Posts Tagged ‘parents’

Robert and Martha Perske

At one of my first TASH conferences, I heard Bob Perske speak about Hope for the Families. His book, by the same name, helped me make sense of our family’s new life as parents of a son with the labels of intellectual disabilities, autism and more.

Bob Perske has been one of the pioneers for people with disabilities and their families. In Parallels of Time Bob Perske is seen pictured with giants in our field. He has written many terrific books including Circles of Friends and Unequal Justice, his current work with people with intellectual disabilities caught in the criminal justice system.

Bob is an amazing minister, speaker, writer and just great person. People with disabilities and their families are fortunate to have him in our lives. Martha, his wife, uses her talent to create pictures which spread joy and a vision of inclusion across the world.

Below is one of Martha’s pictures and the introduction to Hope for the Families which I have passed along to my friends, my classes, and anyone who would read it.

Hope for Families of People with Disabilities

Not so very long ago, you and I were conditioned to perceive persons with handicaps as deviants. They were seen as…

Possessed by evil forces

Carriers of bad blood

A drag on the community’s resources

The products of illicit sex

Subhuman organisms

Too ugly to be seen in public

Objects to be laughed at

A Group that would outbreed us

People with contagious sicknesses

Sexual monsters and perverts

Children who never grew up

Our parents and teachers conditioned us by what they said—or didn’t say—to feel uncomfortable around hose imperfect people. We were led to believe that if we got too close to them, something evil would rub off on us.

Consequently, persons with disabilities were condemned to struggle against TWO handicaps. One was the actual handicap. The other was he additional wounding they received from our prejudices.

Wasn’t the handicap itself enough? Why did we have to cripple them further?

Let me offer one theory to explain such behavior:

Once we believed fiercely that the world was becoming better and better.

And in keeping with this belief, everyone was expected ultimately to develop…

A pure heart

A brilliant mind

A beautiful body

A successful marriage

A high-status job

And live in a perfect society.

Then along came a few defenseless persons with obvious physical and mental handicaps. Their presence rattled our plans for a perfect world as a high wind rattles a loose shutter. We didn’t like that, and the result was that we could not stand to have them around us.

World War II

Then something happened. One country, in an effort to create a super race, started a world war. By the time it ended, the minds of all humankind were trying to comprehend the terrible things some groups of human beings had done to other groups. All of us tried to understand what had happened in places like Buchenwald, Auschwitz, Hiroshima, Nagasaki, London, Bataan, and Corregidor.

After World War II

After World War II, our belief in the gospel of world perfection began to fall apart.

And, we were reminded of some terrible facts.

All of us have gaps in our bodies and minds.

All of us are unfinished.

Some of us can hide our deficiencies better than others.

None of us will ever achieve perfection.

Those of us who think we are closest to perfection may be most likely to drag the human race to new lows.

Today we do not know whether the world is getting better and better—we only know it is getting more complex.

And yet it is an astonishing fact that humankind’s healthy interest in person with disabilities began to mushroom after the Holocaust and the Atom Bomb. One cannot help wondering if there is a connection.

Robert Perske Hope for the Families: Abingdon Press, Nashville, TN.1981. Click here for Robert Perske’s website.

Today, advocates in Ohio, Wisconsin, Indiana and other places around the country are asking the legislature to preserve Medicaid and other programs for people with severe disabilities. The crucial support programs our children need to survive are at risk.

Money is always scarce, but as Bob points out, we have made progress in our values and experiences of including people in the community. We have to believe in hope and better futures for our children.

I am reminded of two quotes:

“Those who do not learn from the past are destined to repeat it.”

“A measure of a society is how it treats its most vulnerable people.”

As parents we understand budget cuts and are even willing to concede progress will be slow, BUT we expect progress!

If you found this interesting you might also like a related article about Remarkable Parents who Never give up.

Keep Climbing: Onward and Upward
All my best,

Mary

What’s Your Take?, Be Brave and Share

Do you think our society values people who are different or have special needs? or, are we still just a drain on the system and resources? Do you think people with disabilities have two handicaps?

If you like this, please retweet and share with your community. Thanks.

Related Articles:

Unequal Justice| Bob Perske

Bob Perske| The Song of Joe Arridy

A Comparison of the Service System and the Community

2012 Article on Joe Arridy “Here lies an Innocent Man”

photo credit: qthomasbower

In the post: Caring Community| People First Language we talked about the power of labels, negative stereotypes and the paradigm shift of looking at all people as PEOPLE First!

Today, on Valentine’s Day, I am asking you to think about how you use words:

Do my words cause Heartaches?
Do my words cause Heartsongs?

What are you doing?

WHAT are you doing?

What ARE you doing?

What are YOU doing?

WHAT THE HELL ARE YOU DOING!!!!

The same words can be said in anger or with gentle concern.
The speaker, the listener, the context of the communication, as well as the intent all make a difference.

Parents, Teachers, Coworkers, Friends, Enemies… We have all been misunderstood and misinterpreted. We have all wished we could swallow what came out of our mouths–take back our words. We have all been both aggressors and victims and have given heartaches as well as heartsongs.

HEARTACHES: “What’s that mess on your shirt?”
HEARTSONGS: “I see you have paint on your shirt.”
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HEARTACHES: “NO!”
HEARTSONGS: “Let’s talk about this before you decide.”
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HEARTACHES: “Get over here right now!”
HEARTSONGS: “I need you with me.”
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HEARTACHES: “I told you so.”
HEARTSONGS: “That was harder than you thought.”
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In the comment section, let’s share some ideas on how you could make each of the following examples into either a heartache, or a heartsong?

Scenarios: Heartaches or Heartsongs.

1. Sara is eating breakfast. The bus is coming in 5 minutes. She spills her juice while reaching for the cereal.

What could you say that would cause a heartache?

What could you say that would cause a heartsong?

2. Ken wants to help his friend wash the car. He accidentally squirts him with the hose.

What could you say that could cause a heartache?

What could you say that could cause a heartsong?

3. Emily comes home from work. When asked about her day, she begins to cry and says, “Jim doesn’t like me.”

What could you say that could cause a heartache?

What could you say that could cause a heartsong?

By speaking with your heart, you may be able to bring out the very best in people. Give them a chance to talk. Listen patiently.

And of course, there is always the quote: “I know that you believe you understand what you think I said, but I’m not sure you realize that what you heard is not what I meant.” But we’ll save that for another post.

I’m wishing you a day filled with heartsongs. May you have many opportunities to give them and to receive them. Spread the love.

Keep Climbing: Onward and Upward
All my love,

Mary

Comments:

Do you have any examples of heartaches, heartsongs?
Heartaches turned into heartsongs?
Use the examples above, or share some from your own experiences.

Adapted from Project Prepare, Ohio (1995)

St. Nick and the Batman Socks

photo credit: frannie60

In Christmas 1981, Cincinnati Public Schools was involved in two class-action lawsuits. Our family was caught up in both of them.

The first concerned the right of Aaron, our then seven year old son, who had an IQ below fifty and the labels of autism and intellectual disability, to be able to attend public school instead of a segregated handicapped-only school, “with his own kind.”

The second lawsuit was about racial segregation and the development of “magnet schools” to bring together children of different races, socio-economic backgrounds, and learning styles. We voluntarily enrolled our youngest son, Tommy, age five, into Sands’ Montessori School in the inner city to promote desegregation.

While the lawyers thought the two cases were different, our family knew they were both about building an inclusive community, valuing diversity, and learning from each other.

One of our first lessons about diversity came on St. Nick’s Feastday, Dec. 6th.

In true German tradition, the evening before St. Nick’s Feastday, Tommy wrote letters to Santa for both himself and Aaron, tucked them inside their shoes and placed them outside their bedroom door.

The next morning, Tommy was thrilled to find St. Nick left a note asking him to help spread the spirit of Christmas, be nice to his mother (ah-hem), a couple of candy bars and a pair of Batman socks.

Tommy was always shy. But he was so excited to show off his Batman socks he strutted in front of the mirror, decided his pants covered too much of the socks, and tucked his pants legs inside his socks. Batman socks ruled!

I of course, thought this was darling, took pictures for his Kindergarten scrapbook and drove him to school thinking I was one terrific mom, er, St. Nick.

Tommy joined his class, and I was hanging out with the school secretaries when Tommy’s teacher called into the office asking me to come to the kindergarten room. Over the PA I could hear Tommy sobbing and the rest of the children clearly agitated.

It took a couple of minutes to sort out the details, but apparently Tommy had proudly shown his Batman socks at Show and Tell.

What he learned was no one else in the class had ever heard of St. Nick. And what was worse, St. Nick did not pick up anyone else’s note to Santa. So using sophisticated kindergarten logic, that meant no one–except Tommy–was going to get anything for Christmas.

Further, Tommy felt terrible he hadn’t told them about St. Nick. He reckoned this mess was all his fault. He was “not spreading Christmas cheer” as he had been told in St. Nick’s message, so Santa would be mad at him and not give him anything either.

Tommy’s tear-streaked face would have been bad enough, but he was curled under a desk in the corner with his bare feet hanging out. His Batman socks were inside-out in the garbage can.

Well, this was clearly a kindergarten disaster of monumental proportions. Tommy’s caring teacher and I exchanged those adult looks that said we were supposed to fix this. We settled the children.

I brought Tommy back into the circle, held him in my lap and reassured two other children who were sitting nearby.

Mr. Leedom read Marcia Brown’s story, Stone Soup.

Stone Soup

Stone SoupThe moral of the story is if we think in terms of “gifts” instead of “scarcity,” and if we see the unique beauty in our differences, customs and traditions, we will all have a richer life.

Community Building

After the teacher finished the story, I fumbled out a few words about our class being a community just like the people in the story.

Sometimes our family or religious traditions are not familiar to everyone. Just like each of the families in the story Stone Soup, our class was full of families that could contribute special stories and traditions to celebrate the holidays.

(Kindergartners are very generous in allowing grown-ups to tell stories to make themselves feel better.)

I told them St. Nick came to our house because we were of German descent. I asked if anyone else had other traditions around the holidays and one student told the story of Kwanzaa, another about Hanukkah. I reassured everyone they needed to talk with their families about their holiday traditions, but that if Santa brought them gifts last year, he would surely bring them gifts this year.

As I looked around the circle at these children I had come to love, it dawned on me this was not the all-white, German Catholic, middle-class community school in which I had grown up.

This was exactly the kind of learning experience we wished for our sons.

Intellectually, I knew this was why we chose this school. This sharing was the gift of diversity and inclusion.

But this was more. This experience was a transformational moment for me, Tommy and perhaps some of the students.

Community Building Mix

The next day I brought in the ingredients for our own version of Stone Soup– “Building Community Snack Mix” and gave each of the students a Batman sticker.
For more information click on the community building mix.

Batman Socks Rule!

Tommy did get his Batman socks out of the garbage can. He wore them all kindergarten and into first grade until they were faded and had a hole in the heel. The Batman socks are part of his childhood legacy.

New St. Nick Traditions

Each year, for the last thirty years, we have placed the worn, torn Batman socks on our Christmas tree.

Now Tommy has a little girl of his own.

I want to wait a couple Christmases. But when our grandbaby goes to Kindergarten, the Batman socks are again going back to Tommy for his St. Nick’s Day present.

Hopefully, the story of “St. Nick and the Batman Socks” will become a cherished tradition to share with his daughter…and will continue to teach about diversity, community building and inclusion.

Comments:

Do you have any St. Nick or holiday traditions that are unique to your family? Do you have any school memories about lessons in diversity, community building or inclusion? Do you have other ideas on how to build community during the holidays?

Keep Climbing: Onward and Upward

All the best, Mary

Parents and advocates of people with disabilities have a love-hate relationship with professionals because they don’t give up.

photo credit: freeparking
photo credit: Powerhouse Museum Collection

I’m Thankful for Parents and Advocates

You know the ones.

They never give up.

They ask the tough questions.
They demand answers.

They show up at budget meetings and want copies of the agenda and handouts.

They show up at board meetings and introduce their child.

They study the friggin’ law and quote it at you.

They call the State Department when they can’t get what they want at the local level.

They are politically savy–not politically correct.

No matter how many times we tell them, “You are not credible because you are too emotionally invested,” They won’t give up.

They don’t care the budget has been cut.
They don’t care we are sharing offices and there is no toner for the copy machine.

They aren’t reasonable about “waiting”… or accepting excuses for shoddy performance…or people who don’t call them back.

They embarrass us by going to meetings where they are the only unpaid person in the room, and they are more prepared then we are. And they go to more meetings… and more meetings.

They just won’t give up.

If we try to slip one by, it’s like they have built-in radar. They just seem to know when we filled a staffing gap with an inexperienced person, or if the caregiver had a beer.

If we tell them the “research says”–they want to see the research.

They give us copies of new research.

They call the researchers–collect.

They even have the nerve to point out flaws in the research studies and want their child in the next study.

If we tell them they can’t possibly understand the research, they read books, network, take courses until they become the experts. Some even get their Doctorate degrees.

They insist we don’t give up.

When we do something right, they tell us we are wonderful and they are thankful, BUT….

Damn, there is always a BUT.

When we tell them to “Trust Us,” they smile and tell us that is like asking GreenPeace to “trust” the oil companies.

They just won’t give up.

Damn, they drive us nuts….
But we know that after we retire and get our pensions, they will still have to be harrassing our replacement because their child will always need someone to advocate for them.

We respect them because we know they force us to do a better job.

We know that when they are helping their child, they are also helping all children.

We love them because their motives are pure and they make the world a better place.

And most of all, we admire them because they don’t give up.

This is dedicated to:

Mary and Oliver Triplett

They were the parents who ignored advice from the professionals and kept their son Donald home from the institution. Their son became the famous Donald T. in Leo Kanner’s research article identifying the phenomenon he named autism. This article in The Atlantic shows how Donald is living today. Though the story is about Donald–I think it is his parents’ love and advocacy that is the REAL STORY (click here).

Anne McDonald and Rosemary Crossley

Anne McDonald and Rosemary Crossley kept teaching us all about the right to communicate, and they didn’t give up.(click here).

Jon Morrow

Jon Morrow is an associate editor on CopyBlogger whose blog article: On Dying, Mothers, and Fighting for Your Ideas went viral. He is a success story and has done amazing things, but when you are reading this, think of his mom.
(click here).

Nina and Joseph Marcellinos

Nina and Joseph Marcellinos knew the word “retarded” hurt their daughter’s future–and they didn’t give up until they changed the Federal Law. (click here).

Tell us about your experiences:

Do you know any remarkable parents and/or advocates? Do you love, hate, respect, admire, despise them?

When you are reading about great advances for people with disabilities, the elderly, children… do you look underneath the headlines and see the parents and advocates? Have you done something where, against the odds, you didn’t give up?

Keep Climbing: Onward and Upward

All the Best,
Mary

Day 6 of our Chris Brogan Every-Day-for-30-Days Blogging Challenge
Follow us on Twitter #CB30BC

“Spoon boy: Do not try and bend the spoon. That’s impossible. Instead… only try to realize the truth.
Neo: What truth?
Spoon boy: There is no spoon.
Neo: There is no spoon?
Spoon boy: Then you’ll see, that it is not the spoon that bends, it is only yourself. Only try to realize the truth. There is no spoon.
(Polish subtitles: hey, the more diversity the better.)

“There is no spoon?”-Disability style

photo credit: wintersoul1 Last Sunday I went to pick up Aaron at his house. I told the caregiver we were going out to lunch, but–no surprise–she forgot. So Aaron and his housemate were sitting at the kitchen table eating soup and grilled cheese sandwiches. Now, soup and grilled cheese are lunch classics, so no problem there.

But, in one glance, I could see both these men were struggling with the soup because they were eating it with teaspoons. Both have lots of motor issues, and both would put soup on the tiny spoon and lose most of it by the time it got close to their mouths.

This particular staff person is from another country and we have had problems with her just not understanding things ie. she used shaving cream with the electric razor– ruining the $100 shaver and confusing Aaron. She is also the one who didn’t think you needed shampoo to wash hair…. So, I’m thinking, maybe she doesn’t know any better, it’s a cultural thing or something. (Okay, I’m really silently reading her the riot act.)

I nonchalantly go over to the kitchen drawer and figure I’ll just give them bigger spoons.

But, NO SPOONS. Not even a bent one. (Where’s the bald spoon boy when you need him?)

In fact, there is only one knife in the drawer and about three forks. I look around, but they don’t have a dishwasher, and the dish drainer holds no silverware, so I wonder where in the world is the last set of silverware I bought for the house? How do they keep losing silverware?

“Realize the truth.”

Deciding it was an impossible situation, I just left with Aaron and took him to a restaurant for lunch, like we planned in the first place.

“What truth?”

1. Do I report this to Aaron’s care-coordinator and let her handle it? (case worker)

2. Do I ask the head staff person? (Except she works there four days a week and certainly would know there is no silverware.)

3. Do I ask everyone what happened to the silverware and make a big deal about them being … maybe irresponsible? or untrustworthy? (After all, Aaron lives better off than some of the staff and things have disappeared before.)

4. Could this be a situation like a previous backpack issue?
One Sept. I bought Aaron two backpacks because they were on sale and he usually loses one or it gets so torn up he needs a new one by January, when they are expensive and hard to find. When the staff person saw Aaron had two, she took one to a person in another house where she worked because that person didn’t have any. So maybe this silverware thing is the same. Maybe the people with disabilities in another house didn’t even have teaspoons? So, in an institutional–all things belong to all people and we think of the greater good–the staff person decided Aaron had more silverware than the other person so all’s fair.

5. ???? (This is the kind of stuff that keeps me up at night)

“It is not the spoon that bends, it is only yourself”

So, what to do? How do I solve this problem and upset as few people as possible?

Everyone says–and I mean everyone–I am too involved in Aaron’s life and just need to let the staff do their job. Certainly the parents of Aaron’s housemate don’t even see things like the spoons or the rags they use for towels, or the fact that the light-bulbs don’t work in the living room lamps.

But this is for Aaron–how could I just ignore this?

Not sure if this was right, but the next day when I brought Aaron back to his house, I just slipped a couple knives and bigger spoons into the kitchen drawer. Didn’t say a word.

Now next week, St. Vincent’s Thrift Store has everything half-off on the first Monday of every month. I’m betting I can find a good deal on a whole set of silverware–or at least more spoons. I can probably find a couple better towels for everyone too.

I’ll slip over to the house during the day when no one is home, put them away and … bet no one even wonders where the silverware came from.

But I’ll know, and Aaron’s life will be better for it. And that is enough.

Matrix World meets Disability World

I’ve read the lesson of the Matrix is that the physical world is all an illusion and if we just free our minds, problems are not as bad as we think. In Disability World, we can free our minds all we want, but it would be an illusion if we believed things are not as bad as we think–they are. But love and actions are better than illusions.

Comments Please:

What would you do? Any similar stories?

Keep Climbing: Onward and Upward.

All the best,

Mary

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In case you missed it:

Day 1: “Every Day for 30 Days” Blogging Challenge or “IBP” (Individual Blogging Plan) Day 1 of the 30-Day-Every-Day Blogging challenge. (click here)

Day 2: Memory Rocks: not being objective (click here).

Day 3: Turning it over to the professionals (click here)

Day 4: (click here)

Day 5: (click here)

Check out what my challenge partner Alison Golden of The Secret Life of a Warrior Woman:“Disabled in Waiting”

Aaron’s a Dude: The Dignity of Risk

Aaron just spent 3 days on a Dude Ranch in Michigan.

Before the Dude Ranch closes for the winter, buses of adults with all kinds of disability labels arrive and sleep in bunk houses, eat in mess halls, go boating, ride horses and sing songs around the campfire. For many of these adults—this is the highlight of the year.

The ranch’s owner is friends with the owner of the residential company which provides Aaron’s supports. (This is a great example of Bronfenbrenner’s system’s theory—circle of friends, using your contacts…click here).

Aaron is assigned a staff counselor one-on-one, but everyone pitches in to make sure everyone is safe and has a good time. Always being safe and having a good time sometimes contradict each other. Bob Perske used to talk about, “The Dignity of Risk” and as parents this is a complex and difficult balancing act.

This year we were lucky because one of Aaron’s regular staff went to camp. This was nice because she has worked with Aaron for 6 months and knows what Aaron likes and doesn’t like. So that helped mom’s anxiety and I would think made a big difference to Aaron.

This is about Aaron’s fifth dude experience and each time it’s a worry for me and Aaron’s dad. It is hard to get good feedback on what Aaron does and doesn’t do. I wish he could talk and tell us but I figure it is a change of pace, he likes to ride on the bus, sing songs. Especially, he likes to go horseback riding.

When Aaron was growing up, he took horseback lessons for about 10 years. He only stopped because he reached the 150 pound weight limit. When Aaron sits atop a horse, he looks like Prince Charles: head high, back straight, sometimes he even points his toes. I think he and the horses communicate in their own cosmic language. Sue Radabaugh, Bobbi Theis and the physical therapist at Cincinnati Riding for the Handicapped gave Aaron and each rider a lucky horseshoe at the end of each series of lessons.

We learned horseshoes should always be positioned so the luck stays inside the horseshoe and doesn’t fall out. Aaron still has the horseshoes. God knows we don’t want to have our luck fall out.

Each year, I try and give Aaron “the dignity of risk” and not worry about the million of things that can go wrong at camp. I don’t like to think of myself as one of those “over-protective” or “hovering” parents. Some years have gone better than others, but each year we hope and pray our luck holds.

It is just difficult having a person like Aaron who is so vulnerable, when we don’t really know how the staff will act in this very different environment. For instance, Aaron has red hair, freckles, and burns in about 15 minutes in the sun. His caregiver is from Jamaica and has never had a sunburn in her life. I send sunscreen, I give instructions, but each year we ask, “Will Aaron come home with a sunburn?” In the post about deciding to go to the family reunion (click here) I could actually do the ecological assessment and control the environment. But the Dude Ranch is too far away. I had to put the control in the staff’s hands. And we’ve had some rocky experiences with some staff.

We did find out that Aaron went right up to the horses and wanted to ride, he went out on the lake in a boat four times, and he passed out the light bracelets for the barn dance the last night. The little radio we sent for the bus ride worked well, and actually came back with Aaron. Only one toileting accident. So all is well for another year. Hopefully we will see some pictures. And hopefully we will be even better prepared for next year.

Maybe I should hammer some horseshoes (with the luck inside) up on our front door. Whew! made it another year.

Why do we go to school?

Is it to go to magical places?

Is it to make friends?

Is it to keep kids off the streets?

Is it to give Mom and Dad a rest? Or someplace for the kids to go while she/he works?

Is it only to learn to read and write?

When our country was founded, education was generally for the male children of rich property owners. They were to prepare to become businessmen and the governors of the lower classes.

Jeffersonian Philosophy of Education

Is the reason we go to school the Jeffersonian concept that a democracy depends upon an educated population?

This philosophy teaches we need to learn so we can become knowledgeable voters, dedicated citizens and choose wise leaders who govern for the common good.

This makes sense to me, but if you listen to many of the current politicians and public media personalities they seem to suggest the purpose of the school is to teach everyone to think the same way?

Their way.

And if you don’t, they will pull their children out of public school and either home school or put them in private schools where they can control the curriculum and the way people think.

They seem to think this is protecting their children from harm—these strange people and ideas would hurt their children.

But what about people who are different, including people with disabilities?

Measure of a Society

“The true measure of a society is how it treats its most vulnerable citizens.”

So, is part of the reason we go to school to learn how to live with society’s “most vulnerable citizens”? To learn about how we can all share the resources and problems of our common society?

To learn to care about others?

To learn to see strength in diversity?

To prepare ourselves and others to become one of those “most vulnerable citizens”?

Is the American school still the great melting pot that gives us all a common experience? and sees value in our diversity?

This is certainly the goal of inclusion. See related post, What is Inclusion?

If everyday ALL children go to the same schools, get to know each other on a personal level, share time on the playground and lunchroom and bus and in the classrooms–there are valuable lessons in just being together with people who are different than we are.

And maybe one of the lessons is–we are not so different–inside we are the same.

What do the history books say?

In the late 90s, I was teaching education majors who wanted to be teachers.

I took my Introduction to Exceptionalities classes to our university library which had a collection of textbooks being used in classrooms all over the country.

Their assignment was to examine one of the high school textbooks in American History, Problems in Democracy or World Histories and look for pictures or references to people with disabilities. Many of these college sophomores were able to find the same textbooks they used when they were in high school.

Out of the 20 different textbooks they evaluated, no textbook had more than four references to anything about disabilities.

The references, in a sentence or two, referred to:

Helen Keller was deaf and blind and traveled in the Wild West Show, President Roosevelt used a wheelchair, and the American with Disabilities Act passed in 1990. In several of the textbooks, an additional reference said, “deinstitutionalization caused many people who were mentally ill to become homeless” with a picture showing a man sleeping on a park bench. That was it! And the last message was not positive.

People with Disabilities are often Invisible People

People with disabilities have been basically excluded and invisible in the traditional curriculum.

In a culture that asks its children to “not stare,” and “beware of strangers” we have taught our children to ignore and avoid people with disabilities. Many churches only teach about praying for miracle cures and giving charity and alms to the “handicapped” (word from “cap in hand”). So, though there has been some progresss, it is not surprising our textbooks still avoid the whole conversation of disabilities and differences.

The increase in college “Disabilities Studies” majors and minors across the country is a strong beginning and step in the right direction. Kudos to those who are pioneers in this new movement. The recent Tribute to Ed Roberts is an example of people who care recognizing the contributions of great Americans to the freedom and inclusion of all.

Yet, I would bet if we repeated this textbook assignment today in 2011, there would still be a scarcity to references about people with disabilities and of all minorities; though I think the textbook companies are responding to some of the criticism.

What is the purpose of education?

So besides becoming informed citizens, what is the purpose of education, except to prepare each of us in the attitudes, vocational, domestic, community, and leisure skills we need to function successfully the 50-60-70 years of the rest of our lives?

How can we learn to make choices? To learn to ask questions? To learn to solve problems? To learn to work and live together? To learn about ourselves, our ways of making sense of the world? To learn about diversity?

Would our government officials act differently if they followed Thomas Jefferson’s ideas on education? If they went to school with people who had disabilities or had differences?

Schools and Parents

One teacher, one therapist may be great for a year or two but professionals come and go. The parent is the constant in a child’s life. We know our children the best and are the experts on our child’s likes and dislikes, their learning styles and behavior in the home and community. We know our child’s history better than any psychological profile that sits in the school office. We know our child is more than the words on their Individualized Education Plan (IEP).

Our role as parent is a difficult one because we represent the continuity of our child’s life. We know their past, we are part of their journey. But are we willing to risk our children learning about diversity and differences?

There are many parents of children with disabilities who are afraid, it is understandable, but will that fear hurt our children and the next generation of citizens.

We know our neighbors, our community, the life our child has outside of school. Check out related story: A new year of learning. We can share our child’s dreams for the future and help them to come true.

Each day parents are challenged as “care managers” to insure cooperation and creativity among those who provide service to our children.

Each day, as our children climb on the school bus, they are a step closer to being adults. They step on the magical bus into their future and the future of our country.

Each day, we must ask ourselves: “Are the skills they are learning going to prepare them to become productive adults, caring and responsible citizens?”

Magic Bus Ride?

The school year is a precious opportunity for new growth. An opportunity to forget the hurts of the past, no matter how difficult. A new school year is a fresh start.

Build that future dream with much hope and picture the magic bus that can take you and your child into a year of wonder, new adventures and new learning in a land of diversity. We learn from our children and they learn from us, and that is also magic.

Wishing you a great year full of magic.

Comments:

When you were in school, how did you learn about people with disabilities, differences? Do you think there are things to be learned by sharing your lunch with someone who doesn’t talk with words? With someone who uses a communication board to talk? With a classmate who learns differently? With a friend who just happens to have a label of disability?

Keep Climbing–onward and upward.

All the best,

Mary

Signing Your Life Away–literally.

We usually pick our son Aaron up at his house on Saturday night at 5 PM and then bring him back Sunday night between 7-9 PM. And each time the residential staff person asks us to sign this form from the “company”:

RELEASE OF RESPONSIBILITY FOR LEAVE OF ABSENCE:

I, the undersigned, herby (sic) accept responsibility for …………………….while away from …………………… and absolve the management of said facility, its personnel and the attending physician of responsibility for a deterioration in condition, or accident that may happen while the resident is away.

For those of you who can’t believe this institutional baggage could still be around in 2010, you probably also can’t believe that “herby” has been faithfully photocopied and misspelled for all those years.

So me and “herby” are going to make a change. Starting today, I WILL NO LONGER SIGN THIS FORM.

Over the years I’ve gone from being mad, to sad, to frustrated, but now I think it is best to think comedy. (Say this in your best whiny Kathy Griffin’s voice and imagine a monologue from the queen of dish.)

“Actually to be on the agency’s ‘D’ list would be a step up. So, what the heck? It’s been at least 4 days since the supervisor decided I’m no longer public enemy number one–the queen of mean, so I should have enough social collateral to take this on, right?”

No matter how much the staff people beg that they are just doing their job and they will get in trouble if the form isn’t signed, I’m just not going to do it!

Now before anyone starts cheering please remember that in the ten years Aaron’s been in this residential and day program, he has regressed and there has been significant deterioration in his condition and skills. Yea, it’s documented. Remember all those accursed meetings?

But rather than blaming the loss on the parents and adding more passive aggressive guilt, let’s consider that maybe, just maybe, the ‘deterioration’ happens the 6 days a week when Aaron is in THEIR “professional” care.

And just what is “deterioration” anyway? It sounds like a remodeling job gone bad. Is that like when the concrete foundation starts to flake and fall apart? Do people actually deteriorate? Is that what all the plastic surgery is about? Face lifts, tummy tucks…worry that the concrete foundation is crumbling? Dr. Deterioration to the rescue?…”

Now Kathy Griffin would continue this comedy skit with some great anecdotes and have us all laughing. I can think of a staff person who said they didn’t have to brush Aaron’s teeth twice a day because “he didn’t brush his teeth twice a day.” Another staff person complained, “Why would I waste money and wash his hair everyday with shampoo. I only use shampoo once a week?” Or, “black socks are hotter than white socks, so you wear black socks only in winter.” (Actually this last one was in a day program and when I said there could be white wool socks, or black cotton socks–the color was not the issue–the staff person didn’t understand what I was saying.) Yes, indeed these could be great skits.

I’ve complained over the years about the wording on this form but the poor direct care staff in the house have no idea where the form came from, it has just always been there. They are caring people who have often had their own hard luck. They are making a little more than minimum wage. Some people might give them a nod and tell them they are doing God’s work, but society does not value the job they do.

So… drum roll… what to do? Probably the hundred or so family members who are signing this form are concentrating on the task at hand, giving their loved one a nice experience. It’s JUST A FORM. Life is all about choosing priorities. Choosing your battles. Is this worth an all out assault? Will haggling the company about this form make Aaron’s life better? Will it make my life better? I’ve put up with it for 10 years because I didn’t think so.

But the issue is, none of these “professionals” even knows how hateful and insulting this language is to families. They never put themselves in the families’ position; see it from their point of view. The fact when I was interviewing agencies, the first words out of their mouths were, “Oh, we love to have the family involved.”

And then after time, it becomes very clear that what they really meant to say was, “Oh, we love to have the family involved. We expect you to lavish us with praise and money, but then trust us unconditionally and ask no questions.”

Every good comic act and story needs a twist. So….what would Kathy Griffin do?

Maybe the solution is that next week I bring in MY OWN FORM. Before I give Aaron over to their care, I tell them THEY have to sign the form. They have to take responsibility for any regression and deterioration in Aaron’s condition.

Perhaps if the company had to own up to the undertrained, underpaid, undervalued staff. Perhaps, perhaps, perhaps…. Hell, they’d never sign it.

Take the stage–Passing the Mic

Do any of you have any great one liners you could add to our comedy routine? Have any of you had similar experiences? What kinds of forms do you sign to check your child in and out of their homes?

Share your ideas and keep climbing, onward and upward…

All the best,

Mary, herby and Kathy

Catch the followup to what happened click here

“Forgetting Spells” Inclusion and Happy Endings

Looking for the Village WiseWoman

When I get depressed, I like to pull out a Nora Robert’s book. Don’t laugh:)

For a couple hours, I let the queen of romance weave a tale about another world where, no matter how impossible the conflict, the heroes and heroines will overcome all odds and there will be a happy ending. If only real life was like that. Sigh.

In Nora’s book, “Once Upon A Rose” the village WiseWoman conjures up a “forgetting spell” which protects a baby girl by making her invisible except to those who will wish her “good will”.

Of course any time magic is used, there needs to be a sacrifice to restore balance to the universe–so in this story the mother dies so the baby can live. Of Course.

In my last post, I talked about Balancing my child’s needs and mine. (Click here)so I’ve been thinking about balance, sacrifice and love.

I’m hoping a WiseWoman will come along and cast a “forgetting spell” on me. I’m saying this because I think “forgetting” is the key to solving so many of our problems. What if we could cast a “forgetting spell” so that Aaron would only be seen by those who wish him well? He would be surrounded by people who care about him.

I always felt “Inclusion” and blending into the normal life of a neighborhood is Aaron’s greatest safety–just as animals are protected by camouflaging themselves into their environment.

Success Story 1

Last week early one morning, the van driver from Aaron’s day program and his residential caregiver were having words in the driveway of Aaron’s house. GEESH! After all the community building I try to do with the neighbors GEESH ALMIGHTY–the normal adults (the paid professionals who are caregivers) are practically coming to blows in the driveway. And who do they call to fix it? NOT the two different agencies who are making thousands of dollars on Aaron, no of course not–they call me.

So, I handled it! YEA ME! It took several phone calls and a couple hours work, but starting next week a new van service will be providing transportation. Hopefully it is a win-win situation. Most of all, Aaron won’t have to have an emotional stressful start to his day. And any neighbors who might have noticed the commotion will forget about it and Aaron will go back to being invisible. He will just be a normal guy being picked up. No one will notice or be concerned. If there is ever a situation where Aaron is in trouble, I’m hoping the “forgetting spell” will bring out those who wish Aaron “good will” and they will speak up and protect him.

Success Story 2

Because I was unhappy with some of the things in Aaron’s life and took action, the agency which supports Aaron in his day and residential program have been very upset with me. I was the Wicked Witch, the Mother from Hell, the woman who just kept making trouble, anything but the “WiseWoman.”

Well, about 8:30 this morning, I get a call from the supervisor who previously would hardly even talk to me. He called and said our loving staff person who has been with us for over 8 years had a family emergency. Could I possibly go to Aaron’s house?

In twenty minutes I relieved the staff person and held down the fort until the supervisor could get there. In that time, I took both the guys to the bathroom, plunged the stopped-up toilet, and threw a load of clothes into the dryer. I got the guy’s back-packs and lunch boxes ready and when the supervisor arrived was able to give him directions to Aaron’s program and help them into his car.

I felt really good I could help our staff person, Aaron, his housemate and the company. I also felt good that they called me. It was the “community” the “team” the “extended family” I was always talking about.

What struck me was how the attitude of the supervisor had changed. Of course I can’t speak for him, but I think this was a transformational moment in the way he looked at my role as a mother and as part of the larger ecological support system (see related post).

At one point I almost thought he was going to give me a hug. This was incredible because only a couple days ago, I would have put money on the fact he was purposely trying to “punish” me for challenging his agency and his authority, adding roadblocks to our already difficult and complicated life.

Happy Endings

I wish I could craft a romance writer’s tool and create a nice story arc which would tie up this story in a nice circle. There was an opening conflict, it was resolved, and both parties were changed. But “happy ever afters” are just in fairy tales and romance novels.

And unfortunately Aaron’s story will have another opening conflict tomorrow and tomorrow and tomorrow.

And that is just normal life. It is true of every person’s life, not just people with disabilities and their families. The morning after… always opens a new chapter.

So just having a happy ending for one day is okay.

Our staff person’s family crisis worked out okay. She called and thanked me for being someone she could count on. Which is perfect, we need each other. But the big change is that I don’t think the supervisor will ever again see me as the “Wicked Witch” or “Mother from Hell”.

I’m sure we will have more disagreements. He is the representative of a company which has few resources and lots of responsibility and I am the mother of a 35 year old person with autism and severe disabilities who needs lots of resources and lots of responsible people to care for him.

But today we didn’t need bigger-than-life heroes and heroines who did heroic deeds, we just needed WiseWomen and WiseMen.

And maybe today, I’ve had my own transformational experience. Maybe when I am looking for the village WiseWoman to create magic, I’ve learned that WiseWoman must be me.

Today felt like it had a “satisfying ending” even Nora Roberts would approve. And maybe more days with just plain old “satisfying endings” will lead to that elusive “happy-ever-after” for Aaron and all people with disabilities.

Are you becoming a WiseWoman or WiseMan?

Tell us your story or experience with forgetting, and happy endings.

If you liked this story, sign up in the “Get My Newsletter” box (top left). Also, I would appreciate it if you would use the buttons below to Tweet, send to Facebook or whatever your favorite social media. Thanks for being part of our growing community.

Climbing a Mountain is a Team Effort, each person is important.

All the best,

Mary

Roberts, N. (2001) Once upon a rose: anthology. New York: Penguin Putnam.

photo credit: Squeek

The Americans with Disabilities Act (ADA) was passed July 26, 1990. This is an update from the 20th anniversary post.

First Hand Discrimination is a Shock

Around 1985 our family was on a thousand mile camping trip to visit my sister in Phoenix, AZ. Aaron was about 10 years old, Tommy 8. That morning we packed up our tent and stopped about 10 AM in a Big Boy type restaurant in Flagstaff. We purposely chose a later time to miss the rush. We had eaten at similar restaurants each day of our trip.

We were sitting in a corner booth watching cars go by. Aaron was acting great, just eating his eggs and pancakes.

When the manager came up to the table we just smiled and expected him to ask if everything was okay. Instead, we got the shock of our lives. We were being asked, no told, we had to leave that minute. He would escort us out (after we paid our bill.) Couldn’t even finish our orange juice.

It seems someone complained they didn’t like the way Aaron looked. Not that Aaron was having a tantrum, or throwing things or … just didn’t like the way he looked. When I asked to be able to speak to that person we were told “NO, now get out. We don’t want your kind in our restaurant.” Me, being the great advocate I am, I just burst into tears, grabbed Aaron and ran to our car.

25 years later, I can still feel the pain and stigma of that experience as if I were living it right this minute. It was a transformational experience because it beat the fact in my head that we were not a normal family. Today that would not happen and the difference is ADA.

July 26, 2010 marks the 20th Anniversary of ADA: The Americans with Disabilities Act. The Declaration of Independence may have taken place in 1776 for white male property owners, the civil rights of women and people of color happened in the 1960s, but many people with disabilities, their families and friends think of the 1990 ADA as our civil rights act.

Here are outside facilities in Santos, Brazil. The international symbols saved the day.

Accessibility is for everyone

There has been tremendous progress in the last 20 years to change attitudes, fight discrimination and give people some opportunities in jobs, education, technology, and communications… a whole lot more than just curb cuts and handicapped parking places. But there is so much more to do.

In a later post, I will talk more about accessible websites. I’m trying to find more information on the official “Bobby Approved” (think English Bobby–police officer) which rates websites for being friendly to people with disabilities. There is a little blue police icon in the corner of many websites–well, maybe not many–but at least some.

ADA.Gov Official Website

If you have a couple minutes check out the official website of ADA.
http://www.ada.gov/ Information and Technical Assistance for the Americans with Disabilities Act/a>

Recommended Historic Films

http://www.ada.gov/videogallery.htm#anchor%20ADAsigning990

There are five films: ADA Signing Ceremony, My Country, Ten Employment Myths, Ten Small Business Mistakes, Police Response to Disabilities

Synopsis of ADA Signing Ceremony

This video documents the speech given by President George H. W. Bush when he signed the Americans with Disabilities Act (ADA) into law on July 26, 1990. In the video, President Bush speaks to a huge audience of activists, Congressional supporters, people with disabilities, and their families and friends gathered on the south lawn of the White House.

The 22-minute film, provided to the Department by the George Bush Presidential Library, is being re-released on the Internet to increase awareness of the ADA.

Synopsis of My Country

“My Country”

In this one-hour documentary, symphony conductor James DePreist, who contracted polio as a young man, profiles three people with disabilities whose lives have been shaped by the struggle for equal rights. Mr. DePreist is the nephew of African American contralto Marian Anderson, who in 1939 was prevented from singing at Constitution Hall. He draws parallels between racial barriers and the barriers faced by people with disabilities.

ADA Timeline

Our friends at the MN Governor’s DD Planning Council have this awesome resource on the timeline of ADA. http://www.mnddc.org/news/newsitems/ada_20th_anniversary_timeline.htm

2011 Update

Ohio Legal Rights released this press release about the 21st anniversary of ADA.

We still have much to do and with the budget cutbacks threatening basic services for people with disabilities, this is a time of great stress.

Keep Climbing: Onward and Upward

All my best,

Mary

Comments:

Do you have any stories to share in the comments? I know many people think the government is too large and there are too many laws. What are your experiences with ADA? What do you think is the role that government should play to protect the civil rights of vulnerable people?