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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, January 05, 2007

 

What Are They Thinking?

Autism EveryDay and Autism Speaks -- Stop Speaking for Autistics Now!


Let me go on the record right here and right now: I protest this screening of the Autism Every Day video at the 2007 Sundance Film Festival. While I believe it is a parent's natural reaction to experience a period of mourning, and that some parents find it harder to cope with difference and disability than others, I do not agree to stage this film as the real representation of autism as it is harmful to autistic people, does not include their voice, and as such, does not fairly represent them.

I hereby stand to protect my son from the harm that this video is causing by creating a devastating message about autism that then gets reported by the media. I believe Christschool has produced a video that we should all watch. I also urge all of you to add your comments to me by email or herein that I will gather to send to Sundance.


Autism Speaks



Our Autism Reality

So I am recovering from knee surgery. I had a terrible reaction to the anaesthetic which has now thankfully let up.

The day before yesterday (surgery day), our flight was delayed for two hours. We left my in-laws Miami condo at nine in the morning to return to Toronto a mere eight hours later -- what should have been a four hour trip all 'round. Adam was fanatastic. We walked around the airport, we watched the airplanes take off, we played games and ate Adam's favourite: potato chips. On the plane, Adam initiated a game with me. He beamed and asked "Make a face!" So I crossed my eyes and stuck out my tongue. He found it hilarious (and thank goodness no one saw me because I was acting ridiculous!). He kept asking me "make a face...make a face!" I kept making them. So I told him, "Your turn. Make a face!" He tentatively stuck out his tongue a little way out. I was elated. My son had made his first face intended for my laughter! He was laughing with me.

I decided on this trip to show Adam how to draw objects. I have so far, taught him to draw a happy face, a snowman and a house, using a triangle, square and rectangle for a door, reading somewhere sometime ago, that using shapes and putting them together to make a cohesive whole might make more sense for Adam. Sure enough, Adam has begun to imitate such drawings. However, I decided in the airport to ask him to draw objects I have not taught him how to draw: a boat, a tree and a butterfly. He could draw them. Sure, his mast was a triangle that didn't quite meet up with the bottom of the boat, but I don't care! My son's world is expanding!!

Adam spent his nearly two week vacation with all of his cousins and his half-siblings. He played with all of them, and they got to experience his affection, his happiness. Adam really does make everyone around him smile. These wonderful moments, along with the same tough days(arguably)that we experience with all growing, little children, is the autism we experience EVERYDAY.

Let Sundance See The Dignification of Autistic People and the Videos produced By Autistic People

Other Autism Reality Shows can be found on PosAutive. I strongly suggest Sundance take a look at the hundreds of videos that try so hard to achieve the respect and dignity for autistics that children and adults deserve.

Let Sundance See the Dignification of Autism in the Media:

This recent article on an autistic 5th grader, or

and this article that I recently appeared in January 2007 issue of The Village Post.

And this homespun autism awareness video among many others:

Autism Awareness video 2


Or the recent wonderful book by Ralph Savarese

The "real autism" is the face of life itself -- with ups and downs, sorrows and triumphs. Autistic people are not tragedies. The real tragedy is that there are people who continue to represent them as such.

18 Comments:

Anonymous Anonymous said...

I'm only blubbing because of Louis Armstrong - not for any other reason you understand.
Thanks for this preview, at least we'll be ready for the storm now.
Cheers

5:12 PM  
Anonymous Anonymous said...

What right do you have to determine who can say what about autism or the realities of autism as it affects different individuals and families? You are advocating censorship pure and simple. Unfortunately.

5:41 PM  
Blogger Estee Klar-Wolfond said...

Autism Reality:

I have every right to respond and to protest this Autism Every Day video which essentially only represents these parental views and from the accounts of its director, was staged (ie; the children were driven to meltdowns and only these were edited for the purposes of displaying the worst sides of autism). It does not express a balanced view of autism which would include the following:

Parental accounts (yes, all, including those of us who have adapted well to autism and are committed to the dignity and positive futures of our children as well as the challenged accounts) and;

It does not include one autistic individual speaking for themselves either by speech or augmentative method or device.

Like propaganda, in this case, aimed at inspiring pity in those who do not have autistic children in order to raise money, this video does not seek to dignify the autistic person in any way.

Further, freedom of expression is limited when it propagates hatred or discrimination towards any identifiable group, in this case autistics, justifies what you call “censorship”

9:04 PM  
Blogger Kassiane said...

I protest the way they portrayed autistic people.

I protest the way they invaded autistic people's space.

I protest the way they talk about people like me.

I protest the way they make assumptions about my inner reality without ever asking me or anyone remotely like me.

Autism Speaks does not speak for me or for any autistic person I know. They put out damaging propoganda that is meant to put more money in the pockets of whiney society mommies who are pissed that they didn't get to be soccer moms.

Until there is an equally unbalanced "Neurotypicality Everyday", this video belongs where they need to pay for people to see it, rather than OTHER people paying to see it.

I protest this portrayal of autistic people. I AM an autistic person.

10:16 PM  
Anonymous Ms. Clark said...

Right, Autism Reality NB.

Is it censorship when a member of a minority objects to a video of someone describing how that member of the minority might have been killed, and the person describing how the person might have been killed does so with a smile? And when the universal media feedback is "oh, how nice! mommy talks about killing her daughter in front of her daughter, with a smile on her face... how nice!"

Responding to that level of malice and sugar coated evil is not censorship dear, just like we don't allow people to spray paint "kill the (insert racial slur of your choice here) on their own garage doors or put up banners across main street that say the same.

Your reaction is just so utterly typical. Would you go on film with your child in the same room, feet from you, and say that you once thought of killing him and yourself, but didn't because you had a normal child at home? Would you do that? And expect praise for it?

How bizarre. How sick. Parents of other disabled children would not do this, not ever.

12:12 AM  
Blogger Fore Sam said...

Did you augment your breasts by cutting your brain in half and stuffing it in your bra?

12:20 AM  
Blogger Kristina Chew said...

Glad the surgery went all right and the image of you and Adam exchanging funny faces is priceless. Autism every day is always, or ought always, be full of chances for such moments; for laughter; for light.

3:02 AM  
Blogger Kev said...

"You are advocating censorship pure and simple. Unfortunately."

In fact it is the other way around. No one is claiming that life with autism isn't challenging. However, the Autism Every Day film, by the confession of its Producer, was engineered only to show the absolute worst:

"Thierry told her subjects not to do their hair, vacuum or bring in the therapists."

At one point, an autistic girl obviously uncomfortable with the presence of the camera crew tried to retreat to her own room - the camera crew followed her, prompting her into a meltdown. Great footage.

Don't you think that a film entitled 'Autism Every Day' should show the whole reality of living with autism every day? Don't you think that a film produced by a group called Autism Speaks should have at least included some input from autistic people?

We need information to overcome stigma, not manipulated propaganda. The 630 plus people who signed my petition agree.

What right do you have to call this film a representation of 'autism every day' when it clearly is not?

4:38 AM  
Anonymous Anonymous said...

I really like that video it totally captures some of our struggles. I don't have money for therapy yet alone a trip to Miami.
I would love to have a "diligent "program of one to one teaching, preschool, play groups OT and SLP BUT I don't have the money to help my much loved child.
I need advocacy groups to lay out the challenges to the government and public in order to get some funding so my child can have a taste of what you provide for your child.
You don't seem to "get" that.
I want a "formerly trained ABA" therapist too. I cannot attend your lectures because I don't have a babysitter ($$$). You are out of touch with parents who are struggling.
You are providing your son with all the therapy that other parents only dream of and you sit smuggly thinking you love your autistic child more and better than the rest of us unenlightened parents. Try sitting in my shoes, no help, no money, no therapy and still adore your boy as much as I adore mine.
If I am wrong and all your services are provided free by government agencies it would be great if you could share all names and contact numbers for the rest of us .

7:39 AM  
Blogger Estee Klar-Wolfond said...

Hey Foresam,

No, mine are very natural. Thanks for asking.

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

It strikes me as odd that you do not see the impact of the statments the video are making and the fact that that video gets media attention that your child's teachers and therapists view -- sometimes as a first introduction to autism.

I attended a teachers conference recently where teachers don't want autistic kids because they feel they are doomed -- that there is no intrinsic reward in teaching them. As the founder of TAAProject, we are working hard to demythologize autism so that all children and their parents receive the accomodations and support they deserve.

Would you not prefer to see a video that shows your child in a dignified light, be portrayed as a person deserving of a good education and one to one services? Yes, a parent's confusion and struggle should be expressed, but the struggle exists precisely because of an enormous amount of prejudice against autistic people. How,as a parent of an autistic person, can one endorse a video that did not seek the input of autistic people? How can a video not represent the feelings I have about my child? My feelings didn't come with the therapist. I chose to have the feelings I have about him, for him.

I think we should also be aware of hate propoganda and how closely aligned this video is to it. ("I don't want anyone to meet [my autistic sister] or "I would have driven over a bridge if it weren't for my [normal child]). This video does not represent the hundreds of parents who are members of TAAProject, and the list is growing. I think you should consider talking about your needs and struggles in a forum that respects you and your child, without prejudice.

8:57 AM  
Blogger Estee Klar-Wolfond said...

Anon,

There are subsidized services in Canada. If you give me your email address, I can send them to you.

9:00 AM  
Anonymous Anonymous said...

Loving your child has little to do with money. I know families with money and those without it, and I see more families without it doing more for their kids by working with them themselves. I think anonymous likes to feel sorry for herself by targetting you. You are doing more for helping our kids than Autism Everyday is.

Autism in Alberta

9:29 AM  
Blogger Estee Klar-Wolfond said...

Thanks Autism in Alberta, but I think that there are many who are advocating much better than I am for the autistic to have a place and a voice in society.

As I said earlier, it strikes me as odd that any parent would want their child to be misrepresented and targetted as less than human, subhuman, not normal, and a burden. I don't feel that way about Adam. It also never ceases to amaze me that people think I can love Adam because I have the ability to provide him one-to-one assistance. I also am surprised that anonymous has not read so far into the blog to know that I create all of his curriculae, and work with Adam myself everyday.

9:56 AM  
Anonymous kyra said...

i'm so glad the surgery is done and that you're feeling better but i'm so sorry you had a reaction! yuck!

the image and you and adam drawing together, and his own wonderful experiments in self expression his own are so wonderful!

9:25 AM  
Anonymous Anonymous said...

That video made me sick. I can't understand why anyone would feel sorry for a woman who'd say such vile things with a smile on her face. I can't understand why they'd donate money to the organisation that would give her a forum for her sugar-coated venom.

If I'd seen those clips without any idea where they came from, I would have felt it was a sure bet some neo-Nazi or eugenics advocate filmed them. (Both groups I keep informed about, as you'd keep your eye on a poisonous snake.)

And they're showing the film those clips came from at the Sundance Film Festival? What's up for next year, Triumph of the Will? I'm sorry; I'm torn between weeping and screaming in rage. The world may be wonderful, but some of the people who seek to sow hatred in it certainly are not.

Tragedy happened in Nazi Germany because too few people spoke out against this kind of thing, and hatred grew and flourished. Every decent member of the human race must speak out to oppose this kind of thinking about any human being, with any attributes you can name. Those who don't will be guilty of complicity in what follows.

1:18 PM  
Anonymous Bonnie Sayers said...

I just found your blog and really like what I have read and agree about the video. I only listened to it for a few minutes and that was enough for me.

I like the name of your blog as well. I am compiling some sites I want parents to check out and will be including yours eventually in an article on my site:

http://autismspectrumdisorders.bellaonline.com

I have a blogspot here but cannot seem to sign in and it does not send you your password when you forget it.

I also have a group where people can post photos of their kids and do articles:

http://autismfamilies.gather.com

7:24 PM  
Blogger Estee Klar-Wolfond said...

Thanks for introducing yourself, Bonnie. I will check it out!

10:22 AM  

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