Bob Perske| The Song of Joe Arridy

I’m Memory of Bob Perske, a real hero to families and people with disabilities.

Here lies an innocent man

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.”

Joe giving his train away before his execution.

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

All my best,

Mary

Bob we love you.

On the last day of Junior School| Inclusion

Aaron and Tommy on Cross Country Team

Aaron, Tommy and Cross Country Team

Tommy is in the second row. Of course, Aaron is the red head in the middle of the picture who refused to look at the camera.

My last post Teachers| Inclusion or Segregation started an interesting discussion. It reminded me of the letter I wrote to the Principal of Hopewell Junior School:

Letter to Principal on Last Day of Jr. High School

June 6, 1990

Principal, Hopewell Junior School
Lakota School District
West Chester, Ohio

Dear Dr. Taylor,

Recently my nephew, Robert, started laughing hysterically when I mentioned his cousin; Aaron was going to be on the school cross-country team. “What’s Aaron going to do? Bite and push all the kids at the starting line so he can win?”

I was deeply hurt but tried to explain it wasn’t all about the winning but the trying that was important. Robert was shocked! “But why would you even try if you knew you couldn’t win?”

Different Kinds of Winners and Losers

I explained there were different kinds of “winning.” Aaron has autism but he also has the need for belonging to a group and regular exercise. Robert stared blank-faced, and after several more minutes I changed the subject. To this gifted 14 year old, who has above-average good looks, athletic ability and intelligence, this made no sense. Sigh.

Robert, Tommy (Aaron’s brother) and their peers are the people on whom Aaron will always be dependent. They are the next generation of parents, professionals, neighbors and…coaches.

The experiences and value systems they are developing in school, in the community, on the cross country teams–right this minute—will directly affecting Aaron’s future.

Robert has never gone to public school, run on an inclusive cross-country team or been friends with people with physical and intellectual challenges. Obviously, even his experiences with his cousin have made little impact. I think that is a deficit in his education. It will impact his future as a member of his family and community. It’s not a visible “D” on his report card, but it is an invisible “deficit” and loss in his life.

Who are the Winners and Losers?

How do you teach that the person who comes in first is not always the biggest winner? Can children learn it takes courage for not just children with challenges, but for all the boys and girls who finish near the end?

WINNERS are sometime those who RISK losing…being laughed at…coming in last.

Learning and Teaching Values

Each nation decides what is normal, average and gifted. They decide who are the winners and the losers.

Recently, we’ve been stunned by news accounts which demonstrate how the values in Iran, China, and Russia are different from our own. We have also witnessed incredible changes in philosophy, public opinion and policy. Values are fluid, changing and dependent on multiple factors.

Shaping those values and rights is something we do every day, consciously, or unconsciously. Sometimes value changes are dramatic like the Berlin Wall coming down–winners. Sometimes value changes are dramatic like Tiananmen Square-winners/losers depending on your point of reference.

The rights of citizens are gifts from a nation to their citizens. These rights and freedoms cannot be taken for granted.

The tragedy of having a child with a disability has nothing to do with the child, a syndrome, disease or label. The tragedy comes from the struggle with people in your family, community, country who decide if they will accept and support your family or rejected and isolate you.

Whether the differences are overlooked or emphasized. Whether the winners are only the ones who come in first.

“But Wait until Junior High”

When we went to court in 1979 (Cincinnati Public Schools) to allow Aaron to go to the public school, the doomsayers predicted, “MAYBE it would work in elementary school…But wait until Junior High!”

The teachers care only about academics, the sports are so competitive, the kids are so cruel–during lunch they will put drugs in your child’s milk”

They hatefully wanted to frighten us into accepting the segregated school and a segregated life.

Last Day of Junior School

Today is our last day at Hopewell Junior School and happily those predictions are laughable. Thanks to the vision and caring of the administration, staff, teachers–especially Miss Linda Lee–and the other students in the school Aaron and his classmates have had a great experience.

They are the first class of people with significant disabilities who have been able to attend a regular public school. It has been a new experience for everyone and it has been a success.

Aaron has had many opportunities for learning functional skills which will help him live, work and participate in the community. But more importantly, he has had opportunities to be “included as a regular student.”

There were some who wondered why a kid, who can hardly talk, much less sing, would practice and perform on stage with the school chorus?

Why someone who has severe balance and flexibility problems would try to participate on the cross-county and track team?

They wonder if it be would have been safer if Aaron rode the “handicapped bus” with an extra aide, instead of the regular bus with his brother?

They will never understand why we hate Special Olympics?

These parents, students and community members can’t figure out what could Aaron possibly get out of an assembly, or six minutes in regular homeroom?

The answer to most of these questions then and now is really WE Don’t KNOW!

The schools are changing the future

Aaron has gifts, strengths and talents and when given opportunities for learning–determination and pride. We do have observations.

Each time a schoolmate says, “Hi” and forces Aaron to give eye contact, each time a teammate said, “Go Aaron, you can make it!” or gives him a high 5–it is a victory.

Each time they see Aaron make it over a creek or down a hill we celebrate.

Every time they see him complete his vocational job stacking juice cartons in the lunchroom, sorting the silverware, filling the pop machines–it is a value enhancing experience. Aaron can learn to do jobs, that if he didn’t do them, someone else would.

This year Aaron’s picture is in the yearbook next to his brother’s. He and Tommy’s picture is in also with the athletes for Cross Country and Track. A First!

A general education high school student cared enough to help Aaron participate in a bowling league. And then, he took him to the Eighth Grade Dance whose theme was “That’s What Friends are For.” A First!

Aaron’ name (granted it was a name stamp) was on the class t-shirt. A First!

Aaron got a school letter in cross country and track, including being in the team picture. A First!

Aaron got his first paycheck from his vocational training site, Grote bakery, allowing him to become a taxpayer. A jump-up-and-down first!

A whole lot of Learning

To me, these shifts in school philosophy, values and focus on inclusion are every bit as dramatic as the Berlin wall coming down.

In the current evolution to merge special and general education, to change special separate classes into a system of inclusive classes with support services for ALL children–the new ideas, opportunities, choices, risks and freedoms are truly exciting.

Hopewell Junior School has given Aaron and Tommy the chance to be winners. The chance to show that sometimes the biggest lessons are not just in the classroom.

Their success has been a victory.

Hopefully, in this human race, our world will become a better place because of the mix of people who grow up more fully with the experiences of community inclusion.

Thanks for your continued support. Thanks for making Hopewell—a Well of Hope.

Sincerely,

The Ulrich Family

Epilogue: 20 years later

Junior High turned out to be one of the best times in Aaron and Tommy’s lives. They both had caring teachers who looked at each of their individual needs. I wish we could find out what memories the other students had of their time with Aaron and Tommy in cross-county, track, bowling, choir, gym… I bet they would have some funny stories. I wish them all well.

ps. We often think of how the students are going to grow up and be the next voters, taxpayers, citizens… but we often forget the school staff also evolves. Aaron’s teacher, Miss Lee went on to become a district supervisor and Dr. Taylor, the prinicpal, is the current Superintendent of Lakota. I like to think their experiences with Aaron and Tommy influence who they are today.

Keep Climbing: Onward and Upward
All my best,

Mary

Comments:

Were kids with autism and severe disabilities included in your school? Do you have any thoughts to share? What do you think the future looks like?

A related story is What is Inclusion? plus, pictures of Aaron and Tommy at graduation.

Autism: a lot more needed than “awareness”

Uh-OH, Aaron's got an idea

Go Aaron

xxxxxx

xxxxxxxxx
xxxxxxxxxx
xxxxxxxxxx
xxxxxxxxxx
xxxxxxxxxx
xxxxxxxxxx
xxxx
xxx

April, 2018 is Autism Awareness Month

Is Autism just the Disability du Jour?

April 2 is World Autism Awareness Day and in the US, the month of April is “Autism Awareness Month.”

Autism and the public service announcements are everywhere on TV:

• 1 in 88 children is now diagnosed with ASD.
• Early Childhood intervention programs help.
• People with autism can be smart.
• A child with autism can happen in any family.
• Many celebrities have children with autism.
• Shows as diverse as Desperate Housewives now have storylines about people with autism.

This is all good, right?

Gone are the days when parents were told their children were withdrawn because they were poor parents and “refrigerator mothers.”

Gone are the days when, with my son Aaron, we were told, “The chances of having a child with autism were 1 in 10,000.”

Gone are the days when we were told Aaron would always be in the “idiot range of mental retardation.”

Gone are the days when anyone who was different was sent to the “state hospital or institution” to make the community safer.

Gone are the days when people with intellectual disabilities were given “radiation” in their oatmeal because they weren’t really human and were only useful for human experiments.

Gone are the days when, there was no mandate for early intervention programs.

Gone are the days when, we segregated people with autism into separate classes, schools and institutions away from their brothers, sisters, neighbors and community…. But wait!

Gone are the days when no one knew the best educational practices and the children spent hours doing meaningless tasks focusing on “curing” the child. But wait!

As the “autism awareness” campaigns seem to focus on using fear tactics to raise more money and get more segregated “autism-only” programs, I have to wonder if this really is a good idea.

God help us if the current trends toward “autism only” programs undermine everything we have fought for and learned in the last 40 years.

Some of the things we have learned are:

All people are human and have dreams, feelings, and hopes for the future.

All people have gifts and strengths.

All people have personalities and can love.

All people can learn.

All people benefit from early childhood programs.

All people benefit from differentiated instruction and universal
design.

All people need support and to learn to be interdependent on others.

All people have the right to life, liberty and the pursuit of happiness.

All people can communicate and have important things to say.

Behaviors equal communication.

People with autism and other labels can be contributing members of society.

People with the label of autism, are not much different than the label of cerebral palsy, spina bifida, ADHD, cancer… or people who are poor, elderly, sick… er, “normal.”

The real way for the general population to understand and have an “awareness” of people who are different than they are, is NOT just a television campaign or a designated month.

The best way is for everyone to have first hand experiences:

Do you know that person’s name?

Do you see them in the grocery store?

Do you share time with them at Church?

Do your children go to school with them, play on their sports team?

Are they invited to your house, to birthday parties?

Do you see them working in real jobs, doing volunteer work, sharing their talents?

Do you enjoy being with them?

Do you allow them to grow up and become adults?

How can we teach self-determination and better communication?

SHOULD NOTS and SHOULDS

Autism Day, Autism Month, Autism Awareness SHOULD NOT be about spreading fear or all about a “Diagnosis.”

It SHOULD be about the difference between having a disability and having a handicap?click here
Autism Awareness SHOULD be about more research, certainly. But, the research should be to ask questions, NOT to provide answers—in 2018 we don’t know enough to have answers.

Did you know that Howard Gardner studied people with autism when he came up with the idea of “multiple intelligences”?

Did you know Vygotsky examined people with severe communication problems when he developed his communication ideas on “scaffolding”?

Autism Awareness SHOULD NOT be about raising more money for those parents, professionals, for-profit and non-profit groups that are on the “Autism: disability du jour” bandwagon. They are no better than speculators benefitting from a war.

Autism Awareness SHOULD NOT be about making more segregated autism-only day programs, farms, residential communities, schools, classrooms, soccer leagues and summer camps.

Who would ever think putting a group of people with communication issues together would be a good idea? What they need most is interactions with others with strong communication skills.

Autism Awareness SHOULD BE about noticing and appreciating ALL people who are part of our human community.

It SHOULD NOT be about charity, pity and sympathy but rather about giving ALL people the freedom to grow up and be the best person they can be—just as they are: able to make their own decisions; be treated as adults; made mistakes; and, loved because of who they are.

Autism Awareness SHOULD be about the concepts of “normalization” and “inclusion.” It SHOULD be about looking at people in the normal lifespan, normal opportunities. Not about fixing them with lots of therapies and aversive methods of behavior control.

Certainly, I have written many times about how Aaron and others need more support and people who are trained to work with them.

Certainly, I agree there is a desperate need for help for parents of adults to be able to find resources for their children.

Certainly, I have written of what a “Dream Plan for Aaron” would look like. And that includes Awareness–But much more.

Is Diversity Beautiful?

Challenge

People with autism have taught us much about love, interdependence, talents and courage.

Can you try to get to know a person individually? Can you listen to them? Can you help them be a bigger part of your life?

If so, then April can be a month of great hope.

The earth’s bounty blesses us with many different kind signs of spring. The flowering magnolias, dogwoods, apple and pear trees each add color and diversity to our world. The tulips, daffodils, crocuses each speak of the beauty of variety and remind us the earth is being reborn. Would we only want one kind of tree blossom or flower? Should we identify, diagnose and separate the trees and flowers and only celebrate the most durable or productive? Or is their beauty even in the most vulnerable blossom?

Can we appreciate and value a great diversity in nature? In people?
Maybe the most beautiful flower in the world, is really the beauty in a person.

Comments

I’m hoping you will share your comments and thoughts about people with autism? What are you doing this month to celebrate diversity in ALL people?

Keep Climbing: Onward and Upward
All my Best,

Mary

Autism Awareness Day| Direct Action is Better

Autism Awareness Day at the Opera

Autism Day at the Opera

April is Autism Awareness month. The United Nations General Assembly even designates a World Autism Awareness Day.

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 43, 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?