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Posts Tagged ‘Rosa’s Law’

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.”

Dream Plan for Aaron: 1981 (Part 1)

Hurry up lighting those candles

Who said Aaron was slow?

Build a dream and the dream will build you. R. Schuller.

What is Normalization?

In 1981 when Aaron was 6 years old, my friend Debbie Wetzel and I drove to Louisville, KY to hear Wolf Wolfensberger give a presentation on “Normalization” or “Social Role Valorization” as he renamed it.

Like many parents before us, this philosophy changed our whole way of looking at our children and their futures.

As Debbie said about her daughter, “Jenni is not going to lead her life wrapped up in cotton and stuck on a shelf. She is going to have as normal a life as possible.”

On the ride home we also talked about what this new way of thinking was going to mean for us as mothers and advocates. We knew our lives were forever changed. The segregated services that were currently our only options were no longer acceptable. We would no longer allow our young children to get on segregated busses taking them an hour-and-a-half across town to segregated schools and handicap-only recreation programs.

When I got home I outlined the following plans that were ambitious and I knew (based on what we were currently fighting with our school district) maybe impossible to achieve.

The dream plans were based on what I had just learned about normalization and compared my dreams for Aaron, age 6, my son with the label of autism and developmental disabilities and Tommy, age 4, with the label of typicalness.

The concept of building community and normalized environments set the course of my life.

In part 2 and 3, I will be showing you how this 1981 dream evolved. Remember the language is from 1981 when we talked with words like retarded and group homes. This will evolve too.

1981 Dream Plan for Aaron

Aaron will be educated in a public school with his non-handicapped brother and neighbors. He will have a functional curriculum (see related post) which looks at his needs in his life spaces (vocational, leisure/recreation, domestic, general community functioning). His out-of-school activities will evolve around his family and his own friends, interests and talents. He will be in age-appropriate settings: elementary school ages 5-10; Jr. High ages 11-13, Sr. High ages 14-21, job in the community 21+. He will begin vocational training now, at age 6, so he will be able to perform the job. (If he isn’t able to be a dishwasher, then he can be a dishwasher’s helper, etc… there is some job he will be able to do with success.) At the appropriate time, Aaron will move to a group home to live with others his age. Though dependent in many ways, Aaron will have self-esteem and confidence in the things he does and be a contributor to his family, his extended family, and society.

1981 Dream Plan for Tommy

Tommy will be educated in a public school with his handicapped brother and neighbors. He will have a functional curriculum which looks at the needs in his life spaces, (academic, vocational, leisure/recreation, domestic, general community functioning). His out-of-school activities will evolve around his family, his own friends, interests, and talents. He will be in age-appropriate settings. He will make a career choice and pursue training (vocational, university, apprentice…). At a time he decides is appropriate, Tommy will move to his own home, probably marry and begin his own family. He will have self-esteem and confidence in the things he does and be a contributor to his family, his extended family and society.

Normalization means…

The principle of Normalization originated in Scandinavia by Bank-Mikkelsen who began to compare his own life with the lives of residents in institutions for people who were then called “idiots, morons and imbeciles.” (Today we would say they have “intellectual disabilities” see related post on Rosa’s Law.)

Bengt Nirje a leader in the Swedish parent movement expressed it best:

Normalization means…

a normal rhythm of the day.

You get out of bed in the morning, even if you are profoundly retarded and physically handicapped;
You get dressed and leave the house for school or work, you don’t stay home;
In the morning you anticipate events, in the evening you think back on what you have accomplished;
The day is not a monotonous 24 hours with every minute endless.

You eat at normal times of the day and in a normal fashion;
Not just with a spoon, unless you are an infant;
Not in bed, but at a table;
Not early in the afternoon for the convenience of the staff.

Normalization means…

a normal rhythm of the week.

You live in one place, go to work in another, and participate in leisure activities in yet another.
You anticipate leisure activities on weekends, and look foward to getting back to school or work on Monday.

Normalization means…

a normal rhythm of the year.

A vacation to break the routine of the year.
Seasonal changes bring with them a variety of types of food, work, cultural events, sports, leisure activities.
Just think…we thrive on these seasonal changes.

Normalization means…

normal developmental experiences of the life cycle.

In childhood children, but not adults, go to summer camps.
In adolescence, one is intersted in grooming, hairstyles, music, boyfriends and girlfriends.
In adulthood, life is filled with work and responsibilities.
In old age, one has memories to look back on, and can enjoy the wisdom of experience.

Normalization means…

having a range of choices, wishes, desires respected and considered.

Adults have the freedom to decide where they would like to live, what kind of job they would like to have and can best perform.
Whether they would prefer to go bowling with a group, instead of staying home to watch television.

Normalization means…

living in a world made of two sexes.

Children and adults both develop relationships with members of the opporite sex.
Teenagers become interested in having boyfriends and girlfriends.
And adults may fall in love, and decide to marry.

Normalization means…

the right to normal economic standards.

All of us have basic financial privileges and responsibilities;
Are able to take advantage of compensatory economic security means, such as child allowances, old age pensions, and minimum wage regulations.
We should have money to decide how to spend, on personal luxuries or necessities.

Normalization means…

living in normal housing in a normal neighborhood.

Not in a large facility with 20, 50, or 100 other people because you are retarded;
And not isolated from the rest of the community.
Normal locations and normal size homes will give residents better opportunities for successful integation with their communities.

W. Wolfensberger; B. Nirje; S. Olshansky; R. Perske; and P. Roos, The Principle of Normalization in Human Services (Toronto: National Institute on Mental Retardation, 1972).

Recently Anne McDonald died, her story Annie Coming Out told of what it was like to live in an institution–not normal environments–where you were only seen as a group, never an individual (see related story).

If you are interested in more information about the history of people with disabilities, institutional settings and/or the parent movement check out Parallels in Time I (click here) and II (click here.)

Comments:

Have you ever gone to a lecture or workshop and come out a different person? Do you agree with the principle of normalization? Can a person with and without a disability both lead normal lives?

Keep Climbing: Onward and Upward

All my best,
Mary

Building Community | People First Language

People First Controversy

newborn baby

Background:

There is controversy in the disability community about the use of People First or Person First language.

I’ve written several posts about People First language:

*Rosa’s Law,

*Stigma and segregation caused by labels like “mental retardation and,

*Challenge to bloggers to use People First language.

Some self-advocates on the Autism Spectrum disagree They feel parents want to deny “autistics” and “aspies” their unique voices. They say parents only want to destroy autism and cure their children.

I am proud to support Rosa’s Law and advocate for People First Language. Perhaps these personal stories will explain.

I’m going to start and end with “Wheelchair Becky” but also share some stories about the past history of people with disabilities, my son Aaron, myself, and my hope for the future.

Is People First Language important for “Wheelchair Becky”?

"Wheelchair Becky" chooses a Pen Name

In a previous post: Building Community | Wheelchair Becky vs. Flat Stanley, I wrote about the way the Mattel Company thought “Wheelchair Becky” and “Black Barbie” would teach children about diversity and tolerance…and how it backfired.

I think People First language is part of the solution. If you disagree, that’s okay. It’s part of celebrating diversity.

Is People First language important for Aaron?

Aaron is my son’s name.

He has been depersonalized, reified and labeled by doctors, psychologists and other professionals as autistic, cerebral palsied, DD, MR, sensory deficit, movement disorder, severe/profound….

In the precedent setting Roncker case, the school psychologist testified under oath that Neill Roncker and others (like Aaron) had such low IQs “they wouldn’t know the difference between sitting next to a real person or sitting next to a rock.” So segregating them in separate schools with their own kind would make no difference. She considered their education a waste of school resources. Many people still agree with her.

So, I feel strongly People First language is important. Aaron is a person first. Others can give him labels. Some are medical and diagnostic but others are cultural: brother, son, uncle, cousin, friend, neighbor, patient, consumer, ….

This has nothing to do with wishing Aaron was cured. This is not denying the “autistic” culture. This has nothing to do with “disability pride.” It has everything to do with survival.

People First
language reinforces the moral argument that people with severe disabilities are people and have a basic right to exist. A right to breathe, to be a member of the human race, to live with our families, go to neighborhood schools and community activities–rather than live in institutions.

Check out Parallels in Time history of people with disabilities It is filled with the abuse of those basic human rights. The more we know about our history, the more we understand the need to protect our rights to “life, liberty and the pursuit of happiness.” This is a daily challenge as we fight for caring staff, decent living conditions, health care, opportunities to be safe and belong to our families and communities. There are many people who see only the disability–and think that means we don’t need the same care and support–we are not really citizens, not really human.

Aaron is a “person” with wants, needs, likes and dislikes like everyone else. He is Aaron, that unique PERSON whom I love. He is Aaron a citizen with rights.

As I look at my life as a parent, advocate, teacher and friend to people with disabilities, I find I have excluded myself from my community. Yea, me–the advocate for inclusion.

Is Mary a Person First?

All mothers understand this conundrum. Especially when your child is so vulnerable. I’ve spent many years hanging around people working for the civil rights of people with disabilities i.e. Mothers of Special Children, Special Education Parent Groups, Arc, Autism National Committee, TASH…. I am a member of Disability World. Maybe not a primary consumer, but certainly a secondary consumer.

At some point, I realized I had to reclaim my own personhood. My personal resolution to rejoin the mainstream of my community included finding writers’ groups.

OVRWA

Fortunately, I found the Ohio Valley Romance Writers of America (OVRWA) in my community. These talented women have become more than mentors, they have become friends. I learned almost every one of them has a PEN Name, some have more than one.

Men with Pens

Men with Pens has also been a terrific community for beginning writers and bloggers. I’ve met James Chartrand who also wrote about using Pen Names and Pseudonyms.

Positive Solution: Writer’s Groups and Pen Names

So, it occurred to me: What if our stigmitized “Wheelchair Becky” started to include herself in these writing communities? After all, she’d graduated from the high school yearbook committee, right?

What if “Wheelchair Becky” chose her own Pen Name, became her own person, and like Flat Stanley started to integrate herself into the community?

Pen Names

Urban legend says one way to pick your Pen Name is to:

1. Write down the name of your first pet.
2. Write down the name of your street address when you
owned that pet.

I consulted with “Wheelchair Becky” and she agreed to make this into a community-building activity at the OVRWA holiday party.

Everyone wrote their pet’s name and put the papers in one red dish.
Everyone wrote their street address and put the papers into another dish.

Then “Wheelchair Becky” with the help of a friend, chose one name from each dish and VOILA—

Smokey Woods was born.

How do we build an Inclusive Community?

Christmas Dinner w/Smokey Woods

Smokey Woods toasts the New Year

In the tradition of Flat Stanley and many writers, Smokey Woods began to make friends and include herself into the community. Here (at the head of the table) she is toasting in the New Year with our family. (BTW: She doesn’t eat much and is a cheap drunk.)

What a doll!

Here my precious granddaughter is playing with Smokey Woods the romance writer.

Smokey Woods is a doll, a toy. Smokey might use a wheelchair to get around, but she has a name.

My granddaughter represents the future. For Aaron, for me, for all people with disabilities. She will see people like Smokey in her classes and community. When she watches Glee on TV, she sees Artie singing and dancing. He also uses a wheelchair, but Artie has a name–and it doesn’t start with “wheelchair.”

Names matter. Aaron is Aaron. Mary is Mary.

I’m not promoting People First language because I am looking for a cure. I’m looking for survival and ways to prevent the abuse and segregation of the past. I’m looking for community inclusion.

For Aaron.

For myself and my family.

For all the next generation of little kids who will be learning about diversity by playing with dolls and watching TV.

I also think Mark Twain, Dr. Seuss and all the other writers who use Pen Names would approve.

Keep Climbing: Onward and Upward
All my best,

Mary and Smokey

Your Turn:

Did this make sense? Are there important reasons to use People First Language? Can we learn more about community inclusion and what it means to be a real person by looking at our language and the names we call each other? Do we need to study the past so we can move forward? In the comments please share your ideas.

Remarkable Parents and Advocates who Never Give Up

Parents and advocates of people with disabilities have a love-hate relationship with professionals because they don’t give up.

dad, mom and me - 1969
Creative Commons License

photo credit: freeparkingFamily portrait with mother, father, two small boys and baby
Creative Commons License photo credit: Powerhouse Museum Collection

I’m Thankful for Parents and Advocates

You know the ones.

They never give up.

They ask the tough questions.
They demand answers.

They show up at budget meetings and want copies of the agenda and handouts.

They show up at board meetings and introduce their child.

They study the friggin’ law and quote it at you.

They call the State Department when they can’t get what they want at the local level.

They are politically savy–not politically correct.

No matter how many times we tell them, “You are not credible because you are too emotionally invested,” They won’t give up.

They don’t care the budget has been cut.
They don’t care we are sharing offices and there is no toner for the copy machine.

They aren’t reasonable about “waiting”… or accepting excuses for shoddy performance…or people who don’t call them back.

They embarrass us by going to meetings where they are the only unpaid person in the room, and they are more prepared then we are. And they go to more meetings… and more meetings.

They just won’t give up.

If we try to slip one by, it’s like they have built-in radar. They just seem to know when we filled a staffing gap with an inexperienced person, or if the caregiver had a beer.

If we tell them the “research says”–they want to see the research.

They give us copies of new research.

They call the researchers–collect.

They even have the nerve to point out flaws in the research studies and want their child in the next study.

If we tell them they can’t possibly understand the research, they read books, network, take courses until they become the experts. Some even get their Doctorate degrees.

They insist we don’t give up.

When we do something right, they tell us we are wonderful and they are thankful, BUT….

Damn, there is always a BUT.

When we tell them to “Trust Us,” they smile and tell us that is like asking GreenPeace to “trust” the oil companies.

They just won’t give up.

Damn, they drive us nuts….
But we know that after we retire and get our pensions, they will still have to be harrassing our replacement because their child will always need someone to advocate for them.

We respect them because we know they force us to do a better job.

We know that when they are helping their child, they are also helping all children.

We love them because their motives are pure and they make the world a better place.

And most of all, we admire them because they don’t give up.

This is dedicated to:

Mary and Oliver Triplett

They were the parents who ignored advice from the professionals and kept their son Donald home from the institution. Their son became the famous Donald T. in Leo Kanner’s research article identifying the phenomenon he named autism. This article in The Atlantic shows how Donald is living today. Though the story is about Donald–I think it is his parents’ love and advocacy that is the REAL STORY (click here).

Anne McDonald and Rosemary Crossley

Anne McDonald and Rosemary Crossley kept teaching us all about the right to communicate, and they didn’t give up.(click here).

Jon Morrow

Jon Morrow is an associate editor on CopyBlogger whose blog article: On Dying, Mothers, and Fighting for Your Ideas went viral. He is a success story and has done amazing things, but when you are reading this, think of his mom.
(click here).

Nina and Joseph Marcellinos

Nina and Joseph Marcellinos knew the word “retarded” hurt their daughter’s future–and they didn’t give up until they changed the Federal Law. (click here).

Tell us about your experiences:

Do you know any remarkable parents and/or advocates? Do you love, hate, respect, admire, despise them?

When you are reading about great advances for people with disabilities, the elderly, children… do you look underneath the headlines and see the parents and advocates? Have you done something where, against the odds, you didn’t give up?

Keep Climbing: Onward and Upward

All the Best,
Mary