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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, May 25, 2006

 

On Memory and Forgetting



Hillel of Greater Toronto brought Elie Wiesel two days ago. I had the privilege of meeting him personally, and listening to him talk at University of Toronto's Convocation Hall, a day before Oprah aired her visit with him to the Auschwitz death and labour camps.

The confluence of my recent meetings, travel to Jerusalem to witness many beliefs divided by walls, how co-existence is possible if tended and policed, and how violent fanaticism is the one of the most inhuman of human traits -- merging with the incorporation of The Autism Acceptance Project and its event this October called The Joy of Autism: Redefining Ability and Quality of Life, against this background of recent events: the abhorrent Autism Speaks video, and the murder of three year-old autistic girl Katie McCarron. All of this resounds deeply within me and should within us all.

Dr. Wiesel questioned this complicated time. "How is it that Auschwitz didn't rid our society anti-Semitism for good" he asked rhetorically. We all say, "never again." Most of us vow to stand up for the impoverished, the oppressed. Yet today, like then, when injustice rises up, people can't seem to bring themselves out of their silence. Lessons of propaganda - what it is and what it means - goes unnoticed and sadly endorsed by others. There is still a population that continues to support fanatical messages without understanding what marketing, positioning means. "Good" propaganda must always contain elements of truth -- it sways you emotionally and in a one-sided way. I do not share the opinions of these mothers (who were edited, by the way -- we did not get to hear their complete sentences), and many of you do not share the same views as myself. Yet, the cause, the purpose of the video is to raise money for a cure. The motive is clear. I wish everything was at least as transparent, even if in this incredibly naive way.

Autism Speaks did wrong. NAAR and Autism Speaks continue to do wrong because they continue to exclude the autistic population from its mandate and research. This is why, as former corporate chair of NAAR Toronto, I withdrew my support and sponsorship. Any organization that uses language against the desires of a culture, race, or type of people who have identified themselves as a culture, is immoral. We have learned to be careful about semantics where race and religion are concerned. Why is there so much problem in understanding the inhumanitarian treatment against the autistic? At the utter agony of this population who struggle to be accepted, and to avoid negative labeling, these organizations continue to do so anyway. Many Europeans deemed the Jews subhuman, undeserving of fair treatment. Many people today do not feel that autistic people understand themselves and purposefully exclude them from autism "dialogue," decisions about research, and continue to take away their right to choose and decide for themselves. Some mothers will claim they would rather be dead than living with autism, while their autistic child plays in the background, alive, but otherwise treated like furniture. Their words about their children are selfish -- how it affects them -- and they describe and talk about their children as objects rather than humans. Other parents abuse, neglect and even murder their autistic children because they believe their lives are too difficult living with it. The lists are long in Ontario of autistic children who are abused to get into Mukibaum. "Autism Every Day" is rampant with parents pulling and tugging on their children (a set of behaviours rather than people) amidst quickly edited excerpts. It is a dark video inciting little hope. It disempowers parents so maybe, just maybe, they feel life is no longer worth living with autism. Afterall, the premise of the video is that life is too hard with autism. It has actually enabled others to excuse the murder of Katie because of this premise. I call on Autism Speaks to retract the video and apologize for its offensive marketing of pity. It has done not only a disservice to the autism community, but ironically, to its very own cause. I'm sure many are suspect of this undignified attempt to market autism.

While neighbours stood silently during the Jewish genocide, there are parallels to many injustices today. How is it we can remain asleep? How is it that one of you may be thinking that the comparison between the Holocaust and Autism Marketing is extreme? Germany was financially suffering. Hitler found a whole race to blame for it. Then, that race ceased to be viewed as human. Then, that race was murdered because Germany thought they would be better off without not only the Jews, but Gypsies, the disabled, the "feeble-minded."

We must stay awake to past lessons in every community of race, ability or religion. We must continue to open ourselves to discussion and debate and accept many views. We must learn to respect a type of people, an autistic people, and listen and acknowledge the messages they give to the rest of us, even if we don't always agree or fail to understand completely. The Autism Acceptance Project hopes to empower both parents and those who are autistic through balanced views, with the over-arching belief that all humans have value, deserving respect, support and dignity. You don't have to agree with every one, but you have to accept those who have the same respect and tolerance for you and for others. Any marketing, message, or research that is underway or disseminated must be done with this value in mind. With all of life's lessons in current and past human atrocities, this is our moral obligation.

But the problems of humanity and its inhumanity continue. Dr. Wiesel said this, and he wondered if we were, as humans, all of God's great mistake. And yet, he believes in humanity. In my byline for The Joy of Autism above, I borrowed one of Wiesel's lines: "Despite inhumane acts, I believe in humanity." This value must be our guide.

"We Jews," he said in his quiet voice, "sing. We sing when we're happy, we sing when we're sad." Life if filled with injustice from which we have an opportunity to grow and learn. There is joy and value in all human life. May all parents find this joy, no matter how hard the struggle; may we continue to raise our voices and words against the wrongdoings of NAAR and Autism Speaks and of those whose special interests are doing harm to those who are autistic.

We have the tendency to rest on our laurels and forget. May we be nudged to remember. May a life never live, or end, in vain.

9 Comments:

Blogger Brett said...

Estee,

This post brought to mind a quotation from George Aiken, US Senator from Vermont from 1941 to 1975:

"If we were to wake up some morning and find that everyone was the same race, creed and color, we would find some other cause for prejudice by noon."

I would like to think that this is not true; unfortunately, we see it every day.

Brett

4:19 PM  
Blogger Kristina Chew said...

And may we never keep asking ourselves, why, and what might we be doing wrong?

10:53 PM  
Blogger r.b. said...

Beautiful post!

I am thinking (look out), that the most powerful propaganda has a visual component, a precise message, as shown in the wikipedia post. Gettingthewordout used it, but so did Gettingthethruthout, to a more powerful degree in my mind.

Wish we could do the same with Autism Speaks...

7:46 AM  
Blogger r.b. said...

PS....The Autism Acceptance Project sounds very powerful.

7:48 AM  
Blogger Joseph said...

I call on Autism Speaks to retract the video and apologize for its offensive marketing of pity.

I strongly second that position.

They should be ashamed to have a video that sends a message to the effect that it's unremarkable for parents to be thinking about killing their autistic children.

8:54 AM  
Blogger not my blg said...

"While neighbours stood silently during the Jewish genocide, there are parallels to many injustices today. How is it we can remain asleep?"

I too ask this question; "Who stands with the suffering of the poor and uneducated Palestinian people"? Does Mr. Wiesel support the idea of free determination of these people? If those of us who are educated and caring people do not see the "apartheid" policies of this people, then who will they cling to? The terrorists and rogue states? If we, as autism parents can't see the injustice done to these people, who will?

10:05 AM  
Anonymous Anonymous said...

Yes A.D. - Dr. Wiesel as well as the Israeli government support the idea of self determination for the Palestinian people. Based on today's headlines, it seems that a majority of Palestinians do as well. It seems that the only ones are the fanatics who propogate hatred andf murder. See for example:

http://switchboard.real.com/player/email.html?PV=6.0.12&&title=Friday%20Sermons%20on%20Palestinian%20Authority%20Television&link=http%3A%2F%2Fstream.luxmedia501.com%2F%3Ffile%3Drealimpact%2Fmemri%2Fmemri%5Fv2.rm


By the way, the Palestinian people are the most educated by far of any arabs living in the Middle East.

10:44 AM  
Blogger abfh said...

Thanks for this thoughtful post. It's got me pondering why our society considers culture to be a prerequisite to acceptance. As we know, the pro-cure camp believes that autistic people don't really have a culture and, therefore, nothing would be wrong with removing autism from the human gene pool.

I'm wondering why the default assumption doesn't run the other way, that is, in favor of preserving human genetic diversity. Why should a minority group have to prove that it has a culture in order to justify its continued existence? How can so many people see nothing wrong with destroying a minority group if the eugenicists happen to pounce early enough, immediately after the group's genetic differences are identified, and before a culture has had time to develop?

I'll write more about this on my blog when my thoughts are better sorted.

11:58 AM  
Blogger Estee Klar-Wolfond said...

Anon, yes you are right about Wiesel. Justice for all.

ABFH: yes the word culture is an interesting one in reference to autism. Consider Wiki definitions of "culture":

reflect different theoretical bases for understanding, or criteria for evaluating, human activity. Anthropologists most commonly use the term "culture" to refer to the universal human capacity to classify, codify and communicate their experiences symbolically. This capacity is taken as a defining feature of the genus Homo, though Jane Goodall (The Chimpanzees of Gombe: Patterns of Behavior, 1986) identified aspects of culture among our closest relatives.

I think this applies. I think that people who are autistic unique understanding of one another, a unique way of perceiving the world. And like individuals in every culture, we are all unique, still.

1:53 PM  

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