was a victory for their whole family and all of us.

  • Kevin (Ket) says:

    Hello, found your website when I looking up opinions about Rosa’s Law…

    I work in with the intellectually disabled in a group home and, to people like us who work closely with the population that these words affect, it is actually a pretty big deal.

    I used to be very pessimistic to the idea of changing the vocabulary too. Because jerks are going to be jerks and they’re just going to co-op the new word to turn it into an insult.

    But when I see culture as a whole, this is actually pretty timely. In October, attention was given to the suicides of LGBT people due to bullying. In response, people from around the world started expressing their criticism of the systematic abuse of minority groups.

    Sure, just changing the terminology on its own probably doesn’t mean anything. But I feel like, finally, we’re beginning to voice our opinion that emotional abuse is just as damaging as any other abuse. Eventually, our culture is going to reach a point where, rather than laughing at a person’s disability or race or sexuality or whatever, a bully is going to call somebody a “retard”, and the bully is going to be viewed with scorn as they rightfully should be.

    But we’re not there yet. I used to be silent when I heard somebody call another person “retarded”. Now, I openly criticize this use of language, but I’m still met with people accusing me of unnecessary political correctness or sensitiveness towards what are “just words”.

    • Mary E. Ulrich says:

      HI Kevin,

      Welcome aboard. I actually have 3-4 posts on Rosa’s Law, people-first and “retard” language. You are right. It is a big deal. Don’t worry about the “politically correct” label–that’s something to be proud about. And, even if you make no converts, people will know you stand for people with intellectual challenges. That gives you integrity and people will notice and respect you for that.

  • Hi Gary,

    Many people, the majority of people actually, feel that way. But it is a big deal to those of us with children who had the label of mentally retarded. I’ll try to explain in further posts.

    It is a step in the right direction, parents again had an impact and the government has a lot of sway.

    Would you feel differently if you, or someone you loved, had the label of mental retardation?

    Anyway, if nothing else, we can see the process for making change happen.
    Best. Mary
    Mary E. Ulrich recently posted..Smokey the Bear- Aaron- and a joke

  • Gary Jordon says:

    Hi Mary. Color me cynical but I have to point out two flaws to the whole idea of replacing one word for another.

    1. Intellectually disabled is quite a mouthful. I just don’t see the average Joe Smoe with this monumental expression pouring out their mouths.

    2. That is not going to stop the stigma. Simply becasue most people still will see retarded whenever they see “Intellectually disabled”. I’m thinking ya leagalese is spoken here. Seriously though it sounds like some sort of jargon that a crooked lawyer would use.

    I’m not going to say the effort was all a waste. I certainly like the idea that at least some families are going the distance to help their child/dren wovercome their obstacles. I’m just convinced that having a legal mumbo jumbo term is going to change the attitude.

    One last cynical note. Some of these individual have been retarded by the actions of their families, schools and other members of the communities that they are or have grown up in.

    Otherwise the post is a good one. Thanks for sharing.

    Have a great day

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