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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

Friday, September 01, 2006

 

Larry Bissonnette, Jonathan Lerman and the Profound Joy of Autism

I have rewritten this post from an earlier one.

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 in Burlington, Vermont and then Vestal, New York. I visited Larry and Jonathan in order to curate their artwork for the exhibition and upcoming event in October: The Joy of Autism: Redefining Ability and Quality of Life.

I climb the narrow stairs of a barn-like structure housing other workshops. It is hot and sticky; the air is thick with dust. Larry watches me approach and I smile excitedly. He leans in to me with his forearm, and returns the smile -- his version of a handshake.

I am so happy to meet him in person, finally -- an admirer of his awesome insight and poetic way of describing 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 am tentative and try to be delicate and gracious within his space. There is a cameraman with me. Larry, I’m told, likes to be on camera, but we are all quiet, introducing ourselves slowly, meeting his assistants, letting the minutes determine what is to be said, and how much.

Larry is standing near the door, drawing arcane lines with his finger through the air, like the conductor of an orchestra. “Baby blue door,” he interjects, as I wander around the room, 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 1992.

“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 son Adam, now four, is scripting -- when he places a phrase into a space or a moment, how it can make sense even though it is repetitive, like he is enraptured with the sound and the melody of the 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, leaning in and listening closely. “Ah!” he says, and promptly begins to type on a portable laptop that Pascal pulls out for him. “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, arms folded, smiling. I ask him if it’s okay to look, even though this is what I came here to do. Craig, the cameraman turns the camera on, the dialogues at this first meeting among the artifacts of Larry, of autism, and this attempt to promote awareness about autism ability.

After two hours, I pick the work for the show, we grab lunch and return to the Howard Centre, a few miles away from Larry’s studio, where the interview continues. We are next to the University and Burlington still bustles with summer students. 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 for Macdonald’s burgers from her purse and hands them over. Larry reaches for them hastily.

“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 again, the camera is ready. Larry is using a computer program called Write Out Loud, which says the words and sentences he writes. Pascal's index finger and thumb squeezes his shoulder gently to remind Larry to keep his fingers moving along the keyboard. 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 understand intuition.

It amazes me that popular science has purported so many myths about autism to the point that the public doesn’t believe that empathy, emotion, imagination and intuition are a major part of an autistic person’s life. Larry is one of the many autistic adults I’ve met and spoken with over the past two years of travelling who refute many of these ideas – “the shell of a person that is autistic.” We have learned that autism is very much a part of the person. We have learned, through the research of Dr. Laurent Mottron and Michelle Dawson from University of Montreal and Dr. Morton Ann Gernsbacher from University of Wisconsin-Madison, for instance, that there are cognitive abilities in autism that seem recondite but valuable, and using the metaphor of Camille Clark in a recent Autism Podcast, may be akin to "learning upside-down."

“How can you begin to know how to teach an autistic child unless you understand how we learn?” says Michelle to me in a lengthy telephone conversation. Her research with Dr. Mottron is helping us understand this. “It is untrue that autistics need to learn how to learn,” she laughs. “We learn!” I can see that of my son, how he acquires reading skills, among many things, on his own. It may not take the shape I’m used to, but I know he is learning.

“Whose to say that our senses are disintegrated?” she scoffs. This is the premise for sensory integration theories, but Michelle and Laurent both make the point that there is no disintegration, just a difference. I feel that Adam’s sensory system is so precise, attune and very intact if not overly astute to the point of intuitive. Michelle helps me think about how boxed in I feel with popular theories that have been interpreted as absolute truths about autism. She doesn’t say this to me, but what she does say is more congruous to my experiences with Adam than any one else’s words or theories of autism as a set of deficits and inabilities.

She suggests that there is a false-belief that once we know the cause of autism, we’ll understand everything. Instead of jumping from causation to behaviour as a means to supposedly "understanding autism," we are finally looking at cognition and abilities – one might say, the meat and potatoes of it all.

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 for itself, and because of his autism. His art and the titles he ascribes to them, are inseparable. Larry is like a poet, revealing profound truth about his experiences in institutions and his views about life in a mere phrase.

“Yes,” he continues, knowing how people will view him, most likely, better than I.

Ralph Savarese, a professor of English at Grinnell College in Iowa and a father of an adopted autistic son, wrote to me about Larry’s language:

“There’s something profoundly relational (analogical) in the way that non-speaking people with autism communicate. Perhaps being forced to map the world visually encouraged an over-reliance on metonymy (or the principle of relational contiguity); whatever the case, their way of communicating and the ethics it implies (not individualism but community, connection) seems a lovely rejoinder to much that is sadly neuro-typical. In a footnote about Larry, I suggest that he seems to produce spontaneously the wonderful analogical dislocations of the great modernist poets.”

“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. I’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 for him as he types slowly with one finger. And we have a plane to catch. Larry will come to Toronto in October and speak to others at the gallery on October 5th, which will be open to the public.

--

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 and Jonathan looks as excited as he did when I picked them up for the opening of his exhibition at Lonsdale Gallery last year -- 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 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 and at the end of the long narrow hall.

“I want to start a sculpture,” he declares. Joe was hoping he would draw or finish the one in front of him. Osama Bin Laden stares at us in the doorway. Jonathan’s room and the clay studio are filled with other political figures too. Today, he wants to do George Bush. Again, the camera sets up and he begins scultping. “There’s no such word as can’t,” he declares, molding Bush’s nose.

I enter the adjacent room flipping through hundreds of Jonathan’s incredible drawings. I pick drawings from Jonathan’s various stages of interest – people he knows, rock musicians, busy collages of faces -- 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 mediums. I am impressed how Jonathan’s sculpture is becoming more sophisticated, and the speed at which he works.

“One day I finally got Jon to do a self-portrait in clay,” Joe says 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. We stare at each other at the apparent irony. “Isn’t that bizarre? Not one other head blows apart except for Jonathan’s.”

Later, I see that head proudly sitting on the window ledge of his drawing studio. It is not blown apart as much as it is fractured. The outer skull on the left side has fallen off but sits deliberately 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 what makes us tick.

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 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. Jonathan wants to hug his father and there is a sweetness that surrounds them like a cocoon. We all watch in the crowded studio, feeling invasive, and this is not the first time I’ve witnessed the tenderness between them -- Alan is completely devoted to his son. Alan is a sad to see his son upset, his tall frame enveloping Jon, comforting him. 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. I think, 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 are back in the car, Alan’s Magellan is talking us back to the airport in the otherwise quiet SUV.

“What do you want to eat?” Alan asks Jon, trying to let him know that dinner is coming soon.

“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. I have noticed a remarkable increase in Jonathan’s language compared to a few months ago. Alan holds Jonathan’s hand to keep him relaxed. Jonathan is rocking his body a little, like he’s holding on to himself. It is clear that Alan is his steady source of calm.

“Jonathan has been talking of going to college,” Alan says, taking a deep breath, turning his head to talk to me a little more. 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.

We run out and 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, hoping that food and going home will ease his stress. I think of what Larry might have been like at Jonathan’s age, when his sister took him out of the instiution he talks sourly about today. 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 The 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 The Joy of Autism amidst all of these challenges – how some parents might call their children a joy, but “not the autism.” Yet, every parent of an autistic child knows that our beautiful children demand from us a commitment to joy. Joy is struggle’s antithesis. We can not experience one without the other.

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 uniqueness, potential and dignity in every individual – how we must find our little ounces of joy in the many moments of our lives.

The Joy of Autism: Redefining Ability and Qualtiy of Life, October 5-November 5, 2006. A lecture series at the Miles Nadal Bloor JCC and concerts and exhibitions and presentations at Lonsdale Gallery, Toronto all by autistic people, parents and researchers in support of acceptance.

For more information contact www.taaproject.com
Or 416-487-3600

Click Here for VIDEO

2 Comments:

Blogger Dr Vikas said...

hello

12:25 PM  
Blogger Estee Klar-Wolfond said...

Hi!

12:31 PM  

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