Susan's Blog

Friday, January 31, 2014

Wretches and Jabberers

“Dispel the darkness around us wretches. Take us for real people. Don’t sideline us.” –Tracy Thresher, “Wretches and Jabberers”

The other night I had the opportunity to bring my 24 year old autistic son Nat to a dinner with Tracy Thresher and Larry Bissonnette, the stars of the documentary “Wretches and Jabberers,” directed by Gerardine Wurzburg. The film was the kickoff movie for an event called “ReelAbilities,” a mini film festival running January 31 – February 6, under the aegis of the Boston Jewish Film Festival. ReelAbilities is dedicated to showing movies that have disability as a central aspect of the film.  I did not figure out until much later that the terms “Wretches and Jabberers” refer to two groups of people: autistics who do not communicate verbally, and non-autistics who do. To the non-autistic talkative folks, non-verbal autistics seem misfortunate and pitiable in their silence — poor wretches. But to the autistics, the talkers seem to be jabbering non-stop.

Tracy and Larry are two middle-aged autistic men who grew up unable to speak and were thought to be completely unintelligent. Being unable to speak but hearing conversation all around you can be one of the most frustrating situations a human can bear. Whether you understand others’ words or not — and I believe that Tracy and Larry did understand a great deal of what was being said by others all their lives — you know that something is going on without you. I am a very talkative person, a jabberer many might say, and yet I feel that I can relate to this stomach-knotting feeling of being left out. I remember being in first grade and learning the concept of “dozens” and not grasping it, while the rest of the class did. The teacher got more and more animated as she realized “everyone” got it, and I had a terrible pang, a fear, I guess, that I was being left behind. Psychologists tell us — and it is no stretch to believe this — that the feeling of abandonment is the most primal fear. A child will do anything to stay alive, and will cling to the most destructive people and behaviors if it will get them any attention. Attention means you exist to someone else.

It is no wonder that many people with autism develop “behaviors” that can be anti-social, disruptive, aggressive, even. Wouldn’t you, if you could not express yourself but there you were, a full human in all of your red-blooded need, being ignored, ridiculed, pushed around, babied? If even the best people in your life, who loved you, did not talk to you in a way that you could respond, how would you cope?

A wretched state, yes. But it need not be so. The American Disability Rights movement which began in the 1960′s largely under the Kennedys’ benevolent power eventually led to the ADA (Americans with Disabilites Act) and then the IDEA (Individuals with Disabilties Education Act) and suddenly the formerly institutionalized and marginalized and infantilized and ostracized disabled were let out of facilities and into public schools. In the movie, Larry says that he was put in an institution at some point in his childhood, and he wondered what he had done wrong.

Just like the segregation of the blacks in the US, integration and inclusion was met with a lot of ignorance and other mean and nasty shit, but eventually society started to relent and include, and to accommodate the disabled students. Resignation and exposure leads eventually to familiarity and comfort, and we finally got to the 1990′s where we actually had bonafide programs in public schools for people with developmental and other disabilities. Most recently, we have autism education.

Which has brought us to the 21st century, the Age of Technology in Schools, which has led to typing as a form of communication. My son Nat missed that boat but is catching up now, but slowly. He communicates through email and Facebook, but it is fairly rote conversation and not all that frequent. We have to do better by Nat.

Larry and Tracy, from the movie, learned to type when they were in their 20′s. What started out as rote, superficial communication deepened over time to deeper and natural conversations — all through communication devices like the iPad. Both men are tremendously aware of the power typing has given them. In the movie, Tracy said, “I am more than anything [that you know]. Think what it would be like to not be able to talk and have to depend on whether people think you are intelligent and then remember these brave souls in front of you today.”

Now Larry and Tracy travel the world, meeting with other self-advocates who are trying to express their thoughts through typing, and trying to educate the jabberers to stop and wait and read what is being said to them.

It is very difficult for jabberers to stop and wait for a wretch to compose and then hammer out his words with one finger. Tracy in particular seemed to enjoy typing, moving his entire arm with every letter, and ending each sentence with a double-tap on the period, a lovely flourish that said, “Now I have spoken. Your move.” It takes a long time, and during the Q & A several audience members gave up while Larry continued at some length expressing his thoughts on how art and typing work together for him. (Larry is an artist, who uses Van Gogh-like swirling thick paint and photographs and writing together on canvas. Larry’s art has been exhibited in various places: a local Vermont gallery and coffee house, the Bennington Museum’s “More Like You than Not” exhibit in April 2013, as well as in Phoenix for a fundraiser, “The Art of Autism,” in April 2013.  He also had a solo exhibit called “This was me–” old style portraits, Larry called them.) We mouth-users are going to have to get better at sitting still once the gigantic Spectrum of wretches start to demand that we listen to their typing.

At one point during the Q&A, Tracy typed,“Larry, Putting our typing out to the world is pretty powerful isn’t it?”

And Larry replied, “Pictorial representations brings you a cheeseburger. Typing, let’s you create a menu.”

•  •  •

I loved the film and spending time with Larry and Tracy. Larry talks more but it is hard to tell what he is saying. He also draws in the air with his index finger, as if he is already beginning another of his paintings. Tracy is far more silent, but his eyes take it all in and then he belts out an answer on his iPad. The best part of the evening for me was our dinner together, with several others from the Film Festival, Tracy and Larry’s caregivers Harvey and Pascal, as well as my husband Ned and Nat’s caregiver John. At the beginning of dinner, Tracy typed “Please that we are all able to meet and break bread together. Hi Nat nice to meet you.” Nat read this out loud. I wondered what he was thinking. I had told him the two men had autism like he did and that they type to talk, like he does on Facebook.

We had burritos and salad. Nat and Larry both unrolled theirs and ate the contents loose on their plates. I told Tracy, who seemed eager to talk to us (Larry was a bit more prickly about engaging directly) that Nat was beginning to type but that I did not know how to help him make the leap to his own self-generated conversation. He can type tidbits of original thought, but he often resorts to scripts because I’m sure they are easier for him to use.  Or maybe he’s afraid of saying the wrong thing. I don’t know, I wish I did.

At dinner Tracy told me that it took years for him to be this fluent, and that Nat should keep practicing. That was pretty much the only serious discussion we had. The rest of the time the guys were joking around.

Someone asked, “Where did you get your sense of humor from, Larry?”

“having autism,” Larry replied.

Then Tracy added,  “I taught Larry everything funny.”

Larry said, “Eeeh,” out loud and then typed: “kind of reverse.”

At one point Tracy talked about how he’d gone out on a date with Henna, a self-advocate redhead autistic woman from Finland, who is in the movie, too. He did not want to say much about it. “Well, you’re a gentleman,” Ned said. Gentlemen do not discuss their dates, of course. But then I told Tracy about how I had tried to help Nat set up a date with a girl from his Special Olympics team, and that she had declined.

Tracy said, “Nat, There are lots of young women that swim on Facebook.”  Nat read it out loud. He did not say anything, but maybe if he’d had his iPad, he would have. I’d like to see Nat set free the way Tracy and Larry have been by typing. I’m willing — eager, actually — to wait to hear what he’s got to say. I hope that by the time he says it, the world will stop jabbering so much and wait and listen.

•  •  •

 

 

 

 

2 comments

So fascinating. I watch people and wonder, sometimes sadly, what would happen if they all had one people who just really dedicated themselves to spending quality time with them, helping build on their form of communication and just being responsive. I’ve been consulting at an adult day hab and try to, in the blur that is a day, engage with one of the individuals every day. Today’s moment came early this morning, in a familiar place, the bathroom;) I was leaving and noticed a woman (she is non-verbal and has autism) come out and go to leave without washing her hands. I gently spoke to her and guided her back and went through the hand washing sequence with her, praising as we went along. She gave me the most beautiful smile and most amazing eye contact. Right before the end of the day, she came into the office I work in, pushing past someone standing by the door and walked over and looked at me with the same beautiful smile and reached for my hand and took it and guided me to the door to walk with her out to where there were some musicians playing. All with the same smile and eye contact. For the past 5 months, all I have seen her do, is walk around and around, the large inside area that contains the program. Aimlessly, until someone comes to find her. She never smiled or made any eye contact. I am absolutely going to seek her out and hope she seeks me out again and rescues me from Mass Health paper work…. These little moments make me so happy and so sad at the same time. She should have this opportunity all the time.

— added by Michele on Friday, January 31, 2014 at 7:13 pm

i just finished watching Wretches and Jabberers, it is such a paradox, seeing people unable to communicate one minute then sitting down and writing fully thought out ideas with good grammar and wit, the next. I hope your son is soon able to communicate as much as he wants to. You make a good point about the fear of abandonment leading to a need for attention from others. Perhaps that’s how we develop language- from a desperate need to feel connected to others. Previously I thought it was a need that autistic babies did not share. The possibility that even as babies the need for connection is there in people with autism, but they are unable to be communicated is tragic.

Although I am not autistic, I am a pretty quiet reserved person. I have often wondered at the need people seem to feel for constant communication. Like an audience before a movie or a class before a lecture, there is always the hub-bub of constant communication. While waiting to sit an exam a while ago I looked around at the people in the foyer, ‘jabbering’ away. They were arranged in small groups, but sprinkled throughout were the solitary ones, completely silent, those without anyone to talk to, or nothing to say. I wondered what it would be like if all the people were like us silent ones. A bit spooky i think. I had to wait outside in the end as I have tinnitus and the murmuring was getting to me.

— added by tony on Wednesday, May 14, 2014 at 4:14 am