Archive for the ‘School’ Category

Aaron watching Tommy play Nintendo

Summer Activities| A Mother’s Hope for Her Sons with and without disabilities

NOTE: This is when Tommy was 13 and Aaron 14 years old.

Is summer different for kids with and without disabilities?

This summer Tommy, my 13 year old son, …

• Went to 2 weeks of Boy Scout camp, an experience which included a hike on the Appalachian Trail.

• Had to choose between participating in baseball or soccer. In August, however, he began training for the school cross-country team.

• Was active in a neighborhood network of five boys who decided to start a Nintendo Gaming Exchange Club. His friends called him the minute he arrived home from activities, played games until supper.

* Was invited to stay overnight with a friend or cousin.

• Had a season’s pass to a nearby amusement park, and because he can use public transportation independently, spent at least one day there each week with friends.

The days of summer flew by for Tommy. He had individual activities with friends, but also family activities which included a camping vacation and travel to a National Park. His major frustrations were either the lack of time for pursuing all of his interests, or his Mom’s suggesting he do something “dumb” like reading a book or practicing his clarinet.

Our Family Camping Trip

Tommy’s brother, Aaron, age 14.

Aaron went to two weeks of special camp this summer.

Aaron’s major summer/weekend/vacation activity is watching Tommy play baseball, play Nintendo games…and riding to drop Tommy and his friends off.

Aaron also has a pass to the amusement park, but can only go with an adult (who so far is his mother).

Aaron spends every morning saying, “bus, bus…ready, set, go.” When the school bus doesn’t come, he sometimes licks on the front window, bites his hands and puts on his coat and backpack. He can’t figure out why his routine is different.

Aaron also can’t figure out why we spend all winter telling him to keep the front door shut, and all summer telling him to keep the front door open (but that’s another story.) *smile*

Aaron was on the waiting list for a short Easter Seals sponsored program in August, the only other community recreation opportunity available to him in our county.

What’s the Difference?

As I contrast the lives of my two boys, I can’t help thinking…

• …perhaps I wouldn’t feel Aaron’s isolation and lack of contact with any friends or same-age peers if Tommy had fewer friends.

• …perhaps I wouldn’t worry about Aaron’s behaviors, physical condition, weight and stamina if he were occasionally an active participant, rather than always an observer.

• …perhaps the hours and hours of inaction would not occur if Aaron had better skills or could entertain himself.

• …perhaps our family will adjust eventually to the sadness (and stress) we feel knowing Aaron’s only opportunities come from mom, dad or brother…and realizing it may always be that way.

* …perhaps we would feel so trapped if we could get respite regularly.

* …perhaps we’ll become accustomed to wearing a key around our necks so that the door can be locked with a deadbolt every time someone goes out or comes in (otherwise Aaron will run into the street or enter neighbors’ homes).

* …perhaps we’ll resign ourselves to our community’s “special” camps and “special” recreation programs, which effectively exclude Aaron from almost everything that is typical, regular, easily available and low cost. Perhaps hope will sustain us that someday a “community support” agency professional from somewhere, anywhere, could adapt, modify and begin to open community activities for Aaron and others.

* …perhaps our prayer will be answered that some child around Aaron’s age will care enough to help him join a circle of friends. Just once, even once.

* …perhaps/…oh perhaps…some wonderful person will believe that a community is more that a group of houses, businesses and people. Agency professionals must become bridge builders in the community. Families in which a child has a disability need the same support regular families have.

Summary: Separate is inherently Unequal.

The tragedy of having a child with a disability has nothing to do with a syndrome, impairment or disease. Words such as autism, CP, and intellectual disabilities are just descriptors the same way hair color, height, race, sex and personality are descriptors. Children don’t start out life knowing they are different. The tragedy is the reaction of families, neighbors and society, which emphasize differences.

The conflict for people with disabilities and for their families comes when the community limits opportunities, segregates and restricts individuals’ choices (e.g. Handicap swim is Tuesday; 1:30-2:30 p.m. and General swim is Monday to Friday 8:00–5:00).

It doesn’t matter that the limiting of opportunities appears, to have a good rationale or charitable intentions. Segregation limits freedom, limits choices, and limits development. “Special” means segregated.

Our Olympic Moment of Inclusion

One hot July day last summer, Tommy and his friends stopped by our house to make some peanut butter and jelly sandwiches for a picnic.

Unexpectedly, one of the boys asked if Aaron wanted to come along.

Five minutes later, all the kids were laughing, talking and riding their bikes to the park. One red-haired kid named Aaron was riding on a bike in tandem.

In about one-half hour the picnic ended and they brought Aaron back; that was the highlight of Aaron’s whole summer.

That moment for Aaron was sort of like the experience of a serious ice skater. Olympic gymnast, actor, or musician who practices day after day hoping to “bring it all together” for one magic performance or “big break” It was a “victory” –a spontaneous, normalized recreation experience, without his mom! Ahhh (smile-sigh). And now…back to work. But, perhaps, just perhaps…those wonderful, typical neighborhood kids will grow up more fully with the vision for and the experi3nce of community integration and freedom. They are the next generation of soccer coaches, swim instructors, church/synagogue group and scout learners.

The change of inclusion has begun.

Related Stories: (Click on title)

On the last day of Junior High School.

Dream Plan for Aaron–14 yrs old (Part 2).

America the Beautiful: A Family Vacation Plus

Keep Climbing: Onward and Upward

Mary

Comment:

What were your summer vacations like? Would they have been different if you had a label of autism or disability? If you were a parent of a child with a disability what would you be thinking? dreaming? Are summers different for kids with and without disabilities? Can you think of anything you could do to help?

Aaron and Friends

Test Questions | Segregation or Inclusion?

Friends and family members send me newspaper stories about people with disabilities. Some stories make me shout with joy and others make me want to cry and give up. Often my friends can’t figure out which ones are which.

For those of you who have been following my blog, think of this as the end of semester test–one of those little Reader’s Digest sort of quizzes.

Below are three stories followed by three sets of multiple choice questions? What do you think of these stories? Please respond in the comments.

1. It’s always sunny in Life Town: (click here) The mocked-up village square allows children with disabilities to learn the skills they need in daily life. (Sunday, April 3, 2011 By Jason Shough THE COLUMBUS DISPATCH)

a. This story about inclusion makes me shout for joy.
b. This story about segregation makes me want to cry and give up.
c. I’m not sure.

2. A prom: An enchanted evening for students with intellectual disabilities (click here) A Pennsylvania high school held a prom Thursday night for students with intellectual disabilities. The event included many elements of the traditional high-school event, including dinner, dancing, pictures and entertainment. “Many of them will not attend another prom because of some of the limitations they have,” teacher Amanda Murray said. “But they deserve it. They never have an opportunity to be together without tons of rules outside a school situation.” Pittsburgh Tribune-Review.

a. This story about inclusion makes me shout for joy.
b. This story about segregation makes me want to cry and give up.
c. I’m not sure.

3. Story Three: see the picture, Aaron and Friends, at the top of the page.

Aaron, my son with the label of autism, is at a Spring Gala dinner and dance with his neighbors.

Susan and her husband, Charles, live next door to Aaron. They belong to a church at the edge of the neighborhood.

Susan invited Aaron and Jack (Aaron’s housemate) to join her and her husband for the church spring gala. They picked him up at the house and Susan introduced Aaron to the Minister and her friends, helped him get his dinner, danced with him, took pictures, and brought him home.

Aaron’s staff person was there to help if needed, but Susan and Charles did everything they could to make sure Aaron and Jack had a terrific night.

They told me later, they really enjoyed being with the guys and thought everyone had a great time. Susan was surprised Aaron enjoyed the band and watching all the people. She hopes to take them again next year.

a. This story of inclusion makes me shout for joy.
b. This story of segregation makes me want to cry and give up.
c. I’m not sure.

——————————————————————————-
Okay, now respond in the comments. No peeking at my response:) Remember your response is based on your paradigm and not mine, diversity is allowed. This isn’t a test where you have to please the teacher. This is a discussion of important issues.

Undecided?

Check out my previous article: Teachers| Segregation or Inclusion
Consider the core question: Does each of these activities lead toward the inclusion or segregation of people with disabilities?

For a definition of inclusion check out the article: What is Inclusion? plus, pictures of Aaron and Tommy at graduation.

Still Undecided?

Check out Norm Kunc: What’s your Credo of Support? Does this activity build authentic self-esteem and skills, or does it support the charity model?

Answer to Question 1: Mock Town by Barb McKenzie

Here is a response to the first article about the mock town from Barb McKenzie, a parent leader:

After seeing the title and reading the article below from today’s Columbus Dispatch newspaper I wondered, “Can benevolence get in the way of equality and ordinary opportunities?”

Do our good intentions sometimes get in the way?

Mary’s Answer: Question 1

I agree with Barb. “Life Town” can never be a mock town. This artifical town reminds me of “safety town” for preschoolers and kindergartners to learn how to drive their bikes. Or the little pretend kitchens in kindergarten rooms. Or, Lou Brown’s famous cardboard bus that some special education teachers made for their classes in the ’70s.

There are some people who think that because a person’s IQ score says they function at a 6 year old level, doing pretend kindergarten type experiences makes sense. What the research shows people with disabilities have trouble generalizing to other environments, and because this was a one-time experience (not really a teaching experience with multiple trials and practice), and because the mock town was just that–mock.

In my mind, this whole experience does not promote inclusion in the community, instead it promotes segregation because it assumes the students need a protective environment and a “get ready” for the real world attitude. The twenty volunteers and the time, money could have been much better spent to practice “community” skills in the real community–they are high school students, they don’t need to be in a pretend environment. I’m embarrassed these teachers didn’t know any better. They should know more about authentic learning and functional curriculum.

Here is a new resource from a member of TASH if anyone is looking for best practice for people with severe disabilities.

“Systematic Instruction of Functional Skills for Students and Adults with Disabilities by Dr. Keith Storey .” This is a practical “how to” text for teachers and other service providers. The format, readability, and detailed description of instructional methodology make it a resource for instructors responsible for improving the skills of learners with disabilities.

Answer to Test Question 2: Dr. Cheryl Jorgenson

Here is a response from Dr. Cheryl Jorgenson from the University of New Hampshire:

This kind of segregation of students with disabilities should be part of our long-past history, not featured in a national news brief for educators in special education. The statement quoted by the teacher (Ms. Murray) that the students have limitations that “prevent” them from attending the regular prom is beyond the pale. Can CEC seriously be promoting or even acknowledging this practice? IDEA states that students with disabilities have the right to participate in extracurricular activities alongside their peers without disabilities.

I believe that CEC owes an apology to all students with intellectual disabilities and should make a commitment to publishing stories that promote the full membership and participation of all students with disabilities in school and community life.

Mary’s Answer: Question 2, Special Prom

I agree with Cheryl. In fact, Aaron and his friend Jenni went to his High School prom twice (with another couple who supported them). He thought it was great, though he said the black patent leather shoes hurt, the music was too loud and the tux had funny buttons.

Mary’s Answer to Question 3: Aaron at Spring Fling.

Going to the Spring Fling with the neighbors is exactly the kind of experience that builds inclusion. Let’s look at the definition of normalization and inclusion:

Is it an age-appropriate activity? YES
Will this be an activity the person would enjoy? YES
Does it take place in the real community? YES
Is there “natural proportion”? Are no more than 10% of the participants people with disabilities? YES
Will it be status-enhancing? Good for the person’s self-esteem? YES
Does the person with disabilities have the support they need? YES
Does the person with disabilities have the opportunity to blend into the normal environment and be like everyone else? YES
Is this an opportunity to meet new neighbors and establish new relationships? YES
Is there the chance of this happening again? YES

Many people think that because I do not like the “charity model” I am not Christian, or against churches or religion. In my mind, Susan, Charles and the other members of this church were practicing the Christian spirit and the best of religion.

I hope this make sense. There are many people who just cannot understand the differences between inclusion and segregation. To Aaron and our family, the differences make all the difference.

Keep Climbing: Onward and Upward:
“When we stop to lift one another up on the climb, we all reach a higher place.” Mimi Meredith

Mary

Comments: What do you think?

Do these kinds of stories inspire you or drive you to distraction? What would you say to good, caring people who want to create segregated events? Would you participate? Is this better than just sitting in the classroom? What does inclusive or segregated events teach the community about people with disabilities?

Aaron, Tommy and Cross Country Team

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.

photo credit: HA! Designs – Artbyheather

How do you measure what is important?

Hain Ginott, the famous child psychologist and author of classic books like “Between Parents and Child” and “Between Teachers and Child” taught about the power of establishing your own rules. He reasoned the rules helped you communicate your core values and helped you measure your actions.

One of the first articles on this blog was Shouting My Commitment. Where I tell the world exactly where I stand.

Over the years, my rule has been reduced to one sentence:

“Does this action lead toward inclusion, or toward segregation?”

End of Semester, but Beginning of Life.

Here at Climbing Every Mountain, many of our readers are students in Diversity and Disability Study classes at area universities.

As the semester is ending, I hope your time here has been informative, entertaining and caused you some “cognitive dissonance.”

Cognitive Dissonance

Piaget and other educational theorists say we must have “cognitive dissonance” to challenge our existing paradigm and beliefs–or there can be no change–no evolution in our thinking, no learning.

I received emails when several people disagreed with my last post, “I love Aaron| I hate Autism.” I spoke my truth, it meets my rule–so I am confident in my position. I welcome their “cognitive dissonance” and hope they will continue the discussion–so all of us will learn new things.

Evolving from Student to Teacher

One of the responsibilities of being a teacher is to raise issues, even if they are not popular. Sure, you need to be thoughtful and research your topics. Sure, you need to present logical arguments and use real world examples. Sure, you need to be aware of learning styles and cultural diversity.

At the end of the semester, a student must synthesize all the new information and create your own rules to live by. What will you “prune” away, and what ideas, facts, theories will now become part of the way you think and act?

If your measuring stick is different than others, this is tricky. Many people will disagree and see things based on their own measuring stick. That’s okay. That’s their right.

WARNING: The more important the topic–the more diversity of opinion.

And, even though it is hard to admit, they might be right. Their opinions might cause you cognitive dissonance and the spiral of learning begins all over again.

Evolving from Student to Teacher to Student

As teachers, you are going to be the advocate for not only yourself, but also the children in your care, their parents, the other teachers, the administration, the community, everyone.

You will have to keep learning, not just for survival, but because you want to keep growing and changing. You will have to find the empathy to see things from other’s point of view.

You will have to learn to take baby steps and compromise–often.

Nothing is Perfect. Nothing is totally Pure.

If you are a leader, you will face difficult decisions. You will need to be able to know what you stand for. When to walk away. When to compromise. When to ignore. When to dig in and fight.

Inch by Inch, anything’s a cinch (Schuller)

“Does this lead toward inclusion, or toward segregation?”

This mantra works for me but you will need to find your own. What defines you, your heart, your truth? What is your call to action?

Bronfenbrenner, another educational psychologist, showed us how to think in systems. I’ve written about how this applies to Aaron, my son with the label of autism in a post called The Circles of Life, but want to share some ideas from system’s theory and my point about moving from segregation to inclusion.

Individual Change

If an individual student with a disability can join general education students at a lunchroom table–this is one inch toward inclusion and away from segregation. It is a move in the direction of inclusion.

Classroom Change

If a colleague differentiates an assignment for a class, so that ALL can participate–we celebrate this step toward inclusion.

School Change

If a policy is changed, and students with disabilities can go on the fieldtrip with their general education class–this is a small step toward inclusion.

Cultural Change

In my opinion, recent political events demonstrate certain politicians are trying to demonize public employees–especially teachers–so they can further their agenda to only teach certain conservative curriculums, dismantle collective bargaining and a teacher’s influence in his/her own class, sabatoge the public schools, and create more private/charter schools at public expense. They no longer want to separate church and state.

Using my measure of, “Does this action move toward inclusion, or toward segregation” it is clear it moves toward segregation.

As teachers in the 21st century, you are going to be caught in the cross-fire. You will need to make choices and decisions.

The administration in private/charter schools can make a rule that says, “We don’t take kids with disabilities.”

Since private/charter schools do not have to follow many of the federal laws this is their right.

Personal Change

You are not going to be able to just ride this one out. YOU are going to have to make choices and decisions.

What rule do you want in your community, your life?

Is this the kind of community and/or school where you want to teach?
Where you will send your children?

Do you want to be forbidden subjects about diversity, science, history and even basic tenants of democracy and freedom?

Obviously this is a major discussion. What role do you want to play in the discussion?

Conclusion

I want to invite everyone to continue as members of our Climbing Every Mountain community, and encourage you to make rules that will guide your life.

I wish you well. I wish you courage.

Below is part of a speech Haim Ginott gave to a group of teachers on the first day of school. I find it inspiring, I hope you do too.

Dear Teacher,

I am a survivor of a concentration camp. My eyes saw what no man should witness.

Gas chambers built by learned engineers.
Children poisoned by educated physicians.
Infants killed by trained nurses.
Women and babies shot and burned by high school and college graduates.

So, I am suspicious of education.
My request is that teachers help students become human.
Your efforts must never produce learned monsters, skilled psychopaths, educated Eichmanns.

Reading, writing, arithmetic are important only if they serve to make our children more human…
(Haim Ginott, 1972, Teacher and Child)

Keep Climbing: Onward and Upward

Mary

Share your Thoughts

Do you have a bottom line? Can you sum up the rules of your life in one or two sentences? Do you believe in inclusion, do you believe in segregation? It is that simple. Whatever your choice—your actions are more important than your thoughts or words. What did you think of Haim Ginott’s message to “be human”?

photo credit: HikingArtist.com

The Right to Communicate| We are the (new) Experts

In the early 90s, Rosemary Crossley, Annie McDonald, Doug Biklen and others shocked the world with new ideas about people with the labels of severe disabilities and autism being able to communicate. They were pioneers who opened the world for many people to be able to use their voices to change their lives.

The movie Wretches and Jabberers is traveling to 40 cities to celebrate Autism Awareness Month in April. Click here for a schedule. I hope you will see the movie and share your thoughts in the comments.

Augmented communication made all the difference for my son Aaron, who has the labels of autism and developmental disability. He was able to work with our talented speech therapist and friend, Tina Veale, and discovered new worlds. He was able to attend general education classes for the first time. He was able to get the school to provide a full time facilitator who assisted him in these classes.

Here is an adapted version of the poem I originally wrote for Anne Donnellan’s “Moving On” series of books about Facilitated Communication.

(Ulrich, Mary in First Hand: Personal Accounts of Breakthroughs in Facilitated Communicating, (Anne Donnellan, editor), Richard, J., Jackson, K., Ulrich, Mary and Aaron (1993) DRI Press: Madison, WI. 45-46.)

Wrong and Right and the Paradigm Shift

They thought the world was flat and Columbus’ ship would fall over the edge.

But they were wrong!

God told them the sun went around the earth, so they excommunicated Galileo.

But they were wrong!

They taught Jupiter had three moons and marked children’s answers in red.

They swore Agent Orange and DDT were safe.

THEY…
They…
they…evaluated and labeled our children as “not educable,” “idiots” and said we “belonged with our own kind.”

In the name of charity and protection and “Heaven’s Very Special Child” they isolated and segregated us into institutions, ICFs, special schools, special classes, Special Olympics… lives of “specialness.”

But they were wrong!

They showed us their statistics, charts and test scores which PROVED we could not communicate,
were incapable of love
or feelings
and should be left alone because we wouldn’t “know the difference between a person and a rock.”

When we became “social critics” and protested with our behaviors, “for our own good” they shocked us with SIBIS or cattle prods, squirted us with vinegar, or put us in time-out … for life.

With their eternal trials of peg boards and beads, they made us prove we were “ready” for families, friends, regular classes, homes, jobs of our choice and … normal lives everyone else took for granted.

But their magic was limited to numbers and letters. And their motives–pure or sinister–fed their job security, tenure and egos.

But we knew all along, and it was these people who called themselves experts who were “not educable” and “idiots.”

Because… THESE EXPERTS WERE WRONG!

Now we only trust those professionals who repeat choruses of “Forgive us!” and

“We don’t know why, or how, but take our hands and we will learn together.”

Oh FC! Oh Skallagrigg!* Oh Judder!

We can communicate!

And with our new voices,
and new skills,
and confidence,
we will march into the future,
because

WE can love… and feel pain… and laugh… and cry… and…
We want to have families and friends and… be human.

We want to be people first and be raise our voices in making this diverse world a better place!

And, we will prevail, not because of laws or advocacy, or science but—because love has its own connection and

WE ARE IN TOUCH WITH WHAT IS RIGHT–

WE ARE THE EXPERTS!

* Horwood, W. (1987) Skallaggrig. London, UK: Penguin Books.

What do you think?

Have the people who called themselves “experts” changed and become more humble? Are they really just liked the cartoon graphic: Ph.D. (Piled Higher and Deeper)? Do people with autism and other severe disabilities now have new voices? As we get ready to celebrate Autism Awareness in April, is there new hope? Will you see Wretches and Jabberers?

Keep Climbing: Onward and Upward

Mary

Related Posts:

Bob Williams wrote a much better poem than I: “What if”

The Right to Communicate (1): Wretches and Jabberers is about the new movie coming to theaters in April. The dream continues.

Anne McDonald died last Oct, but she was the one who first opened our eyes to the possibilities of communication.

Norm Kunc

Norm Kunc changes lives.

I would spend the whole year teaching university students and teachers about the need for inclusion, normalization, self-advocacy, people first… and they would nod their heads (or scratch their heads at the crazy lady), pass their tests, and go on with the way they always did things.

Norm Kunc came to campus, spoke to these same students and in fifteen minutes–he rocked their world.

That quick–his message is that powerful.

Here is Norm and Emma Kunc’s website. I’ll write more about them in another post, but if you get a chance book them or attend one of their presentations. It will change your life.

Here is Norm’s Credo of Support. It is not the same as hearing him in person, but the video message shows the power of words and the talents of self-advocates. When Norm introduces the video he says the words just poured out of his heart.

Here’s hoping it touches your heart too.

Keep Climbing: Onward and Upward

Mary

Talk about it!

What did you think of the Credo of Support? Do you think the message is stronger coming from self-advocates? What is your personal credo? Can you think of ways people with disabilities can give their own message?

Would you like to hear more about Norm and his wife Emma’s work?

photo credit: Leonard Chien

WE THE PEOPLE….

Each week the Arc (formerly, the Association for Retarded Citizens) reports on what is happening in Washington, DC. The Arc monitors the public policy and legistlative process so that it may advocate for people with disabilities and their families. UCP (United Cerebral Palsy), TASH (formerly, The Association for Persons with Severe Handicaps), and several other national organizations all work together to advocate for our children.

Here is the Arc report for this week: notice the depth of the issues. Also notice most of the news is NOT GOOD for us. Each week there is another detailed report. I am thankful these organizations keep up–that is worth my dues.

This is a difficult time to give our children with autism and other severe disabilities the day-to-day care they need PLUS worry the sky is falling on the support we depend on.

Unless you are independently wealthy, it is a humbling experience for parents to be at the mercy of the system. We need to keep informed and do what we can.

“Think globaly, act locally.”

Here

Subject: The Capitol Insider for the Week of March 14, 2011

The Arc Public Policy
Update Profile

March 14, 2011
Vol 16, Issue 9

Action Alerts

None.

Major Events Last Week

Medicaid/Health Care Reform – Kansas Governor seeks to block grant Medicaid and cuts services

Kansas Governor Sam Brownback has written HHS Secretary Sebelius requesting a waiver of the Medicaid maintenance of effort (MOE) requirements and a full Medicaid block grant. The MOE requirements are in place to make sure that states do not drop people from eligibility before the Medicaid Expansion takes place in 2014. Many Republican Governors have asked for the flexibility of a block grant so that they can cut the Medicaid program and not comply with the regulations.

Social Security – DPC staff testify at Senate Appropriations Committee on impact of proposed spending cuts

On March 9, the DPC’s Marty Ford testified before the Senate Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies in her capacity as Co-Chair of the Social Security Task Force of the Consortium for Citizens with Disabilities (CCD). She testified on the Fiscal Year 2012 budget request for the Social Security Administration (SSA) and the impact of possible cuts to the Fiscal Year 2011 budget on the agency’s administrative resources with which to process claims for people with disabilities and seniors. In describing the impact of the House-passed continuing resolution (CR) for the remainder of FY 2011, she stated, “If SSA is forced to furlough employees to address the full $430 million shortfall from the current CR spending level, it will result in nearly a month of furloughs, having devastating effects on service to the American public. In one month of furloughs, SSA would complete 400,000 fewer retirement, survivor, and Medicare claims; 290,000 fewer initial disability claims (with processing time increasing by a month); 70,000 fewer hearings; and 32,000 fewer continuing disability reviews. In addition, H.R. 1 severely cuts funds for vital information technology (IT) improvements and funds to build the critical new National Computer Center, which must be built to protect Social Security electronic information and infrastructure.” Read her full testimony at:

http://appropriations.senate.gov/ht-labor.cfm?method=hearings.download&id=f7b3c5f6-ec78-4299-bf55-af8e7ee780d7

Employment – The Arc submits testimony for the record for Senate hearing on employment of persons with intellectual disabilities
On Wednesday, March 2, the full Health, Education, Labor, and Pensions (HELP) Committee held a hearing, entitled, “Improving Employment Opportunities for People with Intellectual Disabilities.” Lynnae Ruttledge, Commissioner of the Rehabilitative Services Administration, and Sharon Lewis, Commissioner of the Administration on Developmental Disabilities (ADD), testified along with a panel consisting of a state employment agency director, a private employer, a self advocate, and a researcher. The hearing focused on the barriers to employment faced by individuals with intellectual disabilities and offered criteria for and examples of integrated, competitive employment. All panelists strongly supported “employment first” principles. Read The Arc’s statement at: http://www.thearc.org/document.doc?id=2983
Read the hearing testimony and watch the proceedings at:

http://help.senate.gov/hearings/hearing/?id=536891af-5056-9502-5d9c-9a3e588e3214

Health Care Reform – Federal rules released on states waivers for opting out of key health reform provisions

The Department of Health and Human Services (HHS) and the Treasury Department released rules Thursday outlining how states could apply for Section 1332 waivers. These waivers would allow states to opt out of key health reform provisions like the exchanges and individual mandate if they meet certain benchmarks for affordability and coverage. In current law the waivers begin in 2017. However the Obama Administration is supporting moving the timeline up to 2014. Senator Wyden (D-OR) introduced a bill in the previous Congress to make the change.

ADA – Justice Department settles with OR school district in Autism service dog case

The U.S. Department of Justice reached an agreement with the Hillsboro School District in Oregon so that a student with autism may bring his trained dog into the classroom for a trial period. The student’s parents had been trying to get the district to allow the dog to accompany the child for three years. The dog distracts the student when he is about to engage in behavior that could be dangerous. To read the press release about this case, see:

http://www.justice.gov/opa/pr/2011/March/11-crt-285.html

Major Events Ahead

FY 2011 Appropriations – House to vote on another short term funding bill; includes $6 billion in cuts

As soon as Tuesday, the House is expected to vote on a three-week Continuing Resolution (CR) that would cut more than $6 billion from current discretionary spending levels. The Senate is expected to vote later in the week. This latest CR will keep the government running through April 8 after the existing two-week CR expires on March 18th. This would be the sixth continuing resolution since the start of the current fiscal year on October 1. House conservatives are urging their leadership to make deeper cuts and defund the health care law as part of the CR. Negotiations continue between the Administration, House, and Senate leadership on completion of the FY 2011 appropriations.

Long Term Services and Supports/ Health Care Reform – House to hold hearing on the CLASS program this week

The Health Subcommittee (R-PA) of the House Energy and Commerce Committee will hold a hearing titled “The Implementation and Sustainability of the New, Government-Administered Community Living Assistance Services and Supports (CLASS) Program.” The Arc and UCP strongly supported passage of the CLASS program as part of the Affordable Care Act. For more information on the hearing see:

http://energycommerce.house.gov/hearings/hearingdetail.aspx?NewsID=8332

For more information on the CLASS program see:

Http://www.advanceclass.org

Announcements

Abuse and Neglect – New York Times publishes expose of state owned group homes in New York

A front page story on Sunday, March 13, entitled “At State-Run Homes, Abuse and Impunity” exposes significant abuses by direct care workers. It specifically highlights the difficulty in terminating direct care staff with documented cases of abuse and neglect due to the state’s public employee union rules. Read the article at:
http://www.nytimes.com/2011/03/13/nyregion/13homes.html?_r=1&scp=2&sq=disabled&st=cse Readers are encouraged to add their comments to those already posted at:

http://community.nytimes.com/comments/www.nytimes.com/2011/03/13/nyregion/13homes.html?sort=oldest

————

Please note that you can view previous issues of the Capitol Insider, at thearc.org anytime by choosing “Capitol Insider” under “Public Policy.”

If you have any questions, feel free to contact me at:
mailto:acosta@thedpc.org

Sincerely,

Annie Acosta
Director of Communications and Grassroots Advocacy
Disability Policy Collaboration

Keep Climbing: Onward and Upward
All my best,

Mary

Please comment:

What issues do you care about? Is there anything here you will click on a link and learn more about? Do you think it is important to keep up on the national issues?

The Right to Communicate

BACKGROUND

The world is a hostile place for people who can’t talk with words. Many people don’t listen to body language, signals or even temper tantrums. They often see “behaviors” as something to extinguish instead of a person’s desperate attempt to communicate.

Behaviors = Communication

TASH, an organization of professionals, advocates and parents, passed a resolution written by Bob Williams about the right to communicate: even if it means the person takes a longer time to give their message; uses body language or augmented devices; and especially if they need another person to help facilitate the message. Here is a link to their resolution:

The right to communicate is the means by which all other rights are realized and is, in itself, a basic human right. (TASH resolution on the Right to Communicate.)

Anne McDonald – Right to Communicate

Communication falls into the same category as food, drink and shelter – it is essential for life, and without it life becomes worthless. (Anne McDonald)

I spoke about Anne McDonald in an earlier post on Climbing Every Mountain entitled: Until Eternity: Anne McDonald. Anne was a pioneer who spent 14 years in an institution–mainly because she couldn’t communicate. Read her inspiring story: The Right to Communicate.

The Autism Society, Area 23a and AMC theaters present the documentary WRETCHES & JABBERERS to commemorate National Autism Awareness Month in April.

WRETCHES & JABBERERS is a poignant narrative directed by Academy Award winner Gerardine Wurzburg that follows two men with autism, Tracy Thresher and Larry Bissonnette, as they embark on a global quest to change attitudes about disability, intelligence and communication.

Larry Bissonette is an award winning advocate and “outsider” artist. For more information on the Wretches and Jabberers official blog and examples of Larry’s written and visual art. Check out: Bissonette’s blog and biography.

About W & J name

The origin of the film title, “Wretches & Jabberers” emerged in Finland from conversations by Larry, Tracy and Antti (a friend).

As the group had lunch at a sidewalk cafe, Antti humorously declares the world is divided into “Wretches” – those with limited speech – and “Jabberers” – those who can speak freely.

The next day at the conference, Antti asks the audience to “dispel the darkness around us poor wretches. Take us for real people. Don’t sideline us.”

The video Wretches & Jabberers is about the life-sustaining power of relationships–the personal connections people make through communication. It also vividly demonstrates the power of personal assistants and communication partners.

Official Trailer of W & J

Soundtrack for W & J

About W & J Soundtrack

This limited edition CD features 20 original songs written and produced by J. Ralph in collaboration with award winning artists: Antony, Devendra Banhart, Paul Brady, Bonnie Bramlett, Vashti Bunyan, Martin Carthy, Judy Collins, Lila Downs, Vincent Gallo, David Garza, Ben Harper, Scarlett Johannson, Nic Jones, Norah Jones, Leah Siegel, Carly Simon, Stephen Stills, Ben Taylor and Bob Weir.

All profits from the sale of this Limited Edition Soundtrack helps promote the message of W & J. and people with autism. Click here if you are interested in purchasing the soundtrack.

Sensory Friendly Films

Some people with autism have problems going to a typical theater. Some families are reluctant to take their family member for fear they will make noise and disturb other patrons and they will be embarrassed. Based on a request from a parent, the AMC Movie theatres developed a partnership with the Autism Society to promote sensory friendly film experiences in their theatres.

AMC Sensory Friendly Films:

Auditoriums show new releases without the pre-show advertisements or movie trailers.

* The house lights in the auditorium are turned up,

* The sound turned down.

* Guests are invited to get up, dance, walk, shout and sing.

WRETCHES & JABBERERS will have the AMC Sensory Friendly Films program. For a list of locations near you as well as Larry and Tracy’s speaking schedules (click here).

“We are each an individual in our own way–not a label.”

Life is what people make it but without community it is dark and dismal. . . . The community begins with communication.”

Tracy Thresher, self-advocate and documentary film star who types and speaks to communicate (Wretches and Jabberers).

Resources:

For additional stories about people who talk in different voices and different ways visit EveryoneCommunicates.org

SPEAK UP! Add you voice in the comments.

Do you agree with Tracy that a “community begins with communication?” Are you a “Jabberer”? Will you participate in seeing the movie, buying the soundtrack, or inviting Tracy and Larry to speak?

Keep Climbing: Onward and Upward.
All my best,

Mary

photo credit: Okinawa Soba

Bulletin Board

Today and Everyday is “Stop the ‘R’ word” Day.

Parents, Advocates and Schools around the country are joining in.

Many people are always complaining that the world is too complex –there is nothing they can do.

Stop the “R” word Challenge

YOU can make a difference by choosing respectful language in your own conversations. Doable, Yea!

If you have a story, please share it in the comments.

Here are the articles I have posted on this topic as well as some information on Rosa’s Law which was passed last year to take the words “retarded” out of all public documents. This is more than just being politically correct, it is a step toward seeing people with intellectual disabilities as being “human.”

Love-not labels| Rosa’s Law

Retarded No More

The “R” word| A Challenge to Bloggers

Definitions of the word “Retarded”

Building Community| Using People First Language

Do the Words “Disability” and “Handicapped” mean the same thing?

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Wolf Wolfensberger

Father of Normalization and Citizen Advocacy

Wolf

Wolfensberger

 

 

 

 

 

 

 

 

On February 27, 2011 Wolf Wolfensberger died.

Since 1973, Dr. Wolfensberger had been a professor in the School of Education at Syracuse University. His enormous contributions to the disability community will be felt for generations to come.  

 

Dr. Wolfensberger was the originator of Social Role Valorization, the Normalization Principle as well as Citizen Advocacy: major concepts that strongly influenced disability policy and practice in the US and Canada.

 

He was widely recognized as a major contributor to the field of intellectual and developmental disabilities in the 20th century had a reputation for being a stirring and controversial speaker.

 

He was the author and co-author of more than 40 books and monographs, and more than 250 chapters and articles. His writing has been translated into 11 languages.

 

His best known books were: Changing Patterns in Residential Services for the Mentally Retarded, The Principle of Normalization, PASS, and PASSING (Evaluation tools for programs to meet the principles of Normalization). 

Dental Visits and Saying AHHHH  

 

Dream Plan for Aaron 1981| (Part 1)

 

 

 

 

 

 

photo credit: Okinawa Soba

BULLETIN BOARD

 The Climb: New Theme Song for our blog

Attention all music lovers:  Pastor Snoopi Botten and Blake Roberts have added their magic digitalized effects to The Climb, (click on link).

Blake suggested this song become the Theme Song for the Climbing Every Mountain blog.

It’s PERFECT and their effects are pure magic.

You might remember both Snoopi and Blake shared their version of the  classic  Do You Hear What I Hear (click on the link) on Christmas Day. 

Check out their earlier post for their amazing personal stories and the details of their method for helping us all hear and see things in different ways.

Thanks to both Snoopi and Blake for being part of this community.

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Pete Wright, Esq. of wrightslaw.com

Two Workshops in Cincinnati, OH to discuss the educational implications of chronic illnesses/disabilities. These workshops should be great for anyone interested in recent changes in IDEA, 504 et al… and children with chronic health needs.

 APHOES National Conference:  May 5-6 

Special Education Law and Advocacy Program:  May 7

For conference agenda and registration click on links.

If you have any questions, please contact the School Intervention Program at 513-803-0513 or by email (SIP@cchmc.org).