Archive for the ‘Inspiration’ Category

Challenged by the Norm

I must admit here that I oftentimes crack myself up with my titles that probably most of you don’t even notice. This title is no exception. I’m thinking it’s pretty clever.

Norm Kunc.

If you’ve never heard of Norman Kunc, you should stop now and google him. You should go to youtube and search his name. You should go to his website. He is so not-the-norm. And I was recently challenged by him as I attended two workshops where he was the presenter.

The day started with a talk at a local library. Norm told part of his story: he was born with cerebral palsy. His family was encouraged to put him in an institution. But his mom chose to take him home. He attended a special school for disabled children until he was in 8th grade at which time he transferred to a regular public school. He went on to graduate from public school. He continued on to graduate from college and later received his Master’s degree. He is married and has children. He owns his own business. He travels internationally as a public speaker. His disability does not prevent his living and enjoying life.

His story is remarkable … inspiring. He challenged us about the all-too-common act of helping others (especially those with a disability) out of benevolence and out of a need and desire to help others. So many times helping other people makes us feel better. Sometimes helping is for us instead of the person we are helping.

Norm presented to us that perhaps the person with a disability doesn’t even want our help — maybe doesn’t need it. Sometimes stepping in to help shows a lack of respect and steals the person’s dignity. Perhaps it would be more of a help to him/her if we just left them alone, gave them space and time to complete the task themselves.

It’s a new way of thinking for me. For so many who attended the workshop.

Norm Kunc was funny, entertaining, challenging.

That night I attended a dinner where he presented the keynote. He talked more about his story. He told about the reason why inclusion of individuals with disabilities is so vital and why it is so personally important to him. Not only did the decision to include him in general education beginning in grade 8 change the course of his own life, but he told of 2 of his classmates who were also moved to a general education setting at the same time. Norm and these other 2 students went on to live very successful lives: college, marriage, children, success, happiness, fulfillment.

But he told of a 4th classmate from his special school whose parents made the decision not to transfer to general education. Norm said this student’s parents were scared of trying to include her in a regular school. She stayed in a segregated setting for her schooling. And as a result, her life went very, very differently than Norm and those other 2 students. This other classmate “graduated” from the special school and didn’t have the experience or skills or diploma to get a fulfilling job. This other student lived with her parents her whole life; this other student never experienced a romantic relationship, marriage, or having children. This other student led a very secluded life, and her life was ended early as her parents in an act of desperation and probably deep depression killed her and themselves.

A very eye-opening comparison. I and several other attendees gasped as we heard how this other student’s life ended.

I don’t pretend to think that this other student’s life story is how all stories end for students who are not included in society. Thankfully they don’t all end in that degree of tragedy. But it sure paints an amazingly sober story! What a comparison. What a tragedy.

The night really could’ve ended there. The story of “that other student” was enough to send all of us attendees out to conquer the world. But Norm went on to present the idea of the problem of disability not being in the lives and bodies of those individuals living life with a disability; instead, the problem is with our society. The problem is in our society. It’s society’s problem. Building a ramp to enable a person to gain access into a building is not just a nice thing to do. It is a way that we as a society have to attempt to fix the problem we have created — a building with an unaccessible flight of stairs. As a society, we act surprised and shocked and disappointed and fearful when someone has a disability. We need to recognize that disabilities are a natural part of life. There will always be disabilities. Whether people have those disabilities from birth, after an accident, or with aging. The problem is not within the disability … the problem is in how we respond (or don’t respond) to the fact and the presence of disability.

Norm Kunc also pointed out that his disability doesn’t limit his life. He challenged people who feel sorry for him or think of his life as less — less fulfilling, less meaningful, less fun, less important. Instead, he pointed out with humor that he’s glad he’s not ordinary! He wondered why people would even think that he wishes to be ordinary. He is happy; he is fulfilled; he is successful; he is loved; he is amazingly inspiring; and he has a disability.

We all really did leave that meeting feeling like we were ready to go out and change our world! We were so intrigued and inspired and encouraged. I have heard several people who attended that night say they didn’t sleep for thinking of the ideas that Norm had stirred in us.

But I was left wishing that many more people had been there to hear Norm. The truth is, he was talking to a roomful of folks who already agreed with him. I was wishing the room was bigger … and fuller … and that our society was getting more enlightened by Norm’s words.

I am honored to have been able to listen to Norm. What a day!

Again, I encourage you to peruse his website and read all you can. And certainly if you ever get the opportunity to attend one of his speaking engagements, go, Go, GO!


The Button

I’m nearly constantly amazed at my girl.

Chloe is 10 and is mostly nonverbal.

Please understand nonverbal to mean that she doesn’t communicate with the same spoken word that most of us do. Please do NOT understand nonverbal to mean non-communicative which would be a huge misunderstanding of Chloe.

My girl communicates! She signs, she gestures, she acts things out, she attempts to vocalize and pronounce words. She also cries, screams, kicks, throws things, and jumps in frustration — all of which are part of her communication.

As most of you know already, I’m a big believer that all behavior is communication. It’s one of my mantras, really. Generally, Chloe has no problem getting her point across and her needs communicated. We may need to stop and survey the situation to access exactly what she’s saying, but I promise she is not just throwing that toy to play catch — she’s trying to tell us something that we’re missing! (And we all need to learn to be better listeners!)

But no worries to you today — I am NOT hopping up on my behavior is communication soapbox today! No. Instead I’m telling a cute story — one of many– of a time recently when Chloe impressed me with her communication skills, flexibility, and creativity.

The other day as were getting out of the car, Chloe saw the name on a name tag that was stuck on her purse: Parker.

Chloe read the name aloud: “Parker.”

And then she signed: “School,” indicating that she knows a Parker at school.

I acknowledged her statement, not completely sure I knew which kid Parker was. I thought I knew, but I wasn’t for sure. “Whose class is Parker in?” I asked to clarify which kid Parker was.

Chloe said pretty clearly (although let me point out that I had a definite context and there aren’t that many teacher names that she would’ve said at this point): “Power.”

I acknowledged and clarified that Parker is a student in Ms. Power’s class, and Chloe nodded her head in agreement.

Next as she stood in front of me just before stepping out of the car, she drew a circle in the air and then drew a line right down the middle of it.

Hmmmmm. Not sure what that was. “A circle?” I asked. “Did you draw a circle?”

She nodded, but I wasn’t convinced that was what she had done or what she had meant to communicate. Hmmmmm. Maybe it was a P?

“Did you draw a letter P? P for Power?” I asked Chloe.

She nodded yes as she oftentimes does, but I could tell that she was just saying that. She had meant to communicate something else, and I had just missed it, and she doesn’t usually give me 2 chances.

Chloe went on in the house, made a beeline right to her room, and grabbed the first battery-operated toy she could find. As she pointed to the toy’s power button, she vocalized something … something … power?

“That’s the power button, huh?” I said, grasping at straws.

She again pointed to the power button and said, “power” again.

And then I noticed the symbol: a circle with a line through it — the exact circle and line that Chloe had drawn in the air!

“Oh! Power! You drew the power-button symbol in the air! Of course, Ms. Power!! Yes, Parker is in Ms. Power’s class! Yes! Good! Good!”

I smiled, again amazed at the lengths she goes to to make sure she is communicating with those who will listen. She must be so relieved when we get it!

She is remarkable. And how many times do I just miss it??

I’m guessing she wishes everyone she tried to talk to had a power button and all she had to do was push it …. We would “turn on,” and then we would all get exactly what she was trying to tell us! Yeah, that’d be nice!


I Still Want In

I Still Want In

by Kelly Mastin

I don’t learn like the other kids.

I don’t laugh at your jokes.

Sometimes I make funny noises.

But I still want in.


I don’t answer your questions when you ask them.

You think I’m not listening.

I drop or throw my pencil.

But I still want in.


I bump into things and make a big mess.

I stumble when I walk.

I need extra support.

But I still want in.


I growl or cry or kick my legs.

I push my book off my desk.

I don’t finish my worksheet.

But I still want in.


My body frustrates me.

It doesn’t do what I try.

You don’t notice my efforts.

But I still want in.


You don’t understand my words.

You misunderstand my frustrations.

You misinterpret me and write me off.

But I still want in.


You don’t think I’m learning.

You don’t think I belong.

You don’t think I’m capable.

But I still want in.


I still want in.

International Day of Acceptance

I am bogged down with emotion as I prepare for another meeting with Chloe’s school today. My heart, my resolve, and my brain are all very tired and stretched thin. I would love your prayers today if you think about us.

Today, January 20th, is International Day of Acceptance. I was going to attempt to write a wonderful post about what this day means to me and to my family this year. But, as I said, I’m a little emotionally-spent right at the moment.  But in re-reading my post from last year, I have to concur that that is what International Day of Acceptance means to us.  You can reread it here.  🙂

We all have our Wheelchair Heart t-shirts to wear today — even my dad has one to wear this year!

Today we are celebrating and embracing Zachary just the way he is … for it is his disabilities that make him who he is  … that make US what WE are.  And the more I can educate the people around us on his hidden disabilities, the more he will be accepted and embraced and empowered.  Really.

Today we celebrate Chloe just the way she is. . . for it is her disabilities that make her who she is.  She is a strong girl with a perseverance that just won’t stop.  She has a tender heart that has room to love a million more.  And the more I can educate the people around her the more she can live her life to the fullest without being held back or pitied.  For it is pity that will slam on the brakes to her success.

I wear my t-shirt proudly today.  I’m very proud to have Zach and Chloe in my life.  I’m very proud to be a part of the disability community.  I’m very proud to have many friends who live life with a disability.

Educate. Embrace. Empower.

(Again, read last year’s post here.)

Well Done!

Sometimes I think I can talk all day . . . write a dozen posts . . . scream from the mountaintops . . . write letters . . . over and over and over trying to explain the life we want for Chloe — the life that we think Chloe wants for herself.  Oftentimes my words fall on deaf ears (figuratively speaking).  Oftentimes my words fall on non-understanding ears.  Oftentimes my words fall to the ground because the hearer doesn’t want to hear or understand.  Oftentimes my words are given a sympathetic grin and pushed aside as a sweet mama in denial speaking non-sense.

And then I see a video that a precious mama made this week for her 2 year old daughter who has Down Syndrome.  The video is powerful — I cried and cried with the power and the truth.  At the time I am posting this, this video has only been viewed 301 times.  I’m hoping many more people see it.  I’m hoping that lots of the people who see it will be changed by it.  I’m hoping that through this video more people will understand the civil rights issue that our family and other families are fighting for.

Well done, sweet Mama!  I am sending my friends to watch your video:

Annie’s Coming Out (the book)

Annie's Coming OutI recently read the book Annie’s Coming Out and was challenged and educated and stirred. The book is about a young girl, Annie who was born in Australia in the mid ’60s, diagnosed with cerebral palsy/athetosis, and sentenced to a life in an institution for mentally retarded children.

To think how recently ago children with less-than-perfect bodies were nearly-across-the-board placed in institutions is harrowing. I know that there were still a few families that chose to keep their children at home, but most saw institutionalization as their only option. Most were told by doctors that the child would be better off in an institution. Once dropped off at the door of the institution, a lot of the children never saw their families again. Some only saw their families once or twice a year.

The book Annie’s Coming Out paints a pretty nasty picture of life in an institution — cruel treatment; starvation; no stimulation; no conversation; no touch; no music or toys; nurses and caregivers who didn’t care or understand; tiny, helpless lives stuck in a void and an emptiness and a cruelty by a bureaucracy and society that is blind to their own repulsive actions.

While our society today is not as quick to drop off a child with different abilities in an institution, it is a practice that still occurs certainly.  And I have heard that perhaps the living conditions in these institutions has not made a ton of improvement.  It is a sobering thought.

Thankfully for Annie and several other children who had spent their lives in the institution, a wonderful teacher came along and believed in stimulating them.  Rose, the gifted teacher, admits that she had no idea of how bright the children were before she started teaching them, but she saw it more as a right that they had to be spoken to and stimulated.

What follows is an amazing story of unlocking the communication of a few of these children.  These children who had never in their lives been able to communicate with another person were finally supported enough to be able to communicate to Rose.  What she learned was that some of these so-called mentally retarded children were extremely bright, able to learn to read and do complicated math and understand politics and law!

The power of communication is a great emphasis of the book.  For it is communication that made the difference for these children.  Communication brought life to them . . .  brought purpose for them . . . brought the ability to dream to them.

Rose’s efforts with and on behalf of the children were far from supported by the bureaucracy and the governmental authorities.  Society was so set on pushing these seemingly worthless children aside that they could not begin to accept the fact that they were perhaps intelligent beings.  Everyone in authority tried to shut Rose down and keep her from educating and communicating with these children.

Through the book, Rose grows close to Annie and to a couple of the other children.  She takes a couple of the children home for the weekends and exposes them to real life outside the bland walls of the institution for the first time in their lives.

And the second half or so of the book is the story of Annie’s legal battle to become free.  Annie wants more than anything to be free from the institution.  She endures much hardship and several court battles to basically earn the right to be human — the right to live her own life and to make decisions for herself.

The book is a pretty easy read, only about 250 pages.  And it is certainly eye-opening and telling.  I recommend it to anyone who loves or is interested in supporting someone with intellectual or physical disabilities.  You can find the book at here, but it is not really a widely-available book.

The book was later made into a movie.  Paul and I will watch it in the next couple of weeks and will let you know our thoughts on it.  Let me know in the comments if you read Annie’s Coming Out!

Including Samuel

As most of you know, it is important to our family that Chloe be included in life, in society, at church, and at school just as typical children — those without any disability — are included in life.  While it may sound like an easy thing, the truth is that being included in life, in society, at church, and at school is something that a lot of people do not have.  If you are living life without a disability,  the truth is that you probably just take it for granted that you and your children are included in life.  A privilege?  A right?  I believe it is a right that everyone should have — everyone with and without a disability.  I believe it’s Chloe’s right to be included.

It has been called the last civil rights issue — people with disabilities fighting for their rights to a life of value.  And I believe that it is true.  People with disabilities unfortunately often have to fight for their right to be included in life.  Our family knows this issue quite closely.  We live this issue everyday, actually.  It is an important issue, an important fight.  And it’s worth fighting for.

Paul and I recently gathered with fellow parents of children with disabilities and others who love someone with a disability and watched the documentary Including Samuel.  It was my 2nd time to see it.  It is a powerful video.  It is eye-opening and challenging.  It is thought-provoking, to be sure.  If you’ve never seen the film, I highly recommend your finding a copy and watching it.  It really sheds an honest light on inclusion in schools — its challenges, its rewards, the importance of doing it right.  Paul wrote a review of Including Samuel on his movie review blog, and he said I could share it here.  Enjoy!

Last week I attended a screening of Including Samuel with Kelly and Elliot.  It was shown at a local elementary school and moderated by our friend Jennifer, who has attended ARDs with Kelly and assisted her tirelessly with paperwork and ARD preparation.  Including Samuel addresses the challenges of including children with disabilities in mainstream classrooms, a topic that is near and dear to us as we have struggled to get Chloe placed at school.

Samuel is the son of photojournalist and filmmaker Dan Habib.  When Samuel was diagnosed with cerebral palsy, he was forced to face the issue of inclusion, a topic about which he hadn’t thought much about before.  Habib follows Samuel’s progress, as we see Samuel interacting with his peers at school and participating in the regular education classroom.  The Habibs are fortunate to live near a school whose philosophy of full inclusion accommodates students of varying levels of disability in a single classroom.

Samuel interacts with typical classmates.

Besides Samuel, we meet hip-hop artist Keith Jones, an inspiring adult with cerebral palsy who has not let his disability prevent him from a full life, including working as a music producer, marrying and having children, and functioning independently.  He says the best thing to have happened to him was to be placed in regular education classes, not segregated classes.  Other individuals featured in the film illustrate the clear benefits of full inclusion for both the disabled and their typical peers.

Keith Jones–one inspiring guy!

Habib doesn’t try to sugar coat the difficulties that arise with inclusion.  In teacher interviews, we see the range of opinions and emotions, from Samuel’s teacher, who believes that full inclusion is the best way for all  children to learn, regardless of speech or mobility problems, to the mainstream teacher who tearfully describes the challenges of reaching both the superbly gifted and the profoundly disabled at the same time.  As one teacher points out, however, the danger of creating separate classrooms for disabled children is that if there is a separate classroom, it will be used, needed or not.

Given our experience with schools which have not practiced inclusion, this quote hit way too close to home: “Inclusion is an easy thing to do poorly.  When we do it poorly, we become convinced that it cannot work.”  Even when one parent or one teacher promotes inclusion, a simplistic approach of placing a child with disabilities in a mainstream classroom without adequate support or appropriate modifications can lead to failure.  I fear that in many schools, poor execution has led to suspicion or outright rejection of full inclusion.

While Including Samuel does not provide all the answers, the film does a great service by raising lots of questions, and, most importantly, raising the possibility that full inclusion can and does work.

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