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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Saturday, June 24, 2006

 

My Visits with Larry Bissonnette and Jonathan Lerman

abil•i•ty
1 a : the quality or state of being able; esp : physical, mental, or legal power to perform
b : competence in doing : SKILL
2 : natural aptitude or acquired proficiency
_
©1997, 1996 Zane Publishing, Inc. All rights reserved.

It is this notion of ability versus disability that has come to mind after meeting with Larry Bissonnette and Jonathan Lerman yesterday in Burlington, Vermont and then Vestal, New York.

I entered Larry’s studio where he was waiting for me – his head cocked a little to one side, as if he was watching me and my camera crew from a better eye. I was so happy to meet him in person, finally, an admirer of his awesome insight and poetic way to describe things. After reading about a person for so long, they become a kind of celebrity – I feel so familiar in his presence, yet am a complete stranger to him. It is an invasion of sorts, being here, meeting him, looking through the hundreds of paintings so neatly organized in his studio. This is Larry’s private space, both his inner and outer worlds.

I climb the narrow stairs of a barn-like structure housing other workshops. It is hot and sticky; the air is thick with dust. As he watched me approach me, I smiled with delight – he leaned in with his forearm, and returned the smile -- his version of a handshake.

I am tentative and try to be delicate and gracious within his space. There is a cameraman with me – Larry likes to be on camera, but we are all quiet, introducing ourselves, meeting Larry’s assistants, letting the minutes determine what is to be said, and how much.

I receive some direction on how the works of art are stored and I ask permission to go through them, Larry standing near the door, drawing arcane lines with his finger through the air, almost like the conductor of an orchestra. “Baby blue door,” he says pointing to the door next to him. “Baby blue door.”

“Does that have a meaning?” I ask Pascal Crevedi-Cheng, Larry’s Facilitated Communication assistant since 1991.

“They are repetitious phrases, a breakdown in communication. They don’t have any specific meaning,” he tells me. I think about the times when my own Adam is scripting, when he puts a phrase into a space or a moment, how it can make sense and then repetitive, like he is enraptured with the sound and the melody of words.

I ask Larry “What is happening for you when you loop your language – when you say Baby Blue Door, for instance. Does it have meaning for you?”

Larry looks at me, and I can tell he acknowledges every word. “Ah!” he says and promptly begins typing, Pascal's index finger and thumb squeezing his shoulder to remind him to keep typing.

“Pale imitation of real feelings,” he writes.

At the studio, and after the introductions, I begin to feel comfortable enough to look through Larry’s work. He is watching me. I ask him if it’s okay to look here and there. Craig, the cameraman turns the camera on watching me, watching Larry, the dialogues that happen at this first meeting among the artifacts of Larry’s mind.

I pick the work for the show, we grab lunch and return to the office where the interview continues. Larry is listening to us talk while we eat, and I ask him what his favorite food is.

“Macdonald’s cheese burgers,” he says, and I chuckle. He shines a big smile and Ryley, my assistant grabs two coupons she happens to have with her for Macdonald’s burgers. Larry reaches for them with delight.

“Do you have a girlfriend?” I ask him.

Larry cowers and blushes. I joke around. “Ah!” I say. “I made you blush!”

He grins.

The laptop computer comes out, the camera is ready. Larry is using a computer program called Write Out Loud, which says the words and sentences he writes. I have not yet asked him a question and he begins to type:

“Least little force of my typing isn’t making sense. Estée ask me your awesome questions.” He is a gracious man.

I have seen many symbols in his work – houses, cars, and crosses. So I ask “What do cars mean for you?”

“Problem knowledge of goings on with interpreting images as symbols is Larry doesn’t paint ever vesting deliberate symbols. It’s all intuition.”

I leave the art. I understand intuition.

Larry is what you call classic autistic. So I ask him outright, “Do you want to be cured of your autism?”

“People who think your disability is a sickness need to be cured of their ignorant attitudes.”

I smile, he smiles, we high-five. We have a moment of understanding and his sense of humor becomes so apparent.

“What do you want people to know about you?” I ask.

“Larry loves McDonalds like people once they stop dieting and only when work that I spend my time on is seen as personally motivated and not derived from autism will I be satisfied.”

I tell him that people will be interested in his art as it is and because of his autism. I am clear and he acknowledges this. “Yes,” he says.

“What do you want parents to know about their autistic children?”

“I am in life until the total realization about the power of communication happens so parent occupied with over-coming problems of disability needs to focus on abilities that are not easily seen.”

So on the note of ability, I have to ask, “What is your greatest strength?”

“Am slacker by nature. Am the personification of practice makes perfect.”

Perfect. Indeed he is.

“You are a wonderful writer, I tell him.” He smiles. “Would you ever write a book?”

“Yes,” he says enthusiastically and begins to type, “not pictured in People magazine yet maybe publishing a book would put in on People’s reporter’s plain but cool list.”

Larry is tired. We’ve been with him for four hours, looking through work, talking on film which is being made into a video for The Autism Acceptance Project. He shakes his tired hand from typing – a long and deliberate task. And we have a plane to catch. Larry will come to Toronto in October and speak to others at the gallery on October 5th. It’s a conversation I would love to continue with this delightful, warm man.

--

We fly to Vestal, New York. It is raining again like the last time I was here. This time, Jonathan will be with Alan, his father. I haven’t seen him since last December. They greet us, Jonathan looks as excited as he did when I picked them up for the opening of his exhibition at Lonsdale, and he is almost breathless.

I bring him a book from the gallery – illustrations by an artist – a book-long comic strip. Jonathan seems to enjoy it as he reads it in the car on the way to his studio – a building attached to a church which is owned by Joe, his art-teacher/mentor who has known Jonathan since he was seven years old. It is an old musty building and we are lead to the basement where a series of studios, including a clay one, are housed. Jonathan has his own studio way around the corner of the long narrow hall, at the very end.

“I want to start a sculpture,” he declares. Joe was hoping he would draw or finish the one in front of him. Jonathan’s room and the clay studio are filled with political figures. Today, he wants to do George Bush. Again, the camera gets set up and I enter the adjacent room flipping through hundreds of Jonathan’s incredible drawings. I pick drawings from Jonathan’s various stages of interest while talking with Joe and Alan, intermittently.

“How often does Jonathan come here?” I ask Joe.

“He’s here almost every day.”

“No wonder the prolific work,” I comment.

Joe works with other students in his after-school arts program. He has been helping Jonathan for over ten years, making suggestions, exposing Jonathan to different media. I am impressed how Jonathan’s sculpture is becoming more sophisticated, and the speed at which he works. There is a head of Bin Laden sitting on the table, scatterings of other heads throughout the building.

“One day I finally got Jon to do a self-portrait in clay,” Joe says to me while I’m flipping through artwork. “He has done so many heads, and there hasn’t been a problem with any of them when they’ve been fired. But the day he does his own head, it blows up in the kiln.”

I pause. There is irony in this story, but Joe says it, not I.

“Isn’t that bizarre? Not one other head blows apart except for Jonathan’s.”

Later, I see that head as it is proudly sitting on the window ledge of his basement studio. It is not blown apart as much as it is fractured. The outer skull on the left side has fallen off but sits askew next to the remaining head. The inner clay is still round and clean, like looking through the skull to the brain-intact. It reminds me of not so much an incomplete or fractured brain as much as an invasion of one – man’s curiousity to find out the basic functioning – the neurology of mankind.

It is getting late – nearly eight o’clock in the evening and we’ve been going non-stop since nine in the morning. We’ve been with Jon for about three hours. He is getting hungry and tired, the bright camera light is becoming too much for him to bear. He is showing signs of agitation and begins to cry.

“I’m tired. I want to go home.” Alan goes in to soothe him. Father and son are bonded. Jonathan wants to hug his father and there is a sweetness that surrounds them like a cocoon. We all watch. This is not the first time I’ve witnessed the tenderness between them, Alan’s complete devotion to his son. I can tell Alan is a little sad to see his son upset. I can tell, I think, because I understand the sensitivity of a parent towards their child.

I want to tie this up. I want Jonathan to be with his father and go eat.

While wrapping up, Joe goes to calm Jonathan while Alan takes photos of the works I’ve picked for exhibition. I show Joe the picture I’ve used in the Joy of Autism ads and ask him where the piece is. Nobody knows. There are still so many works still to be exhibited, catalogued. Jonathan’s work is his artifact and must never be lost.

To distract Jonathan for a few more minutes, Joe asks if he can replicate that drawing. Jonathan does. He is calmer.

We head to the car to return to the airport. We are returning to Toronto.

“What do you want to eat?” asks Alan to Jon.

“Italian.”

We are all salivating in the back at the talk of food. It’s been a long day and we too are hungry.

“I want Fettuccine Alfredo,” says Jon.

Alan holds Jonathan’s hand to keep him calm. Jonathan is indeed experiencing some anxiety issues. It is clear that Alan is a steady source of calm.

“Jonathan has been talking of going to college,” Alan says earlier. I am thinking it’s entirely possible, if not probable. Jonathan is surrounded by the love of his parents, and after meeting Larry, will likely manage his anxiety at some point. Jonathan has a girlfriend, just went to his high-school prom in a limo, and I’ve noticed a language burst since I last saw him.

We say a quick goodbye; Jonathan shakes everyone’s hands and runs back to the car.

“Go feed him!” I laugh and Alan runs after him.

I am delighted to see Jonathan too, but indeed saddened by his sadness, hoping that food and going home will ease his stress. I think of what Larry might have been like at Jonathan’s age. I think of Barbara Moran, the autistic woman, age fifty-five from Topeka, Kansas, who wrote to me of how her sensitivity to noise has made it virtually impossible for her to be around people, and how she says that being on medications and being institutionalized made “her autism worse.” I think about ability, about the title Joy of Autism, about sadness and struggle, but how every autistic person I’ve met and spoken with enjoys being as they are despite their challenges, which even to me some days, is difficult to comprehend. I think about the responsibility of talking about the provocative title Joy of Autism amidst all of these challenges – how some parents might call their children a joy, but “not the autism.” Yet, I hope that the positive messages from autistic people who face these many challenges, will reign. I think about how we define ability and how we must search for it in every individual – and how we must find our little ounces of joy in the many moments of our lives.

10 Comments:

Anonymous Anonymous said...

Perhaps the provacative title of Joy of Autism can be explained by the quote: "The most profound joy has more gravity than gaiety in it." (Michel de Montaigne) Art imposes designs and forms of experiences in which we can realize enjoyment through recognition so that that joy shared is double joy.

Your heartfelt column is one that expresses the force of love and the joy of life.

Scorpio

12:16 PM  
Blogger Kev said...

I can't recall a blog entry I've enjoyed more Estee. Wonderful.

2:02 PM  
Blogger Kristina Chew said...

Fascinating your recording of Larry Bissonnette's speech---his condensed speech patterns make me think of all his paintings pack in.

2:45 PM  
Blogger notmercury said...

Ditto what Kev said. Thank you for bringing us along for the ride.

5:34 PM  
Anonymous Camille said...

I hope we can all see the documentary. It sounds wonderful. Suprelative.

7:07 PM  
Anonymous Tera said...

I loved this post, Estee.

The Autism Acceptance Project makes me wish I lived in Canada ;-).

7:59 PM  
Blogger Estee Klar-Wolfond said...

The film will be posted on The Autism Acceptance Project's website at www.taaproject.com in about a month.

8:28 AM  
Blogger notmercury said...

Looking forward to seeing the video Estee. Will you let us know when it's up?

Thanks again for all you do.

9:03 PM  
Blogger Estee Klar-Wolfond said...

Thanks notmercury. Yes, in editing now. Video will be up on www.taaproject.com in about a month.

9:04 AM  
Anonymous Olivia said...

It is really unique and interesting that Jonathan draws faces; I have noticed that most autistic artists don't, and even that the same artists who can render breath taking landscapes and perfect likenesses of inanimate objects are more often stumped by the human face and form, even to the point that any picture they do with people in it, whether the face is visible or not, has a different, lesser quality and doesn't even look like it was done by the same person. A great example of this can be found in the works of the late Richard Wawro http://www.wawro.net/gallery_home.html and you've probably already been to this site http://www.wisconsinmedicalsociety.org/savant/default.cfm but in case you haven't I would urge you to go and check out especially the works of Richard Wawro, Christophe Pillault, and Ping Lian. Ping Lian is another autistic who draws faces, and his style is really similar in some ways to Jonathon's; oversized features for the size of the head, small bodies, and the eyes in particular seem to be drawn so as to bring attention to them. I have wondered if this is sort of how these artists see people, especially since Ping's drawings of buildings and other things are all done much more proportionally correct. Perhaps they draw the eyes and the mouths so large because they grasp the concept that these features are very important in the communication of what people are feeling and thinking, but they don’t always understand what the different facial expressions mean.

7:11 AM  

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