Goodbye and hello

This is Walt Katovitch, my father in law (the shadow in the foreground is my husband), who died this week at the age of 88. He ailed very little until the last six months, when both his physical and cognitive health took a sharp decline. We were tremendously grateful for the help of assisted living and caring friends nearby, as we are on different ends of the same coast and couldn't see to his day to day needs.

I don't think Walt ever hesitated to enter a conversation with anyone; he was the kind of guy who could have chatted up the Queen and the man polishing the Royal silver with the same ease. We'll miss him.

As the new year begins, I'm going to begin some new adventures on my quest to learn more about how to ally with people with developmental disabilities. I'll be taking Disability and Higher Education with Dr. Wendy Harbour at Syracuse University and I've been selected to participate in Partners in Policymaking (www.partnersinpolicymaking.com), a national training program in leadership and advocacy open to people with developmental disabilities, their families, and allies. I'll keep you posted.

Enjoy the fun and refreshment of the New Year.

And who could have predicted...

Looking at the rough surroundings, who would have thought that a seed could sprout here? And not only sprout, but grow leaves? Now, is it the same size it would have been in more fruitful soil, with less wind, in better company? No. But there is growth nevertheless.

When reading and writing about education, I hear much talk about "benefit"- what is the benefit versus the risk of this decision, which students will benefit from a program for the gifted, what was the student's score on the ability to benefit test?

I believe that we cannot judge benefit in advance; benefit can only be judged after action has been taken.

I recently read a study discussing the benefits of an Ivy League education on different groups of students. The group with the greatest benefit? Students from socio-economically disadvantaged families. The students who came in with the fewest advantages got the most from the experience? Go figure.

Why, then, are there questions about the benefit students with developmental disabilities may gain from postsecondary education? These students have so much to gain. What good could they bring to the world if they are allowed to bloom?

You may say I'm a dreamer, but I'm not the only one.

Man's Search for Meaning by Victor Frankl is one of my favorite works, because of his insights on the meaning of life. His search was severely tested in the brutality of Nazi concentration camps and the murder of his parents and young wife. In these desperate and barbaric circumstances, he maintained his sanity and the sanity of many fellow prisoners by emphasizing that life had meaning and the individual had control, even just of his own attitude towards the presence of suffering.

Much later, he spoke to a group of young activists (see clip below) on the necessity of idealism if we are ever to reach or to help others reach full potential. He saw more danger in underestimating people than in overestimating. What a great soul; his lessons never get old.

This post is for Eliza and other people who are pursuing their dreams.

Viktor Frankl: Why to believe in others Video on TED.com

Eliza's University Experience: Letter of Support from Diana M. Katovitch, M.S. au...

A discouraging story and a sign of how much further we have to go... the ARC of the United States also published this story in their blog.

I felt compelled to write, both to the university and to Eliza and her parents, to let them know that postsecondary education for students with developmental disabilities is already here. It reminds me of the old stagecoach story...

A stagecoach becomes stuck on a muddy hill while traveling through the frontier. The driver says to the passengers,
"All you who're goin' with us, get out and push. All those who ain't, get out of the way!"

Are we going or getting out of the way?


Eliza's University Experience: Letter of Support from Diana M. Katovitch, M.S. au...

Voltaire speaks and I listen

"The perfect is the enemy of the good." ~ Voltaire


The exact translation of this quote is in dispute; in the original French, it was "Le mieux est l'ennemi du bien," which can also translate to "The best is the enemy of the good." I have read some comments about its meaning as a call to arms against mediocrity - which I heartily endorse - but I have found the first translation to be more helpful and more meaningful in my work and in my life.

I read the quote originally in a short article on environmentalism. The author, Laurie David, wrote that the goal of being perfectly green kept untold numbers of people from trying any environmental preservation efforts at all. Since they were unable to give up their homes in the suburbs and the cars they needed to get around, people assumed that their small efforts to bring reusable bags to the store or to hang laundry on the line would be useless. Never mind that the collective small efforts of many people can make a big difference. Never mind that it is good for everyone to feel and take some responsibility to make the world a better place. It is not perfect, but it is good.

In striving to create inclusive communities, I believe that perfection is the enemy, particularly if we are so busy worrying about "getting it right" that we don't make efforts to get it going at all. An example from my work this week - it is the beginning of winter sports season and several of my students and former students tried out for sports teams. Only one young man made the team he tried out for, because there were eight slots on the team and he was one of eight players that tried out. The other two did not, because there were more capable players than there were places on the team.



In a perfect world, everyone who tried out and wanted to play could play. In a perfect world, everyone would have a real role on the team. But this isn't a perfect world- as a matter of fact, it's high school...

Perfect? No. Good? I think so.

My students, the coaches, and I felt that the boys deserved a chance to try out like everyone else. If they made the teams fair and square, good. If they didn't make the team, the same happened to many of their peers. Maybe they will choose to work as managers on the team, maybe they will try again next year, or maybe not. What is important is that they had the same chance as anyone else to join in high school sports.

And I can tell you, this attitude would not have existed 20 years ago. Even allowing a try-out would have been unthinkable. We all would have been afraid that the kids would have been injured or terribly discouraged by not making the team. We would have been caught in the trap of perfection, too afraid to try for good, because good might not have been good enough.

The coaches were worried - they are sensitive to the feelings of their potential players. I assured them that giving the kids the chance was good enough. The chance to manage the team? Even better. It's up to the kids what good they wish to make of this; they need to decide what is good for them.

We didn't have 2.4 children - but the families we have, with all their flaws, are very good.

We didn't get the corner office - but the job has a lot of good in it.

We didn't get into the best college - but our college was good, in spite of (because of?) its faults.

Our lives aren't perfect, but they are deeply good.

When we are over-focused on perfection, we miss the good that surrounds us.

Perfect is only the surface; good goes all the way down.

Also by Voltaire...
Aime la vérité, mais pardonne à l'erreur.
Love truth, but pardon error.

Sometimes, good is better than we give it credit for...

Planning or hoping?

Unusual picture, this, from an unusual source. My husband has the world's greenest thumb and grows an extensive vegetable garden. However, he hasn't planted squash in years; this abundant crop came from our compost pile. We toss our vegetable waste in the pile and often wind up with gourds, pumpkins, and this (quite tasty, actually) bumper crop of squash. While we are tending the rest of the garden, the squash was growing untended and unnoticed.

Sometimes we get lovely moments of serendipity like this. But other times, we wind up with a bunch of boring gourds that aren't even worth placing on the Thanksgiving table because they are so commonplace. I'm open to sheer luck, but I'm a believer in planning.

This month's edition of Teaching Exceptional Children was all about futures planning for students with special needs, including an article entitled "I Can" and "I did"- Self Advocacy for Young Students with Developmental Disabilities (Kleinert, Harrison, Fisher, and Kleinert). The article describes the work of the Kentucky Youth Advocacy Project (http://www.kyap.org/). KYAP teaches children, young people, and professionals how to set and work towards self-selected goals. The year-long project culminates in a celebration of the students' efforts, where they present their progress and success to the group.

In spite of remaining troubles, I believe we have done very, very well accommodating and teaching students with special needs. But one area in which we are lacking is teaching them how to teach themselves - how to plan and persevere, not just to hope for the good luck that someone will be there to help them.

Sometimes, the compost pile is full of great vegetables. But I'll bet on the bounty of a planned garden any day...

This seems to be a wall

Somehow, I got musing on the idea of walls - those apparently insurmountable obstacles that keep us from getting to where we want to go (My husband, son, and I learned that not even a GPS system in a rental car can get you through a wall to a gated community, but that is a story for another day...)

Then, my mind turned to the idea, "Well, if the wall is there and I need to get past it, how many ways can I think of to do so?" Here's a partial list

• Build a ladder


• Build a staircase


• Raise money to install an elevator


• Dig under it


• Keep walking until you find a way around it


• Gather a group of friends and make a human pyramid to climb it


• Then, toss down a rope for others to climb up, too


• All of you learn how to rock climb! (We don't need no stinkin' ropes!)


• Use a sledgehammer and try to break it. Again, you'll need some friends


• Divert a river to flood the area in front of it and ride over it on a giant inner tube


• Build a hot air balloon and float over it


• Train a bunch of birds to lift you in a harness over the wall.


• Keep the wall, but paint a mural on it


• Turn around and walk away from the wall. Find another place to go.


• Sit there and blame the wall for wrecking your life


• Make peace with the wall

And that's just from a few minutes of creative musing. What walls are in front of us? How are we going to get around them, if we choose to do so?

An idea whose time has come...

Below is a link to a speech by Aimee Mullins, given at the TED (Technology, Entertainment, Design) Conference. Ms. Mullins, who is an athlete, actress, model, and speaker, discusses the hidden meanings of the term disability and how these meanings can impact the lives of people living with the experience of disability. She shares many of our beliefs that disability is a real, but limited construct and should not be anyone's primary definition. She says it all far better than I ever could; hence the link below.

I love the concept of the TED Foundation (its mission statement is below). How else can we share the many new ideas about disability issues?


The goal of the foundation is to foster the spread of great ideas. It aims to provide a platform for the world's smartest thinkers, greatest visionaries and most-inspiring teachers, so that millions of people can gain a better understanding of the biggest issues faced by the world, and a desire to help create a better future. Core to this goal is a belief that there is no greater force for changing the world than a powerful idea. Consider:
An idea can be created out of nothing except an inspired imagination.
An idea weighs nothing.
It can be transferred across the world at the speed of light for virtually zero cost.
And yet an idea, when received by a prepared mind, can have extraordinary impact.
It can reshape that mind's view of the world.
It can dramatically alter the behavior of the mind's owner.
It can cause the mind to pass on the idea to others.

Aimee Mullins: The opportunity of adversity Video on TED.com

Springing Up

"I believe in human beings, but my faith is without sentimentality. I know that in environments of uncertainty, hunger, and fear, a human being is dwarfed and shaped without being aware of it, just like a plant struggling under a stone does not know its own condition. Only when the stone is removed can it spring up freely into the light. But the power to spring up is inherent and only death puts an end to it. "- Pearl S. Buck

I took this picture during a hike today. This tree is literally hanging on by a single root, but somehow it's enough for the tree to continue to grow leaves and live, in spite of the harsh wind and the cold of central New York.

Life is a process of casting off stones, the ones we see and feel, and the ones we don't even know are there. But life still exists under the stone; as long as there is one root, there is still life and the possibility of growth.

Take a stone inventory- what is holding us down? What are our uncertainties? What are our fears? But most important - what are our hungers? What do we hunger to do in our lives? What do we hunger for in the lives of those we love and support?

Enviable... and ordinary.

Those who are lucky enough to have HBO, be sure to tune in on Wednesday, October 14, 2010 for the premiere of the documentary Monica & David (pictured at the left, where their film won Best Documentary at the TriBeca Film Festival). The film tells the story of the couple's wedding and their first year of marriage - the beautiful (the scene in the trailer where Monica says her vows moved me deeply), the boring (doing chores), and most of all, the extremely ordinary nature of their lives.
Why is it so hard for us as a country to accept that when people love each other, they should marry and live together? Intimate relationships are our most natural supports; we should be encouraging everyone who is prepared to commit to another person, through the beautiful, the boring, and the extremely ordinary parts of life, to do so.
Remember every wedding you have ever attended - didn't the officiant ask all the guests to do what they could to help support the new couple? And didn't we promise to do so? I have- as my dear friends and family have helped my husband and me in our marriage.
Good luck to Monica and David... and to every other couple brave enough to take the leap.

Enviable Lives- Jessica Park

Someday, treat yourself to the privilege of reading The Siege: The First Eight Years of an Autistic Child and Nirvana: A Daughter's Life with Autism by the late Clara Claiborn Park. Her daughter, Jessy, is pictured above in a photo from the Boston Globe. Ms. Park is an accomplished painter who is represented by Pure Vision Arts. She is also a long-time employee of Williams College, and the mail room of the college has recently been re-named in her honor.

Jessica was diagnosed when autism was virtually unheard of; she was fortunate to have been born into an educated, intelligent, and determined family. Even with the loss of her most vocal advocate - her mother- Jessica still has a large community of support and she continues to build upon her experiences and successes. She and her family have created a life that anyone would envy.

A photograph and a thought on current events

A current photo of Donald Triplett, age 77, the first child officially diagnosed with autism by Leo Kanner. Mr. Triplett lives independently in his own home, drives a car, is a retired bank teller, and is an avid golfer.

Had Donald grown up in Pennsylvania, he might have spent the majority of his life (as 10,500 other people with developmental disabilities did) at the Pennhurst State School. Parts of the Pennhurst story can be found here: http://preservepennhurst.com/default.aspx?pg=167

I have tried to read first person accounts of former residents of state schools in the United States. The ones I have found have been gripping and horrifying... and mostly written by persons who were incarcerated "improperly" because they did not have intellectual disabilities.

For some reason, the media always makes great noise about the fact that these authors "should never have been institutionalized in the first place." Should anyone have been incarcerated in state schools for life, regardless of disability?

A haunted asylum has just opened at the Pennhurst State School campus, amidst the protest of the disability rights community. According to the video, it's pretty scary. None of us should ever have gone to Pennhurst; no one should go now.

Autism’s First Child - Magazine - The Atlantic

Autism’s First Child - Magazine - The Atlantic

In case I have not mastered the fine art of uploading video to the blog, here is a link to the article on Donald Triplett.

The place we are all searching for...

"The place God calls you to is the place where your deep gladness and the world's great hunger meet." ~ Frederick Buechner

My students started their first project today - a project about their own personal passions. They will be collaborating to make a bulletin board, illustrating and explaining their passions. It is a diverse group of interests this year - machines, motocross racing, video games, animals, sound engineering, etc. We'll be returning to this theme over and over again - what do you know ? What do you love? What do you have to offer the world?

We forget to ask young people with disabilities, "What are your gifts? What are you bringing to the table?" Bring it... the world needs it.

UCM's THRIVE program first of its kind in Missouri - News

UCM's THRIVE program first of its kind in Missouri - News

Opening thoughts for the 2010-2011 school year...

Life is too short to be mean... and life is too short to be dishonest. How to balance the two? This, I think, is the beginning of wisdom...

Lights, camera, action...

Last spring, I attended the Sprout Film Festival at the Metropolitan Museum of Art in Manhattan with a good friend. The festival features films starring individuals with developmental disabilities (in some cases, the actors also write the screenplays and participate in production). I loved it. Find a list of films here at www.GoSprout.org. They also have a commercial site where you can buy or rent films (www.Sproutflix.org). The quality of the acting and production is very high and many of the stories are startling in their honesty.

The Performing Arts Studio West is a professional group that trains and represents actors with disabilities, so that they can portray characters with disabilities on TV and in film. The documentary "Acting Normal" (see the GoSprout site for more information) is about the group's efforts to make sure that trained actors are available and cast for roles where they can give the best representation for the story.

Life in the most unpromising places

These trees are growing on a boulder on the trail to Castle Rock in Blue Mountain Lake, NY. Could there be a less promising place for trees to grow?

It must have taken years for the soil to form - the gathering and breaking down of leaves and needles, moss growing and breaking down the rock into a usable form so that the seeds of the trees could take root. Now, it is a small forest.

There is a lesson here - when we get frustrated with our slow progress towards real community, remember that anything worthwhile takes time.

LifeMyWay

LifeMyWay

Here are a couple of great stories - one about a couple who advocated for themselves while living in a nursing home. They eventually married and are living in their own home with support. The other story is about Cornerstone Services, apparently a very person-centered thinking organization.

Check this site often - they have great stories.

LifeMyWay

LifeMyWay

Minnowbrook musings, part 2

Over the three day workshop at Minnowbrook Conference Center in Blue Mountain Lake, we spent a lot of time talking about community and the building of communities that work for everyone. While talking about goal-setting, I was greatly relieved that my least favorite goal was not put forth for consideration.

"I just want my child to be HAPPY!!!!"

I am not a Grinch, but I am a rationalist. Happiness, by itself, is not a goal; happiness is a result (hopefully) of meeting other goals.

If happiness is a goal by itself, then how do we know when the goal has been met? When a person is 100% happy, 100% of the time? (I have met people who really do have this criteria for their loved one with a developmental disability) If not, what is an acceptable level of unhappiness - 10 minutes a day, one day out of five, etc.?

I am happy, but not because my life has been one long day at the park. I love my family, but every family has struggles, bad moods, tension, and illness to cope with. I love my work, but state regulations are a daily trial. I have strong faith, but have experienced times of doubt and darkness.

But I do not feel for one minute that the hard times have not been worth it - even when the hard times linger (longer than any criteria I might have set in a plan ahead of time) All of these things have terrific meaning to me; I love them. My happiness comes from on-going connection to the things in my life that matter to me.

Something else that matters to me is music; I can usually find a song to match a mood or an idea. This song is from the musical comedy You're a Good Man, Charlie Brown, written by Clark Gesner. My comments about lives that matter are in parentheses.

Happiness is finding a pencil
Pizza with sausage
Telling the time (opportunities for little surprises and choices)

Happiness is learning to whistle
Tying your shoe for the very first time (continuing to learn)

Happiness is playing the drum in your own school band
And happiness is walking hand in hand (connections and reciprocity)

Happiness is two kind of ice cream
Knowing a secret
Climbing a tree
Happiness is five different crayons
Catching a firefly
Setting him free (having choices)

Happiness is being alone every now and then
And happiness is coming home again (isn't this what we all want and need?)

Happiness is morning and evening
Day time and night time, too
For happiness is anyone and anything at all
That's loved by you.

Happiness is having a sister
Sharing a sandwich
Getting along.

Happiness is singing together when day is through
And happiness is those who sing with you (being part of something larger than yourself)
Happiness is morning and evening
Day time and night time, too.

For happiness is anyone and anything at all
That's loved by you.

Community of the like-minded...

I just returned from the 2010 Summer Inclusion Institute sponsored by the Adirondack ARC. What a huge relief to talk with a group of like-minded people about how to build authentic lives not for, but with people with intellectual and developmental disabilities.

More pictures, insights, etc. to come later.

Wonderful story here about a young man who started his own dream business (a food cart) under the guidance of a community mentor. Thanks to the Williams Syndrome Association for this video.

WCSH6.com Portland, ME Video

Somewhere, there has to be a book about this...

In November of 2006, I read a New York Times article entitled, "Just an Ordinary Girl" about a young woman with Down Syndrome who was attending college in Massachusetts. The article went on to detail other post-secondary education initiatives for students with intellectual and developmental disabilities. I searched the internet for about six weeks, before coming to the conclusion that there were no books on the subject.

I have since written one, published by Woodbine House Publishing in November 2009, titled The Power to Spring Up: Postsecondary Education Options for Students with Significant Disabilities. Other books have since become available, including Think College by Meg Grigal and Deborah Hart.

Young adults with developmental and intellectual disabilities need as many (if not more) opportunities to expand their worlds. College expanded many of our worlds - what a great place to start making the world a bigger place for all students who are ready to learn.

There's a story about that...

As promised, here is the story behind the unusual title of the blog. I have been called an "outside of the box" thinker; special educators often are. When the neat boxes that apply to typical learners were handed out, I guess I had stepped out of the line (my family believes that I was in the bathroom). The working title of the blog was "What box?", but some clever soul had already claimed that one.

I attended conference recently on postsecondary education for students with intellectual and developmental disabilities. The great Cate Weir of www.thinkcollege.net gave the opening presentation on person-centered planning. She shared the following stanza from the poem Six Significant Landscapes by Wallace Stevens:

Rationalists, wearing square hats
Think in square rooms
Looking at the floor
Looking at the ceiling
They confine themselves
To right-angled triangles.
If they tried rhomboids,
cones, waving lines, ellipses --
As, for example, the ellipse
of the half moon
Rationalists would wear sombreros.

By far, this is the best description I have ever heard about outside the box thinking. My goal with this work is to find stories about adults with disabilities (especially intellectual and developmental disabilities) who are living meaningful lives and to study how they do it. I'm not looking for inspirational or overcoming stories, but stories about real lives. What's to overcome, anyway? There is room in the world for people of all abilities and I'm not sure we can figure out how to continue making the world better if we don't have good examples.

As for the use of ellipses, I use them frequently in speaking and writing, because stories about real people are in constant evolution. You can't put a period on a sentence until a thought is complete. My thinking is never complete... just ask my husband.

Twenty years... what a long, strange trip so far.

I'm beginning this venture in honor of the 20th anniversary of the signing of the Americans with Disabilities Act (July 26, 1990). I began my career teaching full time in special education in September of 1990, so I have had an orchestra-level seat to the changes that have taken place since that day.

"The journey of a thousand miles begins with a single step." ~ Confucius