A night of beauty

I just had the pleasure of attending the Annual Gala of the National Down Syndrome Society in New York City (February 9th, 2012 at Gotham Hall).  Throughout all of the excitement, I was lucky to be able to take some time to appreciate the beauty of the occasion- a wonderful meal, a silent auction, the tuxedos and gowns, decorations, and a breathtaking hall.  


Having too often seen people with intellectual and developmental disabilities confined to the dingy corners of society, it moved me to see Down Syndrome celebrated in such a beautiful way.  The goal of the evening was not cure, not elimination of a perceived scourge, but a means of raising funds to build up lives - lives with meaning and purpose.  Well done, NDSS.


"Beauty is truth, and truth, beauty. That is all one knows, and all one needs to know." 

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