Do the words disability and handicapped mean the same thing?

This is the second in a series of posts to explain some of the basic ideas of inclusion and normalization.

The first was from one of my heroes Norm Kunc. Norm Kunc| What’s Your Credo?

If you find these useful, I hope you will comment and then share them on Facebook, Twitter and your other social media. Thanks. Mary

Words and labels make a big difference in our lives. How you answer this question can make all the difference for a person you love.

“Disability” or “Handicapped”?

Do the words disability and handicapped mean the same thing?

The short answer is NO. Disability and handicapped do not mean the same thing. And the differences are important. Is Stevie Wonder handicapped?

Does Stevie Wonder have a disability?

“A DISABILITY refers to a reduction of function or the absence of a particular body part or organ.”

So YES, Stevie Wonder, who is blind, would qualify as a person with a disability.

A disability is usually a lifelong condition: autism, an intellectual disability (the new term for mental retardation), cerebral palsy, or being deaf or blind….

Does Stevie Wonder have a handicap?

“A HANDICAP is viewed as a disadvantage resulting from a disability that limits or prevents fulfillment.”

Does being blind prevent Stevie Wonder from singing or achieving personal fulfillment as an entertainer? NO. So Stevie Wonder, though he has a disability, does not have a handicap.

Does Stevie Wonder need support? Of course. If Stevie Wonder did not have a personal assistant or any of the other modifications and adaptations he needed, then he might be handicapped.

See the difference?

Terrence Parkin swam in the 2000 and 2004 Olympics, winning a Silver Medal for South Africa. Does he have a disability? Yes, he is deaf. Does he have a handicap? Not as long as they add strobe light signals to the usual auditory buzzer to start the race. If however, the committee didn’t agree to add the strobe lights, then Terrence would have been handicapped and unable to participate in the Olympic Summer Games. Being handicapped can depend on the attitudes and social construction of the culture.

Disability is socially constructed

Like many people my age, I have trouble reading small print, (Disability). If I lived in a society where there were no books, or it was against the law to teach women to read, it might not matter if my eyesight was as sharp as it was when I was younger. However, in my culture, so many people wear glasses there is no stigma attached to having the disability of poor eyesight. So, I do not have a handicap. If I use a wheelchair and the building is accessible, I can still have a disability, but I can go to the grocery, do my banking… and not be handicapped. (I hope this makes sense. We will talk more about this in a future post.)

Why is this important?

If you or someone you love has a disability, it is not the end of the world. Even though there might not be a medical miracle or cure at this time, the disability is just a disability. No one wants to be different than anyone else. No one wants to have a harder time doing things than other people, but with the right supports it is possible to have a fulfilling and satisfying life, and not be handicapped.

This is a message full of hope. Robert Schuller says, “Look at what you have left, not what you have lost.” Physical, Occupational, Speech Therapists, Teachers, Counselors, as well as family members, friends and neighbors can look at their attitudes toward a person with a “disability” and rather than get stuck on something they can’t fix, instead spend their energy on creating an inclusive environment that is accessible for all of us.

This is our call to action: We can each think about what we can add, subtract or change to the environment to give a person with a disability the support they need so they will never have to be handicapped.

In the comments tell me what you are thinking. Do you have a story to share? How are you making your child or loved one less handicapped?

Keep Climbing: Onward and Upward

All my best,

Mary

Reference:
Bauer and Shea (1997) Special education: A social systems perspective. Brown and Benchmark: Chicago.p. 12.

————————————————————-
Just learned from Katie Snow of Disability is Natural:

LANGUAGE CHANGE!

Thanks to the hard work of the Advocacy Leadership Network (ALN) of Hamilton County (Ohio) DD Services, the Hamilton County Board of Commissioners officially resolved that “accessible” will replace “handicapped” on all new and replacement signs in the county! ALN, composed of leaders who have disabilities, had previously been instrumental in having the phrase “mental retardation” removed from state laws in Ohio.

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?

Building Community: one grocery trip at a time

Day 261: Shopping Haul
Creative Commons License photo credit: crimsong19

Building Community: One Grocery Trip at a Time

With Aaron, my son with the label of autism, every trip to the grocery is an adventure.

Before we go, I usually do an ecological assessment (click here) and use some of the skills Aaron learned in his functional curriculum when he was in school.

Establishing Routines

Over the years and with lots of practice, I know what Aaron likes and dislikes. I try to make the shopping trip a good experience for both of us.

We try to go in the morning when the store isn’t crowded. We’ve developed a system where I walk in front of the cart making sure there is no person or display in the way. Aaron then follows pushing the cart with both hands on the handle.

Aaron is really good at following and knows to stop when I stop. He seldom bumps other people or the displays. This is a skill we have worked on for years and practice every week. I am really proud Aaron can do this.

We usually go to the same store.

That way Aaron is familiar with the physical space and layout. He knows the grapes and carrots are on the right front, the bread is in the right back, and after we pick up the milk and yogurt on the far left we will head to the checkout lanes. We usually only buy about ten items so the wait in line is short. We try to build a routine and structure into the experience.

We try to build a relationship with the store personnel.

This store was only a mile from where Aaron went to high school but in the suburbs we rarely see anyone we know. One of the baggers used to be in the special education program. She does a good job and always says hello. Some of the regular shoppers talk to her by name. She is one of our special ed. success stories and has been employed for over 10 years.

But I never know what’s going to happen.

Yesterday we went to the grocery near Tommy’s house because we wanted to let his dog out for him. Even though it was the same chain we always go to, the store was set up differently. STRESS.

I thought noon on a Sunday would be okay, but it was packed and everyone was in a hurry because the football game was due to begin at 1 PM and the only way to survive a football game is with lots of beer and snacks. STRESS. STRESS.

Being ready for surprises

Aaron did pretty well. We got our groceries and went to the car. I was putting the bags in the trunk when Aaron started pounding on the roof of the car next to us. He’s never done that before.

The young man was getting his two young daughters out of the passenger side. He looked up and yelled, “Hey, stop that!”

Quickly I grabbed Aaron and was about to get him into his seat when Aaron pushed me away and again pounded on the top of the car. This time the guy came over to our side of the car.

I started to apologize when the guy said, “Aaron, is that you?”

Aaron gave him a side-ways glance.

I was stunned and didn’t quite know what to say. I looked at the guy and he looked at me, and he repeated, “Is that Aaron?”

There wasn’t much room in the space between the two cars. I took a deep breath and turned Aaron toward the young man. “Aaron do you know him?”

Instead of punching Aaron, the man gave Aaron a high-five.

I fumbled out a, “How do you know Aaron?” and the young man said they went to high school together. He said he used to come into Aaron’s class and take him to the gym. He said he and Aaron used to eat lunch together.

He touched Aaron’s arm and guided him over to the other side of his car and introduced Aaron to his two children who were about 5 and 3 years old. He told them Aaron was a friend from school and then had Aaron give them each a high-five.

Aaron was strangely quiet. He patted the younger child on the head and said, “Ahh.”

I thanked the man for saying hello. He said his name was Todd and he asked a couple questions about where Aaron lived.

We both talked about how Aaron must have recognized him and since he didn’t have any words, he used the pounding on the car to get attention. We both thought that was very clever of Aaron.

Finding More than Groceries

When we worked so hard for inclusion for Aaron in the public schools, we dreamed that Aaron would have a community of people who knew and accepted him. People who could see his gifts and strengths.

Every once in a while we have a unique success story that makes all that hard work worth it.

We’ve never expected big monumental experiences. This magic moment where Todd remembers Aaron and thinks enough of him to want to introduce him to his children–that’s big enough.

YOUR TURN

I hope you will check out a couple of the other blog articles and share your thoughts.
Do you have any community experiences to share? Any magic moments?
Do you think the future will be better for adults with disabilities because of inclusion in the schools?

Keep Climbing: Onward and Upward

All the Best,

Mary

A New Year of Learning

BACK to SCHOOL Article 2

To celebrate the new school year here are some of my favorite posts.
Article 1:

Why Do We Go to School?

Article 2:

A New Year of Learning

This is one of my favorite stories–an updated article from when Aaron was 8 years old and Tommy 6. Enjoy!

Kids in a Box

It was the weekend before school began and Cincinnati was sweltering from a week of 90 plus temperatures with over 50% humidity.

And partially because most of our neighbors don’t have air conditioning, and partially because we enjoy each other’s company, all the moms were sitting on the porch steps waiting for the street lights to signal the time for baths, bedtime and the end of summer.

Several of the children were busy with final rehearsal for the “Ralph Avenue” version of Snow White and the Seven Dwarfs. Erin was the wicked queen, Allison the prince charming and the younger children Eric, Patrick, Tricia, and my son Tommy were assorted other characters.

The kids ran in and out of the yards wearing their winter caps with the tassels dropping over, trying to look like dwarfs.

After a while, the large cardboard box from Allison’s new stove changed from being used for the stage scenery for dwarfs to a cool hideout for cowboys.

Patrick’s mother was telling us a newspaper reporter stopped by her house to do an interview with “a new kindergartner.” It would be a three part series on Patrick’s impressions before school began, during in January, and a third article after in June.

The poor reporter had a time of it because every time she asked Patrick (5 yrs.) about the imminent kindergarten experience, Eric (6 years and a kindergarten veteran) would give his answer, including a heated discussion about, “Who would be picked for the cookie passer?”

It was so much fun to be watching the kids and hanging out with other mothers but the beginning of school is very traumatic for me because of our continuing problems with the special education school program for my son.

Aaron has the label of autism and severe intellectual disabilities. A new year signals the beginning of another year of battle for inclusion.

But maybe because it was too hot and maybe because I was surrounded by friends, I continued to sip my ice tea and enjoy the normal conversation of my neighbors.

Patrick said his favorite football team was the Jets. His brother Michael, age 3, noting the adults’ interest, announced his favorite team was “the helicopters.” Jets—helicopters, why not?

Tricia’s soccer team won every game last year with a very gentle and knowledgeable coach. This year they won their first game but the new coach yelled and screamed and was upsetting the team and their parents. The parents wondered if victory was worth the price?

Moments that make parenting fun

Tommy went for his school physical and when the nurse asked him to urinate into a cup he burst into tears.

I pointed to the counter and its rows of labeled cups and told him everyone—even grownups–had to do this.

Sobbing he said, “Okay—but I won’t drink it.”

Later he asked, “Mom, why do they need a toilet in there is everyone pees in a cup?”

My friends and I exchanged sale prices on jeans and problem solved about the best backpacks and gym shoes with shoelaces that didn’t need to be tied.

We laughed, reminisced about summer and shared the thunderstorm warnings.

Eric’s Mom passed out popsicles.

All this time Aaron was walking up and down following the crowd of “dwarfs” as they flitted from yard to yard. He didn’t get a lot of direct attention, yet he was part of the group. For a time they all put on football helmets and Aaron went over, knocked on them to hear the funny sounds and everyone giggled. Aaron got quite excited and even though he is tactily very defensive he allowed them to place the helmet on his head, for a minute anyway.

Tommy brought out his golf clubs and soon Eric and everyone tried a few swings hitting a large flowered ball. Once Aaron was too close and thoughtfully Patrick took his arm and helped him get out of the way and Eric adapted and shortened his swing.

Then the crowd was back down the street again. This time Aaron waited for the abandoned golf club. He bent over and balanced perfectly picking the club out of the grass. He began in his own way to hit the big plastic ball around the yard. Then he too lost interest and headed back down the street to find the other children.

Four years ago, the same day we moved into our home, a group of people on the other side of town filed a lawsuit to protect their neighborhood from the “danger’ of a proposed group home for people who were labeled mentally retarded. I remember my worry of meeting our new neighbors and their reactions. What would be their concerns, fears? Would they allow us into their community?

There have been awkward moments when Aaron would do something inappropriately. But then “normal” “regular” young children have their good and bad moments like the rest of mankind.

Now Aaron was just Aaron and each neighbor had worries about jobs, children, families—the usual. We were a part of their neighborhood, their community.

As the sky darkened and the parents began to gather up the toys, football helmets, golf clubs and the talk again turned toward getting the children to bed so they would be fresh for the first day of school, I couldn’t help but think of how children and adults learn.

We use our creativity for Snow White costumes and playing with discarded boxes. We use our problem solving skills to find sale priced jeans to stretch our budgets. We use skill development including repetitive drill and practice for playing soccer and for picking up golf clubs out of the grass. We build on our experiences and associations whether they are jets and helicopters, cups and drinking, or how we feel about people who are different than we are. We also learn from people, some of whom are rough coaches, some parents, some newspaper writers, and some—neighbors.

School may begin tomorrow but in our neighborhood a whole lot of learning happened tonight. And perhaps, just perhaps—because Eric and Pat and Tommy will grow up with their incidental learning, experiences, associations and relationships with Aaron, the years of battles for belonging, full inclusion and citizenship will be shortened and our war for acceptance will be won.

Sometimes the make-believe lessons of Snow White overlap with the real world lessons of our family. After all, wasn’t Snow White the one who sang: “No matter how your heart is grieving, if you keep on believing, the dream that you wish for will come true.”

Keep believing, keep dreaming and a Happy School Year to All.

YOUR TURN

Has our dream of inclusion for all kids come true? Certainly more children now have the opportunity. Aaron, Neil Roncker, Jenni Wetzel, Julie McMahon–they were the first kids in the doors of the public schools in Greater Cincinnati. I believe with all my heart they touched the lives of their peers who are now grown and sending their own children off to school.

And some of these young parents became the doctors, teachers, bus drivers and parents of kids with special needs. Our lives really are all part of each other, all part of the circle of life. I hope this new generation feels better prepared. I hope the schools their children attend are also better prepared. I hope our communities are more welcoming to those who have differences.

What dreams are we still wishing for? What lessons are we still learning?

Comments

Please leave a comment so we can celebrate this new year of learning.
What are you thinking about as the school year begins?

Keep climbing–onward and upward.

All the best,

Mary

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