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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

Tuesday, November 13, 2007


The Ineffable Language

Here is Grandma and Adam on around the University Music Hall and Philosopher's Walk. Adam likes it there -- just like his Grandparents. My parents used to take me at Adam's age, to U of T music concerts in the Edward Johnson building (they are trying to take Adam now as well). Music was a major part of my life as I took dance, played many an instrument and was a singer in choirs and later, in bands. Of course, those of you who've been reading this blog know that I moved into fine art history. My love of art, music and philosophy was cultivated by my father who collected. He also made me read Wagnerian librettos by the age of twelve despite my protests (I'd rather listen to Michael Jackson at the time), and he believed that a mighty discipline could be transferred from a military-like barking: KICK! those Kabalevsky Kicking Stones, he said over-emphatically from behind my shoulder (which ultimately lead me to win first prize in the Kiwanis Music Festival).

But a military-like discipline was not my style. I was a quieter, poetic type who preferred to explore my creativity through other pathways (reading books under my covers with a flashlight was common). I never became that concert pianist, although I want to play again as I struggle to read my notations (I was always better at playing by ear). I never became a visual artist, despite my appreciation. Now at forty-two, I try to work on the craft of writing, recognizing that I will spend the next thirty more years of my life, if I am lucky, attempting to develop it. What of this do we pass on to my child? While he may appreciate music he may not like to play it, or even be able to. He may be the consummate listener.

The most awesome savants work endlessly at their craft -- the sheer obsession and focus that nurtures the end product. While a gift is clearly present, I am not convinced that even savants do not work tirelessly to become "savants," for it is the intense focus, or "obsession" as some call it, that creates the beauty and the ability. I am disturbed when "plain old" autistic people, for the mere fact that the "do" art, are called "savants." This happened when I curated The Joy of Autism: Redefining Ability and Quality of Life exhibition. This cheapens their Personhood, and the propensity to artistic endeavour for all human beings -- for art is nourishment. No, not all autistic artists and musicians are savants for the mere fact that they are artistic, or have some ability and enjoyment in the making of it.

Adam enjoys music. He likes to sing, though talking is much more difficult. As I learn that song is deeply embedded in our brains and can be "extracted," if you will, in even the most seriously brain injured, I believe that art and music are a part of human mystery -- the human "spirit." Despite all attempts to map it and observe it on FMRI's and TMS's (Transcranial Magnetic Stimulation), I wonder if we will truly transcend what has fascinated philosophers for all time. Isn't it part of being human to question what makes us so? What will happen if that mystery disappears? Will we still be human? Will science decode the very nature of humanity -- the deeply embedded stuff of consciousness? While art informs us of cognition, it also equalizes and unites us. At least it should.

Neuroaesthetics is fascinating to me, and I'm in the process of studying it. It is thrilling to see this confluence of ideas -- of art, philosophy, music, and the sciences. My father used to hate the fact that universities begin to "teach trades," if you will. An engineer turned businessman out of necessity, his worldly entrapments abated on Sunday mornings as he engaged me in discussions about Roman History, Linguistics, Emmanual Kant, Baruch Spinoza -- and then the perils of the MBA. Perhaps he was a purist in thinking that universities should provide a "universal education." I have inherited such a belief (although I struggle to attain the same level of focus as he in my studies). In art history, how intrigued were my professors when I brought in musical pieces and examples from other genres to illustrate a period. I owe it to my father -- the man behind the camera, by the way, in many of the photos I post here to my blog.

Last night, Oliver Sacks came to speak in Toronto. He has popularized the merging of such ideas -- of art and science in his new book Musicophilia. I quite enjoy listening to anyone discussing art, cognition and the tacit suggestion that what we don't know makes us fully human -- of the unbidden, the underpinnings of the brain, which we can also understand through injury, and the capacity of the brain to compensate and adapt. While I am fascinated how science can observe the functioning of the brain in action, I question if science, through its "simple art of observation" as Sacks says in his book, "may be lost, that clinical description may become perfunctory, and the richness of human context ignored." Isn't this missing from our current scientific studies in disability and autism? The human context? The human experience? Afterall, when science de-constructs, what might it take away from human experience?

I will hopefully be writing more on this myself in the coming months, as the arts are my true passion. I revel in Adam's own unique experiences, and I try to document the things he loves and the context in which he places them in order to try to make a sense out of them. He enjoys the number 4 today, and usually, 7 soothes him. When he repeats the number 11, I know he is very distressed. And what of his art that embeds letters underneath his staccato (okay he is still only five and a half), brush strokes, or his innate musical ability (which as Sacks notes, tends to be innate in all of us, but is subsequently pruned)?

So I find it ironic that my son traverses the path of his Grandparents and of his mother at the university's Philosopher's Walk. We never know what will become of it, of us -- the matter of it all. You see, not everything can be distilled. There are some things that are just plain ineffable -- music and the human spirit perhaps just two of them.


Anonymous Maddy said...

Glad you had the opportunity to hear Oliver Sacks - I had to make do with NPR! Fascinating nonetheless.

11:17 AM  
Anonymous -Brian- said...

It was Erich Fromm who pointed out his disagreement with Desmond Morris (who wrote "The Naked Ape") that humans are not just entities with ape-like bodies and computer brains; they indeed, according to Fromm are much more that this, and any attempt to reduce them down to their biology and their intellect, alone, is doing them an immense disservice.

That is where I cannot accept the "common sense" principle of mind vs. body, of two basic human issues being opposed to each other. There has to be the other non-scientific, non-aethetical avenues such as empathy and integration to enhance the human experience far beyond the mind-body duality.

Those who ask, when hearing of an illness, whether it is a physical illness or a mental illness are limiting their own experience and understanding of the human condition; only those who accept a "disability" as being beyond these two classifications will be able to see beyond the wall, i.e., to open "the door in the wall" to better human comprehension.

By going beyond musicology, beyond any attempt at partial integration, into the unknown territory of full human integration will individuals (and hopefully, some day, society) be able to experience what they have been missing for milleniums. Even the word "spiritual", at that moment, might be seen as a misnomer, as any "label", itself, might limit rather than enhance any description of this experience.

11:45 AM  
Blogger Sustenance Scout said...

"Those who ask, when hearing of an illness, whether it is a physical illness or a mental illness are limiting their own experience and understanding of the human condition; only those who accept a "disability" as being beyond these two classifications will be able to see beyond the wall, i.e., to open "the door in the wall" to better human comprehension."

Estee and Brian, I copy important texts to help me remember them...Brian, your insights amaze. Thanks for commenting on my blog's survey. I've just posted a wrap-up which includes references to you and to Estee's blog. Thank you both for all you do. K.

4:28 PM  
Blogger Papi said...

Love your blog! Just started posting my family insights/experiences with my son on

Thanks for sharing.


6:41 PM  
Anonymous Anonymous said...

The concepts of philosophy based from the time of the industrial age have dealt with man and the meaning of freedom. It will be interesting to pursue our values and freedom in light of a new global world and how we must embrace the rapidly changing concepts that open a a new territory to explore.


6:14 PM  

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