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!
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?
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.
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.
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….
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.
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.
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.
Wretches and Jabberers is a movie about Tracy Thresher and Larry Bissonnette, two men with autism, as they embark on a global quest to change attitudes about disability and intelligence while promoting the importance of presuming competence.
Wretches & Jabberers opened nationwide on April 2nd in 10 U.S. cities: New York City, NY; Los Angeles, CA; Washington, DC; Philadelphia, PA; Kansas City, KS; San Diego, CA; Denver, CO; Dallas, TX; Columbus, OH & Miami, FL. Six of the 10 cities SOLD OUT, while others were at near-capacity!
If you can’t attend the movie, perhaps you can still support Autism Awareness Month and The Autism Society.Click here to BUY THE SOUNDTRACK ON ITUNES I have also heard the Soundtrack is available at Barnes and Noble Stores.
The soundtrack features 20 original songs written and produced by J. Ralph in collaboration with: Antony, Devendra Banhart, Paul Brady, Bonnie Bramlett, Vashti Bunyan, Martin Carthy, Judy Collins, Lila Downs, Vincent Gallo, David Garza, Ben Harper, Scarlett Johansson, Nic Jones, Norah Jones, Leah Siegel, Carly Simon, Stephen Stills, Ben Taylor & Bob Weir.
Carly Simon: The Letter
“I’ve spent a lifetime trying to get in touch”
LYRICS: The Letter
Did I tell you
Sorry it took so long
I’ve spent a lifetime
Trying to get in touch
Just wrote you a letter
For the very first time
I mailed it to you
Did it arrive
I keep a diary that no one can see
It’s got no gold key or paper at all
I filled those pages through all my ages
With all that I’ve seen and all that I’ve learned
I wrote to tell you
Today I got a dog
I named her Hazel
Just like your mom
She loves swimming around
Out there in the fog
She’s really happy
She reminds me so much of you
I keep a diary that no one can see
It’s got no gold key or paper at all
I filled those pages through all my ages
With all that I’ve seen and all that I’ve learned
Check out what people have been saying about Wretches & Jabberers:
Gerardine Wurzburg’s Wretches & Jabberers may be the best film you’ll see on a subject you probably want to avoid — although you’d be wrong about that. Yes, it’s a documentary about autism but it’s also nearly perfect in doing what an advocacy doc should do: show rather than tell, entertain rather than preach. If this is your first exposure to the world of autism, it will be an eye opener. Kirk Honeycutt, Hollywood Reporter
When Tracy Thresher has something to say, he uses his right index finger – and a special computer that gives voice to what he types. Hunched over the device, he begins. Tap, tap, tap. Tap, tap, tap. Tap, tap, tap, tap…. Autism silences the 43-year-old Vermont man. He doesn’t speak. But he has a message for the world about how people should think of people like him. So he taps it out.”To think intelligence, even if you see wacky, goofy behavior. We are simply intelligence, shown in a different way,” comes the robotic voice, broadcast out of his computer… John Curran, Associated Press
Wretches and Jabberers Explodes Myths About Autism.
The new documentary Wretches & Jabberers follows the journey of two autistic men—Larry Bissonnette, 52, an artist; Tracy Thresher, 42, an advocate—as they travel the world, attempt to banish the myths about autism, and reveal its global face. PARADE spoke to the pair behind the film—Academy-Award-winning director/producer Gerry Wurzburg and co-producer Douglas Biklen, Dean of the School of Education at Syracuse University. Joanne Chen, Parade Magazine
Wretches and Jabberers is a buddy movie, a road trip movie and a moving adventure. But this new film is different than your typical mainstream fare. The documentary stars two autistic friends and advocates who do most of their communicating through typing. The story follows Larry Bissonnette and Tracy Thresher, as well as their assistants Pascal Cheng and Harvey Lavoy, as they travel around the world, meet other autistic people, and advocate for autism rights. John Hockenberry “The Take Away Radio Show.”
And Larry’s Blog with more of his thoughts and stories.
Summary:
I can’t wait to take Aaron to see the movie this Saturday. As an added bonus, the new Director of the Day Program for Goodwill/Easter Seals is going to go with us. I have to say, this is the first time since Aaron graduated from High School that I am hopeful Aaron will begin to communicate again with facilitated communication (FC).
I am reminded of the quote from the early days of FC:
“Not being able to speak, is not the same as not having anything to say.”
But I’m preparing myself.
Aaron has not used his communication system in over 10 years. Ever since his facilitator moved away and …. long story.
I have been so moved by Larry and Tracy, my faith in Doug Biklen, the W&J trailer, the songs from the Soundtrack and the pre-publication publicity.
Sometimes a movie, a song, a story about hope and a lifetime of endurance is so moving it can take your words away: “Being able to speak, doesn’t mean you will find the right words.” Yep, I’m one of the Jabberers.
Keep Climbing: Onward and Upward
“When we stop to lift one another up on the climb, we all reach a higher place.”
All my best,
Mary
Parts of this were quoted from the Wretches and Jabberers Newsletter: Volume 8 (April 2011)
Comment:
Please add your voice to this story:
What phrase in the song, The Letter, did you find the most powerful? Will you see the movie, buy the Soundtrack, or otherwise support Autism Awareness month? Can you imagine what not being able to speak with words must be like? Anything else you want to add?
I’ve been getting questions about Facilitated Communication. In the book Far From the Tree, the author Andrew Solomon interviews Ben Lehr who uses FC. Sue Lehr, of course, is one of the pioneers who works at Syracuse University and is a role model to us all. So, here is a review of the movie “Wretches and Jabberers” which features two men who use FC.
Wretches and Jabberers Review| A Jab to the Heart
Last Saturday, Aaron and I went to see Wretches and Jabberers. The director of Aaron’s new day program at Goodwill/Easter Seals, Miss P., went with us.
The movie raised so many emotions, lessons, buried feelings and experiences I literally couldn’t write or even talk about the movie for a couple days. The movie was a Jab to my heart and my memories. Here are a few of my thoughts:
Past Experiences with FC
In 1993 wrote about our story in First Hand: Personal Accounts of Breakthroughs in Facilitated Communicating (FC) edited by Anne Donnellan and recently (2011) in Real People, Regular Lives: Autism, Communication and Quality of Life by Sally Young. That is a very long story full of joy, sorrow, despair, hope and many shattered dreams.
Current Experiences with FC
The good news is when we got home from the movie, I sat with Aaron at the computer and for the first time in probably 10 years he typed with FC (Facilitated Communication).
“I OK” “Hi Mom” –just a couple letters–but it was a start.
Even better news is Miss P. said she would invite the technology people at Easter Seals to work with Aaron and see what kind of communication system we can set up.
Because Miss P. cared enough to give up her Saturday and go with us to Wretches and Jabberers, we have a common framework to begin our time together. There is no value I can put on this. It is priceless and HOPEFUL with a capital H.
Wretches and Jabberers Movie Review
There are two moments from the movie that are keeping me up at night.
1. Tracy is advocating in the Senator’s office about his concerns that budget cuts will mean he will remain homeless and reduce his support services. He feels a “tidal wave of emotions.”
2. At the end of the visit in Japan, Miki and Naoki Higashida say goodbye to the group and get into the elevator.
Tracy the Advocate
Most self-advocates, parents and professionals can understand Tracy’s wild emotions when talking about not getting the services he needs and his fears of getting the critical support system of his facilitator and support staff cut.
Unfortunately, the US Congress announced it is cutting Medicaid by 20%–yep, rather than tax the rich they are going to cut the programs for people with disabilities, the poor and the elderly–people like Larry, Tracy and Aaron. The Arc sent this alert (click here).
The nightmares and angst Tracy felt is the same that makes me wring my hands, stay awake at night…. I join Tracy in jumping up and down in frustration.
Tracy’s chance of getting enough funding so he won’t have to be homeless is worse now than when the movie was filmed. God Bless Us All as we face these life/death cutbacks.
Miki and Naoki Get on Elevator
In Japan, Naoki was one of the young people who type with support. (See picture above.) His Mom, Miki, coordinates the support system for her son. She is his facilitator, his personal care attendant, his friend and companion, his teacher, his speech/language/communication partner and she has had little support.
In the US, at least for the present, we have IDEA and mandatory school programs. But things are different in Japan, different in many other cultures.
This heroic Mom has had to research Facilitated Communication and everything else. There weren’t a lot of professionals in the film who were helping her. She seemed to be teaching the professionals and seemed very much alone.
As the presentation was over, and Tracy, Larry and the team were getting ready to go back to the US, the Mom gathered up her son and was getting into the elevator.
She waved, she smiled, and then… there was a moment when she choked up. I’m not sure if there was an actual tear (because my tears were filling my eyes).
There was a “look” in her eye. It said, “This meeting was wonderful. I finally found people who understand. But now it’s over. They are leaving the country and Naoki and I are back to being on our own.”
Parents know that “look”
Doug Biklen, one of the producers of the film, and I were on the TASH board together. For many years, I went to the TASH conferences and met fabulous leaders, educators, researchers and other parents who were working for people with severe handicaps. Together we were changing lives. We were doing important work and the lives of people with severe intellectual disabilities were full of hope and promise of an inclusive future where people could live, work, go to school, have families and friends in their home communities.
Each year, my friends and I would sell buttons, raise money, beg, borrow, and barter our way to spend a long weekend with these experts and advocates at the conference. We were up from dawn to late at night learning everything we could–picking the brains of anyone who would listen. It was exhilarating; we would gather ideas and hope. Then the conference would be over. We would give our farewell hugs, get into the elevator, and begin the trip back to our homes and the status quo of the lives we left behind. We had to become the warriors for our children. If we didn’t do it, no one else would.
Because of what we experienced at the conference, we were different; we had new ideas and hope. But there was no one locally to hold our hands. There was no one who would stand by us and help. There was no one who even knew what we were talking about. Almost none of the professionals who had the power to make change were helping us. When we accomplished something for our children, the “researchers” would include us in their books and scholarly papers, but mostly we were abandoned to make things happen by ourselves.
I know the look in Naoli’s Mom eyes. I have seen that look in my own eyes. I have seen the look in other parent’s eyes.
Here is a short video of Larry and Tracy at the TASH conference in Denver
Conclusion
Wretches and Jabberers is a powerful movie. Be prepared to feel strong emotions. Expect to learn new things aWretches and Jabberers Movie will be shown in another 100 cities around the US. Get a ticket and let us know what you think.
Keep Climbing: Onward and Upward.
All my best,
Mary
Due to Popular Demand, Wretches and Jabberers will be seen in 100 cities:
May 12th, 2011 at 7:30PM
The first cities have been announced in our “100 Cities. One Night For Autism.” Event being held on May 12th, 2011 at 7:30pm! Be sure to check out future editions of our newsletter for specific theaters and additional cities! Here is the list, in no particular order:
Derry, NH – Bijou, OR – Annapolis, MD – Birmingham, AL – Fort Collins, CO – Athens, GA – Des Moines, IA – Moundsview, MN – Asheville, NC – Allentown, PA – Greensburg, PA – Columbia, SC – Nashville, TN – Knoxville, TN – West Jordan, UT – Midlothian, VA – Eau Claire, WI – Grand Rapids, MI – Columbus, IN – Lansdale, PA – Washington, DC – Chicago, IL – Memphis, TN – Oakdale, MN – Lincoln, NE – Pickerington, OH – Sheboygan, WI – New Berlin, WI – Rothschild, WI – East Brunswick, NJ – East Windsor, NJ – West Palm Beach, FL – Dedham, MA – Farmingdale, NY – Providence, RI – Huntsville, AL – Plainfield, IN – Baton Rouge, LA – Kalamazoo, MI – Louisville, KY – Ypsilanti, MI – Toledo, OH – McCandless, PA – Fairfax, VA – Bakersfield, CA – Honolulu, HI – Lafayette, LA – Whitter, CA – Laguna Niguel, CA – Sacramento, CA – Colorado Springs, CO – Durham, NC
