Archive for January, 2011

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 now officially open. The campus uses Universal Design and is built for EVERYONE. Here is an article about how the archetic had to think differently about successful design. It is across the street from a fully accessible transportation system. Win-Win.

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

VIDEO Strategies for Social Change: Ed Roberts speaks at first meeting of Partners in Policymaking .

This is all Ed Roberts’ fault!

Ed Roberts was a civil rights leader for people with disabilities who was called a “prophet for independence.” He challenged each of us to be extraordinary.

This could be Chris Brogan’s fault!

Chris Brogan is a socially conscious social media guru with thousands of readers. He recently challenged his readers to use the oldest form of exchange–barter. Bartering in a Digital Age is about finding a way to get the services or goods you need. No excuses. If you can’t afford or don’t know how to do something, barter.

It’s the MN DD Planning Council’s fault!

The Minnesota Governor’s Developmental Disabilities Planning Council has been documenting the paradigm pioneers in the History of People with Disabilities for over a decade. Parallels in Time I and Parallels in Time II.

Since most history books ignore people with disabilities, these are important historical videos.

Okay, it’s my own fault!

I contacted the MN DD Planning Council and asked if any of their videos were in shorter segments. Dr. Colleen Wieck, the director said she “wished,” but there were no resources to edit or transfer the videos to YouTube.

I knew blog readers want short video segments, so there was the problem.

So now, Ed Roberts meet Chris Brogan meet MN DD Planning Council meet… er, me…meet YOU.

WE NEED YOU

Do you have the technological skills to edit videos like the Ed Roberts video (above) into three or four, 1-5 minute segments?

Could you help us post them on YouTube and the Parallels in Time website?

If you could help us with just one video, that would be significant.

In exchange, you choose a job for me, from the list below.

Let’s Make a Deal

EXCHANGE—an hour for an hour, my services for up to 50 hours.

NO MONEY will be exchanged.

How Can I Help?

I’ve have experience working with individuals and families. I could consult with you by phone (in US) or email. (Check out my “About” page.)

I’m a decent Beta Reader and developmental editor. If you have a novel or ebook sitting in your closet, I can help.

I could ghost write a blog post, review a book or education/teaching product.

I could research a topic (of your choice).

Any other idea we mutually agree on.

Disclaimer: I’ll give you my best, but no guarantees. I can’t cure anyone.

FOR THE SKEPTICS

This is a labor of love. I’m volunteering, no financial gain. Many of the people in the videos were friends or colleagues, many are now gone, but their vision lives.

This is important work. It’s been a long road for people with disabilities and their families, we need to keep moving forward.

Even if you don’t have a family member with a disability, there are good reasons to get involved.

We have knowledge and experience in quality of life issues and long-term care that will help Baby Boomers, seniors and others who are in the “temporarily able bodied” or “yet to be disabled” group Ed Roberts spoke about:

“We’re all getting older. We can’t avoid it, can we? I look around, and I notice that a lot of us are getting gray. As we get older, we realize that disability is just a part of life. Anyone can join our group at any point in life. In this way, the Disability Rights Movement doesn’t discriminate. As those of us who are temporarily able-bodied and working for access and accommodations now get older, the changes we make now will benefit us as well.”

CONTACT INFORMATION

If you are interested: FIRST COME FIRST SERVED. You get to pick the video you will work on.

1. Go to: Parallels in Time II videos or the Ed Roberts Memorial site.

2. Choose a video you would like to edit into three or four, 1-5 minute segments. (I can help you pick out the segments, or you can choose what you think is the most powerful.)

3. Email me at MaryE.Ulrich1@gmail.com and we’ll mutually decide the barter exchange.

4. We both get to work. Deadline March 1st.

Watch Our Progress

Every Friday, I’ll post how things are going. If this is not a good time for you, but you know of someone who might be able to help with this project, please forward this information.

All prayers and best wishes welcome.

Keep Climbing: Onward and Upward

Mary

Comments:

If you have questions you think would be helpful to the group, please ask here. Otherwise, contact me privately.

What do you think? Will the barter system work? Will these edited videos help spread our message of independence, interdependence and inclusion?

Can you help us, and as Ed would say, “Be Extraordinary?”

Ed Roberts | “Be Extraordinary!”

In March, we celebrate the birthdays of two great civil rights leaders, 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.

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.

ps. We are looking for help editing the videos into 1-3 min. segments for YouTube. If you are interested please contact me.

“It’s NOT my Job”| Caregivers and Direct Care Staff

It is the little things that make all the difference.

For almost 11 years Aaron, my son with the label of autism, has lived with his buddy Jack with 24 hour support staff paid for by their Individual Options (IO) Medicaid Waivers.

In our dream plan and person centered planning, we imagined a caring staff who would not only help Aaron with his direct care needs, but also with community inclusion. We have had some great success stories. Some staff members have become friends and are like part of our family.

Aaron’s individual direct care people are the most important people in his life. He depends on them for everything. We depend on them for everything.

In “Dear Caregivers” Part 1, and Caregivers | Blame it on the Hose Part 2, I talked about our family’s experience with Caregivers and Direct Care Staff. I gave examples of great caregivers who go the extra mile to provide quality care to my son and others with severe disabilities.

This article is NOT about them.
This is about the “OTHER” caregivers and direct care staff.
You know what I mean by OTHER, right?

VACANT

When we brought Aaron back from vacation after Thanksgiving, we found a notice that said the mail carrier had declared the house “VACANT: no further mail delivery.”

Since the guys have lived in this house for over 10 years and there were substitute staff in the house over the holiday, we wondered what could possibly have happened.

We learned the substitute staff didn’t take the mail out of the mailbox. In addition, all the Black Friday ads, newspapers and flyers were all laying in the driveway. No one picked them up, brought them into the house or threw them in the trash. In fact, several were all wet, soggy and had tire marks on them.

Hummm. Obviously, when the mail carrier came to the house it looked unoccupied. There are a couple foreclosure houses in the neighborhood. So, s/he declared the house “Vacant.”

Over the years, I have been to many town meetings with angry neighbors who didn’t want people with disabilities to move into their neighborhood. Because the house rental agreement is in Aaron’s name, my husband and I make sure the house and yard always looks well cared for.

The only solution I can think of is next time we write up an individual service plan (ISP) for Aaron, we will have to include “Staff will pick up the mail, and newspapers from the driveway.”

TURN ON CHRISTMAS LIGHTS

Aaron loves the Christmas lights and decorations on the tree. The first year he moved into his house, Grandma gave him her tree and we gave him all the special ornaments we had saved since he was a baby. Our family tradition was to give him one new ornament each St. Nick’s day to start the season. He had ornaments from us, from his brother and family members, from his teachers and school mates. Some were bought, some were homemade. Aaron loved to take the ornaments in one hand and flip them with his other hand.

Every year our dear caregiver would put up the tree around Thanksgiving. We really appreciated it. Since Aaron spends the majority of his time sitting on the couch in the living room, we felt he could at least enjoy seeing the Christmas tree with familiar ornaments.

Aaron is at the mercy of the staff

Nine out of the ten times we went to pick Aaron up or drop him off, the Christmas tree was never lit. The cord was on the floor and required bending over to plug it into the wall. We even offered to get a longer extension cord if that was an issue. But, even though the staff knew we were coming, they would just sit on the couch directly across from Aaron, and the tree would not be lit.

Next ISP will need to read, “From Thanksgiving until Christmas Day, staff will turn the lights on the Christmas tree from 6 PM to 9:30 PM. so Aaron can look at the lights.”

NOTE: I was going to give a lot of other examples, but this depresses me too much and I think you get the idea.

Taking RISKS

I’m expecting that sharing these stories will come back to haunt me. The agency will give this as an example of how we don’t appreciate their staff. They will probably say exposing stories like this, which are based on my actual experiences, are exactly why no one wants to work with Aaron. Not only is he a tough kid, but his parents are impossible, ungrateful people who are the problem.

In my personal and professional experience, many agencies SAY they want parents to be involved, but they really don’t. They would rather work with people with autism and developmental disabilities who have no parent involvement, no advocates, no one who would ever question what they are doing.

Parent Involvement

Many agencies say they want parent involvement–but what they want are parents who will just tell them they are saints and wonderful. Many agencies just want parents who will raise money for them and advocate to the state and county for increased rates.

I know people with disabilities who have family members who seldom see them. This is so incredibly sad. I used to think it was all the family members fault. Not anymore. It takes persistence and determination to keep on keeping on.

I cannot begin to tell you how hard it is to work with some of these staff people. Tom (my husband) and I have documented staff members who disobeyed the laws and agency rules. Sometimes, to the agencies credit, they did remove them: some smoked in the house, some left Aaron in hot cars while they went inside a store, some yelled at Aaron, some had cars that weren’t safe, some refused to clean bathrooms until the entire house smelled like urine, some asked us for money, some didn’t speak English, some came from different cultures and only thought of themselves–not Aaron.

If some of this sounds prejudiced. So be it!

Staff people have said to me: “But I don’t brush my teeth twice a day, why would I have to brush Aaron’s twice a day.” “I don’t use shampoo when I wash my hair.” “In my culture, we don’t give baths every day.” “I come from a country where it is always hot. So I need the furnace to be set on 80 degrees”–even though this made Aaron sick. The list goes on forever….

First Hand Experiences

I am pouring out my heart here. I couldn’t make up these stories. I guarantee each of these examples actually happened to us. They are all first hand experiences. I hope that by putting them on paper they will begin a discussion about how people like Aaron, who have severe disabilities, can get a better quality of life. That life depends on excellent caring direct care staff and caregivers. They have an important and difficult job. The good caring staff are more precious than gold. We love them and cherish them. We try and support them every way we can.

The OTHERS… well, they can still be nice people with good intentions. We hope they find a job they can love and do well…but not with Aaron.

Keep Climbing: Onward and Upward

Mary

Please Comment:

What would you do if this was your child? What do you think Aaron is feeling when he can’t talk or physically do what he wants to do? What would help? Do schools and adult service agencies really want parent involvement? Are parents just ungrateful?

If you this might help someone, please Tweet it, send it to LinkedIn, Facebook or other social media. Maybe you want to invite other parents to join us and tell their stories.