A quiet revolution

The country heard the roar of people with disabilities in the late 1980's and early 1990's for equal access to the rights and privileges of being an American.  I remember the "Deaf President Now" movement at Gallaudet University in 1988; I even presented a "speech" (delivered in Signed English) on the movement in my sign language class about what was called "The week the World Heard Gallaudet.

The noisiest movements go even further back to the movements for equal education (I.D.E.A) and equal access to employment (Section 504) in the 1970's, with people making noise in every way they could.

I am bearing witness now to a new movement - the rising up of people with intellectual and developmental disabilities to take their place in the national consciousness.  This revolution is not marked by marches or by occupying buildings (or Wall Street), but it is happening, even if the country isn't taking much notice.

Every time a person with a developmental disability walks into a college classroom, gets an employee ID, walks down the aisle to marry the person of their choice, moves into a house or apartment, advocates for their rights, gives a speech, or writes a letter to Congress, the revolution moves forward.  Don't be fooled by the silence.  The change is more profound than you may think.

I want to live to see the time when a person with a developmental disability steps into the life of a workplace, a community, a governing board, or what have you without comment.  Except maybe from someone who didn't pay attention to the silence; when his or her eyebrows go up, I want the rest of us in the room to say, "What?".  And then, let's introduce ourselves.

Still so far to go...

Having taught special education for 21 years, I am a huge advocate of teachers.  Public school teachers work with limited resources, with little control over their working conditions, to accomplish amazing things, and most of them do it out of a sincere dedication to improving the futures of their students.  I don't think anything good comes out of demonizing teachers.

But, a story I just saw on the Today Show has deeply disturbed me.  A fourteen year old girl named Cheyenne, a student with special needs at Miami Trace Middle School in Ohio, became reluctant to go to school and reported several disturbing things about her teacher and classroom aide to her parents.  The parents tried to go through the usual channels of teacher, principal, and superintendent to find out what was going on, but when these actions were ineffectual, they had Cheyenne bring a tape recorder to school in her backpack.  While this action would usually upset me, the tapes proved conclusively that Cheyenne was being verbally harassed in her classroom by her teacher and aide about her work, her weight, her difficulty making friends, etc. .  The comments were not made in anger by a frustrated teacher (who, hopefully, later recognized the mistake and apologized), but calmly, consistently, and repeatedly.  The aide was asked to resign and the teacher suspended without pay.  The family is suing for damages.

Teachers, when you're that burned out, it's time to go.  Find something, anything, else to do to earn a paycheck.  Kids are hard, kids are frustrating, but they don't need the burden of your unhappiness.  They have enough problems of their own.  Do everyone a favor, and resign.

That's not demonizing; that's just the truth.

Playing together in New York State

The New York State Inclusive Recreation Resource Center at SUNY Cortland is offering a certification program for interested people to become Certified Inclusivity Assessors.  By attending Inclusion U! - an 8 hour training - students can learn to use an assessment tool that provides information to people with disabilities about the physical and programmatic inclusivity of recreation areas in New York State.  I attended the training on September 13th and am now certified to provide information to the website on recreation areas in NYS.  

A great idea - an army of volunteers advocating and educating about access to recreation areas in New York.  Let's play!

www.nysirrc.org 

Self-employed

I'm halfway through my first week of self-employment (writer and person-centered planning facilitator).  This is the first September in 39 years that I have not been a student or a teacher, so it's unsettling.  I'm continuing to work on my Partners in Policymaking qualification, doing scattered research, and refinishing my new home office, but I have to admit to still feeling the pull of the classroom.  Sure I will get used to it in time.

#1 good thing about working from home:  You get a chance to read the trivia questions and answers from your string cheese at your leisure.  (Today's question: How long is the memory span of a goldfish? Answer: Three seconds.  I immediately thought "Just like high school freshmen!!!!!")

Searching History

"To understand today, you must search history." - Pearl S. Buck

One of my interests is disability history, especially the history of people with intellectual and developmental disabilities. I was amazed when I read the work of Phil Ferguson (author of Abandoned to Their Fate) and learned that fewer than 10% of people with developmental disabilities ever lived in the large state institutions for the disabled. The majority lived in their home communities. The history and philosophy of the large institutions has been studied in a limited way; the lives of people in the community has hardly been studied at all.

When I think back through my own life history, I remember stories about people with developmental disabilities (family members, family friends, neighbors, etc.); I suspect everyone does. I would like to start collecting these stories, looking for themes, historical lessons, wisdom, etc.

Anyone have a story to share?

Do you have memories from your childhood of friends or family

Another promising company

This consulting company, called Specialisterne, uses the special gifts of people on the autism spectrum to do technological testing for research and development departments of large companies. It was founded by Thorkil Sonne, who has a young son with autism, to create future job opportunities and now employs about 40 people, with more consultants in the training pipeline.

Countries like Denmark are light-years ahead of the United States in their thinking about social policy. Read more about great idea that is business savvy enough to appeal in the US, too at

http://opinionator.blogs.nytimes.com/2011/06/30/putting-the-gifts-of-the-autistic-to-work

The brilliance of the obvious

Just heard about this organization, Exceptional Minds (www.exceptionalminds.org) which teaches young adults with autism spectrum disorders how to work in computer animation and graphic arts. Sometimes, the best ideas for bright futures are right in front of us.

Exceptional Minds is moving towards offering a postsecondary training program that would enable graduates to find work in the film industry.

I simply can't do the website justice; there are many samples of student films and a story about how one student contributed to the movie Judy Moody and the Not Bummer Summer (in theaters, summer 2011).

Sweet sorrow

I told my students that I will not be coming back in the fall. As excited as I am about future opportunities, my heart ached all weekend remembering the sad faces. I've been teaching in my school for sixteen years. Without knowing it, I somehow became an institution...

After a few days, the kids are starting to cheer up. We were having a quiet moment today, and one young man [D] asked, "Mrs. K., how are we going to do this without you?"

Me: "I'm sure that you can."

D: (quietly)"But what if we can't?"

[Every now and then, my guardian angel speaks for me]

Me: "D., has anyone ever dropped out of our class?"

D: "Well, yeah."

Me: "Wasn't I here, doing the same thing we've always done?"

D: "Well, yeah!"

Me: "Did they make it?"

D: "No."

Me: [quietly] "Then, it wasn't just because of me, was it?"

[Sound of thinking]

D: "No."

And the teacher teaches one last lesson...

'Hold My Hand' documents disabled student's desire to attend SOU art class | MailTribune.com

What an inspired idea to make Eliza's story into a documentary! There is no better way than in our media-driven culture to tell a story worth telling. I would love to have a copy of the finished project, if only to show people what I keep talking about.

Well done, Eliza and filmmakers.

'Hold My Hand' documents disabled student's desire to attend SOU art class | MailTribune.com

Short hiatus

On a short break while I recover from surgery... I'll be back with an update from Disability and Higher Education and Partners in Policymaking.

Little things can do so much

I just read about this organization, founded in loving memory of a young lady with Apert's Syndrome -www.beyonddifferences.org. Lili keenly felt the sting of invisibility in her middle school years. We often forget that even if a person is not being teased, being quietly excluded takes its toll on the spirit, too.

Inclusion is more than a place...it's an attitude of the mind, heart, and spirit.

Adrian, the Aspiring Actor

Can always count on Facebook for ideas for blog posts. Hope you enjoy Adrian's story as much as I did.

I have been remiss!

But, remiss with good reason... I have been taking a graduate course (Disability in Higher Education) at Syracuse University and just began Partners in Policymaking New York with an online and in person component. So, I've been busy... but good busy. I'll be back when the dust settles a bit.

Welcome ways to look at disability

I can't wait to see this documentary...

www.embraceablemovie.com

The movie begins with a poem by Gerard Manley Hopkins

Pied Beauty
Glory be to God for dappled things
For skies as couple-coloured as a brindle cow
For rose moles all in stipple upon trout that swim
Fresh fire-coal, chestnut falls, finches wings,
Landscape plotted and pieced
Fold, fallow, and plow
And all trades
Their gear, and tackle, and trim.

All things counter, original, spare, strange
Whatever is fickle, freckled, who knows how?
With swift, slow, sweet, sour, adazzle, dim,
He fathers forth Whose beauty is past change.
Praise Him.

Who ever said we were all supposed to be the same?

Hidden contributions of people with disabilities

Beverly and Wayne Black have been married for 35 years. Both of them have developmental disabilities and left state institutions to get married and live in the community. They have worked in their communities, volunteered, and now are caring for Beverly's mother who was diagnosed with Alzheimer's Disease. And they are in danger of losing the modest state funding that enables them to live independently.

By living on their own and managing their own affairs, as well as providing care for an aging parent, Wayne and Beverly are actually saving the state of Texas money. By using only a few service hours a month, they are saving Medicaid the thousands of dollars it would cost to move them all into an assisted living facility or nursing home. All three get to live with dignity, are allowed to make choices, and continue to improve their lives and the lives of those in their community.

In addition, Wayne and Beverly are working on continuing education goals; he is trying to improve his academic skills and she is working on her speech so she can continue to speak at self-advocacy conventions. I wish the people in charge of supportive funding in Texas also believed in continuing education... their math skills need some work.

http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.star-telegram.com%2F2011%2F01%2F26%2F2800538%2Ffort-worth-couple-with-disabilities.html%23ixzz1CFGXNKtV&h=7a504

An amazing event - Making the Invisible Visible

The Sprout Film Festival will celebrate its 9th year this spring at the Metropolitan Museum of Art in NYC. I had the pleasure of attending last year's festival with a good friend. The unifying theme of the films is developmental disabilities - a mix of documentaries, narratives, music videos, etc., starring or written by people with disabilities.

The year before (2009), I attended a traveling film festival in Geneva, N.Y., featuring several films. One of the films entitled "The King of Camp" had been written by and starred a cast of actors with developmental disabilities. The villain of the piece was a counselor who was condescending and micromanaging; every time he was thwarted, the audience roared its approval. At the New York showing, a frazzled and impatient staff person is outsmarted by his client with Down Syndrome. Again, the same reaction from the audience!

What a moment of revelation - clearly, this is a commonly understood complaint in this community (like wives complaining about husbands refusing to ask for directions)- but not one that I (a non-disabled person) was ever aware of! The festival is an amazing opportunity to learn, to appreciate, and to think in new ways. Check it out if you can!

A wonderful idea to enhance communities

I heard of the concept of Time Banking at an inclusion conference in the Adirondacks this summer. The basic idea is this: you perform a service for a fellow member and, for each hour you serve, you bank an hour towards a service you need.

Say you are good at home repairs, but a lousy bookkeeper. You come in to a member's house to fix leaks, build bookshelves, etc. You can use your earned time dollar to have another member help you file your income taxes. You can work for or collect services from any member of the bank.

My conference group could immediately see the possibilities for our allies with disabilities. People with disabilities have many services they can offer and could benefit from many services offered by a time bank. A core belief of time banks is that everyone's time has equal value.

Check it out at:

http://www.timebanks.org

A great story, worth re-posting

He's not heavy; he's my friend

A great story of a win-win-win situation. A little boy named Sam, who has cerebral palsy, lives with his family in a two-story house. His father used to carry him upstairs to bed every night, until his dad had heart surgery. The family reached out to a local high school for help, and a co-captain of the football team, Rudy Favard, comes to Sam's house several nights a week to carry him upstairs.
Sam and his family have help, Rudy has the appreciation and affection of Sam's family, and both young men have a new friend. Cost? Priceless.
Photo by the Boston Globe. Also check out the video on http://www.abcnews.com/

New Home

I'm hoping to create a new space with a name that's easier to remember! I'll post the link on my old blog, rationalistellipses.blogspot.com.