photo credit: HikingArtist.com
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…
They…
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
or feelings
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,
and confidence,
we will march into the future,
becauseWE 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,
Mary
Related Posts:
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.
When referring to “experts,” I believe the best experts out there are the parents. The ones who see their children progress and achieve skills the so-called experts said were impossible. Parents, and sometimes teachers, are able to see the full potential of kids, aside from their disabilities or restrictions. Technology continues to advance in the world and hopefully experts will be able to recognize the full potential of adults and kids with disabilities and no longer isolate them but put them on a pedestal and show of their potential to improve, achieve, and succeed!
You’re right Nicole. When a person doesn’t use the traditional words to communicate, it is usually the parents or someone who loves the person who can interpret the non-verbal signals (including behaviors). It is an awesome responsibility to try and help the person say what they want to say.
I think that as technology progresses hope will as well. Already we have seen voices given to many who could not communicate simply through the addition of technology. Not only will new technology help them to communicate, but also help the “experts” to understand why. And understanding is a step towards the future.
The technology is awesome. I wish we had time to show the amazing movie about augmented communication Wretches and Jabberers. It just touches our souls with the possibilities. Thanks Onnie. M.
Yeah not mincing words is one of the things my dear mother taught me. As she put”I call em as I see em.” I suspect that is what those I worked with liked too. I know I appreciated the fact that (to borrow another of my mother favorite expressions)”What you see is what you get. Sure beats the pycho-bable head games that most people consider “mature behaviour”.
Thanks for the compliment Mary My mom would be very pleased that I was being myself and not pretending to be someone else.
Peace.
Thanks for the suggestions Mary. I can’t help but wonder about those with various disabilities in Japan. I can all too easily envision the emotions streaming off the people around them. the lack of a place to live and all that they know no longer being there. Not to mention the very scary experiences that they must have had just like their normal peers.
Something to ponder as we in the states deal with the money grabbing politicians that claim to serve the people.
Have a great day Mary.
Gary, you are so funny. You never mince words. We always know exactly what you are thinking.
Hi Mary. I’m not quite sure what part of my ranting was interesting. That info might help to to perceive how what I say and write effects others for the better.
Your right of course I was part of a pioneering generation. I often forget that part. However I know that at least a couple of the officials I and my mother dealt with were goons. I’m also sure that they had followers and hopefully some critics too boot.
I am now in the process of trying to find and hopefully reconnect with Maria and perhaps some of the others. I did find out that Richard passed away from pneumonia a few month before mom did. I have been told it was a brutel way for him to go. He apparently wasted away from a giant mountain of a man into such a wretched state that I was told his funeral was closed casket for this very reason.
I have found out that one and perhaps only adult day program for folks like Maria does not have a volunteer option due to Insurance issues. I’m am concerned that all these finincial messes will most likely at some point not only eliminate community involvement and participation but completely close the only place these folks have to spend their days. They wonder why they have behavior problems. I do too and its the simple frustration of just being who you are.
As always thanks for the quick and helpful reply.
good luck in your search Gary. Sorry to hear about Richard.
If you go to whatever agency is in charge, the county case coordinator might help you hook up. They are always looking for volunteers. Also, I would check out the Association for the Blind. You might be able to mentor a younger person.
Even if you just call the person on the phone, there are many lonely people who just like to hear a friendly voice of a person who cares.
Hi I’m back. I took a little time away in Santa Cruz, CA. Actually the time I was there I didn’t have internet access for my laptop. I could read the web on my cellphone but I didn’t feel like writing on it that much.
Know for your post and poem. I think the experts including many schools officials still like to have power and lets face it our society at large tells them that is just okay.
I mean really what do you want them to do suddenly become telepathic and actually perceive the harm they cause with their ego trips. Or to feel the emotions directly through their hearts interaction with the other person’s EM field.
Here is something to ponder. Physicist say we live in a holographic universe. That is a piece is part of everything and at the same carries everything within it in miniature. So they who hurt others hurt themselves.
I really feel like the experts @#$@ me up in school so I am not inclined to completely trust them. But we also need learned people to help us learn more as we need.
Well I’ll stop babbling like some useless piece of junk.
OH, I genuinely think that it is possible for these sentient beings(living souls) to be more connected but it takes the rest of the village to allow and to give space for this to happen on a more than sporadic basis.
P.S. I don’t have a clue as to how I’m going to celebrate autism awareness month but whatever I end up doing I’m going to thinking of Maria and the others with autism that I encountered in Bruce’s Garver’s class.
HI Gary,
You always have an interesting perspective. I know it has been difficult to deal with your mom’s death. It’s good you are taking some time to get away.
There are a lot of things that happen in the schools. Some bad, much good. Some intentional, some not. You were part of the first generation that had the right to go to public schools. I’m sure there were many things everyone wishes could have been done differently.
I wonder if you could find out what happened to Maria and the other students you helped? I’m sure they would really enjoy seeing you again. You were an important part of their circle of friends.
I think it varies tremendously from ‘expert’ to ‘expert’ how willing they are to be partners or how paternalistic they choose to be. The onus has to be on the individual to seek out the kind of expert they are wanting to work with. Some people want to be told what to do even if that means limited opportunities, others want to influence the way forward.
Great points. We are all different. We all need different kinds of “expert” support and help.
I think people with autism and other disabilities are being to have more of a voice in society, but I believe the experts still need to be more humbling and leave room for those who were silenced by the “experts” findings to speak and have their experiences be heard. Experts can’t make changes in their findings if they don’t let those who are affected by their statements share their stories.
Thanks for your comment Ashley. I agree. There needs to be a respectful partnership between the people with autism and the people who claim to be experts. It’s all about the personal stories and each of us is different. There are many people who did things the experts told them was not possible.
Love your poem, Mary!
Thanks Becke. I revised it a little from the original. I hope some of the emotion comes through.
Facilitated Communication helped me learned so much about my basic assumptions of science, education, stigma, and all the possibilities for Aaron. It was a “keystone” idea in my life.