Archive for February, 2012

Hope For The Families

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.

Two Friends by Martha Perske

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”

Hand Therapy| Homework with a Bang

Homework with a bang

Life Long Learning| like it or not.

Six weeks ago I fell and broke my wrist. Bad news is that it hurt like #$@! The good news is it’s healing well and gave me the opportunity to learn more about therapy. Hey, I’m a glass-half-full kind of person, right?

Aaron, my son with the label of autism, started physical, occupational and speech therapy when he was a baby. In fact, therapy was one of the things we won in our due process case with the school district. So, I’ve had years of observing therapists in action. We saw Aaron go through paradigm shifts in philosophies and approaches from sensory integration, NDT (neurodevelopmental), isolated medical model therapy, multidisciplinary, transdisciplinary, interdisciplinary…and others I can’t even remember.

My broken wrist was my first hand *laugh* opportunity to actually be the patient. I am now officially “disabled” I have crossed into the “yet”.

Of course there are many differences between Aaron and my experience:

*Mine is for a short time.
*I can tell the therapist when it hurts.
*I can ask questions.
*I can understand what the therapist is trying to do.
*I can look for ways to practice the exercises.

Because of my injury, I am going to a physical therapist who specializes in Hand Therapy. Hey, this is the day of specialization. I wonder if there is a physical therapist who specializes in “thumb” therapy? Probably is.

My therapist is great. What is really interesting is for the first time I finally understand how all those stairs-to-nowhere and giant pegboards ended up in special education.

In the 70s, when children like Aaron were granted the right to education (PL. 94-142) no one knew what curriculum to use for people with severe disabilities. It made perfect sense to start with the medical model and the exercises used in the therapy rooms. In fact, in the early days, many people thought education would be the cure.

Home: One Pound Weight

Therapy: One Pound Weight

Functional Activities

As many of you know, Lou Brown from the University of Madison, WI is one of my heroes. Not only is he an amazing person and teacher, but his innovative ideas helped win Aaron’s lawsuit, and introduce a “functional curriculum” which impacted all Greater Cincinnati.

Functional Curriculum:

If the person doesn’t do it, will someone else have to do it?”

What seems like a straightforward definition is often confusing to people. For instance. When I went home and substituted a hammer was that functional learning?

If you answered “NO” you are correct.

When a hammer is just a substitute for a one pound weight, it is not a “functional skill.” (BTW I felt ridiculous watching TV and pumping the hammer with claw.)

In a medical model or scientific method experiement, you always isolate and reduce the activity to one element. Exercises are specific to one area, so they can be more easily measured.

Did this exercise strengthen the wrist?

Can the patient lift one pound?

How many degrees can the patient turn their wrist?

After a week of practicing lifting one pound weights, could the patient now lift a two pound weight?

The answer would be clean, it would be easy to chart.

Now, if I used the exercise of lifting the hammer (one pound) to hit a nail, or build a cabinet then it would be a functional exercise. But it no longer requires just one skill. It would be more difficult to chart.

Make sense?

The hammer is a tool. The one pound weight is a good therapeutic exercise for my wrist, but until I give the hammer a purpose, there is no “functional skill.”

The idea of “functional skills” is that a person would practice the exercise many times, as opposed to just a couple times a week in therapy.

For years Aaron and others climbed the stairs-to-nowhere and were swung in nets to build therapy skills.

With a “functional curriculum” Aaron learned to climb the steps in the hallway to go to lunch. He used a swing on the playground at recess. He would practice these skills several times a day. They were real, not artifical exercises done in isolation.

Rotating Wrist Muscles

Rotating Wrist Muscles

Here is the test:

Goal is to strengthen wrist by turning an object.

Which picture shows a “functional” task?

Does that help explain it?

Keep Climbing: Onward and Upward

All my best,

Mary

Comment:

Of course, the peppermill is the correct answer. Can you think of other “functional” activities? Did this help explain this concept.

Related Articles

Dr. Lou Brown: Busy vs. Bored, Life Space Analysis for People with Disabilities

Functional Skills: Use it or Lose it

It’s a Jungle Out there| Inclusion in the Grocery Store

Bob Williams and Advocates at White House

BOB WILLIAMS

Bob Williams is currently the Special Assistant to the Director of the D.C. Department on Disability Services.

Bob served in the Clinton Administration as Deputy Assistant Secretary for Disability, Aging and Longterm Policy at the U.S. Dept of Health and Human Services, Washington, D.C.

I bet Bob had to program that title into an automatic response button on his augmented communication device *smile*. It would take way too long to say, much less spell out letter by letter.

Because Bob has cerebral palsy and doesn’t speak with words, he knows the importance of augmented and alternative communication.

He wrote the TASH resolution on “The Right to Communicate” (click here).

“What if???”

I first met Bob Williams when we were both serving on the TASH Board of Directors. At first, he seems shy but don’t be fooled–his power is in his message.

Below is a poem he wrote when Facilitated Communication first opened the communication door for many people with autism, including Aaron.

What if???

What if
autism is a mistake?

Someone else’s
mistake?

Ours;
not theirs.

What if
autism really is…

Flawed communication?

More ours
than theirs.

What if
the Truth

Suddenly all came
gushing out

LIke vinegar spray
or electric shock
from a Sibis*?

What if
they started handing out Nobels

For humanity’s
inhumanity?

Who do you think
would win more?

Us or them?

What if
autism is a mistake?

Someone else’s
mistake.

Bob Williams

(*The Sibis helmet gives electric shocks to force compliance.)

If you have any doubt about the power of communication, check out Bob Williams as he talks about the ADA and “presumed competence.” In (about) minute 4 of the video he talks about the need for technology to assist in communication.

Health and Disability

Here is a speech Bob gave on Health and Disability (click here).

Linchpin

Bob would be what Seth Godin calls a “linchpin.” He is remarkable and “pokes the box.” He has influenced the President of the United States; laws like ADA, IDEA and the technology act; national policy; parents, self-advocates and everyone he meets. The world is a better place because of Bob Williams.

Keep Climbing: Onward and Upward
All my best,

Mary

Comment:

Did you feel the passion and power of the poem? Any other “What ifs???” in your life? What did you think as you watched the Bob Williams video? Did this make you want to try just a little harder to communicate with people who don’t talk with words?

Related Post: The Right to Communicate| Wretches and Jabberers

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.”
————————————————————-

HEARTACHES: “NO!”
HEARTSONGS: “Let’s talk about this before you decide.”
————————————————————

HEARTACHES: “Get over here right now!”
HEARTSONGS: “I need you with me.”
————————————————————-

HEARTACHES: “I told you so.”
HEARTSONGS: “That was harder than you thought.”
—————————————————————

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)