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)
The Right to Communicate (2)| We are the experts
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”?
Whenever I read about new technology for special education I am amazed, it has come such a far way. I love learning about new ways that people can communicate through. Recently I learned about the PECS progream, picture exchange communication and found it to be amazing. I think that we can often see mute people as a lost cause, so it’s important to find these discoveries so we can talk to others that may struggle with speaking.
So many people don’t want to believe people with autism and/or severe communication issues are smart. The Wretches and Jabberers film has been seen in every state. Many PBS stations showed it and the autism societies and parent groups have had the two men and their facilitators come to conferences and give presentations in person. Their stories are full of hope and promise.
The PECS program is working for many people. It began just as Aaron was finishing high school, so he didn’t get to use it. I think it has great promise. The problem with adults is that there are no longer any speech therapists or qualified professionals who can work with them. There is not the same level of expertise or support after graduation. I hope you or some of the other speech therapists think about working with adults–there is such a need and while we are only in school for 20 years–we live 40-50-60 years AFTER graduation.
Consider yourself pinched! I am SO happy for you and Aaron :-)))))))
Thanks Char. We have had 3 miracles already this week. I am afraid to believe it. Big day tomorrow too. The good things just keep on happening.
Hope all is well with you and your family. Want to spread all the goodness.
Wow, that’s great news, Mary! All of it. 🙂
Glad to hear he typed more and you are getting the assistance he needs. Sounds like just needed to to others doing what he learned to remind him of the days when you made it possible for him to something other then the standard learned helplessness he must have been observing in the day programs he was been in.
He is lucky to have a mom who cares enough to keep on trying even in the face of hostile forces and enemies to life itself.
Have a wonderful day.
So far, this week has been amazing. Aaron has typed a couple sentences, his new day program looks terrific, and we’re moving ahead with the residential stuff. Pinch me:)
Wow!! I’m so glad Aaron type a few words. Maybe this is part of the healing he needs.
I suspect that this film won’t even be close enough to go to. From what you have written I might like to see this one. I don’t go to movies anymore. can’t take the constant ads and the extreme violence and displays of luxury that is part of the usual brain wahing that goes on.
Oh did you really type and mean 20% cut back in Medicaid. That is scary I’m on Medicaid. It is bad enough what the Govermator did to us in CA. So they will cut us off while tey live in palacial estates, drive their luxury cars, and dine at $5,000 a a plate dinners. Frankly I hope someone drops these scum sucking @#$#@$ into the Fukushima’s reactor #3 core.
All the same have a great day.
Gary, I can always count on you not to mince words.
Aaron typed a couple more words today and I met with a technology expert to start the process to get Aaron going–so movin’ forward.
Hi Mary:
I think you are leading parallel lives to most people. I was in a movie theatre recently when they showed the trailer for the movie. The person I was with remarked dryly afterwards ‘well, *that* sounds like a feel-good movie.’ And this from an educated person and in front of my children!
They are not showing the movie anywhere near us but I hope just seeing the trailer starts to introduce my kids to the concept of differences. They don’t get that enough in their lives.
Wow! That is too cool they are showing the trailer. That’s a start.
And actually, the guy was right–IT IS A FEEL GOOD MOVIE. And what I will never understand is, “Why would anyone want to go to any other kind? Who wants a FEEL BAD MOVIE?”
Though I just wonder if ordinary folks would even get it.
Alison, I don’t worry about your kids. You are a wonderful mom who will talk to the boys and explain, but more importantly, you are ACTING and LIVING acceptance and inclusion.
I’m so glad that you and Aaron got to see it. As you said, it is full of emotion and hits one in the heart–and stays on the mind.
The film definitely makes it easy for the audience to experience the humanity of people who may communicate differently and act at times differently than is typical. One of the beautiful things about this movie is that it does not start off with extensive background information but proceeds to capture you and take you along in this buddy story of Tracy’s and Larry’s mission and travels. Along the way we get to know them as fun, serious, and deeply philosophical people who have many things to teach others. We are with them in smooth times and rough times and we quickly get to know their personalities. The unusual things they may do (odd mannerisms or reactions) make sense in context and with their comments which concisely express their thoughts at the time.
They and their friends are truly “brave souls” for humbly and with hope and good humor sharing their stories with the world. Their efforts will go far in helping people to see that we are all more like each other than not–looking to see the person inside, who has an inner life but may not be able to express it without the proper individualized supports, such as facilitated communication techniques. As someone who types told me once, just having one person know that you are “in there” and understanding what is going on is helpful and important, even if many other people do not see the real you. It reminds me of the power that one person can have in our lives.
The film brings several people who type into the view of the general public and shows that each is a thoughtful person with a rich personality, looking for a purpose in life. It also shows how their families and supporters, through their actions and reactions, help with difficult situations, naturally and with calmness, respect, good humor and understanding. All of this works to help the audience to understand that Larry, Tracy, Chammi, Naoki, Antti, and Henna–and many others around the world with autism who have little or no effective speech–are examples of “intelligence working itself out differently.”
I am thrilled to hear that Aaron typed a couple of comments with you after the film. Way to go! As the song from the soundtrack says, “Change is gonna come on my (our) watch….” It is happening now, and it will continue.
Best regards,
Judy Bailey
P.S. Thanks for mentioning First Hand: Personal Accounts of Breakthroughs in Facilitated Communication. I read it several years ago and it’s time to reread it.
Judy, you got me in the emotion again. I have just been a mess with the guilt of giving up. But Aaron refused to type with me after his friend and Speech therapist moved out of town.
I know he was in his own depression. But, now hope we’ll be able to get back on track.
Thanks for mentioning Naoki’s name. I’ll add it to the story. I couldn’t find it anywhere. I wish I could see the movie a couple more times–guess I’ll have to be a groupie and wait for it to go on sale.
It does give me comfort that you and Char understand. Thanks.
Do you know of any Forums, I swear I need therapy over this. This is when I really feel like Aaron, Tom, Tommy and I really are leading parallel lives to “normal” people.
I had seen several trailers for the movie, so should have been prepared. It’s hard to describe how much it means to see the final product being shown in theaters – to the general public, no less. I have known Tracy, Larry and Chammi since their early years with FC, and in fact they were a big part of my introduction to the idea of typing to communicate. Now here they are telling the world. Thank you so much!!!
It’s been an emotional roller coaster for me personally and for the young people I have been privileged to support in their early stages of communication. In too many cases, our efforts have been met with skepticism rather than acceptance. Maybe this wonderful film will help to turn the tide.
The tears started for me during the introduction to the movie. What a marvelous catharsis it was. Can’t wait to see it again!
I am thrilled that Aaron typed with you, Mary. Who knows what lies ahead?
Hi Char,
So the elevator scene struck you too? I bet Doug et al. have no idea how that was so powerful to parents. How could he? The editors probably just thought it was a good transition to the “leaving Japan” segment.
Aaron was the only person with autism in the theater. There MAYBE were 30-40 people there–I was disappointed. But for Cincinnati–wasn’t surprised. But it did reinforce the isolation and despair I feel. A couple million people in our area and only a handful made it to the movie??????
I almost titled this article “the roller coaster of FC” but figured only those who have been around a long time would understand. I am so proud of Doug and the people who must now feel exonerated. All Judy Deschane’s early defense arguments were highlighted: the different keyboards, the individual styles and approaches, the levels of support… I kept thinking–go Doug. Thanks Buddy–you are the TRUE PROFESSIONAL.
I am still chocked up about the whole experience.
I think if Miss P. hadn’t been there and there is now even a little hope for Aaron, I would not have been able to drive home. Few people would understand.
The FC wars cost Aaron his communication partner, and it cost me a job.
It is so good to be able to talk about this. Thanks. Mary