Posts Tagged ‘Advocacy’

In the last post, What would you do? | The Case of the Lourdes holy water, I asked for your advice. Here are my next questions:

photo credit: dcosand

What do you do when you go to pick up your child from their home with residencial services and find problems with their personal appearance?

True Story 1: Shoes

Scenerio A

We walk in the front door to pick up Aaron, smile at him and then ask the caregiver, “Are Aaron’s shoes on the wrong feet?”

My husband and I trade “looks,” sit next to Aaron on the couch and change his shoes.

What do we say to the staff person?

Scenerio B

What do we do if Aaron’s housemate is the one with his shoes on the wrong feet?

True Story 2: Socks

We are helping Aaron undress at night. We untie, take off his shoes and find out his socks are turned upside down. The heal of the sock is squished up near the top of his foot causing a red mark. The sock has a grey area clearly showing where the heal of the foot is supposed to go, but it is on the top of his foot.

What do we say to the staff person?

True Story 3: Red Marks on Face

We give Aaron our biggest smiles as we walk in the front door of his house and immediately notice there are red marks near his nose, mouth and the sides of his face.

Mom says, “Aaron has red marks on his face, how did that happen?”

Staff person says, “I saw that, I’m not sure what that is, but I put some cream on his face.”

Mom goes over and traces the marks on Aaron’s face, “Gee, it looks like a scrape or burn.”

Staff is still sitting in her chair, but has put down her cell phone.

Dad says, “It looks like a scrape or burn from a razor. Which razor did you use, the electric razor or straight razor?”

Staff answers she used the straight razor?

Dad asks, “Did you use shaving cream? Was the razor dull?”

Staff person gets very defensive and swears it was a new razor and she used the shaving cream.

So, what would you do?

True Story 4: Roommate’s shirt

We are undressing Aaron for his bath. We notice the t-shirt he is wearing is too tight, we can hardly get the shirt over his head. Aaron bites his hand and is clearly aggravated. When we check, the t-shirt has Aaron’s roommate’s initials inside the collar.

So, what to do?

Aaron, our 36 year old son with the label of autism, has lived in a house with another man for over thirteen years. They have a 24/7 staff person who has the responsibility for his shower, grooming, dressing, and all self-help areas.

These examples have happened not once, not twice, but in the last thirteen years, many times. Again, this was on days when the staff knew we were coming. Who knows how many times Aaron went to his day program with shoes on the wrong feet? How many Saturdays has he been dressed in uncomfortable clothing.

So, what to do?

In the comments please share your thoughts and ask your social networks of Twitter, Facebook, etc. if they have any answers.

Comments

Remember there are no “right or wrong” answers.

Please share your thoughts. What would you say to Aaron? To the staff person? To Aaron’s case worker? To the administration of the company providing residential services? To anyone else?

What attitudes and messages does this convey for the individual, the family and/or the culture?

You can’t fire a person because of upside down socks—so how do you resolve this? How many times do you forgive these mistakes before you give them the boot?

As a parent, how do you choose your battles for advocacy? After all, these people take care of your child every day.

Keep Climbing: Onward and Upward,

Mary

Related Articles:

Home: More than a Place

Caregivers Part 1

Caregivers Part 2

Caregivers Part 3

There is no spoon| Disability Style

Bob Perske is a pioneer, a storyteller and a “Group Man.”

In his book, Circle of Friends, he tells the story of vulnerable people building circles of support.

Bob wrote the following speech to bring together Joe’s Circle of Friends who, even though they couldn’t stop his execution, used citizen advocacy like a jazz band, and blended their talents to prove Joe’s innocence 19 years later.

Bob ends with lessons learned and suggests action steps so Joe Arridy’s life and death will not be forgotten. Perhaps he couldn’t stop the injustice of his execution, but now there is a legacy which can help others.

It is my honor to share Bob’s words:

REFLECTIONS ON THE GROUP THAT FOUGHT FOR JOE ARRIDY

Written by Robert Perske but Voiced by Attorney Anne Treimanis
Pioneer Museum, Colorado Springs, Colorado, May 18, 2011

The Circle of Life:

Fifty-three years ago, I befriended a teenager who worked in a mission hospital in Espanola, New Mexico. His name was Richard Voorhees. He worked a morning shift in the hospital’s kitchen, went to high school and returned for an evening shift.

We got together a lot. He saw me as a mentor. Later, the mentorship was reversed when Richard Voorhees went on to become a skilled professor of sociology and anthropology.

That’s why, in 1992, while doing research in Greenwich Village, New York, Voorhees discovered a poem in an out-of-print book. He sent it to me and said, “I’ll bet this grabs you.” The poem described a warden “who wept” as he watched a death row inmate playing with a toy train on the floor of his cell.

For more information on Joe Arridy

On another occasion, Voorhees taught me how to feel a deep respect for trumpet player, Miles Davis. Davis was uncanny when he played in combos with other great musicians. Davis never played solos. He said, “I play what WE can play; NOT ME. I never play what I can play. I am a “group man.”

I THINK MILES DAVIS WOULD HAVE BEEN MOVED BY THE WAY OUR GROUP HANDED OFF TO EACH OTHER THE SAD MELODY OF JOE’S LIFE.

The Sad Melody of Joe’s Life:

• The poem about the warden who wept was sent to Watt Espy, the archivist at the Capital Punishment Project, in Headland, Alabama.

• Espy researched and connected the poem to the execution of Joe Arridy. He sent a packet of news clippings and detective magazines on the case.

• News reporters and history archivists up and down the slopes of the Rocky Mountains helped with the search.

• A book about Joe Arridy’s life and death was published.

• Pete Strescino, a reporter for The Pueblo Chieftain wrote a review of the book.

• Screen writer Dan Leonetti read the review and the book — and then wrote a screen play called “The Woodpecker Waltz.”

• A California film producer named Micheline Keller read the screen play and shed tears like the warden did.

• Teddi Roberts, the executive director of The Arc of the Pikes Peak Region and the members of her group offered a home base for many who worked on Joe’s case.

• Arc Street Worker, Craig Severa, became Joe’s “foot man,” “bag man” and “on-the-street cheerleader.”

• Attorney Anne Treimanis created a website www.friendsofJoeArridy.com. She did it at her own expense and filled it with every pertinent fact she could find on the case.

• The Arc organized a fund raiser to pay for a dignified tombstone that replaced that awful rusty motorcycle license plate marker on Joe’s grave.

• The Arc gathered 50 of The Friends together for a tombstone dedication ceremony at Joe’s grave.

• Mike Radelet, one of the nation’s leading spokesmen for stopping death penalties came to the ceremony.

• Photographer Antonio Sanchez created a montage of photographs of the group in action.

• Antonio Sanchez and Dan Leonetti talked Denver Attorney Dave Martinez into attending the tombstone ceremony with them.

• Attorney Martinez became interested in the case.

• Then all of the Arridy files were transported to his office in Denver.

• Attorney Martinez worked off and on with all of us for the next three years before writing a petition to Governor Bill Ritter, Jr.

• Terri Bradt, the granddaughter of Attorney Gail Ireland, heard about The Friends and she joined them. Then she wrote a book about how her grandpa rose up and fought like a tiger to save Joe’s life. She described how Ireland managed to get at least six stays before Governor Teller Ammons called the prison warden and ordered Joe to be killed within the next few minutes.

• Lisa Cisneros, Director of the Colorado Alternatives to the Death Penalty (CADP) offered her organization’s support.

• A heart touching song entitled “The Woodpecker Waltz” was written by “Identity Traveler Tom Garcia.

• A lovely, tender-voiced singer named “Molly” keeps the tears flowing when she sings Garcia’s song.

• Attorney Annie Treimanis recorded the song for all to hear by placing it in Joe’s website.

THEN CAME A SCARY DAY

• On October 27, 2010, Attorney Martinez delivered a 523-page “Pardon Application for Joe Arridy to the Governor of Colorado.”

• It contained:
– The Petition and Footnotes (41 pages)
– The Legal Memo (11 pages)
– Exhibits (173 pages).
– Affidavits in Support of the Petition (88 pages)
– Letters of Reference in Support of the Petition (210 pages)

THEN CAME THE GOVERNOR BILL RITTER’S ANSWER

• On January 7, 2011 — exactly 72 years to the day when newspapers announced Joe Arridy’s death — Governor Bill Ritter, Jr. issued a posthumous pardon.

THE GOVERNOR DID NOT STOP THERE

• He went beyond the expected by writing an in-depth three-page press release that went to newspapers and electronic media up and down the state. In it he explained in rich detail why he issued the pardon.

AFTER THE PARDON WAS ISSUED, OUR GROUP EXPANDED

• We were pleasantly surprised when relatives of Joe suddenly came out of the darkness and celebrated in public with us.

THEN CAME ANOTHER SURPRISE!

• We learned that Maria Tucker, a member of the Arridy family was employed as The Special Collections Manager for the Pueblo Public Library.

• Immediately, Dave and the group arranged for the transfer of the Arridy files to Maria who is now archiving them in the Western History Division of the Pueblo Public Library.

I AM AMAZED BY ALL THE SOLID PRODUCTS THAT HAVE BEEN PRODUCED THAT WILL NOT GO AWAY.

• There is a book about Joe Arridy’s life and fate.

• There is a book about Gail Ireland’s legal fight to save Joe’s life.

• There is “The Woodpecker Waltz,” Dan Leonetti’s heart touching filmscript.

• There is the website.

• There are hundreds of facts about Joe Arridy now being sent into cyberspace for the whole world to read and ponder forever.

• There is Dave Martinez’s petition for Joe Arridy’s pardon and the Governor’s response now filed in the vaults of the Colorado State Archives.

• All files on the case have been archived in the Western History Department of the Pueblo Library.

NOW COMES ONE MORE ROCK-SOLID PRODUCT!

• Five new words have been chiseled deeply into the face of Joe’s new tombstone. (See picture above.) They say:

“HERE LIES AN INNOCENT MAN”

• (Craig Severa will probably go to jail for adding them without asking permission from government officials who rule on such things.)

• Tomorrow all of us will go in a caravan to Woodpecker Hill to dedicate it.

IT TOOK 19 YEARS OF STRUGGLE
BEFORE WE COULD PUT THOSE WORDS ON JOE’S TOMBSTONE!

NOW, I SAY LET’S GO FOR ANOTHER 19 YEARS!

• Let’s apply what we learned on other heartbreaking miscarriages of justice.

• By the end of this next segment, I will be 103.

• So let’s get going!

• Here are five issues I would like to see us tackle.

1. WE NEED TO GAIN A CLEARER UNDERSTANDING OF THE HUMAN “WILL TO BELIEVE.”

As a young dad, I lectured my five kids about putting my woodworking tools back on their assigned hooks in the garage after they used them. Once, when one of my tools was missing, I yelled at the son who failed to put it back. I nailed the little guy. I harangued and harangued and I didn’t let up . . . until my wife softly took my hand and led me to the place where I had left the tool!

After sitting in many courtrooms, I have sensed how that wily little rascal, “the will to believe,” can corrupt the true facts of a case.

2. WE NEED TO STOP THE DEATH PENALTY

I shudder when I try to figure out how one mortal man can legally execute another mortal man. The Supreme Court’s ruling, in Atkins versus Virginia in 2002, did ban the execution of persons with intellectual disabilities, but I can’t let myself off the hook until the rest of humankind has this legal protection as well.

3. WE NEED TO DO EVERYTHING POSSIBLE TO SUPPORT AN ORGANIZATION CALLED THE “MURDER VICTIMS’ FAMILIES FOR RECONCILIATION.”

I am deeply touched by a certain fast-growing movement of families whose loved ones were murdered. Members of this group meet together and help one another to stop the agony that comes from screaming for “paybacks” for the killers of their loved ones. Now hundreds of murder victim’s families are helping one another to find a reconciliation. For them:

“Reconciliation means accepting that you cannot undo the murder but you can decide how you want to live afterwards.”

4. WE NEED TO FIGHT FOR THE VIDEOTAPING OF CRIMINAL INTERROGATIONS.

Due to our faulty “will-to-believe” attitudes, we will never “get the truth and the whole truth even with God’s help” when officers and suspects merely swear on the witness stand about what happened in the interrogation room. I believe that:

Judges and juries must be helped to see and hear for themselves everything that went on in the interrogation room. In this digital age it can be done by videotaping.

5. WE NEED TO RESPECT THE GOODNESS IN POLICE OFFICERS

I cannot name a school teacher who became a positive force in my life. But I can name a cop who did. His name was Bob Swanlund. He crossed my path on the inner streets of Denver when I was a teenager. He took to me and I sure took to him. On days off, we pitched a tent on Squaw Peak, the 11,540 foot mountain, 29 miles west of Denver and just in front of Mount Evans. We camped up there at least 40 times in three years. He became a father figure to me. During that time, I even tried to walk like him and talk like him. We stayed close until I went into the service in World War II and he became a department head in the Colorado State Patrol. During that period, he gently drummed into me the basic mission of every good police officer:

“The mission of every good police officer is to insure the safety and security of the neighborhood in which he serves.”

There is no job that is more noble than that.

SO NOW YOU AND I WILL BE MOVING ON.

I plan to go as a true believer:
I believe in God.
I believe in Evolution
I believe that all of us are brothers and sisters who were tied together by a single DNA match millions of years ago.
I believe that our earth revolves around the sun.
I believe there are thousands of solar systems like ours.
I believe that Martin Luther King was right when he said that “the arc of the moral universe is long but it bends toward justice.”

I believe that someday I may meet with Joe Arridy . . . I want so very much to do that.

In my career I came to care about many people like Joe:
So vulnerable
So concrete in their thinking
So unable to figure out all of the complexities going on around them
So trusting of those who understand more than they could
So quick to respond to kindness from others.
So I believe that someday I will be able to get down on the floor together with Joe and his train. . . and both of us will be laughing and shouting:

“Train wreck! Train wreck!

Comments:

Each of us “wills to believe” our government and justice system will find and punish the guilty, and free and protect the innocent. It is unsettling when the system doesn’t work. What are your thoughts?

Should people who have the label of intellectual disabilities have additional protections in the criminal justice system? Are the above action steps Bob suggests, so drastic and costly they cannot be implemented?

Bob’s song reminds me of Jazz, where each musician plays their own instrument and contributes their soul to the song. The members of Joe’s song were attorneys, friends, organizations… each adding their voice to the music. Is there a way to use each of our talents to work for social justice and change? Are you a “Group Man” or “Group Woman”? Is the song of Joe Arridy really a sad song?

Related Posts:

Hope for the Families

Richard Lapointe and more

Unequal Justice

Bob Perske’s website

Keep Climbing: Onward and Upward

Mary

photo credit: Elliotphotos

This morning I saw an egret in our garden.

It stood majestically with its head tilted upward and its slender white body contrasting with the green of the newly planted tomato plants.

The bird looked around for a long minute, and then flew away.

Wait! An egret? This isn’t Florida or South Carolina. The ocean is a thousand miles away.

It got me thinking:

How did an egret end up in our garden? Was there a transportation glitch? Will s/he be back tomorrow? Does an egret worry? How does s/he solve problems?

Thinking, Worrying and ACTION

Like many parents of people with disabilities, I spend most of my days trying to see the world from my son Aaron’s point of view.

Thinking and trying to problem solve;

Worrying I won’t find an answer in time to help Aaron.

Now, I don’t stop there.

After my thinking and worrying,

I take ACTIONS to solve the problems, one step at a time.

This is a full time job. One I didn’t want, one I didn’t plan for, one I have to do every day.

Last week’s problem: Aaron’s 3.5 hour daily Van Ride.

Thinking and Worrying:

Will Aaron have a 90 minute ride today (the legal limit for one way)?

Or, will he and the other 5 people have to sit in the van and wait (and the van ride will actually be 110 minutes) because the staff is too irresponsible to open the doors on time?

Will Aaron chew the collar on his shirt to shreds in the 90-110 van ride? (I have had to buy him a new coat each of the last 3 weeks, he was actually spitting out the metal zipper pieces on one coat.)

Will he bite his hand and draw blood while he is frustrated?

Will he have to go to the bathroom? Have an accident? Get constipated because he is holding it for the 4 hours a day he spends in the van?

Will the van driver sing to him if he starts to get agitated? Will the van driver write Aaron up as a behavior problem?

Will the other people in the van get upset?

Will it be too hot in the van? Too cold?

Last week’s immediate ACTION

Ecological Inventory

I comfort myself that Aaron likes van rides, and Bruce, the van driver, seems to care about him.

After I had my thoughts together, I checked the documentation on the pick-ups/delivery times (the daily chart/notebook I wrote into the ISP), analyzed Aaron’s van behaviors, talked with the staff at both Aaron’s house and day program, made several phone calls, wrote a couple emails about the problem, found out a couple key people were on vacation, make a couple more phone calls….

Immediate Solutions I hoping for:

1. The staff of the day hab center (drop off point) now open their doors on time–removing the extra 15 minute wait time.

2. The van is repaired (storm damage) for our new Goodwill/Easter Seals program and available to pick up Aaron.

3. Aaron won’t have to be on the other van at all with the 5 other people.

4. Aaron will get a direct route to his new program which is 21 miles away, reducing his 4 hour daily ride to 2 hours.

“For every action there is a reaction.”

Long Term Solutions for the Transportation Problem

In the next few weeks, I’m hoping the van for the Goodwill/Easter Seals program is repaired from storm damage and will transport Aaron.

I know the never-ending cycle of thinking-worrying-actions will repeat:

Will the new van driver be as good as Bruce? Will s/he care about Aaron?

Since Aaron and his housemate will be taking different vans, the residential staff will have two different pick-up/drop-off times. They don’t have autism, but they don’t do well with change. (Little humor there.)

A shorter van ride for Aaron means the home staff will have to adjust their work schedules and add an extra half hour in the morning and evening. They will see this as Aaron messing with their day. Since they get paid by the shift, not hour—no extra pay, just an extra hour of responsibility.

I know, I know… I can hear many of you saying: “They work for Aaron, they should do what is best for him.” And, you are right. That is the bottom line and the reason Aaron will have the more direct, shorter route. But that doesn’t mean they will like it, or do it with a smile.

Short-term and Long-term Problems

Each day, I work a little on the long-term solution to Aaron’s residential staff issues. Some problems can be addressed in a week, unfortunately, others take years.

I have written about some of the residential issues before: Our house of cards| Disability style (Part 3) and “It’s not my job.”| Caregivers (Part 3)

And, while I can pull a Scarlett O’Hara and say, “I’ll think about that tomorrow.” My child is waiting for me to fix this.

If I don’t do it, no one will do it.

A Parent’s Life:

I’m writing this because I want to believe the egret was a “sign.”
I want to think the wonder of the unexpected, the unusual, the beautiful will help me focus on the good, so I can stop thinking and worrying about Aaron and the bad things that still need action.

Live for Today

I tell myself—quit thinking and worrying. Just enjoy! Just remember the sight of this regal bird and the unexpected pleasure it brought.

I remind myself–that’s enough thinking and worrying today. Get a cup of tea; take a bath; read a book with a happy-ever-after …and thank God for an egret.

Because even after you finish your thinking and worrying about the transportation issue, there is still the issue that one of the staff people doesn’t give Aaron a bath every night…and the million of other issues that need action.

There will ALWAYS be more battles to fight.

There will not always be more days to just enjoy life.

Maybe my advocacy actions will give Aaron a shorter, safer ride to his day program. And maybe I’ll be able to chip away at the residential problems, and maybe Aaron will get a bath tonight.

I can’t fly away like the egret.

But, maybe today I can stop thinking and worrying–at least for a few moments. And maybe that is the exact ACTION I need.

Your Turn:

In the comments tell us: What are you thinking about? Do you wish you could fly away from your problems? Have you seen something today that was unexpected and brought joy? Do you think and worry? Or, do you think, worry and–take action?

Keep Climbing: Onward and Upward.
All my best,

Mary

Quote: “You can always tell a mother. She’s the one who wears her heart on the outside of her body.”

Mom and her son in Japan

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

RELATED POSTS:

I’ve spent a lifetime trying to get in touch| Wretches and Jabberers (2)

Until Eternity| Anne McDonald

I love Aaron| I hate Autism

The Right to Communicate (2)| We are the experts

What if? | Bob Williams

Remarkable Parents and Advocates who Never Give Up

Please add your thoughts in the comments:

Do movies like this make people with autism more human? Like Tracy, have you ever felt, “a wave of emotion”?

Autism Day at the Opera

April is Autism Awareness month. April 2nd is designted World Autism Awareness Day by the United Nations General Assembly.

World Autism Awareness | Gone Amuck

For the last week, I’ve been following the comment streams on Twitter (#Autism, #ASD, #WAAD…) and other social media outlets like Facebook… and I wonder if the whole world is nuts.

My son is 36, has autism and we are desperate for help. So I appreciate the need for autism awareness and DIRECT ACTION.

For autism awareness day, I’ve learned some people are buying blue mascara and lipstick to spread “awareness about autism.”

Others are using April 2nd as a “retail therapy” day to buy new clothes in blue.

How will Autism Awareness Day impact the lives of people with autism and their families?

For the life of me I can’t imagine why blue lights at the Sydney Opera House, The White House, Empire State Building or the house next door will change a thing–except for the blue light bulb retailer.

Put Time and Money where your Mouth is

It makes more sense to me, that the expense of buying blue lights, hiring a team of workers to install and operate those lights for one day–is just dumb and a waste of opportunity.

Using those same dollars, the Opera House could invite families or parents to an evening of the opera. Sure, the Sydney Opera House might not get the same press, but the impact would be direct and measurable. Real families would have the treasured opportunity for a night of respite.

I understand the White House is meeting with some advocates for autism which is an action step–much more useful in my opinion to a blue illusion.

The Empire State Building–well, there were those romance flicks with the hearts on Valentine’s Day, but really.

Action–not Hype

Now good people and advocates are working hard for all this autism awareness, and I know my skepticism sounds like sour grapes or something mean spirited.

I’m just tired of being used and being the victims of charity.

Past Experiences with the Charity Model and hype

One time our family was on a trip to the Smokey Mountains. My husband Tom, an avid golfer, passed a golf course which had a huge sign over the gate “Welcome Special Olympics.”

Tom went to the front desk and asked if Aaron, our son with the label of autism, could ride in the golf cart as he played golf.

The desk clerk looked confused. Tom said Aaron would be sitting next to him and would not even be on the course. He also told him Aaron has accompanied him on other golf courses and it worked out fine.

As the clerk continued to stammer around–Tom pointed to the “Welcome Special Olympics” sign.

The young man shook his head,

“Tomorrow, our Special Olympic fundraiser is for radio/TV personalities, the Governor and all kinds of influential people coming to play golf. NOT–those kind (pointing at Aaron). This is our public relations and publicity event for the year. It isn’t for them. We don’t allow them on the course.”

Real People–Not Causes

At a time when getting services for children and adults with autism and their families is desperate, my hope for tomorrow is that people will spend a couple minutes with actual people who have the label of autism.

If you want to dress up in blue from head to toe, with blue eye shadow and lips, more power to you. But somewhere in the day, actually touch a real person. Make a difference in an actual life.

Make the Autism Awareness Day, more than a media moment.

Take the opportunity to begin change–one on one.

Keep Climbing: Onward and Upward
All my best,

Mary

What do you think?

Are you wearing Blue? Are you going to spend a couple minutes with an actual person who has the label of autism?

Norm Kunc

Norm Kunc changes lives.

I would spend the whole year teaching university students and teachers about the need for inclusion, normalization, self-advocacy, people first… and they would nod their heads (or scratch their heads at the crazy lady), pass their tests, and go on with the way they always did things.

Norm Kunc came to campus, spoke to these same students and in fifteen minutes–he rocked their world.

That quick–his message is that powerful.

Here is Norm and Emma Kunc’s website. I’ll write more about them in another post, but if you get a chance book them or attend one of their presentations. It will change your life.

Here is Norm’s Credo of Support. It is not the same as hearing him in person, but the video message shows the power of words and the talents of self-advocates. When Norm introduces the video he says the words just poured out of his heart.

Here’s hoping it touches your heart too.

Keep Climbing: Onward and Upward

Mary

Talk about it!

What did you think of the Credo of Support? Do you think the message is stronger coming from self-advocates? What is your personal credo? Can you think of ways people with disabilities can give their own message?

Would you like to hear more about Norm and his wife Emma’s work?

photo credit: Leonard Chien

WE THE PEOPLE….

Each week the Arc (formerly, the Association for Retarded Citizens) reports on what is happening in Washington, DC. The Arc monitors the public policy and legistlative process so that it may advocate for people with disabilities and their families. UCP (United Cerebral Palsy), TASH (formerly, The Association for Persons with Severe Handicaps), and several other national organizations all work together to advocate for our children.

Here is the Arc report for this week: notice the depth of the issues. Also notice most of the news is NOT GOOD for us. Each week there is another detailed report. I am thankful these organizations keep up–that is worth my dues.

This is a difficult time to give our children with autism and other severe disabilities the day-to-day care they need PLUS worry the sky is falling on the support we depend on.

Unless you are independently wealthy, it is a humbling experience for parents to be at the mercy of the system. We need to keep informed and do what we can.

“Think globaly, act locally.”

Here

Subject: The Capitol Insider for the Week of March 14, 2011

The Arc Public Policy
Update Profile

March 14, 2011
Vol 16, Issue 9

Action Alerts

None.

Major Events Last Week

Medicaid/Health Care Reform – Kansas Governor seeks to block grant Medicaid and cuts services

Kansas Governor Sam Brownback has written HHS Secretary Sebelius requesting a waiver of the Medicaid maintenance of effort (MOE) requirements and a full Medicaid block grant. The MOE requirements are in place to make sure that states do not drop people from eligibility before the Medicaid Expansion takes place in 2014. Many Republican Governors have asked for the flexibility of a block grant so that they can cut the Medicaid program and not comply with the regulations.

Social Security – DPC staff testify at Senate Appropriations Committee on impact of proposed spending cuts

On March 9, the DPC’s Marty Ford testified before the Senate Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies in her capacity as Co-Chair of the Social Security Task Force of the Consortium for Citizens with Disabilities (CCD). She testified on the Fiscal Year 2012 budget request for the Social Security Administration (SSA) and the impact of possible cuts to the Fiscal Year 2011 budget on the agency’s administrative resources with which to process claims for people with disabilities and seniors. In describing the impact of the House-passed continuing resolution (CR) for the remainder of FY 2011, she stated, “If SSA is forced to furlough employees to address the full $430 million shortfall from the current CR spending level, it will result in nearly a month of furloughs, having devastating effects on service to the American public. In one month of furloughs, SSA would complete 400,000 fewer retirement, survivor, and Medicare claims; 290,000 fewer initial disability claims (with processing time increasing by a month); 70,000 fewer hearings; and 32,000 fewer continuing disability reviews. In addition, H.R. 1 severely cuts funds for vital information technology (IT) improvements and funds to build the critical new National Computer Center, which must be built to protect Social Security electronic information and infrastructure.” Read her full testimony at:

http://appropriations.senate.gov/ht-labor.cfm?method=hearings.download&id=f7b3c5f6-ec78-4299-bf55-af8e7ee780d7

Employment – The Arc submits testimony for the record for Senate hearing on employment of persons with intellectual disabilities
On Wednesday, March 2, the full Health, Education, Labor, and Pensions (HELP) Committee held a hearing, entitled, “Improving Employment Opportunities for People with Intellectual Disabilities.” Lynnae Ruttledge, Commissioner of the Rehabilitative Services Administration, and Sharon Lewis, Commissioner of the Administration on Developmental Disabilities (ADD), testified along with a panel consisting of a state employment agency director, a private employer, a self advocate, and a researcher. The hearing focused on the barriers to employment faced by individuals with intellectual disabilities and offered criteria for and examples of integrated, competitive employment. All panelists strongly supported “employment first” principles. Read The Arc’s statement at: http://www.thearc.org/document.doc?id=2983
Read the hearing testimony and watch the proceedings at:

http://help.senate.gov/hearings/hearing/?id=536891af-5056-9502-5d9c-9a3e588e3214

Health Care Reform – Federal rules released on states waivers for opting out of key health reform provisions

The Department of Health and Human Services (HHS) and the Treasury Department released rules Thursday outlining how states could apply for Section 1332 waivers. These waivers would allow states to opt out of key health reform provisions like the exchanges and individual mandate if they meet certain benchmarks for affordability and coverage. In current law the waivers begin in 2017. However the Obama Administration is supporting moving the timeline up to 2014. Senator Wyden (D-OR) introduced a bill in the previous Congress to make the change.

ADA – Justice Department settles with OR school district in Autism service dog case

The U.S. Department of Justice reached an agreement with the Hillsboro School District in Oregon so that a student with autism may bring his trained dog into the classroom for a trial period. The student’s parents had been trying to get the district to allow the dog to accompany the child for three years. The dog distracts the student when he is about to engage in behavior that could be dangerous. To read the press release about this case, see:

http://www.justice.gov/opa/pr/2011/March/11-crt-285.html

Major Events Ahead

FY 2011 Appropriations – House to vote on another short term funding bill; includes $6 billion in cuts

As soon as Tuesday, the House is expected to vote on a three-week Continuing Resolution (CR) that would cut more than $6 billion from current discretionary spending levels. The Senate is expected to vote later in the week. This latest CR will keep the government running through April 8 after the existing two-week CR expires on March 18th. This would be the sixth continuing resolution since the start of the current fiscal year on October 1. House conservatives are urging their leadership to make deeper cuts and defund the health care law as part of the CR. Negotiations continue between the Administration, House, and Senate leadership on completion of the FY 2011 appropriations.

Long Term Services and Supports/ Health Care Reform – House to hold hearing on the CLASS program this week

The Health Subcommittee (R-PA) of the House Energy and Commerce Committee will hold a hearing titled “The Implementation and Sustainability of the New, Government-Administered Community Living Assistance Services and Supports (CLASS) Program.” The Arc and UCP strongly supported passage of the CLASS program as part of the Affordable Care Act. For more information on the hearing see:

http://energycommerce.house.gov/hearings/hearingdetail.aspx?NewsID=8332

For more information on the CLASS program see:

Http://www.advanceclass.org

Announcements

Abuse and Neglect – New York Times publishes expose of state owned group homes in New York

A front page story on Sunday, March 13, entitled “At State-Run Homes, Abuse and Impunity” exposes significant abuses by direct care workers. It specifically highlights the difficulty in terminating direct care staff with documented cases of abuse and neglect due to the state’s public employee union rules. Read the article at:
http://www.nytimes.com/2011/03/13/nyregion/13homes.html?_r=1&scp=2&sq=disabled&st=cse Readers are encouraged to add their comments to those already posted at:

http://community.nytimes.com/comments/www.nytimes.com/2011/03/13/nyregion/13homes.html?sort=oldest

————

Please note that you can view previous issues of the Capitol Insider, at thearc.org anytime by choosing “Capitol Insider” under “Public Policy.”

If you have any questions, feel free to contact me at:
mailto:acosta@thedpc.org

Sincerely,

Annie Acosta
Director of Communications and Grassroots Advocacy
Disability Policy Collaboration

Keep Climbing: Onward and Upward
All my best,

Mary

Please comment:

What issues do you care about? Is there anything here you will click on a link and learn more about? Do you think it is important to keep up on the national issues?

Bob Perske by Joe Arridy's Grave

On January 7, 2011, Colorado Governor Bill Ritter, Jr. issued a “posthumous pardon” to Arridy, one of the five wrongly executed people with intellectual disabilities.

BOB PERSKE:

Pastor to People with Disabilities and their Families

Bob Perske is one of the most gentle and positive people I know. He lives God’s message to care for the “least of my brethern.”

It might surprise people to know Bob hangs out with criminals on death row.

In a previous post I shared his “history of people with disabilities and hope for families.”

Because Bob understands the history of people with disabilties, he knows FEAR was one of the main reasons for removing people from their families and locking them up in institutions, away from society. Fear is still one of the main reason people are excluded from quality lives in the community.

The world in which we live is not always safe, secure, and predictable. It does not always say “please” or “excuse me.” Everyday there is a possibility of being thrown up against a situation where we may have to risk everything, even our lives. This is the real world. We must work to develop every human resource within us in order to prepare for these days (Robert Perske: “The Dignity of Risk.” 1972).

Bob is still hopeful for families, but he wanted to share his recent testimony about people with intellectual disabilities who have been convicted of serious crimes they didn’t commit. Crimes they confessed to because they wanted to make the police officers happy or get them to stop the interrogations. Crimes they didn’t even understand.

Everyone wants people who kill, steal and rape people behind bars. Everyone wants dangerous people off the streets. Everyone wants JUSTICE for the victims. And, Everyone wants the right person convicted.

But Bob Perske and others ask:

“What if the person who confesses to the crime is a person with an intellectual disability?”

Certainly, just because a person has the label of intellectual disability doesn’t make them innocent–but it also shouldn’t make them vulnerable to giving false testimony in our criminal justice system.

Bob writes:

Although I did a lot of writing about kids and families earlier, deep in my heart I think they also need to be aware of futures where they can be misunderstood by interrogators and they need to be alert and ready for these grim possibilities.

What can we do?

ELECTRONIC RECORDING OF CUSTODIAL INTERROGATIONS
Robert Perske, Citizen Advocate
Persons With Intellectual Disabilities

Rperske@aol.com; www.robertperske.com
www.friendsofrichardlapointe.com
www.friendsofjoearridy.com

CT: REGARDING SB NO. 954 AN ACT CONCERNING THE ELECTRONIC RECORDING OF CUSTODIAL INTERROGATIONS (March 9, 2011)

Dear Committee Members:

For the past 34 years, I have served as a worker and author on cases involving persons with intellectual disabilities who were coerced into confessing to major felonies they did not commit.

I am a member of The ARC of Connecticut and The ARC of the United States.

I am the author of “Perske’s List: False Confessions from 75 Persons with Intellectual Disabilities.”

It will be published in September’s Intellectual and Developmental Disabilities, a journal of the American Association on Intellectual Disabilities. (AIIDD).

The article is 24 pages long. It shows that:

• 65 have been legally exonerated.
• 29 have been exonerated by DNA tests.
• 5 are now headed for court hearings thanks to “Innocent Project” groups.
• 5 have been so wrongly executed they will always be painful to justice-loving lawyers when they think about them.
• 1 of the five wrongly executed was Joe Arridy. On January 7, 2011, Colorado Governor Bill Ritter, Jr. issued a “posthumous pardon” to Arridy.
• I predict that Richard Lapointe of Connecticut will someday be added to this list.

The time has come when judges and juries should be helped by advanced video technology to see everything that went on in an interrogation room. Until they can do that, our justice system will be tainted.

Respectfully Submitted

Robert Perske

RESOURCES:

Check out Bob’s articles, books, websites or give him a call.

Closing Thoughts:

As parents we worry about our children being victims. Few of us imagine our children as the aggressor.

What can be done to give them better protection, a more fair and equal justice? Because sometimes even the people who have confessed to being the aggressors–are Victims.

Electronic equipment seems like an easy answer to me. I would think it would help protect the rights of everyone, including the police officers.

Keep Climbing: Onward and Upward
All my best,
Mary

Discussion: These are life and death issues. Would video technology and electronic recordings of custodial hearings bring better justice to everyone? Is this worth the cost? What do you think of Bob’s role as a pastor and “citizen advocate”? How can we make our children less vulnerable?

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.