We’ve all heard the quote about how the most important thing on our tombstone is NOT the date of our birth or the date of our death. The most important thing is the dash—what we did between the two dates. Our birth to death time-line is not just linear.
Our World View is Unique
We live in complex interrelated systems which give us a unique lens to view the world:
*our nuclear family, our extended family and friends
*our local community professionals (bus drivers, barber, doctor…)
*our organizations (churches, clubs, schools…)
*our beliefs, culture, government, and our world
My Uncle Ed was one of the most inspiring people I ever met. In our Archdiocese, he served as a priest in several of the poorer parishes. One Sunday he was actually robbed and shot for the money in the collection plate—definitely not the best neighborhood. When he could have retired, he became a missionary in Grenada where he built a school, a nursing home, and two churches. He loved everyone including those marginalized by society: people who were sick, poor, had disabilities, the young, elderly, prisoners… everyone. Always, he modeled commitment and used his special gifts of humor and basketball to spread the word of God. Another thing Uncle Ed did was lead the songfest at each family reunion.
In part one of “Going to the family reunion, or not?” I talked about preparing BEFORE going to the family reunion. Today, I want to talk about systems theory. I thought about going straight to chaos theory because if your family is anything like mine, chaos rules the day… but systems theory actually helped me make sense of the circles of life.
Bronfenbrenner’s System Theory
In a systems theory perspective each individual is in a dynamic and interconnected relationship with other people and environments.
Resource: Bronfenbrenner, U. (1979). The ecology of human development. Cambridge, MA: Harvard University.
Picture nested Russian dolls where one fits inside the others. In Bronfenbrenner’s social system theory the smallest system is an individual person. But everything is connected; what influences one circle influences all the others. The circle of our family’s culture, traditions, likes, dislikes all influence who we are and what is valued. It is as important as the common blood or DNA.
The Micro System
Each aunt, uncle, cousin, grandchild in my family has their own experiences and beliefs about people who are different. Based on their ages and backgrounds they could have few or many inclusive experiences. Fortunately, Aaron is a part of the family, because of his blood, he belongs. They try to see the good things in Aaron, my son who has the label of autism. When we get together for family gatherings, they each try to fit Aaron into the environments and accommodate his needs.
Some of my cousins are teachers, counselors, business owners, nurses… Some work with people with disabilities in a professional capacity while others have had personal experiences with people in their communities. My sister recently had some hip surgery and applied for a Handicapped Parking permit–as we are all aging, we are all starting to understand the ramifications of being “temporarily able bodied.” Each individual and each family member shares those common experiences, but just as I am learning about growing older from my seniors and elderly relatives, many are learning about inclusion from Aaron.
Considering people with severe disabilities have suffered abuse, neglect, and been ostracized from their family (tribe) being given the opportunity to participate with the family is a gift. I am thankful. I also hope we give positive modeling of what to do, how to act, how to accept others who are different.
Most of my relatives go out of their way to try and help Aaron in the swimming pool, bring him a drink, and help wipe up a mess if he spills something–instead of blaming him. I think some of this was learned from my Uncle Ed.
Uncle Ed always “Got it.” He was a pioneer for inclusion before inclusion was a word. At our family reunions Uncle Ed always brought people from the neighborhoods where he was pastor. There would be kids of all different religions, races and cultures. He was teaching about diversity as we all got in line for the potato salad and hot-dogs, as sure as he was teaching about God and God’s children. When Uncle Ed led the traditional singing, we didn’t sing special religious songs only our family would know, we sang camp songs where everyone could join in: “The bear comes over the mountain” or “The food in the army, they say is mighty fine” and school fight songs.
Uncle Ed was teaching about inclusion, about belonging and the power of a face to face connection. And he lead the way to change attitudes through his embedded social systems.
The last song before the picnic ended was always, “He’s got the whole world in His hands.” Uncle Ed never offered to lay his hands on Aaron and ask for God’s cure. He never tried to “counsel” our family about accepting God’s will. He never gave a sermon on how Jesus cured the blind man. Never once did he tell me I was chosen.
But like Tom, Tommy and I were trying to model, Uncle Ed just accepted Aaron the way he is, saw his beauty and gifts. Didn’t try to change him or us. In the many choruses of “He’s got the whole world” we joined hands and sang about how “He’s got the mothers and the fathers, the sisters and the brothers…He’s got the little bitty children… and He’s got Aar-on in His hands, He’s got the whole world in His hands.”
I know sharing pictures and snapshots of family reunions is boring as can be, but I hope this story shows why our family and extended family are such an important part of who we are. I am so thankful Uncle Ed was a part of my family, a part of my social system. I am hoping my family will also say the same about Aaron.
What about your Circles?
Does systems theory make sense to you? Who are the people/groups/clubs in your circles? How do these impact your life?
Tell us about your social systems, how is your family changing?
My cousin rented her local swim club and invited all 26 cousins and their families for our annual family reunion. She scheduled it on a Saturday when many of my cousins would be in town. She is working hard to keep our large family together and give our children and grandchildren some of the same fun family times we had when we were growing up. Cousin Terri is offering a gift to our family.
So, will we go, or not?
Even though our oldest son Aaron has the label of autism and developmental disabilities, we try to include him in all our family activities. Now that he is in his forties, we have gotten pretty good at the extra planning and preparation to make sure all turns out well.
Today I want to focus on “ecological assessment”. Drs. Lou Brown, Alison Ford, Anne Donnellan et al. from the University of Wisconsin–Madison introduced this concept years ago and it has made a huge difference in how I look at the world. I’m not using their fancy checklists but I’m hoping to show how to analyze and plan for our visit– in this case, Terri’s local swim club.
Ecological Assessment with Commentary:
We can’t assume all swim clubs are alike. We have to access this one particular swim club. But we can compare/contrast it to Aaron’s past experiences.
We have been to this swim club before, if we hadn’t, we would have gone a couple of days before and scouted it out. Most people don’t like surprises or change. It’s not a coincidence that major chain stores like Target or Walmart are all laid out the same way. Each of us likes to know the lay-of-the-land. There is comfort in familiarity and that helps reduce our stress in any environment.
Terri’s swim club is about twenty years old. You’ve seen hundreds like it. The swim lanes, the three lifeguards, the signs telling the kids not to run… It is the same swimming pool our family enjoyed when we were teeny-boppers dripping Popsicles and walking around hoping our swimsuits didn’t make us look fat. (Oh, to only be as “fat” as I was when I was 12.) There are no steps and they have a ramp into the pool. (Thank you ADA.)
Aaron likes the water and is a pretty good swimmer. He started aquatic therapy when an infant to relax his muscles. My husband Tom will be in the water with him one-on-one. His cousins will be in the pool, so they will be aware of Aaron and add an extra layer of safety from stray beach balls.
Aaron has red hair, fair skin, freckles and if we lather him with sunscreen and he wears a t-shirt in the water he will be protected from burning. Past experiences predict Aaron will probably only stay in the water for about a half hour or so. The exercise will be wonderful for him and he will sleep well. Because Aaron swims with his mouth open, he probably will swallow some water and wet the bed. We’ll make sure he gets to the bathroom at night and we’ll use a mattress pad protector just in case.
The swim club has two separate restrooms and changing facilities. They have shower curtain dividers who Aaron and I will both fit. It is a typical swim club restroom, so I might have to bring in a chair so Aaron could sit down. I could change him and then he could go out to Tom while I change. We would bring Aaron in his swimsuit, so we would only have to change him once. We will give him yogurt in the morning and hopefully he will have his BM before we go. I’ll have an extra set of clothes. Aaron has some large plastic pants he will wear under his swimsuit just in case. (They don’t make swim diapers for adults.)
Aaron eats most anything so the pot luck buffet will be great. Cousin Ray will grill hamburgers… I will bring a dish that doesn’t require any preparation. I’ll make sure it is in a throw-away container so we won’t have to worry about bringing it home—maybe some frozen fruit cups or fruit-on-skewers so everyone can grab it and not even have to worry about a spoon. Those have been big hits in the past. Or, I’ll get real summer daze lazy and I’ll just go buy some cookies at the grocery. Aaron will need to eat at a table. I’ll bring some folding chairs. We’ll try and feed him close to his usual 5:30 mealtime. Between Tom and me, we can cut up his food and make sure he is comfortable. Usually, he sits by Grandma, so we can make sure both of them are okay. He can have one soft drink, and I’ll bring some bottled water.
We’ll bring some books and his baseball cards and make sure he isn’t too crowded at the table. We’ll make sure Aaron is in a spot where he can watch everyone and everything that is going on. When he seems tired or agitated we’ll leave. Tommy, Aaron’s younger brother will get to enjoy the day and spend time with his cousins, and we’ve arranged he can spend the night with Cousin Kevin if we have to leave early with Aaron. We’ll make sure someone is with him at all times but trade off so we can talk to some of the relatives. If Aaron starts his echolalia of, “You Okay?” or other odd behaviors, it will really be okay, because his cousins know and love Aaron. He is part of the family.
This post is to show what an ecological or environmental assessment looks like.
Most parents do the same thing for their babies, their children, their older family members. It’s really not that different–just thinking ahead, planning and being prepared.
If we really want Aunt Lizzie or Great Grandma Stella to come to the family reunion, there are little things we gladly do to modify the environment and accommodate their needs. For instance, Great Grandma Stella will surely take out her teeth after dinner and they will get misplaced. So we will assign someone to make sure and put them in a safe place. (This is an urban legend in our family.)
Same with Aaron–just add, subtract, and/or change a couple of extra things to make him feel comfortable. Modifications and adaptations are for everyone.
We still haven’t decided if we’re going to the family reunion or not.
In the comments below share some of the modifications and accommodations your family uses to make sure the oldest, the youngest and all the relatives in-between have their needs met at a family reunion?
Going to the Family Reunion, or not? Part 1 first appeared on my Climbing Every Mountain blog. It is the first of three parts.
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?
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.
What I love about this video is musicians from all over the world are playing the same song. Giving the same message. Gritty to sophisticated, washboards to violins–it’s the same song and message.
Kind of like all the people who believe in inclusion are playing the same song and giving the same message.
Kind of like all the people around the world who are working to make the world an inclusive place for ALL people, including people with disabilities.
The Inclusion Network
Check out The Inclusion Network hosted by Jack Pearpoint. There are many friends there from TASH, Arc, and advocacy days-gone-by who have stood by me and other parents of people with severe disabilities. Just a few are John O’Brien, Connie Lyle O’Brien, Barb McKenzie, John McKnight… and Gail Jacobs.
Standing with One Person–and Many
Our 45-year journey toward Inclusion has been long and hard. And when we look at Aaron’s current life, we don’t seem to have made much progress. We’ve done three MAPS and person-centered plans but they just ended up in Aaron’s chart with a bureaucratic check-mark that they were completed.
We continue to do all the right planning, we take the right risks, we fight like the devil to get good programs, we attend countless meetings, join the right groups, and work with strong visionaries to build a better world for all people with severe disabilities. But it’s not enough.
The journey continues with every breath we have in this life but unless Aaron dies before we do, we need to plan for an extended journey that continues indefinitely after we are gone. We make our choices and face our battles: the big ones, the little ones… we accept the compromises we have to make to survive. We keep believing. There is no other choice.
We stand on the shoulders of the parents, self-advocates, caregivers, teachers and advocates who came before us and bought our opportunities with their sweat and blood. We continue their work. We attempt to build a inclusive community which has never existed in the history of the world…and then we will pass on this legacy to the next generation.
When all is said and done, we can hold our heads high and shout to the world, “We stood together for Inclusion.”
Our family stands for Aaron in our community. Across the world others, in their own way, in their own community, with their own child, or friend, are also standing for Inclusion.
And each day, we touch the life of one person–and many. We make things a little better than they would have been without our work for our one person–and many. And that gives us hope and is our life work.
So thank you dear friends. Thank you, also, to all the people who are reading this who I have never met but who are working for an inclusive world where everyone belongs.
Thank you for standing by me. Thank you for standing by Aaron. Thank you for standing by all of us. God Bless.