The Power of our Words| We,They–Us, Them

US verses THEM

The Power of our Words

This is part 3 of a series on classic concepts to understand Normalization and Inclusion.

The first was Norm Kunc| A Credo of Support

The second was about The difference between the words “Disability” and “Handicapped.”

Mayer Shevin wrote this classic poem. I’m hoping you’ll add your thoughts in the comments.

“The Language of Us and Them”

By Mayer Shevin, 1987.

We like things.
They fixate on objects.

We try to make friends.
They display attention-seeking behaviors.

We take a break.
They display off-task behavior.

We stand up for ourselves.
They are non-compliant.

We have hobbies.
They self-stim.

We choose our friends wisely.
They display poor peer socialization.

We persevere.
They perseverate.

We love people.
They have dependencies on people.

We go for walks.
They run away.

We insist.
They tantrum.

We change our minds.
They are disoriented and have short attention spans.

We are talented.
They have splinter skills.

We are human.
They are…….?

What do you think?

Okay, truth time.

Have you ever used any of these phrases?

Are we really different?

Is there a legitimate reason for the We versus They? the Us and Them ways of thinking?

Are these words:

more than just semantics
more than about insiders/outsiders
more than prejudice
more than stereotyping…

and everything about survival, inclusion, and being loved.

Thought Experiment

In Erving Goffman’s classic book, Stigma: Notes on the Management of Spoiled Identity (1963) he talks about social stigma and how words like we/us and they/them are ways we separate and distance ourselves from other people and what is happening.

Check out this recent article about abuse, neglect, and budget cuts in an institution in California.
California Watch slams State Institution | Neglect, Weak Oversight.

How do we decide if we will get involved or distance ourselves?

What makes us care, not care?

Think about how the social stigma of we, us, they, and them affects adults with autism and developmental disabilities.

Think about how social stigma affects our decisions.

If you have a son or daughter, a relative or neighbor in this institution, then this story is about “us and we”–it touches our lives.

If you care about people with disabilities, this story is also about “us and we” because the next story may affect our loved ones.

I hope you will share some of your thoughts and continue the discussion in the comments.

Keep Climbing: Onward and Upward

All my best,

Mary

Related Posts

The Yet-To-Be Disabled.

Socially Constructed Attitudes| What do you see?

Test Questions| Segregation or Inclusion?

On “Happy Feet,” “Retarded Teeth” and Carnival Goldfish

win a goldfish
Creative Commons License photo credit: bradleygee

On “Happy Feet,” “Retarded Teeth” and “Carnival Goldfish”

From 1986 (Aaron 12 years, Tommy 10 years)

Carnival Goldfish

Last year at our PTA school carnival, my son Tommy, after numerous tries, threw the ping pong ball in the little glass bowl and won a goldfish. He was thrilled. I was busy working at the Magic Show and was hardly enthusiastic about his new transparent fish in the baggie.

Tommy named the fish “Red and Gold” after the red spot on his back. He wanted to immediately buy a 100-gallon tank, fish food, colored rocks, etc…. We compromised on old glass and the promise that “if it lived” we would get the needed supplies. As we went to bed we talked about how our friend Billy’s carnival goldfish didn’t survive the first night. We talked about how it would be sad if his fish died, but we would flush it down the toilet. We talked about a friend’s dog that had died and how there was a life and death cycle and only the strongest would survive.

At 5:00 AM a jubilant Tommy raced in with “Red and Gold” still swimming in the glass. Being tired (it was 5:00 AM) and a realistic mother I said, “That’s good so far, but don’t get your hopes up.” We fed the fish stale bread for a couple of days because I didn’t want to waste $3.00 on fish food. Every day after school, Tommy would race in to check on his “Red.”

Philosophically I had always felt it was more important to put our energy into helping people. I found it difficult to accept that some pets are treated better than people. I had zero expectations this fish could be healthy. Zero expectations its very existence could be meaningful to Tommy. Zero expectations, except that if it did survive it would be just one more responsibility for me. I really just wanted the fish to die, and get it over with.

Happy Feet

This same week, we had an appointment with the orthopedist for my son Aaron. Aaron has the labels of autism and intellectual disability; some doctors have also said Cerebral Palsy and extremely flat feet.
The orthopedist walked into the examination office with several interns on his heels. Without even acknowledging the fact that Tommy, Aaron, my husband, and I were in the room he spoke into a tape recorder while the interns were taking notes. “Here is a white male, appears to be about 10, with a (something or other jargon…surgery on his ….” He continued for another 3-4 minutes, poking Aaron in different parts of his foot, legs and hips to test this or that reflex.…. He never gave eye contact to Aaron or any of us.

Nervously, Aaron began biting his hand.

At this point, my husband walked over to the Doctor, extended his hand, and said, “Hello, I don’t believe we’ve met.” This took the Doctor off guard and he turned off the tape recorder. In the give-and-take of the next few minutes, we explained our concern for Aaron’s gait and balance. We demonstrated the exercises our physical therapist recommended. Did he say Aaron needed surgery? Did Aaron need a new prescription for his shoe inserts?

Instead of answering our questions the Doctor turned and asked me, “Is he happy?”

“Is Aaron happy?” I repeated, not quite sure what the Doctor was asking. I fumbled out an answer of how we try to make Aaron happy. Then the Doctor said, “It would be very difficult to get Aaron to understand surgery, orthopedic appliances, etc., so let’s not upset the apple cart and do anything to his feet that would make him unhappy.”

Retarded Teeth

My friend Susan, also “severely challenged” went to the dentist. At 13 she still had her baby teeth. Her mother was very concerned because her permanent teeth were crowding her mouth but the baby teeth weren’t falling out. The dentist brushed off the concern. “Why bother, she’s retarded, just let her have two rows of teeth. She’s not going to ever be prom queen.”

We actually know a man with Down syndrome whose parents were told their son would die before he was 6 years old. When he was 10 and his baby teeth still didn’t fall out, the dentist told the parents it was not worth putting the boy through the discomfort of getting his teeth pulled because he wouldn’t live very long. Well, the man is not 56. He still has the two layers of teeth. His baby teeth were never pulled. And now, he has impacted teeth which give him much pain and he has to have all his food cut into tiny pieces or pureed.

No Expectations

I wish these were isolated stories.

When I worked at the Parent Center, every day we would hear of people with disabilities being denied communication devices, tubes in their ears, surgery for tight leg muscles…because there were no expectations, no intrinsic worth or value to their lives.

“Red” is fine, but my face is red.

At Tommy’s persistence, we eventually bought a real fish bowl and real fish food. Even though “Red” is totally dependent on Tommy, I’ve watched Tommy feed him and change his water, proudly introduce “Red” to his friends, and alternate dropping his GI Joe men into the fish bowl to give Red some variety in his life.
An animal that can’t walk, talk, jump or play–“Red” had given much to Tommy. In spite of my initial prejudice and negative attitude, “Red” has become a valued part of our family.

It embarrasses me to think I made “Red” prove his worth before I would meet his basic needs of more space and real food. Nothing was wrong with the fish. I was the one with the problem.

Happy Ending

This year’s Carnival was yesterday. Tommy sang Happy Birthday to “Red,” and guess what? Tommy spent his first ticket winning a playmate for “Red.”

Comments:

Does anyone else want to share an embarrassing story about low expectations, and surprises? Have any of you had similar experiences with anyone in the medical professions? Schools? Community?

Keep Climbing: Onward and Upward

All the Best,
Mary

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.

“Superstar Dads”| Changing the World

My Superstars

Happy Father’s Day Dad!

Anyone can be a Father, but only someone special can be a Dad. (anon.)

“Love is that condition in which the happiness of another person is essential to your own.” (Heinlein, Stranger in a Strange Land, 1961.)

What is a Father’s “unconditional love”?

Many people have trouble explaining “unconditional love” and “fathers.”

I remember one Hallmark commercial where an older dad said he really only understood a father’s love when he saw his son holding his new baby–his grandchild. We were fortunate to see our son, Tommy with his new daughter. That is one amazing moment that made our hearts burst with love and pride.

But when I think of my husband Tom, and the harder love, the real unconditional love, it is when he is with Aaron, our oldest son who has the label of autism, intellectual and developmental disabilities.

Love is in the details, not the traditional big events like a new grandchild. It is in the demanding-ordinary-daily-love Tom pours into making Aaron’s life “normal” and “special” at the same time. Doing things that have to be done, when you would rather do other things.

Here is today’s example:

Dad picked up Aaron at his house at 8:30 AM today. The caregivers are going to a family reunion, so we want to give them some additional time off. After checking on his meds, asking about his toileting, Dad talked to the caregivers about our recent visit to Aaron’s medical doctor. Tom tells the staff, “Yes, you have to get the prescription filled.” And “Yes, this is now Saturday and we went to the doctor on Monday. What’s the problem?”
Tom then brings Aaron home to our house, takes him to the bathroom, cuts his fingernails, throws in some laundry (I’m still recovering from my surgery) and after an hour takes Aaron to get a haircut, go to the grocery and treat Aaron to a hamburger. Mom gets to stay home and hang out on the computer.

Later today we plan on taking Aaron swimming, and then seeing Tommy and his family to celebrate Father’s Day. We’ll take Aaron back to his house about 8:30 pm.

Dad is hoping to catch some of the US Open Golf Tournament on TV, but he fits that in between Aaron’s care.

Sure, as we celebrate Father’s Day, we’ll give Dad a couple of little presents. I’m sure our granddaughter will give him a big hug and card too. But the “Bagel Guillotine” slicer, some peanuts for the ballgame, and a new golf shirt will never be enough thanks for all the love and devotion Dad gives to his sons–every day.

Happy Father’s Day Dad! We love you unconditionally too.

Amplify the positive outliers

This week Seth Godin wrote an interesting post about creating change. He suggests that the easiest way is to “Amplify the positive outliers.” In other words, we don’t waste our time “extinguishing bad behaviors” and instead find “positive deviants,” positive examples of what we are trying to do, and then “give them a platform, a microphone, and public praise.” Seth says by focusing on our success stories and celebrating our superstars we will change our culture and strengthen our tribe.

In our Climbing Every Mountain community and other tribes of “inclusion” and “normalization,” we face daily examples of people promoting and building segregated schools for children with autism, segregated adult day (wasting) programs, and even a new segregated “handicap-only” baseball field. These are downright depressing and steal our energy and spirit.

So let’s begin thinking of positive examples and naming our “positive deviants.” In fact, most of the advocates and parents I know would like to be called a “positive deviant”—Yep, fits our label system just fine. Maybe we should be pushing the psychologists to add that to the DSM, might make better reading than saying parents are still stuck in the grief cycle, eh?

Enjoy this one minute of thinking about “The Crazy Ones” who helped change the world. If I was making a video, I would start with the above picture of my husband Tom and Aaron, the kid with all the labels–including “son.”

Some of the other Superstars in our life who would be in my video are Dotty Foley, Ann Turnbull, Annie Bauer, Michael Valdini, Dennis Burger, Colleen Wieck, Lou Brown, Anne Donnellan, Ed Roberts, Bob Perske, Tommy and Ana Ulrich, Mary Ann Roncker, Debbie Wetzel, Patty McMahon, Madeline Will, Patty McGill Smith, Patti Hackett Hunter, Leanne Bowling, Alison Ford, and many others.

Join in the Fun

This post is dedicated to all the Superstar Dads out there who are changing the world.

In the comments, tell us: If you made a video of your “positive deviants” who would be your superstars? Not just dads, but parents, teachers, professionals, and self-advocates who you think have changed our world? Who are the people who have moved us from segregation and given us the dream of an inclusive life with our families and terrific dads?

Keep Climbing: Onward and Upward

All my best,
Mary

Related Posts:

Dad and our trip to Indiana

Parents and Advocates Never Give Up

Hope for Families

Ed Roberts| Be extraordinary

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