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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

Monday, July 24, 2006


Gossamer Dreams

I've been to the cottage. I've gathered with about fifteen other mothers, drinking wine, making exquisite food, and playing games in the darkness of the cabin, while moths beat their wings chaotically against the windows, the light lulling them like sirens. We don't let them in.

Our children are at home and the games reveal us -- unravel our everyday mother-armour, our hard practical sides to the soft sticky stuff that composes our mucky lives. I don't reveal to much too soon. When I do, I am always disappointed. I talk about Adam, of course. I talk about how wonderful he is, how I've come to appreciate what he brings to me, how he expands me in every way.

She happens to be a speech-language-pathologist, and as I talk my joyful talk, a look of subtle skepticism crosses her face. I've seen that look before. The kind where I feel like I have to talk wiser, faster, smarter. I've seen it in the eyes of Adam's psychometrist, when Adam was first diagnosed, eyes peering at me from behind dark-rimmed glasses like I was a mother in denial of her doomed child. I've seen it in the developmental pediatricians' eyes when she looks at me as if I don't know what I'm talking about. It is a subtle look, even if unintended,a glance like a drop of poison that could seep in slowly, killing everything.

"I don't admit to know anything about autism," she says. "But unfortunately, the majority rules." She is talking about how we interact. How we are judged and what we have to do to "fit in."

The majority rules.

I can't respond. I have to absorb what she says for a while because I don't want her to think I agree. Thankfully, she is called away while I stay on the lounge chair -- the wind picks up and it's just me and the lapping waves swelling near my feet.

It hits me as the group of women gather on the porch and I stay back with my books and writing notebooks gathered around me, my silence swathing me like silk against the drone of voices in the distant background.

A majority is a perception. That "normal" is just a version of ourselves -- what is normal must be like us. It is a narrow-minded way to look at the world that is comprised of so many different kinds of people. A majority is comprised of tribes and they form larger communities that simmer in melting pots. What is the majority today always shifts the next -- the gay and black communities being poignant examples of a world made better with the acceptance of difference.

I am in town and I buy a magazine to zone out, Town and Country, and find an article about autism, just when I want to think about other things. It is not a good article, but one featuring Autism Speaks, the tragedy of autism, the stories reminiscent of the Autism Every Day video -- of desperate parents pulling on their children's hair..."hard" because they "have to." There it reads in the glamourous gloss of a high-society magazine, directed at an audience that will give their money to any heart-felt cause. It's not that it isn't heart-felt to them, but it is nevertheless destroying the spirit of many autistic people and infuriating me as my own friends will approach me about that "devastating article" with perhaps a pitiful glance at my beautiful son. Adam deserves so much better than this.

The hors d'oeuvres come out on the picnic table as chilled wine is being poured. Perhaps I'm not the "majority" in this crowd who are talking about the many people I don't know, and the ability to talk without end. I enjoy listening. I seem to be welcomed enough for it. I prefer to sit alone next to the trees whispering their sweet messages, the expanse of water soothing away the noise of the city. But the voices call me to partake, to play games, to reveal, to share, to learn, perhaps to burn but to always, always start again.

I am a moth and she my candled flame
By her flickering light I guide the journey
By her guttering glow I view it all
And painted by her light, the world is glorious
And to her I am drawn

I am a moth and she my doom
Fluttering towards her I am flying
Deeper into her pool of joyous light
Ever closer to her killing flame
And by the heat of her presence
I ignite

Gossamer wings burn and seemingly evaporate
Incandescent pain lances throughout my self
I drop to the earth burned and battered
But miraculously alive
And I rail at my foolish ways
I could fly, and where did I go?
To pain, to anguish, to her
I wait to die

But I do not end upon the days next dawning
And upon my burned and scarred back
Are several strange nodules forming
Wings regrowing and a second chance
And by the evenings' cool embrace
flight have I again attained
And as I launch into the dimness
I see a soft light

Its her, her light undiminished for having consumed me
And I approach again

As the next day rises, my new wings just forming
My again burned body rests now
A strange sight I see
Its her I somehow know, but different in form

In the light of day I see her for what she truly is.
Not a candle's flame, but a moth in her own right
And upon her burned back grow
A new set of wings…

© Daniel Wolf Roemele


Anonymous andrea said...

I know that sort of experience.

It's a strange hollow invisible kind of feeling, like you could fade away just sitting there, because your own personal reality has so little bearing on what happens in those discussions.

Your differing opinion is dismissed because it doesn't promote "concensus" and "unity", and your positive self-image threatens to stir up the self-effacing cooing of the group.

It's like fighting fog some days.

9:41 PM  
Anonymous Kathy said...

I've had similar experiences Estee. But you KNOW your own child better than anyone.Trust your intuition. Every mother knows her own child better than any one else.
Still, I know it can be demoralizing at times.
To put it another way "Don't let the bastards get you down"

7:18 AM  
Blogger Kristina Chew said...

I've done the same in a group of mothers talking about their kids----I just talk about what Charlie is doing and where he is. It does create a bit of a silence and I have to make a bit more than effort to stay in the conversation. But I, and Charlie, need to be in it.

8:03 AM  
Blogger abfh said...

"What is the majority today always shifts the next"

How very true this is. Society constantly changes its ways of defining the various in-groups and consensus-normal behaviors. A person can be a valued member of the majority group one day, and an outcast the next, just like a change of fashions in clothing.

The concept of an identifiable, separate group of people called "autistic" is a very recent social construction in itself. Most of today's autistics would have been in the majority and considered normal if they had been born a few years earlier.

8:38 AM  
Blogger Estee Klar-Wolfond said...

It is very important to stay in the conversation, I agree, Kristina. It's interesting how people take my entries as others getting me down. I guess I take it as it comes, a reality, an expectation, a reason to keep talking, writing, doing presentations. Hopefully others can use my writing as a bridge. I am sure others experience the same disconnects and it's important to keep supporting each other.

8:43 AM  
Blogger LJCohen said...

You write so beautifully about that moment of 'otherness' we all experience.

Enjoy your time away being near the water and the particular peace it brings.


6:05 PM  

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