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Posts Tagged ‘MN DD Planning Council’

Thoughts on First Ed Roberts’ Day

Ed Roberts Campus in Berkeley, CA

Ed Roberts Campus in Berkeley, CA

Thanks to everyone who Tweeted, Facebooked (is that a word?) and otherwise shared information about Ed Roberts and his first official memorial day in California

The Ed Roberts Campus at Berekley California is open. The campus uses Universal Design and is built for EVERYONE. Here is an article about how the architect had to think differently about successful design. It is across the street from a fully accessible transportation system. Win-Win.

Historical Videos for YouTube

We had a great response to reformating the historical videos into segments for YouTube. We are creating a plan for moving forword. As we get news, I’ll pass it on. Thanks to everyone who so generously contributed in any way to this important project.

The Inclusion and Disability Rights Movement has come a long way, yet we have so much farther to go.

Adapting: Becoming a Star

Ed Roberts often joked that in the first 14 years of his life he was “just an ordinary kid.” He was more interested in sports than in school work and wanted to be a professional baseball player when he grew up. That all changed.

In 1953, before the vaccine, Ed contracted polio. Overnight he became paralyzed from the neck down and required an iron lung, which he used the rest of his life.

One of Ed’s greatest talents was being able to look at a situation, and ADAPT.

Ed decided a baseball career was out, and became a straight A student in High School.

When all the students stared at him, he decided this was an attitude problem. Instead of being embarrassed, this was how it must feel to be famous. In time, he reframed the whole experience, adapted, and decided he would pretend to become a famous movie star.

Indeed he did become a star. How fitting we are now trying to get his video on YouTube. I think he would get a bang out of that.

Stares into Stars

This would also be a good tip for people who are being stared out. Parents, Caregivers, Teachers could all adapt this strategy and help “reframe” those stares into stars!

Skype and Technology

I just saw a video (2010) where a teacher and class used Skype to help one of the students who had cancer keep up with what was happening at school.

When Ed Roberts got Polio, (1952) he was quarantined and had to listen to his classes over the telephone. Think of the differences.

Skype would have been amazing to him.

When Ed returned to school after missing almost two years of school, he felt like a stranger. Not only had he changed physically, he was now paralyzed, but he carried the stigma of “polio” and having a “Quarantined” sign on his front door.

At 16, Ed had to start his life and start making friends all over again. Plus, with the stigma of “polio” people were afraid of him and he looked so “different.” If the students could have seen him over “Skype” they would have seen him evolve, and gradually they would have adjusted to his new learning style and physical appearance. It would have been a learning experience for all of them.

It’s nice when students send get well cards, but including the student on Skype shows another dimension of caring.
BTW: home with Skype is the least restictive environment for this child at this time.

The new Technology Act will make other learning opportunities available for people of all ages. Who knows what the future may hold.

Your Turn

Any other tips for reframing embarrassing situations Stares into Stars? Any other uses of technology you would recommend? What would you want if you had to miss school for a long time?

Keep Climbing: Onward and Upward.
All the best,

Mary

Ed Roberts’ Day| “Be Extraordinary”

In my class, “Introduction to Exceptionalities,” we read an article by Paul Longmore about the social construction of disabilities. The point being that the traditional “medical paradigm” points the disability finger at the person– they are defective and need to be fixed. The new paradigm of “social construction” puts the focus on the culture/society as the ones who need the fixing.

We are the culture, we are the society. And, through the courts, the legislature and individual everyday advocacy we help move society toward inclusion or back toward segregation and the medical paradigm.

Paul, like Ed Roberts, also had polio as a child. Our class watched a video on YouTube where Paul praised Ed Roberts. It reminded me of this post I wrote on the first Ed Roberts Day in California and challenged me to be courageous and follow the examples of both Ed and Paul.

And for what it’s worth, not one student in either of my classes had ever heard of Jerry Lewis. I thought that was a hoot!

Ed Roberts | “Be Extraordinary!”

In the United States we celebrate the birthdays of great civil rights leaders. Two of them are Martin Luther King and Ed Roberts. Most Americans know of Dr. King’s achievements but few know of Ed Roberts, the “Father of the Independent Living Movement” for people with disabilities.

Ed Roberts

Edward Roberts' Day Jan. 23, 2011

Ed Roberts Honored on his Birthday, Jan. 23.

California is the first state to officially designate January 23, 2011 as Ed Roberts’ Day. This is an opportunity for the media, public and private citizens to learn about Ed Roberts and the 50 million Americans living with disabilities.

But this day is about more than celebrating the life of a great American and pioneer in the civil rights movement of people with disabilities. This is a day to embrace Ed Roberts’ challenge to “Be Extraordinary!”

An Ordinary Kid Transforms

Ed Roberts often joked he started his life “just an ordinary kid” who was more interested in sports than school work. That all changed.

In 1953, when Ed was fourteen, he contracted polio. Overnight he became paralyzed from the neck down and required an iron lung, which he used the rest of his life.

One of Ed’s greatest talents was being able to see the possibilities, and adapt. When Ed got comfortable with his new body, he figured a baseball career was out but he knew he could still use his mind.

Ed became an Advocate for Himself and Others.

His mother, Zona Roberts, listened and helped him advocate for his own rights. When a high school administrator threatened to deny him a diploma because he couldn’t take physical education and driver’s education, Ed appealed to the school board and won.

He learned sometimes you adapt, but other times you fight discrimination and stand up for justice and equality.

When he entered the University of California at Berkeley (UCB), the newspaper ran an article saying, “Helpless Cripple Enters UCB.” Others might think he was a “helpless cripple,” but Ed knew better.

When physical barriers, like steps, prevented him from entering buildings, and other students were losing critical support services, Ed helped organize a protest which established the first student-led disability support services program at a university.

Ed got his BA and MA in Political Science. He finished all the coursework for his Doctorate (ABD) and taught at UCB for six years.

Ed Roberts paved the way for thousands of students with disabilities to go into higher education.

Ed married his college sweetheart and despite the medical doctors saying it was impossible, they had a beautiful son who was the pride of Ed’s life.

Ed Roberts the “Father of Independent Living”

Who Decides? The Birth of Self-Determination.

In Ed’s life, the dominant cultural view of people with disabilities was based on pity, charity, “better off dead,” and segregation. These attitudes marginalized the voices of people with disabilities and made them invisible in the culture. Ed met people who thought he belonged in an institution “with his own kind.”

He believed people with disabilities were “People First” who could speak for themselves and tell you what they liked, disliked, wanted, and needed. Instead of discrediting their knowledge, Ed and the Disability Rights self-advocates raised their voices and demanded to be heard.

Ed Roberts created the paradigm shift from Pity and Charity to Dignity and Self-Determination.

As I talked about in another post, Ed challenged these core attitudes of What is charity? (click here)

Accessibility

Ed fought for the first curb cut. When the city bureaucrats asked, “Why do we need curb cuts when we never see people in wheelchairs on the streets?” Ed calmly explained that was circular logic. This conversation was repeated in cities all over the country until the passage of the American’s with Disabilities Act (1990) required accessibility as a civil right.

Accessibility was more than just curb cuts. Ed worked for access to technology, transportation, jobs, voting, housing, inclusion in regular schools and every part of life. With Olmstead, he advocated to free people with disabilities from nursing homes and institutions.

Universal Design

Universal Design changes the attitude of charity. Accessible buildings, transportation systems, learning and education philosophies, communication and technology were NOT just for “poor cripples” they were for everyone.

Ed also understood basic dignity and civil rights were for everyone. After all, people with disabilities cross all ethnic, race, gender and class lines. He met with leaders in the Native American, African American, Women, Seniors, and Hispanic movements.

He created a common dialogue arguing, “All men (and women) are created equal”–including those who use breathing machines, wheelchairs, Braille and communication boards.

When those first curb cuts were made, all of a sudden it was easier for people with baby strollers, bikes, people who were elderly and people making deliveries….

Temporarily Able-Bodied or the Yets

In another post I talked about Ed’s concept of the Temporarily Able-Bodied (click here).

This was controversial because many people don’t like to consider they can join the ranks of the disabled in a moment. But again, Ed taught us having a disability is NOT the end of the world. Disability is just a part of the human condition.

Self-Determination

Ed helped create the nation’s first Center for Independent Living (CIL) which became the model for the world.

People with disabilities were taught self-help skills and personal responsibility. They learned to not be victims or eternal children, but rather to be adults and take control of their lives.

Ed was the first speaker at the Partners in Policymaking program. Like his mother Zona, he encouraged the parents expect their children to grow into independent adults. Effective Strategies for Social Change: Video of Ed Roberts Speaking at the First Partners in Policymaking Session (May 1, 1987)

Gov. Jerry Brown appointed Ed Roberts Director of the Department of Rehabilitation for the state of California in 1975. Ed supported the passage of Section 504 of the Rehabilitation Act and saw many of his ideas implemented. He served until 1983 when he co-founded the World Institute on Disability. He traveled the globe and developed a world-wide movement of, with and for people with disabilities. Ed Roberts really did change the world (as well as many airlines).

Ed died in 1995 from natural causes but his legacy continues with his son, his friends and a thankful nation. The lives of people with disabilities and ALL of us are better because of his spirit, vision and life.

In Ed’s Own Words:

Text of Remarks by Ed Roberts at Section 504 Sit-in Victory Rally in San Francisco on April 30, 1977.

“We have begun to ensure a future for ourselves, and a future for the millions of young people with disabilities, who I think will find a new world as they begin to grow up. Who may not have to suffer the kinds of discrimination we have suffered in our own lives. But that if they do suffer it, they’ll be strong and they’ll fight back.

And that’s the greatest example, that we, who are considered the weakest, the most helpless people in our society, are the strongest, and will not tolerate segregation, will not tolerate a society which sees us as less than whole people. But that we will together, with our friends, will reshape the image that this society has of us.

We are no longer asking for charity, we are demanding our rights.”

Summary:

Ed Roberts was a pioneer for the civil rights of people with disabilities.

Like Martin Luther King, he had a Dream that celebrates diversity for people of all races, and abilities.

He helped us see the stigma and segregation of disability as meaningless—we are all either “disabled, or the yet to be disabled.” We are all part of the human family and while we need each other, we each want self-determination in our own lives.

The journey toward inclusion continues as we replace the physical and attitudianal barriers of discrimination, segregation and the charity model with inclusion, universal design and civil rights.

Ed was extraordinary.

Be Extraordinary!

Ed Roberts couldn’t walk, couldn’t feed himself, couldn’t dress or shave himself. He couldn’t even breathe by himself. Yet look what he accomplished.

Ed continues to challenge us to see ourselves as perfect –just the way we are. He continues to inspire us with his ideas to Be Extraordinary.

We really have no excuses.

What can YOU do today to spread the word about Ed Roberts and the civil rights movement of people with disabilities?

What can YOU do today to help change physical and attitudinal barriers for ALL people?

Will YOU accept his challenge to also Be Extraordinary ?

Keep Climbing: Onward and Upward

All the Best,

Mary

Comments:

Please share your thoughts. Big or small, each action you take will spread the word.

Please take a minute and visit the MN Governor’s DD Planning Council’s tribute to Ed Roberts. See videos of Ed’s presentations.

Partners in Policymaking| 25 yrs of Making Government Work

Giraffes teach their young how to stick out their necks

Giraffes teach their young to stick out their necks

“Partner in Policymaking graduates are members of the Giraffe Society–they are willing to stick their necks out.” Ed Roberts

Partners in Policymaking Celebrates 25 Years: 1987-2012

It is popular to complain, “We need to get rid of government programs–they don’t work.” But if you are a parent or person with a disability, you know you can’t do it alone. You know you need help to survive.

And, maybe the question we need to ask is: “How can I get involved and make government programs work better…for myself and others?”

If you are struggling to find services and build a network of support for yourself or your young child, I highly recommend Partners in Policymaking. It is the best resource I know.

Partners in Policymaking is a program that not only works–it teaches parents, self-advocates and policymakers HOW to make government programs work.

In 1987, Dr. Colleen Wieck of the Minnesota Governor’s Developmental Disabilities Planning Council created Partners in Policymaking.

For 25 years the goal is still to create a win-win partnership between people who need and use services and the people who make public policy.

With 21,000 Partners in Policymaking graduates in the United States, and 2,000 Partners graduates internationally, parents, self-advocates and policymakers are changing the world.

Why Partners?

Partners is designed for adults with disabilities and families of young children, but some programs expand that target group.

The goal of Partners is to teach “best practices” and the skills necessary to “change systems.”

State-of-the-art information gives Partners the big picture, allows them to dream big, and gives them strategies to turn their dreams into reality.

Partners participants become competent to change their own lives, and then to work for changes that will affect others with disabilities at local, state, and national levels. Partners graduates are expected to be agents of long term change. They learn there are no “quick fixes.” They are trained to achieve long term successes.

Who are the “Policymakers”?

Policymakers are the people in government who are elected or appointed to make decisions about rules, regulations and resources. They legislate on school boards, city councils, county and state agencies and governments, federal congressional legislators, and others who shape disability issues at all levels of government.

Some Partners graduates have become elected and appointed public officials.

Partners in Policymaking is the Instruction Book

How many times have you heard parents wish, “If only I had an instruction book”?

Partners in Policymaking IS the instruction Book.

Here is a video that explains the facts about the Partner’s Program from the United Kingdom.

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Texas, 20 Years of Partners in Policymaking (2006) “It is the Power of the Dream that brings us here.” (You will love this song.)

New Classes Forming Now: The Power of the Dream

Find the Partners contact person for your state/country.

Find out the target audience for the Partners Course and if you are eligible–sign up.

If you are not eligible, see if you can still be part of the Partners network.

Everyone can take the online courses.

Here is the Homepage for the Partners in Policymaking Website. You can find contact information for where you live, you can find online courses, you can find Parallels in Time: A History of People with Disabilities and a wealth of other resources. But most importantly, you will be able to network with others who are sharing your journey.

Partners in Policymaking

Comments:

Any success stories about Partners? Any success stories about partnerships between advocacy groups and local leaders? Does this sound like a good idea? Who would you suggest for speakers on state-of-the-art? Do you think the power of the dream can bring people together?

Keep Climbing: Onward and Upward

All my best,
Mary

Related Posts:

Ed Roberts and the Yet to be Disabled

The Power of One

Aaron Ulrich: Dream Plan 4

Remarkable Parents who Never Give Up