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Archive for September, 2013

Building Community | People First Language

People First Controversy

newborn baby

Background:

There is controversy in the disability community about the use of People First or Person First language.

I’ve written several posts about People First language:

*Rosa’s Law,

*Stigma and segregation caused by labels like “mental retardation and,

*Challenge to bloggers to use People First language.

Some self-advocates on the Autism Spectrum disagree They feel parents want to deny “autistics” and “aspies” their unique voices. They say parents only want to destroy autism and cure their children.

I am proud to support Rosa’s Law and advocate for People First Language. Perhaps these personal stories will explain.

I’m going to start and end with “Wheelchair Becky” but also share some stories about the past history of people with disabilities, my son Aaron, myself, and my hope for the future.

Is People First Language important for “Wheelchair Becky”?

"Wheelchair Becky" chooses a Pen Name

In a previous post: Building Community | Wheelchair Becky vs. Flat Stanley, I wrote about the way the Mattel Company thought “Wheelchair Becky” and “Black Barbie” would teach children about diversity and tolerance…and how it backfired.

I think People First language is part of the solution. If you disagree, that’s okay. It’s part of celebrating diversity.

Is People First language important for Aaron?

Aaron is my son’s name.

He has been depersonalized, reified and labeled by doctors, psychologists and other professionals as autistic, cerebral palsied, DD, MR, sensory deficit, movement disorder, severe/profound….

In the precedent setting Roncker case, the school psychologist testified under oath that Neill Roncker and others (like Aaron) had such low IQs “they wouldn’t know the difference between sitting next to a real person or sitting next to a rock.” So segregating them in separate schools with their own kind would make no difference. She considered their education a waste of school resources. Many people still agree with her.

So, I feel strongly People First language is important. Aaron is a person first. Others can give him labels. Some are medical and diagnostic but others are cultural: brother, son, uncle, cousin, friend, neighbor, patient, consumer, ….

This has nothing to do with wishing Aaron was cured. This is not denying the “autistic” culture. This has nothing to do with “disability pride.” It has everything to do with survival.

People First
language reinforces the moral argument that people with severe disabilities are people and have a basic right to exist. A right to breathe, to be a member of the human race, to live with our families, go to neighborhood schools and community activities–rather than live in institutions.

Check out Parallels in Time history of people with disabilities It is filled with the abuse of those basic human rights. The more we know about our history, the more we understand the need to protect our rights to “life, liberty and the pursuit of happiness.” This is a daily challenge as we fight for caring staff, decent living conditions, health care, opportunities to be safe and belong to our families and communities. There are many people who see only the disability–and think that means we don’t need the same care and support–we are not really citizens, not really human.

Aaron is a “person” with wants, needs, likes and dislikes like everyone else. He is Aaron, that unique PERSON whom I love. He is Aaron a citizen with rights.

As I look at my life as a parent, advocate, teacher and friend to people with disabilities, I find I have excluded myself from my community. Yea, me–the advocate for inclusion.

Is Mary a Person First?

All mothers understand this conundrum. Especially when your child is so vulnerable. I’ve spent many years hanging around people working for the civil rights of people with disabilities i.e. Mothers of Special Children, Special Education Parent Groups, Arc, Autism National Committee, TASH…. I am a member of Disability World. Maybe not a primary consumer, but certainly a secondary consumer.

At some point, I realized I had to reclaim my own personhood. My personal resolution to rejoin the mainstream of my community included finding writers’ groups.

OVRWA

Fortunately, I found the Ohio Valley Romance Writers of America (OVRWA) in my community. These talented women have become more than mentors, they have become friends. I learned almost every one of them has a PEN Name, some have more than one.

Men with Pens

Men with Pens has also been a terrific community for beginning writers and bloggers. I’ve met James Chartrand who also wrote about using Pen Names and Pseudonyms.

Positive Solution: Writer’s Groups and Pen Names

So, it occurred to me: What if our stigmitized “Wheelchair Becky” started to include herself in these writing communities? After all, she’d graduated from the high school yearbook committee, right?

What if “Wheelchair Becky” chose her own Pen Name, became her own person, and like Flat Stanley started to integrate herself into the community?

Pen Names

Urban legend says one way to pick your Pen Name is to:

1. Write down the name of your first pet.
2. Write down the name of your street address when you
owned that pet.

I consulted with “Wheelchair Becky” and she agreed to make this into a community-building activity at the OVRWA holiday party.

Everyone wrote their pet’s name and put the papers in one red dish.
Everyone wrote their street address and put the papers into another dish.

Then “Wheelchair Becky” with the help of a friend, chose one name from each dish and VOILA—

Smokey Woods was born.

How do we build an Inclusive Community?

Christmas Dinner w/Smokey Woods

Smokey Woods toasts the New Year

In the tradition of Flat Stanley and many writers, Smokey Woods began to make friends and include herself into the community. Here (at the head of the table) she is toasting in the New Year with our family. (BTW: She doesn’t eat much and is a cheap drunk.)

What a doll!

Here my precious granddaughter is playing with Smokey Woods the romance writer.

Smokey Woods is a doll, a toy. Smokey might use a wheelchair to get around, but she has a name.

My granddaughter represents the future. For Aaron, for me, for all people with disabilities. She will see people like Smokey in her classes and community. When she watches Glee on TV, she sees Artie singing and dancing. He also uses a wheelchair, but Artie has a name–and it doesn’t start with “wheelchair.”

Names matter. Aaron is Aaron. Mary is Mary.

I’m not promoting People First language because I am looking for a cure. I’m looking for survival and ways to prevent the abuse and segregation of the past. I’m looking for community inclusion.

For Aaron.

For myself and my family.

For all the next generation of little kids who will be learning about diversity by playing with dolls and watching TV.

I also think Mark Twain, Dr. Seuss and all the other writers who use Pen Names would approve.

Keep Climbing: Onward and Upward
All my best,

Mary and Smokey

Your Turn:

Did this make sense? Are there important reasons to use People First Language? Can we learn more about community inclusion and what it means to be a real person by looking at our language and the names we call each other? Do we need to study the past so we can move forward? In the comments please share your ideas.

Teachers| Segregation or Inclusion?

A really cool old ruler
Creative Commons License 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

“Disability World” is socially constructed. It can follow the philosophy of a medical model and try to cure the individuals, or it can follow a different philosophy and say the individual is fine, we need to cure the world.

In my opinion many people want to go back to the medical model. Recent political events demonstrate certain politicians are trying to demonize public employees–especially teachers and take away the programs which support people with disabilities to work, go to school and live in the community.

In my opinion, they want to 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 clearly 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. I believe in the separation of church and state. If a school or church wants to discriminate against people with disabilities — that is America. That is their right. I just don’t agree with it.

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

All my best,

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”?

A Quarter’s Worth of Advocacy

Helping or hurting?

Helping or hurting?

I am going to update some of the better articles I’ve written for my classes, parent newsletters and magazines. Hope you enjoy them.

Since Aaron was young, the language has evolved. When this story took place they used the words, “mental retardation,” then the words become “developmental disabilities” now it would be “intellectual disabilities.” I’m using the original words as I experienced them.

“Help the mentally retarded! Help the mentally retarded!”

I had just bought some 99 cent grapes, a pound of hamburger, loaf of bread and a couple other items to make dinner for my family when I was met at the door to the grocery by three older men wearing brightly-colored vests and hats with tassels. They were holding little cans and urging shoppers to “Help the mentally retarded!”

I grabbed my groceries and, not even looking up, hurried to my car. As I passed, one man said (in a very superior) voice, “Not all babies are born healthy.”

I felt my face flush and when I paused, he went in for his killer argument, “We aren’t ALL blessed with normal babies, you know!”

Well, that did it. Turning, I said, “I have a child who has the label of autism and I think it is very condescending to have to beg to raise money for quality services. He needs respect for his civil rights, not begging and charity.”

Well, the men and their swinging tassels all stopped and circled me. They were aghast. “What do you mean?”

I thought about just grabbing my bags out of the cart and running to my car, but instead looked him right in the eye. “People who are retarded need real opportunities. They can be valuable workers and contribute to society. Retarded people as objects of the mercy of others reinforces the negative stereotypes of the past. In fact, now we call them people with intellectual challenges and don’t even use the word retarded.”

“But honey, last year we raised over $300,000 in our state.” The man straightened his hat and looked like I had sucker-punched him in the gut. “One-third of that money is going toward adding a retarded adult wing onto Children’s Hospital. Also we began a new women’s group home. We stand here in the rain and cold to help. We are volunteers. We don’t get anything out of this.”

At the entrance of the store a crowd was now gathering. I knew he was probably a nice man only trying to do his Christian duty. He was sincere and dedicated, only ignorant of the principles of normalization and inclusion. The staring and frowning faces of the crowd told me they were on his side. I half expected flying can goods to start stoning me. After all, who takes on God’s Knights right in front of Krogers?

I certainly didn’t plan on making a scene. So, giving the man a smile, I just said, “Well, I serve people who have developmental disabilities in other ways” and tried to push my grocery cart around him.

He gently put his hand on my shoulder and assured me God would take care of me and my son. Then, to show no hard feelings, he put three Won’t you give an extra inch? wooden rulers into my bag.

Well, once again I had done it. My husband is always telling me to lighten up and get a new hobby. For Pete’s sake, here I was in a confrontation in front of the grocery store.

Perhaps next time I’ll just drop a quarter in the cup and make the man happy… but… in the meantime, I’ll work “inch by inch” to replace the poor helpless eternal child stereotype with an image of a citizen with real value, dignity and rights.

Share Your Thoughts

How would you handle this? Have you had similar experiences?
The kicker is that Children’s hospital no longer even wants to serve adults with disabilities. Do you think that is a good or bad thing? Also, in 2012, the Knights would be saying, “Help the children with intellectual disabilities,” right?

Action Alert| Public “R” Word Slips vs. Purposeful Insults

Stop discrimination against people with disabilities

Stop the "R" word

To those of us who care about people with disabilities, it is always shocking to hear about media personalities attacking the vulnerable people we love.

“R” Word Slips of the Tongue

NBA star LeBron James apologized for saying “that’s retarded” during a post-game press conference.

That was bad. But he apologized, and hopefully learned to never use the “r” word again.

LeBron James Under Fire For ‘Retarded’ Comment (click here)

Some would argue this was an example of the Politically Correct Police censuring free speech. This would be true if there wasn’t a long and recorded history of discrimination against people with intellectual disabilities. Check out the Parallels in Time website if you have any doubts.

With Rosa’s Law and large organizations like Special Olympics actively challenging the media personalities who use the “R” word publicly, there is a gradual shift in the public’s awareness. This is a giant step to improving the image of people with disabilities.

In another post, The ‘R’ word| A challenge to Bloggers I asked bloggers to not use words that insult people with intellectual disabilities and gave a sample letter which made a difference in one blog.

We all make mistakes, we all can learn to be more sensitive. Sometimes our letters need to educate good people who just haven’t walked in our shoes.

Purposely Insulting People with Intellectual Disabilities

BUT…when public figures purposely insult and promote segregation and prejudice against people with intellectual disabilities and think it is funny or entertaining–that is another story.

Dennis McNulty, Director, Catholic Charities Disability Services in Cleveland, Ohio alerted the Arc of Ohio with this shocking story about a local radio station:

The Rover’s Morning Glory radio show was talking about how people with disabilities, using the “r” word to refer to this group of people, cannot and should not hold jobs, are incapable of learning in school (specifically people with Down syndrome) and the disc jockey cringes whenever he hears or sees them out in public. He goes as far as saying when he sees them working in the grocery store, he is disgusted.

Even worse, the radio station chose to re-broadcast this particlular show.

Please use the link below and either call or email the radio station to express your displeasure with their choice of programming.

Mr. McNulty also advises:

The only way to do anything is by associating the advertisers and the radio station DIRECTLY with the insulting behavior.

That means calling the advertisers (and getting to the top person) and making it clear your organization and its supporters, AND its nationwide reach, will tell the public that Such-and-Such company supports the insulting, belittling, and marginalization of people who have disabilities. And that WMMS stands for the insulting, etc.

Nothing else will stick. Generally the advertisers could give two hoots about this, because they are reaching a large target audience through the Rover program. WMMS could give two hoots because it is precisely that kind of humor which draws the audience in the first place. So everybody profits at the horrible expense of those who are being ridiculed.

Again, the ONLY way to have an effect is to directly link the radio station and advertisers as being SUPPORTERS of ridicule, prejudice, insult, and marginalization.

Ask the advertiser, “do you support the ridicule, prejudice, insult, and marginalization of people who have mental disabilities? You don’t? Well, we think you do, and we will tell the public. Why? Because you advertise on that radio station, which has now become an outlet for the ridicule of people who have disabilities. And we will directly link YOUR company to that degrading conduct. The only way out of it is to PUBLICLY pull your advertising from WMMS and stand with us. Period.

Take action as you feel appropriate…. Please share with others.

Dennis C. McNulty, D. Min.

Director, Catholic Charities Disability Services

Now it is easy to say, “let the big organizations, or the advocates, or the parents or … take the action.”

But there is a power in one person–YOU–calling or writing an email to the station. Here is the link to the station information:

http://www.wmms.com/pages/contact/

ACTION ALERT: A challenge to those who care about people with disabilities

Below is my letter to the radio station in Ohio, I’ll let you know if I get a response.

If you are as concerned as I am, I encourage you to also send your email to the radio station. Click here for the link to the radio station.

Here is my email to WMMS:

May, 11, 2011

I was shocked to learn WMMS was insulting people with disabilities and their families on the air.

Many people with Down syndrome and other intellectual disabilities can live, work and go to school in their communities and for your Rover’s Morning Glory radio show to say otherwise is discriminatory.

There are only two kinds of people in the world: the disabled and the “yet-to-be-disabled.” Each one of you and your family members are only one accident, one illness away from having a permanent disability.

Think about it, the insults you hurl not only reflect on you, but on the whole Cleveland community.

If you live long enough—you WILL have a disability. How many of your listeners have family and friends with intellectual and other disabilities?

How many of your sponsors have children or family members with disabilities?

When you target one group of people to degrade, ostracize and alienate as being different from you, you only make yourself look petty and ridiculous. You might think that by putting down people with intellectual disabilities, you are making yourself look better—but in fact, you are degrading yourselves.

I ask you to stop this segregation tactic. People with disabilities have the legal right, and the human right to be part of the community. We will not force them into the backwards of institutions and out of the public eye.

Instead we will celebrate their gifts to our common community. We will embrace them in our human family.

WMMS would not dare insult other minority groups. Why would you pick on these vulnerable people?

You are embarrassing yourselves.

Sincerely,
Mary E. Ulrich Ed.D. and mother of Aaron, a person with an intellectual disability

Summary:

Two scenerios:

A media person says the “R” word and then apologizes.

A media person says the “R” word to increase prejudice against people with intellectual disabilities.

I’m hoping you will want to be a part of the solution and take an action step.

Email, Call, Tweet and use your social media resources to spread the word that people with disabilities are just like everyone else and these attacks will not be tolerated.

Comments:

It will only take a minute. Will you write an email to the radio station?

http://www.wmms.com/pages/contact/”>Click here

What do you think about this?

Keep Climbing: Onward and Upward
All my best,

Mary