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Watercolor/Mixed Media Painting

Title: A Conversation with Katie

Painting based on a conversation with Katie. The conversation, illustrated near the bottom of the painting, went like this.

Me: What can people do to help you reach your dreams?

Katie: You can dance.

Me: If I dance, how can that help you reach your dreams?

Katie: That tells me that I can dance, too. I can follow the moves and steps. If you’re dancing, I can feel the motions.

Me: Okay, I get you….If I dance and we all dance, then….

Katie: We dance together.

Katie is saying that when we are together we all become more. We need each other to become fully ourselves.

Dana Zohar, author of the book Quantum Society and the quote in the sky (The Dancer Needs the Dance to Become Fully Themselves), puts it this way, “Each member of an emergent relationship finds himself or herself enriched by participation in the collective.”

UNH Institute - Amanda Baggs Will Give Keynote

This just in from the University of New Hampshire Institute on Disability.

In keeping with the tradition and mission of the conference, this year’s NH Summer Institute features keynote presentations by autism rights advocates. This year’s keynote presenters include Amanda Baggs, a 26-year-old autism activist and a prolific blogger who has recently garnered national media attention for several self-produced YouTube videos and her appearance on CNN. Amanda’s most popular video, “In My Language,” documents her “constant conversation” with the world around her and has been viewed by more than 600,000 individuals. Being unable to rely on verbal speech, Amanda expresses herself independently by typing at 120 words per minute on a voice synthesis computer.

Do Schools Kill Creativity?


Just watched Sir Ken Robinson on TED. I love this guy and his message. http://www.ted.com/index.php/talks/view/id/66

Learning in Small Groups and Social Change

I’m a believer in small group learning. I especially like a learning process like action learning. Action learning enables ordinary citizens to figure out and move through tough questions rather than waiting on public agencies to set policies, rules and procedures that historically hold little chance of making substantial change. Action Learning is a learning process that invites citizens to learn together over a period of time by 1) sharing our most pressing questions, 2) taking actions on those questions, 3) reflecting on what happened and what we learned. The process of coming together in this cycle of learning opens us up to new meaning which informs our next steps.

Participants in one small learning group wrote about their experiences. This one is by Mark and Jill Sestina.

As You Wish

Even from the beginning - her life was different. She decided to pick the place of her birth – choosing the back of an ambulance a block from the house on Brownlee Avenue. Madison was not going to have any bright lights of a delivery room or the medical coverings that would hide the identity of her attendants. Our princess began her life in the presence of a “community” of regular, everyday common folk with grit. The EMT’s conquered the unusual situation with compassion and respect – understanding that each person in the world is unique and wonderful with limited potential.

Although the geographic location and personnel have changed, she is still surrounded by the same energy and determination. Our family has been blessed with the camaraderie and expertise of the Action Learning Group of Fayette County. Just another group of regular, everyday common folk with courage of lions and hearts of gold.

Our daughter was born with developmental delays. These delays concerned us so we began our quest for answers in all of the usual places. With the tremendous support of Sharon Gibbs, Missy Smith, Suzie Janasov and other people in the educational community – our trek was short and complete as one could possibly imagine. But Jill and I needed to compliment their efforts. So we searched and found several others (aka action learning) - parents of children with special needs who possess wealth of information, strength, and support for our needs as well as Madison’s. After expecting answers to all of our questions – we found questions. This unique process of asking ‘what if” sparks the imagination of all the members of the group and creates paths of possibility. We found our Action Learning Group is like the Power Rangers – mighty as individuals but AWESOME when we are connected together as one.

The first group that we were in consisted of nine females and one male – me. This situation reminds me of a scene from the movie “The Princess Bride.” I felt like the grandson in the movie sick in bed and being visited by his grandfather who was about to read him the book “The Princess Bride.”

The grandson asks, “Does it have any sports?” The grandfather replies, “Are you kidding? Fencing, fighting, torture, revenge, giants, monsters, chases, escapes, true love, miracles.” The grandson answers, “I’ll try to stay awake.”

I learned a lot during those weeks – just like the grandson did by the end of the book. The result of action learning is love and the sessions contain all of the above – full of emotion, information, knowledge, friendship and support. It has made us better persons, more willing advocates for those in need and better prepared parents for our unique and wonderful princess whose motto is, “ The sky is the limit.” I have also learned that a good dose of Action Learning is good medicine for men whose symptoms consist of selective listening, one-sided communication, and intimidation at the thought of revealing their fears and possibly having to take advice from others. We have just completed our second session and I’m looking forward to our next opportunity.

After the last meeting had ended, I flashed back to the movie with the sick lad and the story of the reading grandfather. The boy had renewed his relationship with his family and asked the grandfather to come back and read him the story again the next day. I, like the boy, want more. I muttered to my dearest friends as they left for home, “ as you wish.”

The Structure of Segregation

Think all is well in America? Think again. This morning, I read comments from parents on the kidstogether listserve about their struggles for their kids’ inclusion in school. I’ve posted some of those comments here. Reading them, I can’t help but think about the structure of segregation and marginalization in contrast to the structure of community and belonging. The structures of segregation and marginalization are held together by those in power and social tradition. Add labeling, deficit models, outdated assumptions, arrogance, ignorance, and a belief that we are all separate individuals. These structures and beliefs create a deep and entrenched systematic exclusion of students with cognitive differences.

I know the struggles these students and their parents face. My daughter and I experienced them first hand during her school years from 1985 to 1995. Back then, integration or inclusion was a relatively new idea in the framework of the history of special education. But with lots of work and tears she was included and with surprising results. As a way to understand that experience, I painted the faces of resistance in this watercolor/mixed media painting. It’s titled “The I.E.P. Meeting.”

Here are the voices of parents from the listserve. This is their art. They are expressing the personal pain of witnessing the use of institutional power to exclude and segregate their children. They are calling out for support and understanding.

We had the meeting today and I feel like they threw every stinkin’ line at me: Mental retardation; we have to think of the other kids; we cannot expect a reg. ed. teacher to teach a special ed student-it’s not their job; you just want us to give in to you; mental retardation; She does not need an education in “inclusion”; she will be best served in self contained or resource; you are not being fair to your daughter; what does it matter where she learns-reg. ed, resource, self contained; we all would like to swim everyday (I didn’t say she likes, I said she needs to); mental retardation, IQ. State testing, mental retardation; my biology teacher will not teach social skills!; there are many many parents that trust us and where we place their children…

When I came into the meeting they were talking about their perfect children and their perfect university experiences. I am not being jealous. I think my daughter is perfect too. Maybe I am being a little jealous, huh? Mostly, I am angry. Not only did they not have to fight for their kids rights, they have the power to deny my kids. So, if they do deny, then I have to spend all my extra time I don’t have researching, documenting, spending money I don’t have, and investigating while they happily go and visit their kids or get a pedicure!

HELP HELP HELP HELP HELP HELP !!!!!!!!!!!!!!!!!!!!! If there is someone who can take me under their wing and help me learn strategies for success, please help me! I have purchased books and I am studying them, but everything changes when we have meetings. It is like I am entering a different world and nobody tells me the rules. I will hush for now. Thank you so much for “listening.”

I can not do this alone. I lose myself in their arguments and leave feeling like I am wrong and they are right, what am I trying to do, all the self doubts…

Toronto Summer Institute

People who have attended the Toronto Summer Institute describe it as a life changing event. This years institute is July 12-17 at Ryerson University in Toronto, Canada. It features a remarkable cast of hosts, a global collection of learners, and a spirit of commitment to inclusion. I’m told there are a few spaces left. Early bird rates end May 31. Go to the Inclusion Network for more information.

Day to Day Spontaneous Acts that Hold Society Together

Arnold, my neighbor has been here again. How do I know? A bag of freshly picked asparagus and a half a pone of corn bread left at my back door tell me so. His act of giving these gifts reminds me of this quote by N.K. Humphrey found in Briggs and Peat’s Seven Life Lessons of Chaos:

Our greatest use of the human creative intelligence is not in art or science but in the day-to-day spontaneous acts by which we hold our society together.”

The Structure of Belonging

Weaving the Ties that Bind

Biscuits & Cornbread - Symbols of Belonging

One more thing -

Reading about the Belonging Initiative in my previous post, I couldn’t help but remember some of the ways in which neighbors connect, share, show their care. Its hard to make out in this photo but near the bottom of the image is a bag of biscuits, warm, freshly baked yeast biscuits to be exact, left inside our door one morning by our neighbor Doc Sigmund. On a different morning, we found a pone of cornbread (baked with black walnuts) from our neighbor Arnold. He grows the corn and grinds it into the white, fine meal that becomes the main ingredient of his bread.

I think this ‘giving‘ is one powerful (and delicious) way to weave the ties that bind a community or neighborhood together.

The Belonging Initiative

The Belonging Initiative is a national collaboration to nurture belonging.

The premise of this initiative is that despite our awareness of the issue of isolation and loneliness, despite the growing body of knowledge related to promoting relationships, and in spite of our respective efforts to assist people who live on the margins, we have a long way to go. Far too many people with disabilities are alone except for the persons who are paid to be with them.

The goal of The Belonging Initiative is to nurture belonging and end isolation of persons with disabilities. We are guided by a fundamental belief in the importance of human connections and the possibilities for mutual enrichment that arise through such connections. We have a passionate sense that collectively we can develop a groundswell that will lead to a society in which everyone belongs!

The Belonging Initiative is informed by our experiences with people with disabilities. Over the past year a group of friends, advocates, parents and professionals, most of whom have a connection to people with disabilities, have been exploring solutions to this persistent social challenge of isolation and loneliness.

There are innovative “solutions” across this country to the problem of isolation and loneliness. But our individual efforts have been inadequate. We believe that a national collaboration is necessary to harness our collective resources, share our expertise and bring new resources to bear. It is time for action - deliberate, bold and strategic.

Solutions employed to end the isolation facing people with disabilities will ripple outwards and improve the situation of other isolated people. The experience and knowledge accumulated in ending isolation and loneliness for persons with disabilities will be directly applicable to other groups that are marginalized, including frail elderly, youth-at-risk, refugees and new immigrants. Communities in which people are better connected are healthier, realize the contributions of all citizens, and have lower health and social services costs. In other words, when people move from isolation to community, everybody benefits.

From Philia - a Dialogue on Caring Citizenships