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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, February 17, 2006

 

Drops in the Desert

One day a family drives to Haifa -- a son with cerebral palsy and a hearing aid. Thirty-six years ago, hearing aids were obvious – wires coming down from the ears and a box against the chest. Mother, father and son had to make a stop. Father got out and two young children, around the age of six, came out of a store and stared at the boy in the car with the hearing aid and mumbled something to themselves. Mother notices and says,

“Do you want to know what this is about?”

The children hesitated, unsure of what to expect.

“Come, let me show you,” she beckoned.

The children approached slowly while Mother took one of the earphones out of her son’s ear. The son couldn’t move, so Mother explained to the children why he couldn’t move and why he had the funny earphones with wires.

“Why did you do that?” asked an observer. “Do you think they will care?”

“It’s like a drop of water in the desert,” said the Mother. “Over time, there will be more drops and then something will grow.”

When it comes to creating tolerance and awareness in our society about disability, we are pouring drops in the desert. It seems like we’ll never get far, that our voices will never be heard, but over time the drops will become more frequent and we may have ourselves one fine oasis.

Dr. Nehama Baum has people with complex disabilities enter her centre. Some are suicidal, homicidal, and incredibly aggressive when they arrive. Most have come from complicated backgrounds, some even abusive – from families who have tried so hard to change them, and like putting a square peg into a round hole, we all know this is impossible. When they enter MukiBaum and are acknowledged for who they are, however, with schizophrenia, autism, and a number of other complex issues, they are able to calm down, learn and attain the quality of life I talked about in yesterday's post. When one is talking about autism in this context, I must also refer to other disabilities. I cannot interchange one for another when it comes to conversations about acceptance.

"If one can acknowledge the other’s voices in their heads and enter their inner world," (referring to schizophrenia) says Nehama, "they feel respected and become easier to reach." No matter what, Nehama wants to enable Identity in some of the most severe cases of disability you will ever hear about. Some continue to paint and have become quite prolific while others have used art as a therapeutic tool.


Jordan, from MukiBaum Centre for Complex Disabilities has 5 diagnosis'. One of them is schizophrenia. Posted by Picasa

So why am I going on about this? I do so to continue to raise awareness and will be setting up an organization to do this. I am organizing another big arts event this October -- so far featuring Donna Williams, Michael Moon, Mukibaum patients, and Jonathan Lerman. I will be seeking more -- email me if you’re interested. We are all bricklayers – we need to build the bridge between the world of disability and the rest of us. As Autistic Bitch from Hell states (I love her writing, but hey, can you change your name…you are hardly a bitch), the true meaning of Neurotypical is that there is, in fact, no such thing as normal:

"The neurodiversity movement is based on the belief that there is no such thing as normal when it comes to the human mental landscape. The neurotypical person simply does not exist. Together we display a wide variety of neurological behaviors and abilities..."

Consider that for a moment so we can stop creating that lingual and conceptual divide between “us and them.”

And the drops in the desert story? It belongs to Dr. Nehama Baum.

4 Comments:

Blogger Kristina Chew said...

Thank you for sharing the "drops in the desert story"---the very notion of "normal" and of a "norm" did not always exist; it seems to have arisen with the rise of modernity.

Hope you will be posting pictures of the art from the show-----

5:44 PM  
Blogger Mom to Mr. Handsome said...

I love the analogy! I wish we had an ocean/forest of understanding for Autism!

Kristin

6:29 PM  
Blogger SquareGirl said...

This was a wonderful analogy for us...thank you again. I too would love to see pictures from the artshow!

9:00 PM  
Blogger Estee Klar-Wolfond said...

I will preview some and put a remainder on just before October.

Thanks for your interest!
Estee

8:37 AM  

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