Naoki and his Mom in Japan

Mom and her son in Japan

I’ve been getting questions about Facilitated Communication. In the book Far From the Tree, the author Andrew Solomon interviews Ben Lehr who uses FC. Sue Lehr, of course, is one of the pioneers who works at Syracuse University and is a role model to us all. So, here is a review of the movie “Wretches and Jabberers” which features two men who use FC.

Wretches and Jabberers Review| A Jab to the Heart

Last Saturday, Aaron and I went to see Wretches and Jabberers. The director of Aaron’s new day program at Goodwill/Easter Seals, Miss P., went with us.

The movie raised so many emotions, lessons, buried feelings and experiences I literally couldn’t write or even talk about the movie for a couple days. The movie was a Jab to my heart and my memories. Here are a few of my thoughts:

Past Experiences with FC

In 1993 wrote about our story in First Hand: Personal Accounts of Breakthroughs in Facilitated Communicating (FC) edited by Anne Donnellan and recently (2011) in Real People, Regular Lives: Autism, Communication and Quality of Life by Sally Young. That is a very long story full of joy, sorrow, despair, hope and many shattered dreams.

Current Experiences with FC

The good news is when we got home from the movie, I sat with Aaron at the computer and for the first time in probably 10 years he typed with FC (Facilitated Communication).

“I OK” “Hi Mom” –just a couple letters–but it was a start.

Even better news is Miss P. said she would invite the technology people at Easter Seals to work with Aaron and see what kind of communication system we can set up.

Because Miss P. cared enough to give up her Saturday and go with us to Wretches and Jabberers, we have a common framework to begin our time together. There is no value I can put on this. It is priceless and HOPEFUL with a capital H.

Wretches and Jabberers Movie Review

There are two moments from the movie that are keeping me up at night.

1. Tracy is advocating in the Senator’s office about his concerns that budget cuts will mean he will remain homeless and reduce his support services. He feels a “tidal wave of emotions.”

2. At the end of the visit in Japan, Miki and Naoki Higashida say goodbye to the group and get into the elevator.

Tracy the Advocate

Most self-advocates, parents and professionals can understand Tracy’s wild emotions when talking about not getting the services he needs and his fears of getting the critical support system of his facilitator and support staff cut.

Unfortunately, the US Congress announced it is cutting Medicaid by 20%–yep, rather than tax the rich they are going to cut the programs for people with disabilities, the poor and the elderly–people like Larry, Tracy and Aaron. The Arc sent this alert (click here).

The nightmares and angst Tracy felt is the same that makes me wring my hands, stay awake at night…. I join Tracy in jumping up and down in frustration.

Tracy’s chance of getting enough funding so he won’t have to be homeless is worse now than when the movie was filmed. God Bless Us All as we face these life/death cutbacks.

Miki and Naoki Get on Elevator

In Japan, Naoki was one of the young people who type with support. (See picture above.) His Mom, Miki, coordinates the support system for her son. She is his facilitator, his personal care attendant, his friend and companion, his teacher, his speech/language/communication partner and she has had little support.

In the US, at least for the present, we have IDEA and mandatory school programs. But things are different in Japan, different in many other cultures.

This heroic Mom has had to research Facilitated Communication and everything else. There weren’t a lot of professionals in the film who were helping her. She seemed to be teaching the professionals and seemed very much alone.

As the presentation was over, and Tracy, Larry and the team were getting ready to go back to the US, the Mom gathered up her son and was getting into the elevator.

She waved, she smiled, and then… there was a moment when she choked up. I’m not sure if there was an actual tear (because my tears were filling my eyes).

There was a “look” in her eye. It said, “This meeting was wonderful. I finally found people who understand. But now it’s over. They are leaving the country and Naoki and I are back to being on our own.”

Parents know that “look”

Doug Biklen, one of the producers of the film, and I were on the TASH board together. For many years, I went to the TASH conferences and met fabulous leaders, educators, researchers and other parents who were working for people with severe handicaps. Together we were changing lives. We were doing important work and the lives of people with severe intellectual disabilities were full of hope and promise of an inclusive future where people could live, work, go to school, have families and friends in their home communities.

Each year, my friends and I would sell buttons, raise money, beg, borrow, and barter our way to spend a long weekend with these experts and advocates at the conference. We were up from dawn to late at night learning everything we could–picking the brains of anyone who would listen. It was exhilarating; we would gather ideas and hope. Then the conference would be over. We would give our farewell hugs, get into the elevator, and begin the trip back to our homes and the status quo of the lives we left behind. We had to become the warriors for our children. If we didn’t do it, no one else would.

Because of what we experienced at the conference, we were different; we had new ideas and hope. But there was no one locally to hold our hands. There was no one who would stand by us and help. There was no one who even knew what we were talking about. Almost none of the professionals who had the power to make change were helping us. When we accomplished something for our children, the “researchers” would include us in their books and scholarly papers, but mostly we were abandoned to make things happen by ourselves.

I know the look in Naoli’s Mom eyes. I have seen that look in my own eyes. I have seen the look in other parent’s eyes.

Here is a short video of Larry and Tracy at the TASH conference in Denver

Conclusion

Wretches and Jabberers is a powerful movie. Be prepared to feel strong emotions. Expect to learn new things aWretches and Jabberers Movie will be shown in another 100 cities around the US. Get a ticket and let us know what you think.

Keep Climbing: Onward and Upward.
All my best,
Mary

Due to Popular Demand, Wretches and Jabberers will be seen in 100 cities:

May 12th, 2011 at 7:30PM

The first cities have been announced in our “100 Cities. One Night For Autism.” Event being held on May 12th, 2011 at 7:30pm! Be sure to check out future editions of our newsletter for specific theaters and additional cities! Here is the list, in no particular order:
Derry, NH – Bijou, OR – Annapolis, MD – Birmingham, AL – Fort Collins, CO – Athens, GA – Des Moines, IA – Moundsview, MN – Asheville, NC – Allentown, PA – Greensburg, PA – Columbia, SC – Nashville, TN – Knoxville, TN – West Jordan, UT – Midlothian, VA – Eau Claire, WI – Grand Rapids, MI – Columbus, IN – Lansdale, PA – Washington, DC – Chicago, IL – Memphis, TN – Oakdale, MN – Lincoln, NE – Pickerington, OH – Sheboygan, WI – New Berlin, WI – Rothschild, WI – East Brunswick, NJ – East Windsor, NJ – West Palm Beach, FL – Dedham, MA – Farmingdale, NY – Providence, RI – Huntsville, AL – Plainfield, IN – Baton Rouge, LA – Kalamazoo, MI – Louisville, KY – Ypsilanti, MI – Toledo, OH – McCandless, PA – Fairfax, VA – Bakersfield, CA – Honolulu, HI – Lafayette, LA – Whitter, CA – Laguna Niguel, CA – Sacramento, CA – Colorado Springs, CO – Durham, NC

RELATED POSTS:

I’ve spent a lifetime trying to get in touch| Wretches and Jabberers (2)

Until Eternity| Anne McDonald

I love Aaron| I hate Autism

The Right to Communicate (2)| We are the experts

What if? | Bob Williams

Remarkable Parents and Advocates who Never Give Up

Please add your thoughts in the comments:

Do movies like this make people with autism more human? Like Tracy, have you ever felt, “a wave of emotion”?

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