photo credit: Envios
Ever wonder who puts all those flags on the graves of veterans?
Like communities all across America, on Memorial Day our city holds a celebration to remember our basic values. A parade starts at the high school and ends at the cemetery where generations of citizens and soldiers end their life’s journey.
As the sun was beating down to the Sousa marches, our whole family, including my uncle John, was standing by the largest fountain, watching the parade of Little League teams, high school marching bands, Boy Scouts and the politicians in their red, white and blue ties.
The cemetery was beautifully prepared. The lawns were like carpet, the grass on the edge of the sidewalk was so carefully clipped, it stood at attention; the peonies, irises and annuals colored the grounds with reds, pinks, purples and whites. Everyone was feeling damn patriotic.
Everyone, except Uncle John. He turned to me and said, “I wasn’t always handicapped.”
“What?” I know I raised my eyebrows and wondered where this was coming from. I mean, Uncle John was never a happy person, but since he had a stroke, he was a weary soul. We hoped this celebration would lift his spirits. After all, who doesn’t like a parade?
Uncle John explained, “You know, I was an electrician. I was important, I contributed, I worked in a great hotel for 30 years. Now I just sit here and watch life go by. I’m handicapped and useless.”
Not exactly cheerful parade conversation but I couldn’t resist. “Uncle John, having a handicap isn’t the end of the world. Can you enjoy the parade? Look at those little kids jumping up and down on their decorated wagons.”
“You just don’t understand,” he said. “I’m not like him,” eye-pointing to Aaron.
Some Battles Can’t be Won
Since Aaron, my son with the label of autism, was sitting in the lawn chair next to Uncle John, I felt I needed to say something.
But I couldn’t find any words.
In silence, we were side-by-side, almost touching–yet thousands of miles away from each other–as we watched the veterans from the VFW pass by in antique cars.
The soldiers varied in shapes and sizes, men and women, veterans from the current Iraq, Afghanistan war to seniors of the war that would end all wars—but didn’t.
The sun reflected off the windshields, and I reflected that our society treasures the antique cars which are worth more now than when new. The old model cars were spit shined and decorated with banners. The old soldiers also wore banners, but many of their faces and bodies were worn. Did our society value them?
Some soldiers were younger than my sons, Aaron and Tommy. But, we all know their youth was shattered in the deserts and mountains of strange lands.
Some of the veterans in the parade carried the labels of “handicapped and disability.”
As the crowd cheered and waved, I had to wonder if these brave men and women would be truly accepted into our society. Would others, like Uncle John, say they were “useless”?
Would they only see the handicapping condition, would they consider these wounded warriors better than Aaron, because they were once whole? Because they were “damaged” fighting for our country?
World War II Story
As the speeches droned on, I remembered a couple stories by Bob Perske. One where he talked about people with disabilities and the war (click here).
And another: Bob said after WWII, a family in London moved into a new neighborhood. Instead of saying their son had cerebral palsy and had the label of intellectual disability from birth, they told their neighbors, “He was gassed in the trenches of Germany.” And in a post-war era of grief and loss, that benign lie made all the difference. Instead of avoiding or shunning the family, the new neighbors welcomed their family into the community. Their attitudes were completely different.
Modern Day Attitudes
A soldier who used a wheelchair got some sort of award and the crowd clapped. I wondered if our community embraced his family, or did we just give him a token wall plaque on Memorial Day and then segregate, discriminate and ignore him the rest of the year. Would he get the support he needed to live, work and recreate in the community?
The same questions I often ask for Aaron. Is one human more valuable than another? Is that what our country stands for? What the soldiers sacrificed for?
Disabled and Yet-to-be Disabled
Didn’t everyone understand there are only two groups of people in this world–the disabled, and the yet-to-be-disabled? If we live long enough, each of us will have a disability.
Being Useful, Proving Worth.
People with disabilities are not useless and just watching the parade of life go by.
And then being a good advocate—or crazy person who doesn’t know boundaries or when to quit– I asked Uncle John if he noticed how beautiful the cemetery grounds looked.
I told him Aaron worked at this cemetery. He and the crew of people who did the landscaping had disabilities, but if they had the support they needed, they weren’t handicapped and “useless.” In fact, they were the ones who made the grounds look so beautiful.
I pointed to the rows of tombstones which each held a single flag.
I told him that for the last 2 days, Aaron’s job was to place a flag in the holders by each tombstone. And tomorrow, Aaron would go back and remove the flags and save them for 4th of July, when he would again put them out.
Was Aaron useless?
What I remember| Memorial Day:
It’s been ten years since that Memorial Day parade. Uncle John died a couple months later–old, bitter and handicapped. He never hugged Aaron or saw what Aaron could do, only what he couldn’t do.
And, like the day of the parade when he missed the joy, pride and purpose of the Memorial Day celebration, Uncle John also missed the joy Aaron brought to anyone who opened their heart.
I think Aaron and I will wave a couple flags tomorrow to celebrate America.
And, I’m hoping that while Aaron was placing those flags in the cemetery, other people were seeing him as a competent, contributing member of our community.
Keep Climbing: Onward and Upward
All my best,
Come on, I know you want to share some memory of your own Memorial Day Parade, family reunion, attitudes about disabilities and “Handicapped.” Lots of good ideas, let us know what you are thinking.
Aimee Mullins and Survival of the Fittest
What makes you special? A Soldier story
Do the words disability and handicapped mean the same thing?
Hi Everyone. Getting ready for a vacation? Thought you might like to read about the family trip that changed our lives.
Just need Julie Andrews in the picture:)
Oh Beautiful for spacious skies…
From the moment I was pregnant, my husband Tom dreamed of the day he could retrace his childhood trip out west. He glowed in the memories of mom, dad and kids studying the maps on the kitchen table, packing the lunch meat sandwiches in the cooler, and repeating the rest-stop conspiracy of Dad throwing the baseball high over his boys’ heads so they would chase the ball and use up some of that stored energy. The year our son Aaron was ten and his brother Tommy turned nine, faithful to Ulrich family tradition, we headed west. The main difference between my husband’s family, and ours, was that Aaron has autism.
Preparing for the trip
Aaron didn’t start walking until he was five, and even at ten was not completely independent in the bathroom. So how were we going to follow his needed routines for toileting, understand Aaron’s wants without the use of words or signs, watch his balance issues, and especially, cope with unpredictable behaviors? How were we going to manage twenty-one days of camping, sleeping, eating, and interacting with strangers in strange places? How were we going to survive–much less enjoy–visiting eleven National Parks and Monuments, twelve states, Mexico, and traveling five thousand miles?
Certainly, we were not the first family to attempt a western vacation with a child with complex needs, but we also knew we were not going to be “typical” tourists. Tom and I briefly considered leaving Aaron with a friend or in summer camp, but we decided this dream vacation included our “whole family.” We would make it work.
Adaptations and Accommodations
What could be more All-American?
Using our teaching and parenting skills, we designed adaptations and accommodations for the trip. In previous years we camped in state parks and all shared a big tent. Aaron had a terrible time sleeping on the ground in such close quarters and often our sleeping bags got soaked in rain storms, so for this adventure we decided to buy a pop-up camper. Our pediatrician recommended some medication to help Aaron relax and sleep at night. We planned to follow Aaron’s schedule for meals, breaks, and sleep. We would only visit restaurants at non-peak hours, choose corner tables, avoid long waits, and skip most museums. We installed a child-proof lock on the car door and had a suitcase of games, music and snacks. Tommy and Aaron’s jobs on the trip were to crank up the camper each night and help carry the water buckets–jobs that were successful in our previous trips.
Oh Beautiful for pilgrim feet…
Like the pioneers of old, and Tom’s family a generation earlier, at dawn our family set out from Cincinnati with Tommy’s version of a “Colorado or Bust” sign taped to the windshield, driving not oxen-pulling-a-Prairie-Schooner, but a brown-station-wagon-pulling-a-pop-up-camper. We were confident we could handle any of the challenges we knew would come. We would enjoy our family-time and see the beauty of America. And fortunately, instead of mud and rock trails, we had interstate roads and could travel sixty MPH.
We Americans like to brag about being the melting pot and/or salad bowl of the world, a nation that values brotherhood and diversity.
Even with our best preparation, instead of a three-week vacation, this became a three-week teaching excursion. It seems the human America was not quite ready for us.
At home we were surrounded by people who know us; they saw the beauty in Aaron and our family. With the strangers we met on our journey, we had both negative and positive interactions.
Transformational Experiences, day after day
As if we had a disease, one family packed up their tent and moved it to a site on the other side of the campground, and a pregnant woman crossed the street so she wouldn’t have to pass us.
One evening Aaron was enjoying the loud echoes that he could make in the campground bathhouse, and a young boy ran out screaming, “The Hulk, the Hulk’s in there!”
An elderly man said, “We have one of ‘those’ in our family but he doesn’t travel, he lives in a home.”
“Mom, what’s wrong with that boy? Does he act that way on purpose?” The mother whispered, “SHHH, he’s retarded,” and like we were dangerous, yanked the child’s arm and dragged him away.
“Have you tried the Feingold or gluten-free diet?” or, “I know an allergist in Illinois who can get kids like that to talk.” It seems many people think they have the right to offer advice. I am sure they think they are helping, but do they really think we were so desperate we needed a consultation standing in line at the grocery? We struggle with the question: Can Aaron ever be accepted just the way he is, or does he only have value if he is “fixed” or “cured”?
In Arizona, we were asked to leave a family-style restaurant because, as the manager said, “We don’t serve people like him.” Tom and I were shocked because Aaron was happily eating his pancakes. If he had been noisy, we would have understood, but he was acting as normal as anyone. Sobbing, I hurried Aaron to the car wondering what we were going to do a thousand miles from home. I realized this was the lowest point of the trip and saw a glimpse of the discrimination that has followed individuals of other ethnic and racial groups. The stigma of being asked to leave a restaurant because some anonymous person didn’t like the way my son “looked,” and the management’s open prejudice presented an uncomfortable dark side of America I will never forget.
Oh Beautiful for heroes proved…
Our trip would have been devastating if only bad things happened, but we actually had some very positive experiences.
People would ask with smiles, “Where are you from?”, “Where did he get that red hair?” or “How old is he?” Just ordinary questions, but kind gestures and communication starters.
A parent of a child with Down syndrome commented, “I hope the programs in Ohio are better than in Missouri.”
One young girl smiled at us, “We have special kids in our school. My best friend’s name is Brian, he reminds me of him.”
Several children sought out seats next to Aaron and Tommy on a park swing, maybe just for a closer look, but they made eye contact and tried to make Aaron smile. Several gently pushed Aaron on the playground swings, merry-go-round, and gave him a turn kicking the soccer ball.
Aaron pinched me when we were rocking violently on a small plane sight-seeing ride over the Grand Canyon, the pilot said: “Don’t worry, I’ve had grown men reach over and hold my arm.”
At one roadside park all the visitors collectively held their breath as Aaron climbed the steps up a steep slide. Tommy guided him to the top where after much arm-flapping and nervous hand-biting, Aaron finally let go. As the wind struck his face and he barreled down the slide, Aaron’s expression was one of absolute joy. Everyone in the park clapped and cheered. This was not just a glorious moment for Aaron; this was a glorious moment for every person in the park.
In a swimming pool in Arizona, a life guard got in the water during her break and showed Aaron how to swim on his back.
On a train ride in Silverton, CO a little girl moved into the seat next to Aaron and taught him an adapted version of the game Connect Four.
A waiter in Mexico brought Aaron an extra pack of crackers while we waited for our meal and tried to entertain him by singing Old McDonald in broken English. He even helped cut up Aaron’s food. His empathy and understanding crossed national and language barriers.
Universal Design and Inclusion
In the National Parks we found many examples of universal design: accessible water fountains, paved paths, and self-guided tours enabled us to partially participate in the park activities. Several of the campground managers gave us campsites close to the restrooms. At Carlsbad Caverns, New Mexico there were benches and a bypass for the steep climbs. A small work crew with disabilities in Grand Canyon National Park did yard work, and a waitress at Canyon De Chelly used sign language to take an order from a customer. These inclusive accommodations not only made it easier on us, they actually made us feel welcome.
Survival means Adapting to the Environment
We were ambitious. We flew above the Grand Canyon and went down in the caves of New Mexico. We had a lovely lunch at the Broadmore Hotel with water goblets and doilies, but were asked to leave a family style restaurant. We drove to the top of Pike’s Peak and the whole family climbed the ladders of Mesa Verde’s Cliff Palace. We saw Native Americans adapt and survive their desert environment by seeing the value of every living plant and creature. We tasted jelly and saw sewing needles made from a cactus. We heard wolves howling, and we howled back singing every song we knew around the campfire. We took pictures and made memories that will last a lifetime. And perhaps like the Native Americans who live in the desert, we were learning how to adapt to our environment.
Lessons from the Road
We were physically and emotionally exhausted. Many amazing things happened that brought our family closer together. At the same time, though, I feel Tom, Tommy, Aaron and I crossed the line.
We could no longer think of ourselves as a family with one member who happened to have a disability; we were truly a “disabled family.”
I am not trying to be shocking or dramatic. We just had to concede that most of the general public did not seem to have the motivation, information or skills to assimilate us into their version of a “typical family.”
We also learned we had no anonymity; we stood out even in the largest group. Five hundred people came to see the bats fly out of Carlsbad Caverns, but because of Aaron’s shout when the bats emerged; four hundred ninety-nine people were looking at us.
We learned that celebrating the diversity of the landscape of America includes seeing the beauty of the diversity of its people.
Our experiences reinforced our commitment to the inclusion of people with disabilities to live, work, recreate, and go to school with their neighbors, brothers and sisters. We cherished the positive experiences; the children we met gave us so much hope for the next generation of Americans, and travelers. Like Johnny Appleseed on his trips out west, we tried to drop positive seeds that other pioneer families will nurture and see bear fruit. Perhaps a future Kodak moment for our country will include not only the beautiful American landscapes, but people like Aaron and our family.
Better than “The Buck Stops Here”
One last story: In Missouri, inside the Truman Memorial Museum with its high ceilings and big rooms, Aaron started, “vocalizing.” Oh, how it echoed. The guard came up to us and said either Aaron would have to be quiet or leave. Tom started to go, when another tourist came running from across the room. He looked the guard right in the eye and said, “How dare you speak to them like that. That young man is a citizen of this country and has a right to be here. Harry Truman was a strong supporter of the ordinary person. He, of all people would want them to be here.”
As we pulled the car into our driveway, Tom and I were wondering if it was worth it. Would we ever take another road-trip? But like always, our children showed us the way. As he was running into the house to be the first person in the bathroom, Tommy called over his shoulder, “Next year I want to go to Florida!”
And crown thy good with brotherhood, from sea to shining sea!
Add your voice:
Be sure to leave a comment and let me know about your travel adventures. Is it harder when you are away from home and your typical routine?
Keep Climbing: Onward and Upward
All the best,
Copyright Ulrich 2000-2013
Original Work do not copy without Permission
I’m Memory of Bob Perske, a real hero to families and people with disabilities.
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 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!
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?
Hope for the Families
Richard Lapointe and more
Bob Perske’s website
Keep Climbing: Onward and Upward
All my best,
Bob we love you.
Aaron watching Tommy play Nintendo
Summer Activities| A Mother’s Hope for Her Sons with and without disabilities
NOTE: This is when Tommy was 13 and Aaron 14 years old.
Is summer different for kids with and without disabilities?
This summer Tommy, my 13 year old son, …
• Went to 2 weeks of Boy Scout camp, an experience which included a hike on the Appalachian Trail.
• Had to choose between participating in baseball or soccer. In August, however, he began training for the school cross-country team.
• Was active in a neighborhood network of five boys who decided to start a Nintendo Gaming Exchange Club. His friends called him the minute he arrived home from activities, played games until supper.
* Was invited to stay overnight with a friend or cousin.
• Had a season’s pass to a nearby amusement park, and because he can use public transportation independently, spent at least one day there each week with friends.
The days of summer flew by for Tommy. He had individual activities with friends, but also family activities which included a camping vacation and travel to a National Park. His major frustrations were either the lack of time for pursuing all of his interests, or his Mom’s suggesting he do something “dumb” like reading a book or practicing his clarinet.
Our Family Camping Trip
Tommy’s brother, Aaron, age 14.
Aaron went to two weeks of special camp this summer.
Aaron’s major summer/weekend/vacation activity is watching Tommy play baseball, play Nintendo games…and riding to drop Tommy and his friends off.
Aaron also has a pass to the amusement park, but can only go with an adult (who so far is his mother).
Aaron spends every morning saying, “bus, bus…ready, set, go.” When the school bus doesn’t come, he sometimes licks on the front window, bites his hands and puts on his coat and backpack. He can’t figure out why his routine is different.
Aaron also can’t figure out why we spend all winter telling him to keep the front door shut, and all summer telling him to keep the front door open (but that’s another story.) *smile*
Aaron was on the waiting list for a short Easter Seals sponsored program in August, the only other community recreation opportunity available to him in our county.
What’s the Difference?
As I contrast the lives of my two boys, I can’t help thinking…
• …perhaps I wouldn’t feel Aaron’s isolation and lack of contact with any friends or same-age peers if Tommy had fewer friends.
• …perhaps I wouldn’t worry about Aaron’s behaviors, physical condition, weight and stamina if he were occasionally an active participant, rather than always an observer.
• …perhaps the hours and hours of inaction would not occur if Aaron had better skills or could entertain himself.
• …perhaps our family will adjust eventually to the sadness (and stress) we feel knowing Aaron’s only opportunities come from mom, dad or brother…and realizing it may always be that way.
* …perhaps we would feel so trapped if we could get respite regularly.
* …perhaps we’ll become accustomed to wearing a key around our necks so that the door can be locked with a deadbolt every time someone goes out or comes in (otherwise Aaron will run into the street or enter neighbors’ homes).
* …perhaps we’ll resign ourselves to our community’s “special” camps and “special” recreation programs, which effectively exclude Aaron from almost everything that is typical, regular, easily available and low cost. Perhaps hope will sustain us that someday a “community support” agency professional from somewhere, anywhere, could adapt, modify and begin to open community activities for Aaron and others.
* …perhaps our prayer will be answered that some child around Aaron’s age will care enough to help him join a circle of friends. Just once, even once.
* …perhaps/…oh perhaps…some wonderful person will believe that a community is more that a group of houses, businesses and people. Agency professionals must become bridge builders in the community. Families in which a child has a disability need the same support regular families have.
Summary: Separate is inherently Unequal.
The tragedy of having a child with a disability has nothing to do with a syndrome, impairment or disease. Words such as autism, CP, and intellectual disabilities are just descriptors the same way hair color, height, race, sex and personality are descriptors. Children don’t start out life knowing they are different. The tragedy is the reaction of families, neighbors and society, which emphasize differences.
The conflict for people with disabilities and for their families comes when the community limits opportunities, segregates and restricts individuals’ choices (e.g. Handicap swim is Tuesday; 1:30-2:30 p.m. and General swim is Monday to Friday 8:00–5:00).
It doesn’t matter that the limiting of opportunities appears, to have a good rationale or charitable intentions. Segregation limits freedom, limits choices, and limits development. “Special” means segregated.
Our Olympic Moment of Inclusion
One hot July day last summer, Tommy and his friends stopped by our house to make some peanut butter and jelly sandwiches for a picnic.
Unexpectedly, one of the boys asked if Aaron wanted to come along.
Five minutes later, all the kids were laughing, talking and riding their bikes to the park. One red-haired kid named Aaron was riding on a bike in tandem.
In about one-half hour the picnic ended and they brought Aaron back; that was the highlight of Aaron’s whole summer.
That moment for Aaron was sort of like the experience of a serious ice skater. Olympic gymnast, actor, or musician who practices day after day hoping to “bring it all together” for one magic performance or “big break” It was a “victory” –a spontaneous, normalized recreation experience, without his mom! Ahhh (smile-sigh). And now…back to work. But, perhaps, just perhaps…those wonderful, typical neighborhood kids will grow up more fully with the vision for and the experi3nce of community integration and freedom. They are the next generation of soccer coaches, swim instructors, church/synagogue group and scout learners.
The change of inclusion has begun.
Related Stories: (Click on title)
On the last day of Junior High School.
Dream Plan for Aaron–14 yrs old (Part 2).
America the Beautiful: A Family Vacation Plus
Keep Climbing: Onward and Upward
“When we stop to lift one another up on the climb, we all reach a higher place.”
All my best,
What were your summer vacations like? Would they have been different if you had a label of autism or disability? If you were a parent of a child with a disability what would you be thinking? dreaming? Are summers different for kids with and without disabilities? Can you think of anything you could do to help?