Archive for the ‘Leisure/Recreation’ Category

People First Controversy

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”?

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, friend, neighbor….

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?

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.)

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.

Tale of Two Brothers: Sibs of People with Disabilities

It was the best of times and the worst of times. (Sorry, couldn’t resist.)

All boys and girls grow up into adults. If the statistics are correct that one in 88 children now have the label of autism–that’s a lot of brothers and sisters.

The cute little brothers on the hiking trail grow into … what?

Can the brothers and sisters of people with disabilities, including autism, stay close and involved in their sibling’s life? How does it change over time? Can anyone have a “normal” life?

When we first suspected something was wrong with Aaron we went to the neurologist and began tests. We told him we were thinking of having a second child and he said, “Great, Aaron would love to have a brother or sister.” The tests took 6 months and fortunately for us, we were already pregnant when the neurologist told us Aaron would, “always be in special schools.” (which was his way of saying Aaron had cerebral palsy and was severely retarded–though we didn’t know what he meant.) Tommy is 18 months younger than Aaron who later added autism to his list of neurological labels.

I can’t imagine our lives without Tommy. I think God knew our family needed him to help us get through the rough spots. He is a very thoughtful quiet guy, who is one of the most caring people on the planet. He is also a terrific problem solver and continues to be such a source of joy and support to Aaron and all of us.

In this picture (Aaron 10 yrs) and Tommy (10 yrs) pose on one of the hiking trails in the Great Smoky Mountains. Sometimes our whole family would go on the hikes, sometimes Tommy and his dad, Tom, would go and spend a couple nights on the trail while Aaron and I stayed in the basecamp.

Thankfully Aaron let me use him for an excuse so I wouldn’t have to hike 10 miles up the mountain, sleep on the ground worrying about bears, and shovel the … you know. Sometimes it was just Aaron and me roughing it in the camper with running water and toilets that flushed. Sometimes my dad or sister Janet joined us at basecamp. It was always a great family adventure (click here).

Tommy has always been involved in Aaron’s life. Until he went to college, they went to school together and were involved in some extra curricular activities together. He certainly had his own friends and activities, but Aaron was involved in his life if it was cheering at his baseball games, watching him play video games or build stereo speakers….

In the last several years Tommy’s job, as a radio frequency engineer, has taken him to South Carolina, North Carolina, Pennsylvania, Virginia and D.C. (Did I mention he was in charge of setting up the cell phone operations for Nascar and the Super Bowl?)

He recently moved his family back to Cincinnati and is now living between Aaron’s house and our house so we get to see his family almost every week.

Because Tommy has grown up with Aaron, he knows what Aaron likes and dislikes–sometimes even better than mom.

Tommy invited us all to his house yesterday and his wife Ana fixed an amazing dinner. Isabella (1 year) was climbing on Aaron and making him laugh.

Dignity of Risk

Tommy is now an adult who understands the “dignity of risk” (click here) and lets Aaron share his life with his family. Notice that while Aaron is pushing Isabella in the stroller, Tommy is hiding in the bushes making sure everything is okay.

Aaron can independently push Isabella and talk to her (why she was looking at him). He is using his skills. But Tommy is close by. Isabella enjoys her ride with Uncle Aaron and is safe.

I could not have planned for this special moment. I did not have a lesson plan or task analysis. Tommy just figured it out.

What a great brother.

LIFE IS GOOD!

I want to share two stories about brothers and sisters of people with disabilities that have been in the news.

Sister “Deebah” makes a video about her brother

The first video is by Brooke May, a young girl who has a brother Jonathan, with the label of Down syndrome. Let me know your thoughts in the comments, but I see a loving relationship and a sister who reminds me of Tommy.

Time magazine article by Noah’s Brother

The second story is an article in Time by the author of Boy Alone: A brother’s memoir (Harper). It is written by Karl Taro Greenfeld who’s father wrote the famous book, A Child Called Noah. It is fascinating to follow this family’s journey into the second generation and the adult world. This article points out some of Noah’s history and does not have the miracle ending we all wish. It suggests the way to survive is to live in the present. It also hints at some of the experiences the author experienced in the past and now in his role as advocate and caregiver for his brother. It is a sober message. Again, please share your comments below.

I love the title! “Growing Old with Autism” (click here)

Another Quote:

I remember reading an article where one brother of a person with a severe disability said, “Growing up was like being an only child, with a brother.” When I asked Tommy about this, he was very thoughtful and just nodded.

Comments Welcome

What do you think? Do you have any stories about brothers and sisters?

Keep Climbing–Onward and Upward

All the Best,

Mary

9999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999 April, 2012 is Autism Awareness Month

Is Autism just the Disability du Jour?

April 2 is World Autism Awareness Day and in the US, the month of April is “Autism Awareness Month.”

Autism and the public service announcements are everywhere on TV:

• 1 in 88 children is now diagnosed with ASD.
• Early Childhood intervention programs help.
• People with autism can be smart.
• A child with autism can happen in any family.
• Many celebrities have children with autism.
• Shows as diverse as Desperate Housewives now have storylines about people with autism.

This is all good, right?

Gone are the days when parents were told their children were withdrawn because they were poor parents and “refrigerator mothers.”

Gone are the days when, with my son Aaron, we were told, “The chances of having a child with autism were 1 in 10,000.”

Gone are the days when we were told Aaron would always be in the “idiot range of mental retardation.”

Gone are the days when anyone who was different was sent to the “state hospital or institution” to make the community safer.

Gone are the days when people with intellectual disabilities were given “radiation” in their oatmeal because they weren‘t really human and were only useful for human experiments.

Gone are the days when, there was no mandate for early intervention programs.

Gone are the days when, we segregated people with autism into separate classes, schools and institutions away from their brothers, sisters, neighbors and community…. But wait!

Gone are the days when no one knew the best educational practices and the children spent hours doing meaningless tasks focusing on “curing” the child. But wait!

As the “autism awareness” campaigns seem to focus on using fear tactics to raise more money and get more segregated “autism-only” programs, I have to wonder if this really is a good idea.

God help us if the current trends toward “autism only” programs undermine everything we have fought for and learned in the last 40 years.

Some of the things we have learned are:

All people are human and have dreams, feelings, and hopes for the future.

All people have gifts and strengths.

All people have personalities and can love.

All people can learn.

All people benefit from early childhood programs.

All people benefit from differentiated instruction and universal
design.

All people need support and to learn to be interdependent on others.

All people have the right to life, liberty and the pursuit of happiness.

All people can communicate and have important things to say.

Behaviors equal communication.

People with autism and other labels can be contributing members of society.

People with the label of autism, are not much different than the label of cerebral palsy, spina bifida, ADHD, cancer… or people who are poor, elderly, sick… er, “normal.”

The real way for the general population to understand and have an “awareness” of people who are different than they are, is NOT just a television campaign or a designated month.

The best way is for everyone to have first hand experiences:

Do you know that person’s name?

Do you see them in the grocery store?

Do you share time with them at Church?

Do your children go to school with them, play on their sport’s team?

Are they invited to your house, to birthday parties?

Do you see them working in real jobs, doing volunteer work, sharing their talents?

Do you enjoy being with them?

Do you allow them to grow up and become adults?

How can we teach self-determination and better communication?

SHOULD NOTS and SHOULDS

Autism Day, Autism Month, Autism Awareness SHOULD NOT be about spreading fear or all about a “Diagnosis.”

It SHOULD be about the difference between having a disability and having a handicap?click here
Autism Awareness SHOULD be about more research, certainly. But, the research should be to ask questions, NOT to provide answers—in 2012 we don’t know enough to have answers.

Did you know that Howard Gardner studied people with autism when he came up with the idea of “multiple intelligences”?

Did you know Vygotsky examined people with severe communication problems when he developed his communication ideas on “scaffolding”?

Autism Awareness SHOULD NOT be about raising more money for those parents, professionals, for-profit and non-profit groups that are on the “Autism: disability du jour” bandwagon. They are no better than speculators benefitting from a war.

Autism Awareness SHOULD NOT be about making more segregated autism-only day programs, farms, residential communities, schools, classrooms, soccer leagues and summer camps.

Who would ever think putting a group of people with communication issues together would be a good idea? What they need most is interactions with others with strong communication skills.

Autism Awareness SHOULD BE about noticing and appreciating ALL people who are part of our human community.

It SHOULD NOT be about charity, pity and sympathy but rather about giving ALL people the freedom to grow up and be the best person they can be—just as they are: able to make their own decisions; be treated as adults; made mistakes; and, loved because of who they are.

Autism Awareness SHOULD be about the concepts of “normalization” and “inclusion.” It SHOULD be about looking at people in the normal lifespan, normal opportunities. Not about fixing them with lots of therapies and aversive methods of behavior control.

Certainly, I have written many times about how Aaron and others need more support and people who are trained to work with them.

Certainly, I agree there is a desperate need for help for parents of adults to be able to find resources for their children.

Certainly, I have written of what a “Dream Plan for Aaron” would look like. And that includes Awareness–But much more.

Is Diversity Beautiful?

Challenge

People with autism have taught us much about love, interdependence, talents and courage.

Can you try to get to know a person individually? Can you listen to them? Can you help them be a bigger part of your life?

If so, then April can be a month of great hope.

The earth’s bounty blesses us with many different kind signs of spring. The flowering magnolias, dogwoods, apple and pear trees each add color and diversity to our world. The tulips, daffodils, crocuses each speak of the beauty of variety and remind us the earth is being reborn. Would we only want one kind of tree blossom or flower? Should we identify, diagnose and separate the trees and flowers and only celebrate the most durable or productive? Or is their beauty even in the most vulnerable blossom?

Can we appreciate and value a great diversity in nature? In people?
Maybe the most beautiful flower in the world, is really the beauty in a person.

Comments

I’m hoping you will share your comments and thoughts about people with autism? What are you doing this month to celebrate diversity in ALL people?

Keep Climbing: Onward and Upward
All my Best,

Mary

Mouth watering?

Don’t these chocolate covered strawberries look delicious?

For Valentine’s Day, or any day, what about making chocolate covered treats or gifts for the people you love?

Chocolate Covered Fun for ALL AGES and Abilities

Parents, Special Education Teachers, Directors of Day Programs and Senior Centers: Everyone is looking for activities that are fun, age-appropriate, and allow people with all ability levels to participate.

Taking your favorite snack for a chocolate dip may be the answer.
The costs will vary according to the ingredients, but pretzels and marshmallows are cheap. Of course, if you want to go gourmet, hey, yum.

Partial Participation

photo credit: mbaylor

“Partial Participation is Better than Exclusion from an Activity” (Lou Brown)

Even if the recipe says, “Easy” that doesn’t mean every person can do every part of the activity.

For instance, Aaron, my son with the label of autism, wouldn’t be able to set the timer on the microwave–but he can certainly dip the pretzel in the chocolate sauce and choose the kind of sprinkles for the decoration.

Aaron can’t read the recipe with words, but he could follow the directions with pictures and though he can’t drive to the grocery, he can partially participate by picking out the pretzels and chocolate.

When Aaron was in school and had a speech therapist, one of his goals was identifying pictures of grocery items and finding the item in the grocery aisle. When he had a physical therapist, one of his IEP goals was pushing the grocery cart without hitting anyone in the grocery store. (Not a pretend grocery store in the classroom.) When he had an occupational therapist, one of his goals was to hand the grocery clerk the money to purchase the items and put the money back in his pocket. Aaron successfully learned these skills and practiced them every week in his functional community based program and … every time our family went into the community grocery store.

There are lots of things Aaron can do to partically participate in every activity.

When Aaron is part of the group, when he does purposeful, functional activities, he develops self-esteem, he is a doer. He is not just a passive observer. If he is treated as a baby, or as someone who cannot do anything but watch, then he loses his skills and his self-esteem. The people who think they are being nice and helpful to him, are not–they are actually causing him to lose skills/self-esteem.

This is a functional activity because if Aaron doesn’t go to the grocery to get the supplies someone else will have to do it.

If Aaron is actively involved in the shopping, the decorating, and gives the chocolate covered pretzels as a gift HE MADE–then this activity becomes much more than an easy activity to fill the day. It can become a learning and social enhancing experience. When he gives Grandma a package of pretzels he made, it is a joyful celebration for everyone. You should see his smile

Be Creative: Lots of Ideas

Dip White or Dark Chocolate Ideas:

Dried Fruit (apricots, raisons…)
Fresh Fruit (strawberries, cherries with stems, apples (whole or slices)…)
Pretzel Rods or any size
Marshmallows
Cookies
Graham Crackers
Candy Canes
Rice Krispie Treats

How to Make Chocolate Covered Pretzels:

Things You Might Need:

Microwave-safe glass or measuring cups

Cooking spray

Bags white and dark chips (12 oz.)

Spoon

Pot Holders

Cookie Sheet

Wax paper

Bag of pretzel rods (12 oz.) or other food

Small candies or sprinkles

You Tube Video Demonstration

Task Analysis or Recipe

Chocolate-Covered Pretzels with Sprinkles

Recipe courtesy Paula Deen for Food Network Magazine
Prep Time: 20 min, Inactive Prep Time: 24 hr 0 min
Cook Time: 2 min; Level: Easy
Serves: 24 pretzels

Ingredients:
• 1 12-ounce package milk chocolate chips
• 1 12-ounce package white chocolate chips
• 24 large pretzel rods
• Assorted holiday sprinkles

Directions:
Place the milk chocolate chips in a microwave-safe bowl and the white chocolate chips in another. Microwave one bowl on high for 1 minute. Remove and stir with a rubber spatula. (The chips should melt while you are stirring, but if they don’t, you can continue to microwave for 15 more seconds, and then stir again.) Wash and dry the spatula. Microwave the other bowl on high for 1 minute, and stir until the chocolate is melted.

Dip one pretzel rod into the milk chocolate; use a spoon or butter knife to spread the chocolate about halfway up the rod. Twist the rod to let the excess chocolate drip off. Hold the rod over a piece of wax paper and shake sprinkles on all sides. Place the pretzel on another piece of wax paper to dry. Coat another pretzel with white chocolate and sprinkles. Repeat until you’ve coated all the pretzels, half with milk chocolate, half with white chocolate, and let dry completely, about 24 hours. (Cover any remaining chocolate with plastic wrap and store in the refrigerator.)

Copyright 2011 Television Food Network G.P. http://www.foodnetwork.com/recipes/paula-deen/chocolate-covered-pretzels-with-sprinkles-recipe2/index.html
All Rights Reserved

Gifts and Favors, Holiday Variations

President’s Day, Halloween, Easter, 4th of July, Christmas Variations

Comments:

Does it make sense that an activity as simple as making a chocolate covered pretzel can be a learning and self-esteem project? Can teachers, parents and directors of day programs make this more? Can they blow the opportunity?

Have you any ideas on this or other projects?

Keep Climbing: Onward and Upward

All my best,
Mary

Other Related Articles:

It’s a Jungle Out There| Inclusion in the Grocery Store

Language of the Heart| Heartaches and Heartsongs

Busy vs. Bored| Life Space Analysis for People with Disabilities

The Animal School| Differentiated Instruction

Test Questions| Inclusion or Segregation?

Teachers| Segregation or Inclusion

Happy Ever Afters| One For The Money

Norm Kunc: What’s Your Credo?

The twelfth day of Christmas is Jan. 6th–Little Christmas, The Feast of the Magi.

Actually, it’s all the Magi’s fault. They are the ones credited with giving the first gifts.

Based on the number of people in line at the return desks last week, I’d say many people had problems with their gifts. (Actually I could see Mary and Joseph thinking the gold was useful, they could buy a wagon or better donkey, but what were they supposed to do with Frankincense and Myrrh. Myrrh–really????)

I know it is supposed to be the “thought that counts,” but it really is much more. Gifts are a whole cultural phenomenon.

My mother is 89.

Recently she’s had hip replacement surgery and has trouble shopping for herself.

Two months before Christmas she told me she wanted slippers. Slippers it is. I don’t have to guess her gift. And this is great…EXCEPT

Every day for the next month she would call me on the phone (usually at 6 AM because that is when she wakes up and is thinking about slippers) and define what kind of slippers. They had to have rubber soles so she could wear them outside if she wanted. And this is great…EXCEPT

She couldn’t tell me her size. It seems some Large slippers are size 8-9, some Larges are size 9-10. And the manufacture, design, model, production all make a difference.

I went to three different stores and brought her “Pair number one” on Thanksgiving. She didn’t even try them on. Which actually made it easier to exchange them, which is great…EXCEPT

She really wanted black. But none of the stores made black slippers. So, I picked out some navy size 8′s and 9′s and 10′s, and some pink (everything she owns is pink) in a size 8-9, and 9-10. And I figured I’d give her a choice. Which was great…EXCEPT

She decided she wanted slippers that weren’t slip-ons. “Only the devil would make slippers with open backs” and she has had slippers that covered her whole foot, well–her whole life. And, she thinks she has ugly toes, so–none of those slippers with toe cut-outs. So, I boxed up and returned the slippers. And it was great…EXCEPT

The next three stores didn’t have black or whole foot slippers. But they did have navy.

You know where this is going, right?

Yep, I rebought her the same slippers (that she wouldn’t even try on) from the first round. She opened them on Christmas and said they were perfect.

So, it makes you wonder.

Was the gift really about slippers at all?

Grandma and the Thong

The picture above is from a previous Christmas. My sister Martha worked in a lingerie store and gave each of the girl cousins a pair of thongs. They thought they were nice. Certainly something practical they could use. EXCEPT

She also gave one to Grandma.

The gift became an urban legend in our family. It brought down the house.

Even though mom didn’t even recognize the thong as underwear—it was the shared experience with her grandkids that made it the perfect gift.

Which again makes me wonder about gifts.

Aaron’s Christmas Gift and Charity

This Christmas Aaron went to a Christmas Party sponsored by a local non-profit. These are kind folks. Many of the people with severe disabilities are the poorest people in the county and don’t even have family members who can give them gifts. So, this is not only a nice gesture, it is an opportunity for these poor souls to get a little something extra.

This year the non-profit got items donated by local businesses to give as gifts. Over 150 adults with disabilities came to the Christmas Party and Dance.

There are so few recreation opportunities, many of the people put on their best clothes and showed up early. Many more wanted to come, but there was little transportation and they depend on staff–who didn’t want to bother.

At the party, even though they arrived early, there were only chairs for 100 people. So Aaron and Jack, his roommate, had to stand and hold their coats.

Since Aaron has balance problems, and couldn’t understand why he couldn’t sit down (people were guarding their chairs) he started biting his hand and pinching others. Not good behavior at a party.

Their staff person made the sensible decision to leave (even more people were coming in the already over-crowded room). Aaron and Jack were each given a “gift bag” at the exit. Which was nice… EXCEPT

The gift bag had a pair of donated slippers. Yea! I would be laughing too, slippers… EXCEPT

The slippers were size 11.

Aaron wears a size 9.

Now, no one with balance issues is safe wearing a pair of slippers two sizes too big. And, unlike my mother, these slippers were charity—donated. So there was no gift card or receipt, most people had no dutiful daughter, family or staff who cared to make an exchange.

And, Aaron couldn’t understand why anyone would give him slippers he couldn’t use. So he just carried the slippers around the house—making me crazy that good, kind people could be so dumb. After all who is the “intellectually challenged” person here? Did they think they wouldn’t notice the slippers didn’t fit? Or all people wear size 11?

Is “Just getting something to open” the point? Even if they can’t use it?

What is Charity?

If you plan a charitable event and are giving gifts:

Don’t

Don’t just arbitrarily pass out slippers, or coats, or T-shirts with misspelled words.

Don’t give radios with no batteries—because they want to use the radio that minute and staff often won’t be bothered with batteries.

Don’t give them things you couldn’t sell or are broken.

Don’t make your interaction a one-time-event.

Do

Do have a party with chairs and refreshments for everyone.

Do get to know people as individuals

Do think about what YOU would want to get

Do think about normalization, age-appropriate entertainment and gifts.

Do think about transportation and staff and family members

Do consider that the shared experience, like Grandma getting the Thong, may be the best gift ever—no excepts.

Keep Climbing: Onward and Upward

All my best,

Mary

Comments:

Okay, best/worst gift stories? Am I just being an ungrateful jerk? What is the role of charity? Is it appropriate to give broken, torn things to Goodwill/charity? Only 258 shopping days until Christmas????

Do You Hear What I Hear?

Do You See What I See?

In 1962, the song Do You Hear What I Hear? became an instant success when its lyrics asked us to hear, see, listen and “Pray for Peace, People Everywhere.” 1962 was a time of fear and uncertainty–much like 2011.

Today, as the year is coming to an end, I invite you to journey virtually to the Middle East–to the land of shepherds and millions of stars Listen and See this new version of a holiday classic.

‘Tis a Season of Magic

Blake Roberts and Pastor Snoopy Botten are musicians and visual artists who have collaborated on many CDs. Both are artists who inspire us to reach for the stars.

Their magic is their vision, talent and… a speech synthesizer with DECtalk software which helps people who can’t sing with words–sing with tech. Those who can’t see–paint with tech.

The result is poetry in motion.

Enjoy!

Do You Hear What I Hear? |Music and Visual Art

http://pastorsnoopi.twigs76.com/songs/DO YOU HEAR WHAT I HEAR.mp3

In Blake’s Words:

Dectalk is a speech synthesizer that can be programmed to sing. I like Dectalk because I enjoy making it sing. Additionally, an almost infinite number of voices can be created with it.

Snoopi is a good friend of mine whom I met on the Internet several years ago. We enjoy working together on the CDs Snoopi has produced over the past couple of years. I did all the DECtalk programming and Snoopi mixed my DECtalk file with the karoake track.

My friend Snoopi is the same Snoopi you know on Facebook.

Snoopi programs Dectalk because it lets people who can’t talk sing like everyone else. I program Dectalk because I enjoy it.

I program songs at the same level of excellence as Snoopi. In fact, I am slightly better in some areas. Snoopi is the best Dectalkist in the world, I am second best. We never intended to be first and second best, we just are.

In summary, programming Dectalk is my favorite thing to do. Blake

More information about Blake and Snoopi:

Click here for http://pastorsnoopi.twigs76.com/”> for an article about this unique team.

If you would like to contact Blake Roberts go to: beroberts@hughes.net

If you would like to contact Snoopi Botten go to: http://www.dectalksings.com/ or email Snoopi at dectalk@aol.com.

The video below is about Snoopi. Imagine, he sang the National Anthem for a professional baseball game. Don’t you love his confidence and spirit? His goal is to get a Grammy–and I think he will.

Keep Climbing and Singing: Onward and Upward
All my best,

Mary

What do you hear? See? Think? Want to discuss?

What did you think of Blake and Snoopi’s version of “Do you hear what I hear?” Do you know anything about DECtalk? or other programs to help people with disabilities talk/sing/dance/make beautiful art? I was struck how their work makes me listen and see differently, how it helps me see “goodness and light.” What about you? Do you know anyone who might also be interested in collaborating with Snoopi or Blake? Does their can-do spirit remind you of Aimee Mullins?

Inclusion for Moms| Sisters of the Heart

When Marsha Forest, Judith Snow, Jack Pearpoint and Father Pat started spreading the gospel of inclusion, they talked about the ABC’s Of Inclusion.

A = Acceptance
B = Belonging
C = Community

I’ve spent a lifetime learning and working for inclusion for Aaron, my son with the label of autism, and other people with disabilities.

But as hard as it is to create inclusion for Aaron, it is also just as difficult for parents to have inclusive experiences. Moms, Dads and Family Members are always being segregated into “special” groups… Special Olympics, Autism Speaks, Arc, TASH….

Inclusion for Moms

Four years ago, I stumbled across an ad in our community newspaper about the Lori Foster Gathering for Readers and Writers. The “Gathering” was at a nearby Marriott Hotel and looked interesting. Plus, it had NOTHING to do with disability issues.

It became a transformational experience in inclusion–NOT for Aaron, NOT for Aaron’s mom, but for me.

ACCEPTANCE

Over 300 authors and readers of romance novels were gathered around tables in the conference room. Decorated baskets were being raffled and authors signed their books. Books were everywhere.

Many of the women were in costumes that corresponded with the themes of their books. They wore cat ears and tails, fairy wings, Victorian hats and jewelry, pirate and cowboy hats, wedding veils, capes, Hawaiian flowers in their hair… They were young mothers and white hair grandmothers. They were unpublished and New York Time bestselling authors.

I learned “romance” novels ranged from: sweet to exotic; contemporary to historical; “All-American” to English royals to Scottish highlanders to space aliens to vampires; time-travel, mystery, suspense and even inspirational tales of the Amish…. Who knew?

Hey, I guess if these women could dream up relationships with werewolves and fairies, they could accept anyone—even a plain old mom who’s got a kid who isn’t “normal.”

I was accepted.

BELONGING

In the first couple minutes, I was embraced as an old friend. It was that easy. I sat down and was welcomed into the group.

I didn’t have to join a committee, volunteer or sign any oaths of allegiance. I was okay just the way I was.

Some authors published several books a year. Several published none, but bought and read books—thus supporting everyone as loyal fans. There was a continuum and only support–no competition.

In “disability” conferences, there was stress. I was always looking for help for the current disaster in Aaron’s life.

There was always a pending national crisis: Special Education was losing funding; someone just died a tragic death in an “institution”; an amicus brief had to be written for an innocent person on death row; signatures were needed for some campaign or new legislation; some non-profit was going bankrupt…. There were always a hundred heartaches. Sure, there were people who supported each other—but they were often just keeping their heads above water.

SHARED INTERESTS

One of the requirements of making friends and community connections is about “shared interests.”

The women at my table shared stories of their favorite authors and books. They pointed out Lori Foster and Dianne Castell, the organizers. They gave me books from the “trading library.”

There were national issues about publishing, I met a woman who had been kicked out of the national RWA organization ten years ago because she wrote an “ebook” when only print books were considered legitimate. Changing paradigms is difficult, leaders struggle in every field.

But, there were no tears or gut-wrenching stories with no solutions. As the authors spoke of their writing, they added information about their family lives in Canada, Texas, California, Vermont or where they lived, but they were happy people. They had the usual family dramas, but that was not the focus of why they were in Cincinnati. Several people had family members with labels and disabilities, but the conversation was about writing and publishing–not a single IEP issue.

And, I belonged.

COMMUNITY

Proximity

People being together in the same place is another requirement for making friends and community connections.

The members invited me to join The Ohio Valley Romance Writers of America (OVRWA) chapter which met the second Saturday of each month. This became the highlight of each month. Each meeting had veteran writers giving clinics and informational sessions on branding, plot development, submission guidelines…. Though we socialized after, this was a serious professional group of writers. Some were stay-at-home mothers of young children, but there were lawyers, college professors, nurses, teachers…. Sometimes we would meet for a “Girls Night Out” or go out after the meetings.

Nothing against the “Mothers of Special Children” or the “Lakota Parents of Special Education Students” groups, but this was the closest to “normal” I’d ever experienced.

Sisters of the Heart

I thought of true stories of friends and relatives meeting their spouses, and decided to try my hand as a romance writer. What a joy to be thinking about happy stories, rather than writing about the autism wars or inclusion battles.

I started to learn everything I could about writing and publishing. I entered and judged contests, went to a writer’s conference in Columbus, local workshops. I was getting new skills…and new friends.

When I went to the Lori Foster Gathering the next year, I was an editor of a small e-publisher and had close friends in the Ohio Valley Chapter.

It was the first time in my life I was included, and it had nothing to do with disabilities. I was a person-first. Imagine.

I want a Happy-Ever-After

Last weekend was my fourth Lori Foster Gathering. There were 400 people from all over the continent. Proceeds from the basket raffles went to soldiers in Afghanistan, a pet shelter, and a local non-profit. We raised around $10,000.

And, we had a ball.

I laughed and cried. I talked about books, authors and only occasionally about Aaron. I actually went out to a restaurant and didn’t get home until almost midnight. I relaxed.

Many of my friends are now published authors. I’ve watched them grow and bloom. I’m so proud of them.

My core group of friends encourages me in my own writing and in my life as Aaron’s mom. They know some of Aaron’s story and our continued struggle as we try to find a home for Aaron, try to figure out the government regulations and funding. They read my blog (hi everyone) and are my biggest supporters as they retweet and spread the message on social media networks. Their questions help guide the information I give. We “inclusionists” often only talk among ourselves–what an irony. They help me spread the real message of inclusion to just good folks who live in our communities.

They are friends… and in the process have become sisters of my heart.

After all, “my people” know about more than just romance. They know about love.

They know the A, B, Cs. They may not be able to give a definition, but they know about inclusion.

They might call themselves writers, but they are also healers and teachers who are helping me find the land of “happy-ever-after.”

Keep Climbing: Onward and Upward

All my best,

Mary

Join in the discussion

What do you do to “include” yourself in the community? Are you a member of any social groups…? Do you agree parents and professionals often segregate and isolate themselves in the struggle for inclusion? Have you read any good “happy-ever-after” stories lately? Will our children with autism and other disabilities also find “happy-ever-afters”?

Related Stories:

Happy-Ever-Afters| Rangers and Kick-ass Aikido

Building Community| Wheelchair Becky vs. Flat Stanley

A Parent’s life| Thinking, Worrying plus Actions

Balancing my child’s needs and mine.

Wretches and Jabberers Review| A Jab to the Heart

Last Saturday, Aaron and I went to see Wretches and Jabberers. The director of Aaron’s new day program at Goodwill/Easter Seals, Miss P., went with us.

The movie raised so many emotions, lessons, buried feelings and experiences I literally couldn’t write or even talk about the movie for a couple days. The movie was a Jab to my heart and my memories. Here are a few of my thoughts:

Past Experiences with FC

In 1993 wrote about our story in First Hand: Personal Accounts of Breakthroughs in Facilitated Communicating (FC) edited by Anne Donnellan and recently (2011) in Real People, Regular Lives: Autism, Communication and Quality of Life by Sally Young. That is a very long story full of joy, sorrow, despair, hope and many shattered dreams.

Current Experiences with FC

The good news is when we got home from the movie, I sat with Aaron at the computer and for the first time in probably 10 years he typed with FC (Facilitated Communication).

“I OK” “Hi Mom” –just a couple letters–but it was a start.

Even better news is Miss P. said she would invite the technology people at Easter Seals to work with Aaron and see what kind of communication system we can set up.

Because Miss P. cared enough to give up her Saturday and go with us to Wretches and Jabberers, we have a common framework to begin our time together. There is no value I can put on this. It is priceless and HOPEFUL with a capital H.

Wretches and Jabberers Movie Review

There are two moments from the movie that are keeping me up at night.

1. Tracy is advocating in the Senator’s office about his concerns that budget cuts will mean he will remain homeless and reduce his support services. He feels a “tidal wave of emotions.”

2. At the end of the visit in Japan, Miki and Naoki Higashida say goodbye to the group and get into the elevator.

Tracy the Advocate

Most self-advocates, parents and professionals can understand Tracy’s wild emotions when talking about not getting the services he needs and his fears of getting the critical support system of his facilitator and support staff cut.

Unfortunately, the US Congress announced it is cutting Medicaid by 20%–yep, rather than tax the rich they are going to cut the programs for people with disabilities, the poor and the elderly–people like Larry, Tracy and Aaron. The Arc sent this alert (click here).

The nightmares and angst Tracy felt is the same that makes me wring my hands, stay awake at night…. I join Tracy in jumping up and down in frustration.

Tracy’s chance of getting enough funding so he won’t have to be homeless is worse now than when the movie was filmed. God Bless Us All as we face these life/death cutbacks.

Miki and Naoki Get on Elevator

In Japan, Naoki was one of the young people who type with support. (See picture above.) His Mom, Miki, coordinates the support system for her son. She is his facilitator, his personal care attendant, his friend and companion, his teacher, his speech/language/communication partner and she has had little support.

In the US, at least for the present, we have IDEA and mandatory school programs. But things are different in Japan, different in many other cultures.

This heroic Mom has had to research Facilitated Communication and everything else. There weren’t a lot of professionals in the film who were helping her. She seemed to be teaching the professionals and seemed very much alone.

As the presentation was over, and Tracy, Larry and the team were getting ready to go back to the US, the Mom gathered up her son and was getting into the elevator.

She waved, she smiled, and then… there was a moment when she choked up. I’m not sure if there was an actual tear (because my tears were filling my eyes).

There was a “look” in her eye. It said, “This meeting was wonderful. I finally found people who understand. But now it’s over. They are leaving the country and Naoki and I are back to being on our own.”

Parents know that “look”

Doug Biklen, one of the producers of the film, and I were on the TASH board together. For many years, I went to the TASH conferences and met fabulous leaders, educators, researchers and other parents who were working for people with severe handicaps. Together we were changing lives. We were doing important work and the lives of people with severe intellectual disabilities were full of hope and promise of an inclusive future where people could live, work, go to school, have families and friends in their home communities.

Each year, my friends and I would sell buttons, raise money, beg, borrow, and barter our way to spend a long weekend with these experts and advocates at the conference. We were up from dawn to late at night learning everything we could–picking the brains of anyone who would listen. It was exhilarating; we would gather ideas and hope. Then the conference would be over. We would give our farewell hugs, get into the elevator, and begin the trip back to our homes and the status quo of the lives we left behind. We had to become the warriors for our children. If we didn’t do it, no one else would.

Because of what we experienced at the conference, we were different; we had new ideas and hope. But there was no one locally to hold our hands. There was no one who would stand by us and help. There was no one who even knew what we were talking about. Almost none of the professionals who had the power to make change were helping us. When we accomplished something for our children, the “researchers” would include us in their books and scholarly papers, but mostly we were abandoned to make things happen by ourselves.

I know the look in Naoli’s Mom eyes. I have seen that look in my own eyes. I have seen the look in other parent’s eyes.

Here is a short video of Larry and Tracy at the TASH conference in Denver

Conclusion

Wretches and Jabberers is a powerful movie. Be prepared to feel strong emotions. Expect to learn new things aWretches and Jabberers Movie will be shown in another 100 cities around the US. Get a ticket and let us know what you think.

Keep Climbing: Onward and Upward.
All my best,
Mary

Due to Popular Demand, Wretches and Jabberers will be seen in 100 cities:

May 12th, 2011 at 7:30PM

The first cities have been announced in our “100 Cities. One Night For Autism.” Event being held on May 12th, 2011 at 7:30pm! Be sure to check out future editions of our newsletter for specific theaters and additional cities! Here is the list, in no particular order:
Derry, NH – Bijou, OR – Annapolis, MD – Birmingham, AL – Fort Collins, CO – Athens, GA – Des Moines, IA – Moundsview, MN – Asheville, NC – Allentown, PA – Greensburg, PA – Columbia, SC – Nashville, TN – Knoxville, TN – West Jordan, UT – Midlothian, VA – Eau Claire, WI – Grand Rapids, MI – Columbus, IN – Lansdale, PA – Washington, DC – Chicago, IL – Memphis, TN – Oakdale, MN – Lincoln, NE – Pickerington, OH – Sheboygan, WI – New Berlin, WI – Rothschild, WI – East Brunswick, NJ – East Windsor, NJ – West Palm Beach, FL – Dedham, MA – Farmingdale, NY – Providence, RI – Huntsville, AL – Plainfield, IN – Baton Rouge, LA – Kalamazoo, MI – Louisville, KY – Ypsilanti, MI – Toledo, OH – McCandless, PA – Fairfax, VA – Bakersfield, CA – Honolulu, HI – Lafayette, LA – Whitter, CA – Laguna Niguel, CA – Sacramento, CA – Colorado Springs, CO – Durham, NC

RELATED POSTS:

I’ve spent a lifetime trying to get in touch| Wretches and Jabberers (2)

Until Eternity| Anne McDonald

I love Aaron| I hate Autism

The Right to Communicate (2)| We are the experts

What if? | Bob Williams

Remarkable Parents and Advocates who Never Give Up

Please add your thoughts in the comments:

Do movies like this make people with autism more human? Like Tracy, have you ever felt, “a wave of emotion”?

Summer Activities| A Mother’s Hope for Her Sons with and without disabilities

NOTE: This is when Tommy was 13 and Aaron 14 years old.

Is summer different for kids with and without disabilities?

This summer Tommy, my 13 year old son, …

• Went to 2 weeks of Boy Scout camp, an experience which included a hike on the Appalachian Trail.

• Had to choose between participating in baseball or soccer. In August, however, he began training for the school cross-country team.

• Was active in a neighborhood network of five boys who decided to start a Nintendo Gaming Exchange Club. His friends called him the minute he arrived home from activities, played games until supper.

* Was invited to stay overnight with a friend or cousin.

• Had a season’s pass to a nearby amusement park, and because he can use public transportation independently, spent at least one day there each week with friends.

The days of summer flew by for Tommy. He had individual activities with friends, but also family activities which included a camping vacation and travel to a National Park. His major frustrations were either the lack of time for pursuing all of his interests, or his Mom’s suggesting he do something “dumb” like reading a book or practicing his clarinet.

Tommy’s brother, Aaron, age 14.

Aaron went to two weeks of special camp this summer.

Aaron’s major summer/weekend/vacation activity is watching Tommy play baseball, play Nintendo games…and riding to drop Tommy and his friends off.

Aaron also has a pass to the amusement park, but can only go with an adult (who so far is his mother).

Aaron spends every morning saying, “bus, bus…ready, set, go.” When the school bus doesn’t come, he sometimes licks on the front window, bites his hands and puts on his coat and backpack. He can’t figure out why his routine is different.

Aaron also can’t figure out why we spend all winter telling him to keep the front door shut, and all summer telling him to keep the front door open (but that’s another story.) *smile*

Aaron was on the waiting list for a short Easter Seals sponsored program in August, the only other community recreation opportunity available to him in our county.

What’s the Difference?

As I contrast the lives of my two boys, I can’t help thinking…

• …perhaps I wouldn’t feel Aaron’s isolation and lack of contact with any friends or same-age peers if Tommy had fewer friends.

• …perhaps I wouldn’t worry about Aaron’s behaviors, physical condition, weight and stamina if he were occasionally an active participant, rather than always an observer.

• …perhaps the hours and hours of inaction would not occur if Aaron had better skills or could entertain himself.

• …perhaps our family will adjust eventually to the sadness (and stress) we feel knowing Aaron’s only opportunities come from mom, dad or brother…and realizing it may always be that way.

* …perhaps we would feel so trapped if we could get respite regularly.

* …perhaps we’ll become accustomed to wearing a key around our necks so that the door can be locked with a deadbolt every time someone goes out or comes in (otherwise Aaron will run into the street or enter neighbors’ homes).

* …perhaps we’ll resign ourselves to our community’s “special” camps and “special” recreation programs, which effectively exclude Aaron from almost everything that is typical, regular, easily available and low cost. Perhaps hope will sustain us that someday a “community support” agency professional from somewhere, anywhere, could adapt, modify and begin to open community activities for Aaron and others.

* …perhaps our prayer will be answered that some child around Aaron’s age will care enough to help him join a circle of friends. Just once, even once.

* …perhaps/…oh perhaps…some wonderful person will believe that a community is more that a group of houses, businesses and people. Agency professionals must become bridge builders in the community. Families in which a child has a disability need the same support regular families have.

Summary: Separate is inherently Unequal.

The tragedy of having a child with a disability has nothing to do with a syndrome, impairment or disease. Words such as autism, CP, and intellectual disabilities are just descriptors the same way hair color, height, race, sex and personality are descriptors. Children don’t start out life knowing they are different. The tragedy is the reaction of families, neighbors and society, which emphasize differences.

The conflict for people with disabilities and for their families comes when the community limits opportunities, segregates and restricts individuals’ choices (e.g. Handicap swim is Tuesday; 1:30-2:30 p.m. and General swim is Monday to Friday 8:00–5:00).

It doesn’t matter that the limiting of opportunities appears, to have a good rationale or charitable intentions. Segregation limits freedom, limits choices, and limits development. “Special” means segregated.

Our Olympic Moment of Inclusion

One hot July day last summer, Tommy and his friends stopped by our house to make some peanut butter and jelly sandwiches for a picnic.

Unexpectedly, one of the boys asked if Aaron wanted to come along.

Five minutes later, all the kids were laughing, talking and riding their bikes to the park. One red-haired kid named Aaron was riding on a bike in tandem.

In about one-half hour the picnic ended and they brought Aaron back; that was the highlight of Aaron’s whole summer.

That moment for Aaron was sort of like the experience of a serious ice skater. Olympic gymnast, actor, or musician who practices day after day hoping to “bring it all together” for one magic performance or “big break” It was a “victory” –a spontaneous, normalized recreation experience, without his mom! Ahhh (smile-sigh). And now…back to work. But, perhaps, just perhaps…those wonderful, typical neighborhood kids will grow up more fully with the vision for and the experi3nce of community integration and freedom. They are the next generation of soccer coaches, swim instructors, church/synagogue group and scout learners.

The change of inclusion has begun.

Related Stories: (Click on title)

On the last day of Junior High School.

Dream Plan for Aaron–14 yrs old (Part 2).

America the Beautiful: A Family Vacation Plus

Keep Climbing: Onward and Upward

“When we stop to lift one another up on the climb, we all reach a higher place.”
All my best,

Mary

Comment:

What were your summer vacations like? Would they have been different if you had a label of autism or disability? If you were a parent of a child with a disability what would you be thinking? dreaming? Are summers different for kids with and without disabilities? Can you think of anything you could do to help?

Test Questions | Segregation or Inclusion?

Friends and family members send me newspaper stories about people with disabilities. Some stories make me shout with joy and others make me want to cry and give up. Often my friends can’t figure out which ones are which.

For those of you who have been following my blog, think of this as the end of semester test–one of those little Reader’s Digest sort of quizzes.

Below are three stories followed by three sets of multiple choice questions? What do you think of these stories? Please respond in the comments.

1. It’s always sunny in Life Town: (click here) The mocked-up village square allows children with disabilities to learn the skills they need in daily life. (Sunday, April 3, 2011 By Jason Shough THE COLUMBUS DISPATCH)

a. This story about inclusion makes me shout for joy.
b. This story about segregation makes me want to cry and give up.
c. I’m not sure.

2. A prom: An enchanted evening for students with intellectual disabilities (click here) A Pennsylvania high school held a prom Thursday night for students with intellectual disabilities. The event included many elements of the traditional high-school event, including dinner, dancing, pictures and entertainment. “Many of them will not attend another prom because of some of the limitations they have,” teacher Amanda Murray said. “But they deserve it. They never have an opportunity to be together without tons of rules outside a school situation.” Pittsburgh Tribune-Review.

a. This story about inclusion makes me shout for joy.
b. This story about segregation makes me want to cry and give up.
c. I’m not sure.

3. Story Three: see the picture, Aaron and Friends, at the top of the page.

Aaron, my son with the label of autism, is at a Spring Gala dinner and dance with his neighbors.

Susan and her husband, Charles, live next door to Aaron. They belong to a church at the edge of the neighborhood.

Susan invited Aaron and Jack (Aaron’s housemate) to join her and her husband for the church spring gala. They picked him up at the house and Susan introduced Aaron to the Minister and her friends, helped him get his dinner, danced with him, took pictures, and brought him home.

Aaron’s staff person was there to help if needed, but Susan and Charles did everything they could to make sure Aaron and Jack had a terrific night.

They told me later, they really enjoyed being with the guys and thought everyone had a great time. Susan was surprised Aaron enjoyed the band and watching all the people. She hopes to take them again next year.

a. This story of inclusion makes me shout for joy.
b. This story of segregation makes me want to cry and give up.
c. I’m not sure.

——————————————————————————-
Okay, now respond in the comments. No peeking at my response:) Remember your response is based on your paradigm and not mine, diversity is allowed. This isn’t a test where you have to please the teacher. This is a discussion of important issues.

Undecided?

Check out my previous article: Teachers| Segregation or Inclusion
Consider the core question: Does each of these activities lead toward the inclusion or segregation of people with disabilities?

For a definition of inclusion check out the article: What is Inclusion? plus, pictures of Aaron and Tommy at graduation.

Still Undecided?

Check out Norm Kunc: What’s your Credo of Support? Does this activity build authentic self-esteem and skills, or does it support the charity model?

Answer to Question 1: Mock Town by Barb McKenzie

Here is a response to the first article about the mock town from Barb McKenzie, a parent leader:

After seeing the title and reading the article below from today’s Columbus Dispatch newspaper I wondered, “Can benevolence get in the way of equality and ordinary opportunities?”

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

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

Do our good intentions sometimes get in the way?

Mary’s Answer: Question 1

I agree with Barb. “Life Town” can never be a mock town. This artifical town reminds me of “safety town” for preschoolers and kindergartners to learn how to drive their bikes. Or the little pretend kitchens in kindergarten rooms. Or, Lou Brown’s famous cardboard bus that some special education teachers made for their classes in the ’70s.

There are some people who think that because a person’s IQ score says they function at a 6 year old level, doing pretend kindergarten type experiences makes sense. What the research shows people with disabilities have trouble generalizing to other environments, and because this was a one-time experience (not really a teaching experience with multiple trials and practice), and because the mock town was just that–mock.

In my mind, this whole experience does not promote inclusion in the community, instead it promotes segregation because it assumes the students need a protective environment and a “get ready” for the real world attitude. The twenty volunteers and the time, money could have been much better spent to practice “community” skills in the real community–they are high school students, they don’t need to be in a pretend environment. I’m embarrassed these teachers didn’t know any better. They should know more about authentic learning and functional curriculum.

Here is a new resource from a member of TASH if anyone is looking for best practice for people with severe disabilities.

“Systematic Instruction of Functional Skills for Students and Adults with Disabilities by Dr. Keith Storey .” This is a practical “how to” text for teachers and other service providers. The format, readability, and detailed description of instructional methodology make it a resource for instructors responsible for improving the skills of learners with disabilities.

Answer to Test Question 2: Dr. Cheryl Jorgenson

Here is a response from Dr. Cheryl Jorgenson from the University of New Hampshire:

This kind of segregation of students with disabilities should be part of our long-past history, not featured in a national news brief for educators in special education. The statement quoted by the teacher (Ms. Murray) that the students have limitations that “prevent” them from attending the regular prom is beyond the pale. Can CEC seriously be promoting or even acknowledging this practice? IDEA states that students with disabilities have the right to participate in extracurricular activities alongside their peers without disabilities.

I believe that CEC owes an apology to all students with intellectual disabilities and should make a commitment to publishing stories that promote the full membership and participation of all students with disabilities in school and community life.

Mary’s Answer: Question 2, Special Prom

I agree with Cheryl. In fact, Aaron and his friend Jenni went to his High School prom twice (with another couple who supported them). He thought it was great, though he said the black patent leather shoes hurt, the music was too loud and the tux had funny buttons.

Mary’s Answer to Question 3: Aaron at Spring Fling.

Going to the Spring Fling with the neighbors is exactly the kind of experience that builds inclusion. Let’s look at the definition of normalization and inclusion:

Is it an age-appropriate activity? YES
Will this be an activity the person would enjoy? YES
Does it take place in the real community? YES
Is there “natural proportion”? Are no more than 10% of the participants people with disabilities? YES
Will it be status-enhancing? Good for the person’s self-esteem? YES
Does the person with disabilities have the support they need? YES
Does the person with disabilities have the opportunity to blend into the normal environment and be like everyone else? YES
Is this an opportunity to meet new neighbors and establish new relationships? YES
Is there the chance of this happening again? YES

Many people think that because I do not like the “charity model” I am not Christian, or against churches or religion. In my mind, Susan, Charles and the other members of this church were practicing the Christian spirit and the best of religion.

I hope this make sense. There are many people who just cannot understand the differences between inclusion and segregation. To Aaron and our family, the differences make all the difference.

Keep Climbing: Onward and Upward:
“When we stop to lift one another up on the climb, we all reach a higher place.” Mimi Meredith

All my best,

Mary

Comments: What do you think?

Do these kinds of stories inspire you or drive you to distraction? What would you say to good, caring people who want to create segregated events? Would you participate? Is this better than just sitting in the classroom? What does inclusive or segregated events teach the community about people with disabilities?