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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

Thursday, April 10, 2008

 

As We Are



This baby born in India with two faces, says The Globe and Mail, "is doing well and being worshipped as the reincarnation of a Hindu Goddess."

"My daughter is fine, like any other child," said her father. "She is leading a normal life with no breathing difficulties," said Dr. Ali, who saw no need for surgery.



The ignorance in the way we express our familial difficulties in having autistic children is boring and tiresome. It is systemic -- we live in a culture that overspends, overworks and over-competes and these qualities together are supposed to comprise our identities. We complain on air how "difficult" autistic children are on parents and teachers instead of espousing them. Who cares about difficulty? I mean, our entire lives are meant to be difficult! But it need not be AS difficult if we can change the way we view things, which in turn effects the way we treat and accept people.

I am very disturbed at how trite our talk about autism and disability has become. I've said it before and I'll say it again, accepting autism does not mean preventing autism. It does not necessarily mean curing it, either. I am not going to speak for my son when he gets older -- I expect he will speak for himself. But I certainly do not wish to waste his precious time fighting for him to become something he is not when he can be successful as he is. Why does being "happy" with or without autism, not have to include sadness? How else would we feel one without the other?? How do not other "normal" (hate that word as you know, but I use it facetiously) children and families go through strife? And yet, look at little baby Lali above.

I suppose my happiness comes from my critique of our existence and how we look at things. I'm going through a phase of disgust with the media -- as we all know it's one big money making entertainment machine. I mean, do you really trust the newspapers you read? I hope we are all reading more than our national newspapers and CNN headlines!

As Elizabeth Gilbert said in Eat Pray Love, "people tend to think that happiness is a stroke of luck, something that will maybe descent upon you like fine weather if you're fortunate enough. But that's not how happiness works. Happiness is the consequence of personal effort. You fight for it, you strive for it, insist upon it, and sometimes even travel around the world looking for it. You have to participate relentlessly in the manifestations of your own blessings. And once you have achieved a state of happiness, you must never become lax about maintaining it, you must make a mighty effort to keep swimming upward into that happiness forever, to stay afloat on top of it. If you don't, you will leak away your innate contentment... the search for contentment is, therefore, not merely a self-preserving and self-benefiting act, but also a generous gift to the world."

I started reading Gilbert's book just before I went into surgery. Adam said I was reading "sad" books (his interpretation of my furrowed brow), so I said screw it, I'm going to read something light. When I read that paragraph of hers, it's melody sounded like a jazz line that could tie in with my Joy of Autism mantra above, at any point in the jam.





In a way, that's how I see disability studies and art. It's about being happy when we can touch our sadness, our selves and connect with what unites us. It's a way of digging deeper and hopefully shoving out those kitsch and trite notions we espouse on the air and in too many self help and autism "acceptance" books. What about digging a little deeper not into what it FEELS like just for a parent of an autistic child, but take a look into the lives and creations of ordinary people -- disabled people. For if we are all human, I am disabled too.


In honour of Petra Kuppers and her work and her website, I found this poem by Neil Marcus:

The Nude

by Neil Marcus




Nude we are
As sunbeams
As light
As moonlight
In darkness

There is a slow burn in the nude
A passion
An expression
That only a nude can tell
An opening into another dimension

soft flesh, hard muscle, gentle hair, speaks quantities
Elegant
Needs no explanation
Or justification
Just is
Can only be
What we cannot say with words

We are cripples
We are exquisite creations
Is there a shame to resolve ?
Freaks of nature or Precious Beings of another kind of second sight
Look again
Think twice




I wish to speak the unspeakable
The hidden
The secrets I have hidden
Insatiable DESIRE
Longing intimacy
Fierce intimacy
Ravenous touch
Total exposure




I wish to expose My Gender. My Sex. My Love. My Passion
These words are not just hollow affirmation
I dare speak clearly only in silence

They are my form
My disability
Naked to the world

Spasm to the world.

----

Don't we all want to be seen?
I know that Adam does. And he won't want to be seen through the veil of misery, but just as he is.

8 Comments:

Blogger Phoebe Gleeson said...

I wonder. Is that one girl with two faces or two girls with one body? I suspect the latter.

7:14 PM  
Blogger Estee Klar-Wolfond said...

one girl with two faces. All her four eyes close at the same time when she sleeps.

She "has an extremely rare condition known as craniofacial duplication, where a single head has two faces. Except for her ears, all of Lali's facial features are duplicated: she has two noses, two pairs of lips and two pairs of eyes."

7:48 PM  
Anonymous Adi said...

It is sad knowing that so many parents spend their energy on conversing how difficult their children are, etc. And mostly, I suspect, with a lot of ignorance as to how their efforts really impact their kids, at such a vulnerable age. I read an amazing quote by Patty Clark the other day, where she explains about adult diagnosis: "It’s such a relief to know you are not a bad person for being yourself." It is not right for a child to grow up thinking they are bad for What They Are, especially if they are definitely not.

I hope you are doing well, thanks for making time to blog while you are recovering.

11:42 PM  
Blogger farmwifetwo said...

http://cafebonnie.blogspot.com/2008/04/down-with-puzzle-pieces.html

I posted a comment in here... I am currently having issues with label's in general. And posted a "story" on it over at Trusera.

10:14 AM  
Blogger SnoopMurph said...

Hi there,

I just wanted to say that I came across your blog today and I want to just thank you for such honest writing on autism. I delved into your previous posts and came away with such positive thoughts.

I have two young boys, my youngest has autism and he is 2 and my husband and I look for positives over negatives as much as we can. I will definitely come back. I wonder if I might be able to link you on my blog as well.

Thanks!
www.snoopmurph.blogspot.com

Linda

2:47 AM  
Anonymous Anonymous said...

The aspect of commercialism and the media has never changed. The media is what it is and there are those who really want to explore and ask questions beyond what they read. These are the thinkers and doers.

8:56 AM  
Blogger Inspiration Alley said...

I've just come across your blog and I'm bookmarking it to delve into further later. I found your article inspiring. It fits in with my own views and those of my son. My son is officially diagnosed as being on the spectrum, I am not, but I know that I am. The day I came to terms with myself was the day I accepted I am what I am and it's ok to be different. My son hates it when people attach a label to him and judge him accordingly.

2:02 PM  
Anonymous Anonymous said...

Have you ever read "The Alchemist" by Paul Coelo? It's a beautiful story about things you've written. I'm getting emotional just thinking about it. I think I need to read it again.

12:00 PM  

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