The Right to Communicate| We are the (new) Experts
In the early 90s, Rosemary Crossley, Annie McDonald, Doug Biklen and others shocked the world with new ideas about people with the labels of severe disabilities and autism being able to communicate. They were pioneers who opened the world for many people to be able to use their voices to change their lives.
The movie Wretches and Jabberers is traveling to 40 cities to celebrate Autism Awareness Month in April. Click here for a schedule. I hope you will see the movie and share your thoughts in the comments.
Augmented communication made all the difference for my son Aaron, who has the labels of autism and developmental disability. He was able to work with our talented speech therapist and friend, Tina Veale, and discovered new worlds. He was able to attend general education classes for the first time. He was able to get the school to provide a full time facilitator who assisted him in these classes.
Here is an adapted version of the poem I originally wrote for Anne Donnellan’s “Moving On” series of books about Facilitated Communication.
(Ulrich, Mary in First Hand: Personal Accounts of Breakthroughs in Facilitated Communicating, (Anne Donnellan, editor), Richard, J., Jackson, K., Ulrich, Mary and Aaron (1993) DRI Press: Madison, WI. 45-46.)
Wrong and Right and the Paradigm Shift
They thought the world was flat and Columbus’ ship would fall over the edge.
But they were wrong!
God told them the sun went around the earth, so they excommunicated Galileo.
But they were wrong!
They taught Jupiter had three moons and marked children’s answers in red.
They swore Agent Orange and DDT were safe.
they…evaluated and labeled our children as “not educable,” “idiots” and said we “belonged with our own kind.”
In the name of charity and protection and “Heaven’s Very Special Child” they isolated and segregated us into institutions, ICFs, special schools, special classes, Special Olympics… lives of “specialness.”
But they were wrong!
They showed us their statistics, charts and test scores which PROVED we could not communicate,
were incapable of love
and should be left alone because we wouldn’t “know the difference between a person and a rock.”
When we became “social critics” and protested with our behaviors, “for our own good” they shocked us with SIBIS or cattle prods, squirted us with vinegar, or put us in time-out … for life.
With their eternal trials of peg boards and beads, they made us prove we were “ready” for families, friends, regular classes, homes, jobs of our choice and … normal lives everyone else took for granted.
But their magic was limited to numbers and letters. And their motives–pure or sinister–fed their job security, tenure and egos.
But we knew all along, and it was these people who called themselves experts who were “not educable” and “idiots.”
Because… THESE EXPERTS WERE WRONG!
Now we only trust those professionals who repeat choruses of “Forgive us!” and
“We don’t know why, or how, but take our hands and we will learn together.”
Oh FC! Oh Skallagrigg!* Oh Judder!
We can communicate!
And with our new voices,
and new skills,
we will march into the future,
WE can love… and feel pain… and laugh… and cry… and…
We want to have families and friends and… be human.
We want to be people first and be raise our voices in making this diverse world a better place!
And, we will prevail, not because of laws or advocacy, or science but—because love has its own connection and
WE ARE IN TOUCH WITH WHAT IS RIGHT–
WE ARE THE EXPERTS!
* Horwood, W. (1987) Skallaggrig. London, UK: Penguin Books.
What do you think?
Have the people who called themselves “experts” changed and become more humble? Are they really just liked the cartoon graphic: Ph.D. (Piled Higher and Deeper)? Do people with autism and other severe disabilities now have new voices? As we get ready to celebrate Autism Awareness in April, is there new hope? Will you see Wretches and Jabberers?
Keep Climbing: Onward and Upward
All my best,
Bob Williams wrote a much better poem than I: “What if”
The Right to Communicate (1): Wretches and Jabberers is about the new movie coming to theaters in April. The dream continues.
Anne McDonald died last Oct, but she was the one who first opened our eyes to the possibilities of communication.