Archive for the ‘Climbing Every Mtn Blog’ Category

The “R” Word: A Challenge to Bloggers.

Stop the “R” Word

March 6, 2013 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.

All the best,

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

Being able to communicate is like winning the lottery.

Do you start out the day asking, “What is my purpose?”

Sometimes that question will motivate me. Sometimes it is whispered in anger or despair; sometimes as a prayer for direction. But I wonder how I would ask about my purpose in life– if I could not speak with my voice. Like most people, I take so much for granted.

How would I feel if no one ever listened or thought I had anything important to say?

Perhaps you have already seen these videos on YouTube, but they are new to me. In the comments I hope you will share what you think, did these videos communicate new ideas, new questions, rock your world, move you to actions?????

Being able to communicate is like winning the lottery.

We usually think about winning money when we think about winning the lottery. But what would be more precious than money?

Andrew is a 13 year old young man who has the label of autism. He is communicating by pointing a pencil to a letter stencil board made by his grandfather. Andrew and his mom have been communicating this way for over 4 years. Notice how they pass the pencil as each takes a turn communicating.

Andrew: Non verbal autism + communication Part 1

Part 1: Script

Mom (M): I thought it would be interesting if you could talk a little bit about the difference that being able to communicate has impacted your life—like if you could not communicate and now that you can communicate.

Andrew (A): Yes. Now that I am using the letter board my life is having more meaning.
Since I was a little boy what I really wanted was to be treated as a normal boy
with pieces of my sensory system out of functioning.

M: Can you talk some more about that?

A: All autistics think

What is my purpose if no one thinks I can learn?

Then my mom found I am learning more… (con’t in part 2)

Part 2

Part 2: Script

A: …then she thought.

M: This is good keep going. This is really good.

A: You see all autistics have motor issues that limit their ability to communicate.

M: Keep on. You need to move your elbow, pick it up.

A: So once I had a new way to communicate

M: Keep going.

A: I felt like a kind of Lottery Winner in Life.

M: That’s a good way to put it.

A: So now I’m hoping to graduate from high school and lead a fulfilling life.

M: So, if you had any words of wisdom for parents and your teachers, what would you say?

A: See each individual as a respecting individual who deserves to have an education and live in their communities as productive citizens.
.

The Right to Communicate

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

When I watch these videos, I am struck with how much we can learn from people with autism. The classic definition of autism talks about “difficulties in social interaction, social communication, and stereotypical behaviors.” But as Bob Williams wrote so brilliantly in his poem “What if,” maybe the difficulty in communication is our problem.

There have been many breakthroughs in communication showcased by The Wretches and Jabberers movie and new technology like the IPad and new applications.

Call to Action

My son Aaron used to type when he was in high school. Then, he graduated and his facilitator moved away and he didn’t want to type with me, his mom. But now we’re taking action. We hope to begin Aaron’s augmented communication again this month. It’s time.

We’re going to be getting an IPad and some applications. If you have any advice, let me know.

Share your thoughts:

Some people still think this is all a hoax. Some people think it is a miracle.

What do you think?

What did you think of the videos of Andrew and his mom? Do you think Andrew was really communicating? Do you think Andrew is smart? Was his mom manipulating him? Is there any person you know who might be able to better communicate with some technology?
Do you agree that the right to communicate is the most basic of human rights?

If you couldn’t talk, would you think being able to communicate was like winning the lottery?

Keep Climbing: Onward and Upward
All my best,
Mary

Related Posts:

Wretches and Jabberers| “A lifetime of trying to get in touch”

More than a Graduation Speech: Jeremy Sicile

Wretches and Jabberers| A jab to the heart

Mary’s poem about facilitated communication

Want to tell your story?

Writing and Blogging Course| A Game Changer

Want a Writing Coach to help solve your writing and blogging problems?

James Chartrand is an A-List Blogger and experienced Writing Coach and Instructor. You have heard me talk about her many times (yes, James is her pen name).

I have learned so much from her in her award winning blog, Men with Pens, (and yes, my friends who are romance writers the word is “pens”).

The reason I like her is because she cares. She has values we can relate to like wanting to help writers of all ability levels, wanting the next generation of writers to write well (and that means story structure, character development, point of view, sales and business writing, and writing for change).

Plus, James is successful: Writer’s Digest named Men with Pens one of the best blogs for writers; it has over 40,000 subscribers; and she knows how to run a successful online business (and actually make money).

Do you feel like you are wasting your time and getting no comments?

Come and Join Me as we both Up our Writing Game and tell the story only we can tell.

So, instead of precious time driving to expensive conferences this 10 week course allows you:

Learn on your own schedule–new lessons are available each Monday and Thursday.

Each lesson has an assignment which gets individual attention.

The Community Forum allows you to ask questions, meet with other students, interact with James, and submit your writing for critique.

Damn Fine Words“>

Damn Fine Words is a Bargain

Damn Fine Words (Click Here For Course Information) affiliate link

Damn Fine Words starts May 17th

I invite you to join me in the Damn Fine Words writing course with the amazing James Chartrand as we learn how to become better writers and bloggers.

So many people want to give up on telling their stories. Don’t do it. Take this step with me and we’ll figure it out together.

Plus, we get to say “Damn”. Like in “Give a Damn”, “Dare to give a damn”…

Keep Climbing: Onward and Upward
Mary

Writing Changes Lives.

Each day we read stories of abuse and neglect of people with disabilities. Today it’s a father telling the story of his ten year old son with autism who wore a wire to school and articles about Dr. Phil’s show on mercy killing.

This blog, Climbing Every Mountain (CEM) is one small voice for the rights, dignity and community inclusion of people with severe disabilities and their families. From an inclusive paradigm, I try to make sense of what is happening to our vulnerable children and friends. I hope to use my writing to tell the story, problem solve, teach, inspire and keep the dream of a good life alive. I hope to change lives.

Whether I like it or not, I feel my life work is to keep writing about my son Aaron, who has the label of autism, and other people on the fringe of society.

Our hope for a better future comes from feeling empowered to make a difference, not waiting for others–if there is only silence or chaotic noise nothing changes.

I’m convinced communication and writing are the tickets to change. So the writing better be damn good. Right?

Damn Fine Words (link) is currently having a writing contest.

Damn Fine Words (link) is a course on how to improve writing skills for blogs and online businesses. So of course, you enter the contest by writing a post on your blog. (Don’t you love functional assignments?) It is taught by the talented James Chartrand of Men with Pens fame. I want to win a scholarship to this class, so this post is about “Why becoming a better writer could change my life” and “Why writing is important to me and my business.”

Adaptation and Accommodation are a Way of Life

CEM readers are important, the focus and integrity of staying on the topic of inclusion is important. I just can’t jump off on a contest tangent. Hey, all that guilt!

But special educators are crafty people *smile* who learn how to adapt, right? So, I’m going to give my contest information in the traditional I.E.P. (Individualized Education Plan) of Goals, Action Steps and Reevaluation to demonstrate how the I.E.P. Process is useful in not just Disability World, but in real life.

Evolution of my Thought Process about Writing

I.E.P. Vision, Goals, Action Steps, Evaluation

Vision: Write about living in an inclusive world where everyone belongs and individual differences are valued as strengths.

Book

Goal 1: I wanted to write a BOOK about Aaron’s story and talk about inclusion—not just to special education types or the learned choir—but to normal people. Makes sense, how are we going to be inclusive when we only talk to each other, right?

Action steps: Five years ago, I entered a contest with Writer’s Digest. (See a pattern here?) I won a subscription and began to relearn what I knew about adjectives, exclamation points and the basics of grammar. I learned about voice, point of view, plots, storytelling, story structure…. I joined WD’s Forum and learned about editing, publishing, authors and these new things called blogs and social media. I met writers who recommended blogs like Men with Pens. I joined a local writers’ group.

Evaluation: I wanted my writing to be powerful and inspire others. Yet, the more I learned, the more I needed to learn.

Evolution One: Book to Blog

Revised Goal 1: I wanted to share Aaron’s STORY and talk about inclusion with as many people as possible. (Same goal only forget the book format.)

Seth Godin (blogger extraordinaire) suggested writing a blog instead of writing a book: Traditional bookstores and publishing houses were closing; Blogs could immediately reach people around the world; Posts would be available indefinitely; Blogs could become online businesses; and, It’s possible to continually update the story.

Action Steps: I subscribed to about 20 blogs on writing and did an ecological assessment of how to be a good follower, tribe member, “true fan.” I discovered blogging was damn complicated. I put in a Gladstone’s thousand hours of study–I needed to learn about writing sure, but also about branding, design, marketing, small business, technical “backend” systems, and a whole new language of SEO, HTML, B2B, copywriting, white papers, sales letters, analytics, “black hat,” “long-tail keywords”… a new vocabulary and alphabet soup that competes with special education in its complexity.

Evaluation: A blog made sense for a story like Aaron’s, which continues every day. I needed to increase my learning curve and find mentors. So, same goal of spreading the inclusion message with words, different format–book to story to specific blog and potential business.

Evolution Two: Climbing Every Mountain Blog

Revised Revised Goal 1: I want to share Aaron’s STORY and create an online community for people who care about adults with disabilities and pay its expenses. Again, same goal, specific format and possible business.

As Special Education has been attacked and adults with disabilities are given few options, even an idealist like myself knows the hope of an inclusive community has deteriorated and become even more elusive but… the journey continues. We can’t give up; we have to keep climbing that mountain.

Action Step for Aaron’s inclusion: (Walking the Talk) In the last couple months Aaron moved into a new home closer to ours, began a new day program and new residential provider. I made changes in Aaron’s life and showed our county how to start some inclusive programs. This gives me the credibility and authentic voice to share my ideas.

Action Step for blog: After much encouragement (thank you everyone), I finally began my blog http://ClimbingEveryMountain.com in July, 2010.

Evaluation: Most feedback has been positive, but a good friend said she quit reading my blog because my posts were negative and focused on my son’s “sucky life” when I should only be talking about the good things that happen to him—that comment paralyzed my writing.

My previous lack of confidence, self-esteem, courage, technical skills and motivation are nothing compared to that bullet to my heart. Is she right? Is my writing helping or hurting others?

Success Stories:

The good news is:

I’ve had amazing visitors who are leaders in the fields of both Inclusion and Social Media.

Professors from two university special education programs assigned my blog for their classes.

A state autism agency wants to feature my blog on their site.

Statistics:

As of today, I have 135 subscribers and have written 137 posts. I’m proud of my content, but there are few readers with almost no comments or discussion–certainly not the “basecamp community” I had hoped for.

In April CEM averaged about 30 readers a day and visit duration was 1:47 minutes. There is about an 80% bounce rate.

Each post takes me about 6-10 hours to write and format.

I’ve taken online courses, and as I recovered from recent health issues I identified several problems: no niche viability, no products, and I am the most untechy person you will ever meet.

How Damn Fine Words (link) could change my life.

Specific ways DFW would help be become a better writer and change my life:

I want to write powerful and important stories with information which can change people’s lives. DFW will teach me better ways to tell the story and teach information

I have an important story that only I can tell. DFW will give me the external validity that I am on target and my writing does reflect my mission. The members of DWF are not part of special education or Disability World, so their honest objective advice will help me evaluate the success of my message for a general audience.

My story is about the journey, it does not have a typical happy ending (no one is cured or ever will be). So I need to have humor, optimism and inspire others in their own, equally difficult, journeys. DFW will suggest guidelines and give me objective advice regarding finding a balanced approach.

When my friend says my posts are negative, is she right? Am I wallowing in a pessimistic attitude and self-pity? DFW and the student forums could give me a clue. This would change my emotional life.

Because of the complexity of the message, I need to write simply, with clarity and stick to one message at a time. DFW will teach me achieve message discipline.

My blog needs to be technically sound. DFW will give me technical advice i.e. I have no idea how to create bullets or get to be an Amazon affiliate.

I want to have great content for the state website. DFW will help me structure my posts and hopefully speed up my writing process.

I have several articles I could make into eBooks or PDF handouts. DFW could give me advice.

I would like to create some video and other media for my blog. DFW could give pointers and the confidence to stretch my skills.

I would like to learn more about becoming a freelance writer. This new career would significantly change my life. DFW has that information.

I would like to monitize my blog enough to cover expenses and perhaps make purchases like a video camera and document scanner. DFW might be able to help me.

Bottom Line:

In Special Ed lingo, Damn Fine Words would be the related service.

In regular words, Damn Fine Words would help me up my game and ease my anxiety:

Are my current efforts a waste of time and energy?

Am I helping people get the information and encouragement they need to change their lives?

Am I good enough?

How can I get better?

Damn Fine Words would help me answer these questions and move forward.

I think Damn Fine Words (LINK) is the answer. I’d like quick miracles of course, but it would be an honor to mentor with James and learn whatever she thinks is necessary. I like to be around people I consider “THE BEST.” James has great values and experience. I’ve already learned so much from Men with Pens. I like to learn. I like to be in classes where there are high expectations, structureed lessons, deadlines and a teacher who, if needed, will kick butt.

I don’t deny I need the confidence, self-esteem and encouragement to take risks. I don’t deny that I get scared that if I fail in this, I will need to rethink my life goals and start over.

My outcome and true measure of success would be to end the Damn Fine Words (LINK) course with new knowledge, new friends, something to sell on my blog and a guest post ready to submit to Men with Pens. This would indeed change my life.

Dear Readers of CEM,

You might also want to enter this contest. Many of you have talked about starting your own blogs. Need is relative. I have more financial resources than some, less than others. I’m sure there are others who are more worthy.

My thoughts in this post on writing may or may not have been interesting to you. But at least you know I keep trying to get better and see the evolution of my thinking on writing. Only time will tell if I make it from the caterpillar to the butterfly.

I hope you will also keep journals and document the stories in your lives. Our silence gives the power to the people who are lazy, abuse us and reinforces the status quo. Can there be any more important goal for each of us then to tell our story and share the journey? Our children’s future depends on our writing, our voices, our advocacy.

Keep Climbing: Onward and Upward
All my best, Mary