Archive for February, 2012

The “R” Word: A Challenge to Bloggers.

Stop the “R” Word

March 7, 2012 is designated “Stop the ‘R’ Word day. If you go to their website they have many ideas for activities and actions. If we each do one thing, we can make a difference for the future of our children. Please share your thoughts and actions in the comments.

David Hinsburger and the “R” word.

David Hinsburger is an award-winning author and advocate for people with disabilities. His article titled: The People who “ARE” the “R” Word is a must read classic for anyone who doesn’t understand what the fuss is all about.

Sticks and Stones and names hurt

My Letter to a Major Blogger

As promised in my post “Definitions of “Retarded”, this is the letter I wrote to a major blogger when he used the words “retarded” and “idiot” in one of his posts. It is edited for this post.

Hi _____,

I have followed your blog ____ for a long time and enjoy your stories, ideas and writing style. However, I have issues with your use of the words: “retarded, idiot, moron and imbecile.”

You have made strong statements about using whatever words you want–even if they offend people and hit their hot buttons.

You can use words like “idiot, moron, imbecile, crip, tard…,” but why?

I agree this is America and defend your right to freedom of speech. I agree people who find these words offensive can just unsubscribe. But… you are a smart and thoughtful person. Why would you want to purposely offend vulnerable people?

I would rather believe you don’t understand how much these words hurt.

Mental Retardation–two words that matter.

My son has the label of “mental retardation” now called an “intellectual disability.” Because of those two words, he was not allowed to go to public school.

Because of those two words we had to spend three years in court, costing thousands of dollars. We, along with other parents, had to prove our children were human and had the right to “life, liberty and the pursuit of happiness.” We had to prove in court that our son would benefit from being around other people and his mere presence on the school grounds would not harm other children. Because of those two words he was not allowed to participate in swimming lessons with the other kids in our neighborhood PUBLIC park. Because of those two words our family has been refused to be served in a restaurant and a Doctor refused to have our son for a patient…need I go on?

But our problems were minor compared to people with the label of intellectual disability in the past.Parallels in Time: A History of People with Disabilities

Just a generation ago, because of those two words, people were treated as animals instead of humans. They were sterilized, given doses of radioactive materials in their oatmeal. They were taken from their families (“for their own good”) and warehoused in inhuman institutions. Some were not given clothes and had to sleep on straw. They were denied even the most basic human rights–all because one psychologist in one situation gave them one test and labeled them those two words.

Most history books have made people with disabilities invisible. So, you probably aren’t aware, but the words: “moron, idiot and imbecile” came straight from the medical manuals of less than 40 years ago.

There are still churches which will not allow people with the label of those two words to marry, some churches do not even allow “those” children to attend their services or receive the sacraments. Many private schools and churches legally still segregate and discriminate against our children with those two words.

There are many normal couples who joyfully want a baby–until they hear those two words, and then immediately abort. There are Baby Doe cases where if the baby has Down syndrome and is assumed to have mental retardation, the family refuses to take the baby home from the hospital and refuses to allow the baby to have food. There are cases of “wrongful birth” where the parents sue the Doctors for allowing their child with “mental retardation” for being born.

In 2012 we can add the case of baby Amelia Riveria who was refused a transplant because she had an intellectual disability. The hospital has recently apologized.

“Mental Retardation, retard, retarded” are not funny words”

In Ohio, the state legislature passed a bill in 2009 to remove the words “Mental Retardation” from state agencies and its documents. This was the work of numerous advocates and thousands of hours of public hearings.

This is a civil rights movement where we are fighting for the right of our children to live, work and recreate in the community. The right to be seen as human beings and citizens of this great country.

Sticks and Stones … and words can hurt.

When a label carries enough stigma that the label alone can cause discrimination–the label is a problem.

The civil rights movement of the 60′s laid the ground work for Sec. 504 of the Rehabilitation Act and the Individuals with Disabilities Education Act…. and our civil rights legislation, The American with Disabilities Act (1990). If you look at the closing statements in Brown vs. Board of Education (1954) you will see the school district’s argument, (paraphrased) “If you let negro children in the public schools, the next thing you know the school will have to educate retarded children and Indians.”

In 2012, our children have the right to go to public schools, and restaurants cannot refuse to serve us, or ask us to leave because they don’t like “the way we look”.

This is NOT ancient history. This is NOT some group of radical parents and advocates who just want people to be politically correct.

Churches, non-public schools and organizations can still discriminate and decide who they allow in their churches but because so many of our children are going to school and living with their families in the communities, there is not the fear that once existed. And the medical professionals have dramatically changed their low expectations and acknowledge the limits of the IQ test and other measures they used to label people.

Sure this came about because of civil rights court cases and federal legislation, but mostly it happened as decent people decided to give people who were different a chance. I know it is unpopular to say that the Federal Government and Laws are important. Many people say there is too much government. I wish there was more protections and enforcement for vulnerable people.

Challenge to Bloggers

My challenge to all bloggers is:

Will you take cheap shots and continue hateful language which hurts people? Or, will you use respectful language and recognize people with intellectual disabilities are people and at least give us all a chance to build a better world.

Words have power. You have power.

Will you use your power to continue to hurt people, or for change?
I know you didn’t mean to hurt anyone, but for those of us (like me) who have children with IQs below 50, children who were labeled “idiots” by our Doctors and medical professionals and who are struggling every day to try and make a better life for our children, the words: “retarded, idiot, moron, imbecile” are downright offensive. So forgive me that I rant today instead of ignoring it.

I know the words are used everywhere and people aren’t particularly trying to hurt people with intellectual disabilities but I would appreciate your consideration.

Thanks. Mary

The blogger I sent this letter to agreed to not use the offensive language only asking that he remain anonymous. I consider that a victory for all of us, and it has made me a loyal fan.

Rosa’s Law

Rosa’s Law was passed and signed by President Obama in 2009 to use People First language in all Federal documents. Love, NOT Labels| Rosa’s Law

I am hoping other bloggers will take up the challenge and use People First language and the words “intellectual disability” in a respectful way.

This is a fresh start. We can do it right this time.

What about you?

Will you take the challenge to remove the “R” word and other hurtful words from your vocabulary?

Will you help educate others who use the words?

Will you learn more about PEOPLE FIRST LANGUAGE?

Talk to me in the comments. Let me know what you are thinking.

Keep Climbing: Onward and Upward.

Mary

Related Posts:

“Retarded” Keywords

Remarkable Parents who Never Give Up

Happy Feet, Retarded Teeth and Carnival Goldfish

Retarded| No More

Norm Kunc| What’s Your Credo?

People First Language| Building Community, “Wheelchair Becky” and Smoky Woods

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

Chocolate Covered Strawberries

Mouth watering?

Don’t these chocolate covered strawberries look delicious?

For Valentine’s Day, or any day, what about making chocolate covered treats or gifts for the people you love?

Chocolate Covered Fun for ALL AGES and Abilities

Parents, Special Education Teachers, Directors of Day Programs and Senior Centers: Everyone is looking for activities that are fun, age-appropriate, and allow people with all ability levels to participate.

Taking your favorite snack for a chocolate dip may be the answer.
The costs will vary according to the ingredients, but pretzels and marshmallows are cheap. Of course, if you want to go gourmet, hey, yum.

Partial Participation

photo credit: mbaylor

“Partial Participation is Better than Exclusion from an Activity” (Lou Brown)

Even if the recipe says, “Easy” that doesn’t mean every person can do every part of the activity.

For instance, Aaron, my son with the label of autism, wouldn’t be able to set the timer on the microwave–but he can certainly dip the pretzel in the chocolate sauce and choose the kind of sprinkles for the decoration.

Aaron can’t read the recipe with words, but he could follow the directions with pictures and though he can’t drive to the grocery, he can partially participate by picking out the pretzels and chocolate.

When Aaron was in school and had a speech therapist, one of his goals was identifying pictures of grocery items and finding the item in the grocery aisle. When he had a physical therapist, one of his IEP goals was pushing the grocery cart without hitting anyone in the grocery store. (Not a pretend grocery store in the classroom.) When he had an occupational therapist, one of his goals was to hand the grocery clerk the money to purchase the items and put the money back in his pocket. Aaron successfully learned these skills and practiced them every week in his functional community based program and … every time our family went into the community grocery store.

There are lots of things Aaron can do to partically participate in every activity.

When Aaron is part of the group, when he does purposeful, functional activities, he develops self-esteem, he is a doer. He is not just a passive observer. If he is treated as a baby, or as someone who cannot do anything but watch, then he loses his skills and his self-esteem. The people who think they are being nice and helpful to him, are not–they are actually causing him to lose skills/self-esteem.

This is a functional activity because if Aaron doesn’t go to the grocery to get the supplies someone else will have to do it.

If Aaron is actively involved in the shopping, the decorating, and gives the chocolate covered pretzels as a gift HE MADE–then this activity becomes much more than an easy activity to fill the day. It can become a learning and social enhancing experience. When he gives Grandma a package of pretzels he made, it is a joyful celebration for everyone. You should see his smile

Be Creative: Lots of Ideas

Dip White or Dark Chocolate Ideas:

Dried Fruit (apricots, raisons…)
Fresh Fruit (strawberries, cherries with stems, apples (whole or slices)…)
Pretzel Rods or any size
Marshmallows
Cookies
Graham Crackers
Candy Canes
Rice Krispie Treats

How to Make Chocolate Covered Pretzels:

Activity for All Ages and Abilities

Things You Might Need:

Small candies or sprinkles

You Tube Video Demonstration

Task Analysis or Recipe

Chocolate-Covered Pretzels with Sprinkles

Recipe courtesy Paula Deen for Food Network Magazine
Prep Time: 20 min, Inactive Prep Time: 24 hr 0 min
Cook Time: 2 min; Level: Easy
Serves: 24 pretzels

Ingredients:
• 1 12-ounce package milk chocolate chips
• 1 12-ounce package white chocolate chips
• 24 large pretzel rods
• Assorted holiday sprinkles

Directions:
Place the milk chocolate chips in a microwave-safe bowl and the white chocolate chips in another. Microwave one bowl on high for 1 minute. Remove and stir with a rubber spatula. (The chips should melt while you are stirring, but if they don’t, you can continue to microwave for 15 more seconds, and then stir again.) Wash and dry the spatula. Microwave the other bowl on high for 1 minute, and stir until the chocolate is melted.

Dip one pretzel rod into the milk chocolate; use a spoon or butter knife to spread the chocolate about halfway up the rod. Twist the rod to let the excess chocolate drip off. Hold the rod over a piece of wax paper and shake sprinkles on all sides. Place the pretzel on another piece of wax paper to dry. Coat another pretzel with white chocolate and sprinkles. Repeat until you’ve coated all the pretzels, half with milk chocolate, half with white chocolate, and let dry completely, about 24 hours. (Cover any remaining chocolate with plastic wrap and store in the refrigerator.)

Copyright 2011 Television Food Network G.P. http://www.foodnetwork.com/recipes/paula-deen/chocolate-covered-pretzels-with-sprinkles-recipe2/index.html
All Rights Reserved

Gifts and Favors, Holiday Variations

President’s Day, Halloween, Easter, 4th of July, Christmas Variations

All American Holiday

Gifts and Favors

Stick Pretzels

Paula Deen's Christmas Pretzels

Halloween chocolate covered pretzels

Comments:

Does it make sense that an activity as simple as making a chocolate covered pretzel can be a learning and self-esteem project? Can teachers, parents and directors of day programs make this more? Can they blow the opportunity?

Have you any ideas on this or other projects?

Keep Climbing: Onward and Upward

All my best,
Mary

Other Related Articles:

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

Language of the Heart| Heartaches and Heartsongs

Busy vs. Bored| Life Space Analysis for People with Disabilities

The Animal School| Differentiated Instruction

Test Questions| Inclusion or Segregation?

Teachers| Segregation or Inclusion

Happy Ever Afters| One For The Money

Norm Kunc: What’s Your Credo?

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)