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Posts Tagged ‘normalization’

The Race Toward Inclusion| Do you see it?

Are Your Eyeballs Running?
Creative Commons License photo credit: Sister72

The Race Toward Inclusion| Do you see it?

I love this picture. It reminds me of many of my favorite quotes:

“The real voyage of discovery is not in seeking new lands, but in seeing with new eyes.” Proust

“No one’s blinder, than s/he who will not see.” Kenny Rodgers’ song

“The race is not only to the swift, but to s/he who keeps on running.” (unknown)

“It is only with the heart that one can see rightly; what is essential is invisible to the eye.” Antoine de Saint-Exupéry

Eyeballs Running Everywhere

The racing eyeballs also remind me of late at night, lying in bed when my thoughts just keep galloping around in my head.

Our world is filled with a myriad of choices, distractions, good and bad news–all begging for our eyeballs and attention.

Parents of typical kids have trouble sorting out their priorities, and much of their intense parenting ends when their kids are 21. For parents of kids with disabilities, our hardest years are after graduation.

We are supposed to be experts on everything, autism, intellectual disabilities, developmental disabilities, govenment laws and departments on local, state and federal levels, advocacy organizations…. 

We are supposed to visualize our future, our children’s future.

We are supposed to foresee what will happen, so we can be prepared to protect our vulnerable children.

It makes me dizzy.

I want my bloodshot eyeballs to stop racing around trying to keep up. I want to be able to look forward to a future where my son will be okay. I want to be able to trust the professionals to do their jobs…I want to sleep in peace–(well, not the eternal kind of peace, just restful, you know sleeping through one or two nights :)

What about you?

Can you see the good–and ignore the distractions of failed levies, government cutbacks, negative news?

Can you watch the media focus on new segregated programs and ignore inclusive programs?

Can you envision new inclusive services in the community?

Can you discover hopeful ideas and events?

Can you anticipate next week being better? Next month? Next year? 10 years from now?

Can you believe you will have the people and resources you need?

Do you also feel dizzy?

We need to narrow our focus and concentrate on “the essential”: What can we do today to move toward the inclusion of our children in society?

We can’t solve all the issues of the world. But we can exercise the Power of One and do one thing today to make a more inclusive world for the person we care about. One thing. Today.

But how do we decide on that one thing? How do we filter out all the choices?

Pruning

Just like a gardener or farmer prunes the dead wood from a rose bush or apple tree, we need to teach ourselves to prune the information that bombards us everyday. We can make the choice to throw out some information, ignoring potential goldmines. If it is really a goldmine–it will still be there tomorrow. I do this by limiting the time I spend watching TV, the news, using social media like Twitter and Facebook. I don’t care what Brad Pitt is doing, I don’t want to hear about recent car wrecks, abused children, or floods in Asia. I can’t do anything about it. If it is bad, scary, if it is going to keep my eyeballs busy while I am trying to sleep–I prune it out. The world can move on without me.

Planned Ignoring

Planned ignoring is consciously making a decision to ignore certain things. Planned Ignoring gives me time to digest and analyze the information I already know. We need to allow ourselves to “see” and “not see” as we make our priorities. This will help us reduce the overwhelm. We can stop the racing eyeballs in our minds. We can allow ourselves the luxury of closing our eyes for a moment, and find our FOCUS.

Seeing with New Eyes of Inclusion

Long ago, I decided my “voyage of discovery” was to the land of inclusion. It meant learning new ideas, shifting my paradigm, and it is based on the principle of normalization, I want my son Aaron to have as normal a life as possible (period). I can make a difference for him by seeing with my new eyes of inclusion.

What do I see? What does my loved one see?

Is this moving toward inclusion?

I have to live in the real world, so I compromise a lot. But I try to keep my vision focused on the goal: Inclusion for Aaron and others. For instance, yesterday I again had a discussion about filling out a form when we picked Aaron up at his house. Because of the principles of inclusion and normalization, I will still make up my own form, rather than use the medical model form from the agency. Six month ago I was promised this would be changed, but Herbie still lives. Herbie bits the dust“>Click here.

When I first confronted the agency six months ago, I was using “pruning.” I would chop out the old policy. I made phone calls, was given assurances that it would be changed.

For the last five months, I’ve used “planned ignoring”. I kept hoping they would keep their promise to change the form. I kept signing the form I made myself. (The house staff was also using planned ignoring–and just let me do my thing.)

But now, it’s time to use my “new eyes” and make one change as we journey into our annual ISP (Individualized Service Plan–the adult service version of the IEP only without the due process).

I’m predicting: The EYES will have it!

Sweet Dreams Everyone.

Keep Climbing: Onward and Upward
All my best

Mary

COMMENTS:

What do your eyeballs see? What is your vision for the future? Do you think the concepts of “pruning,” “planned ignoring” and “seeing with new eyes” are useful strategies? Are some people incapable of “seeing”?

Norm Kunc| What’s Your Credo?

Norm Kunc

Norm Kunc

Every day people challenge me:

Why do I believe what I believe?

What’s wrong with the Medical Model?

What’s wrong with the Charity Model?

What’s the big deal about “normalization” and “inclusion”?

Why is “special” not special?

Most times the conversations are stressful–the whole paradigm shift thingy. Most people don’t want to take the time to understand or learn a whole new way of looking at the world. They think their view of the world is just fine, thank you very much.

As parents, we have been learning for 30-40 years, our child’s whole lifetime. Our child demands we still learn every day.

For the next couple days, I’m going to be sharing some of the people who shaped my beliefs. Here is Norm Kunc.

I am hoping they can deliver the message of “normalization” far better than I ever could.

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

All my best,

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?

Socially Constructed Attitudes| What do you see?

follow the arrow from A-Z

What do you see?

Every day businesses and community groups try to influence us with logos and symbols.

Did you ever look close–really close–at some of these logos? Sometimes there are hidden messages.

How many times have you seen the Amazon logo?

Have you ever noticed the A-Z arrow? I didn’t.

Could this be a visual cue saying, “You can purchase everything from A to Z”? Not just books.

Business logos and commercials dominate the social media and we often take them for granted. But no doubt about it, they influence our attitudes.

Baskin Robbins

See the 31 flavors?

What’s your first impression?

What’s your second impression?

Baskin Robbins’ logo reminds us they have 31 different flavors of ice cream—can’t you just taste the butter pecan and chocolate chip?

Are you surprised the number 31 is right there in front of you?

Did you notice?

Tostitos

See 2 people sharing a tostito?

Mexican flag colors, right.

But there is a whole scene right in the middle of the logo.

Do you see two people?

They are sharing chips and between them is a table with a cup of salsa.

Now that you are aware, will you notice the embedded image on every Tostito bag of chips?

Will you tell your friends?

Your actions are helping to socially construct the meaning of their logo, the meaning of Tostito’s brand–Friend to friend.

Tour de France

See the bike? Guy in yellow Tshirt?

The most famous bike race in the world, The Tour de France logo shows an action shot of a man on a bike.

See it? The R is a man bent over the yellow wheel of a bike.

What emotions do you feel?

Bet the marketing company spent hours researching the color of the t-shirt including study groups on whether the best color was blue, red or yellow.

Perhaps this ad was donated or created by a student…or a giant ad company on Fifth Avenue.

Wolf Wolfensburger spent years teaching us to be thoughtful about the images, logos and symbols we use when we market our agencies and companies that worked with people with disabilities.

He spoke of the social construction of knowledge–we are what others say we are:

“Impairment is a normal part of life. Disability is not. That is caused by our attitudes towards people who have impairments. It’s about time we accepted that wholeheartedly. Doing so is good for people who are disabled, for community and for the planet.”

Final Question: What do you see?

What do you see?


(Martha Perske, artist)

As parents and caregivers of adults with disabilities, every day we send out messages to the world.

Our neighbors, our relatives, our children and our community are watching and learning. They are socially constructing what they see based on their experiences.

Are we spreading the message that people with disabilities over 18 years old are adults—NOT children?

Are we marketing our services in unhuman images of angels, devils, elves, giants in our company names and logos?

Does a group of people with autism walking in a store blend in, or do they draw attention to themselves?

Are adults with disabilities seen as capable employees, volunteers, contributing citizens?

Or do community members see them as needy–asking for charity, or pity?

Are we promoting inclusion and normalization?

Are we teaching others what they see? how to understand?

If this was a business, what would our logo look like and what would be the embedded message?

How are we socially constructing our environment, our world?

Your Turn:

Please share your ideas and thoughts. What message do we send on TV? in the community? What message in our personal life? What do you wish would happen?

Keep Climbing: Onward and Upward

All my best,

Mary

Related Posts:

What is normalization?

Perske| Hope for the Families

The Race toward Inclusion| Do you see it?

Test Questions| Segregation or Inclusion?

Aaron and Friends

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?”

A generous person wants to help. We are taught to help others; it feels good to help others. But what perceptions might that ‘helper’ and ‘helpee’ relationship procreate? Is the ‘helper’ some how better than the ‘helpee’? Does the ‘helpee’ always need to be helped, never given the opportunity to share his or her gifts and enjoy the good feelings we get from our generosity? Do we believe that the ‘helpee’ has anything to share?

Why, especially when it comes to children or adults with disabilities, do we feel we must create special, pretend places to practice in and learn the skills to interact in society in the “real” world? Why can’t we try and figure out how to provide genuine, authentic, ordinary opportunities for all IN the “real” world? If natural supports or additional assistance are needed for any of us to be participating members of our neighborhood community, can’t we work together to figure out how to do that? Don’t we all learn better with and from each other in the real world, in the real school, in our real community?

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

All my best,

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?