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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

Sunday, May 21, 2006

 

Da Code, Da Belief, Da Danger




My recent trip to Israel on a United Jewish Federation Prime Minister’s mission was too short. A mere nine days, cut short because I didn’t want to leave Adam for the entire twelve, was filled with snapshots, images etched in my memory forever.

I think everyone should go to Israel and start in Jerusalem. I landed at the King David hotel, opened my French doors to overlook the walls of the Old City – a mere square mile inhabited by 35,000 Muslims, Jews, Christians and Armenians literally on top of one another.


The Old City Posted by Picasa

I started at the Dead Sea – a visit to the Masada where 965 Jewish settlers felt it was more important to die for one’s freedom than to surrender to the Romans. Then to Qumeran – the home of the Dead Sea Scrolls – where this cultish sect of Jews maintained the very Jewish traditions that are kept, more or less, today. The fine invisible thread of a people, in fact of all people, and this seabed of belief, lies here in the dry hot dessert.

After floating in the Dead Sea, I slept the rift in time away. The following day I went to the Old City, walking through slippery lime stone streets to the Church of the Holy Sepulchre and touched the ground where Christ was crucified. I walked about the Church, now divided into spaces owned by various Christian sects, walls built to illustrate regions of ownership within a formerly gothic style church – its flow entirely disrupted. The Greek Orthodox community owns most of the church now, but the keys to all the holiest Christian sites are held by a Muslim family – considered non-partisan enough to keep an equality and peace among the divided sects of Christians.

I walked through the Muslim market, to the Cardo (the Jewish market) and in one day, I visited Christ’s tomb and then prayed at the Western Wall. High above that is the Dome of the Rock -- the holiest place for the Muslims as it is thought to be where Mohammed ascended to heaven. That very evening, upon returning to the Kotel (wall) for Shabbat, watching the most religious (Hassidim) of Jews dancing and praying at the wall, I heard Church bells and Muslim prayers over speakerphone under the full moon -- a collision of smells and sounds in the cool evening air. If one listened carefully, the murmurings of history, the prayers -- the sentiments of faith could be heard.

I was here at a more peaceful time in Israel, knowing how dissention and violence can errupt at any moment, but for now, kept at bay by the seam line and the many police stationed around the the old Temple, where Palestinians sometimes throw stones at the Jews praying below. Coffee shops and restaurants are now guarded by security, so when I walk past the Hillel Cafe that was bombed just a short time ago, now rebuilt and filled with customers again, I can rest, a little, knowing that there are now people on the lookout for suspicious characters strapped with bombs.

I rode past the site near Gilo where a bus filled with children going to school was bombed -- the man thought to have spent the night in a neighbouring Arab home.

Jerusalem to me manifests human paradox – to co-exist and yet remain divided by this great ideological divide called belief. Religions claim ownership to holy sites, and other sites are deemed holy by those who want to believe (there is more than one burial site for Mary, for instance). People interpret scripture, and it too has been re-written. On the eve of the Da Vinci Code’s movie release and the idea of the quest for one truth, we must always remember that according to mankind, there is always more than one. Belief is the engine behind such quests and the etchings left by man the multiple truths of many beliefs. Israel epitomizes cultural and religious tolerance despite the violence. The violence epitomizes the dangerousness of belief -- the warbled footings of a human construct.

I have caught up with the news of the past days and the video distributed by Autism Speaks, "Autism Every Day." It is a repulsive video, a type of religious zeal taking away the dignity of a child, of many people with autism and example of how belief can ruthlessly expend human life, or the dignity of it. What is understandable is the "loss" in the sense that we all have to reframe our expectations in life. What is not, is the positioning of the video, the parents who choose to view people with autism as a loss. We can all choose to view and act positively or negatively in life. We all face the same challenges. I felt sorry for all the kids who had to hear their parents talk about them in that manner on the video. A child does live up to their parent's expectations. These parents have very low ones.

Marketing "religion" as this video does, is unforgiveable -- this shameless act of marketing pity to make a buck requires a vigilant response from all of us. As innocent and heart-felt as this video may seem, and in because I'm talking about Israel I will say it here: a visit to Yad Vashem (Holocaust Memorial) made me remember how inoccuous belief appeared on the surface of all European citizenry. It was a belief that the Jewish people were at fault for lowering their economic status, and were subhuman. In the case of these parents, there is no excuse to talk about one's child in the way they have here, or to mention that the only reason you didn't drive off the Washington Bridge (in front of your child) is because of your other neurotypical child waiting for you at home. The positioning of this video is classic propoganda.

In the fractionalized community of autism believers, this religious phenomenon of belief is no different. The complexity of human functioning is like the cracking of a code. Some scientists and autism organizations continue to perpetuate the idea of a “mystery” that requires de-coding. New codes are cracked about genetics and neurology and sects are created. And, as we come closer to "knowing," we begin to have an enormous responsibility to protect and covet all human life.

I prefer to believe that all life is incredibly awesome. At the end of all these paths, do I really need to know what causes autism? Does it really make a difference to know why Adam does the things he does? Or is it our exploitive curiousity? To what end do we study autism to the extent that we do? To help? At whose request -- the mother who might take the life of her autistic child becuase her life is too "hard?"

With knowledge, may be all beget wisdom.

10 Comments:

Blogger notmercury said...

Welcome back Estee,
Great post.

8:22 PM  
Blogger Em's Mom said...

Estee,
Thank you so much for this post. Your voice speaking for those of us who can't find ours or who speak in different tongues.

7:45 AM  
Blogger Wendy said...

Welcome back! Glad to hear you had a good time.

1:01 PM  
Blogger ProudASDmom said...

Hi Estee,

First, I want to thank you. I am a long time reader and you have helped me on the road to acceptance of my wonderful and amazing son.

I am a long time reader and have not felt compelled to respond until now. I too watched the video Autsim Every Day. I, unlike you, felt vast correlations in the struggles the parents face daily...especially when the parents talked about the safety issue. I agree we can choose how to respond to our child's unique way of being. The mother who spoke of the bridge was clearly desperate- I am not sure that child should be in her care. I believe she is an extreme and does not represent the majority of parents of ASD children. With this being said, however, I know the mothers I speak with can relate. They can relate to being concerned about safety, they can relate to being sleep deprived and they can relate to not knowing what will happen to them when they are gone. The general public does not see these concerns, so perhaps this video can get this message across. You are very lucky- many of us cannot afford to leave our four year old child for nine days. And I do not mean just financially. That kind of break allows you perspective many of us sleep-deprived moms may not have. I am also forced to think of your comments on the rational for knowing the basis of Autism. I do not believe it is for our own exploitive curiosity...but rather for the hope that maybe we can seek to understand more. For if those in our past did not seek to understand more, perhaps we would still be known as Refrigerator Mothers...I do not believe that exploring the origin of my son's difference will in anyway change the fact that he is amazing! I know I did nothing to cause him to be different and I am so grateful that we live in an evolving society that realizes that now too. Perhaps with even more understanding, more doors will open, more families will accept and love their ASD child.

Anyhow, thanks for your thoughts and time! I really appreciate all you do!

12:08 AM  
Blogger Estee Klar-Wolfond said...

Proudasmom,

Thank you for these comments. You are absolutely right. The video was truthful in the way we all feel as parents, including myself.

Let me tell you what propoganda is: all great propoganda contains truth. It is what sways vast communities. The problem with propoganda, and it is clearly evident with the fast editing, the dark music, the POSITIONING of autism as a negative in order to solicit companies for money for cures, is that it did all these mothers a complete injustice. It does autism and people with autism a huge injustice. It does my cause an injustice because while positioning autism this way, it marginalizes my son as a human disaster. I don't believe that is true. And the most horrible injustice is done to that little girl who heard her mother say she would have driven off the Washington bridge. It is utterly offensive to talk in front of any person like that, and to assume that that girl is like a piece of furniture, incapable of understanding what her mother says about her. We all know from autistic adults that this is untrue.

I am offended at the dignity taken away from these children in this video. I am painfully aware of the push-pull of the parent who treated their children in the video as badly behaved children, with no regard or mention of the sensory needs of these kids.

Morally, that video is wrong. It is wrong to ignore of culture of autistic adults who can advocate for themselves. It is a human rights violation and it is utterly wrong not to stand up for what is right.

So yes, are there grains of truth in that video, yes. We all worry about our children's safety, the world does not understand autism, our friends do not entirely understand what it takes to help our children in an intolerant society, the costs of raising our children is too high. But this video does not answer this or solve this. This video continues to position our children as ill and incapable... a tragedy and they are not.

We all have choices to make. We all need to advocate for the rights of our kids to be educated, challenged, tolerated. Our children know innately, intuitively, how we feel about them.

This is why the video is so wrong.

6:53 AM  
Anonymous MattsMom said...

Thank you Estee and for all the Autism bloggers who express their thoughts so eloquently.

I have yet to watch the video b/c I know I will be outraged.

When I tell others my son is autistic, I make sure I am smiling and that my voice sounds joyful. I don't want to see their brows furrow or hear the 'tsk' that follows. I admit, it took me about 2 years to get to that point, b/c I used to long for the sympathy of others.

Faith is a good thing. My turning point was when I finally realized that God was not punishing me with an autistic child. He trusted me enough to give me this child and I won't let Him or Matthew down.

Loved your post on Da Code and Israel. Bless little Katherine McCarron.

11:35 AM  
Blogger Ian Parker said...

Estee wrote: "At the end of all these paths, do I really need to know what causes autism? Does it really make a difference to know why Adam does the things he does? Or is it our exploitive curiousity? To what end do we study autism to the extent that we do? To help? At whose request -- the mother who might take the life of her autistic child becuase her life is too "hard?"

I don't know if Adam might benefit from research. I definitely think my daughter could benefit. She has several medical and SI issues that may be related to autism.

To paraphrase a comment I left on Kev’s blog, are we really sure that there is only one idiopathic autism? If so, based on what scientific evidence? Those searching for the underlying genetic explanation suspect that there may be as many as 15 or more genes involved in several potential combinations. If so, then the potential for more than one type of autism based on genetics alone, excluding vulnerabilities to other factors such as immunological issues, is not far fetched.

How many autistics have SI issues? Are they a comorbidity, or do they drive much of the autistic presentation? What about epilepsy? Or GI tract issues? Are they related? Until someone makes the effort to at least properly list and quantify the comorbidities, we cannot say that they are comorbidities and not essential to certain 'sub-types'. We can only assume, based on an inadequate understanding. We will gain an understanding through research.

Further, the potential existence of medical – as distinct from behavioral – characteristics of autism or autism 'sub-types' does not automatically suggest that autism is or is not a valid state of ‘being’ or that it should be ‘cured’. But if certain medical conditions do turn out to be related to some sub-types - and are properly investigated - this may one day allow for the treatment of what are today considered comorbidities, without negatively impacting autistic intelligence, but instead improving the quality of life of those who choose to pursue treatment. What if SI issues, for example, are treatable without compromising autistic thought? Is this not worth exploring? But if we close the door to research, we’ll never know.

5:30 PM  
Blogger Estee Klar-Wolfond said...

Of course I believe it is. Yet with every research path leaves a plethora of ethical questions, the most basic being, what does it mean to be human?

No matter what comes of research, the fact that I accept Adam, that I believe that all humanity has value and deserves respect and has rights to be loved, to be educated, will never change because of the research. I do know a lot about Adam without it.

6:57 PM  
Blogger Estee Klar-Wolfond said...

That said, with research that supports human value on every level, we can alter negative perceptions and further understanding about autism. But let us never stop debating what the research really has to offer in the way we respect and value human life.

6:59 PM  
Blogger Phil Schwarz said...

The mom who spoke on the "Autism Every Day" video (with her autistic daughter on-camera, within earshot) about thinking of driving off the George Washington Bridge with her autistic daughter, but being dissuaded because her "normal" daughter back home needs her... is not just another mom on that film. She is Alison Tepper Singer, the executive director of "Autism Speaks", the organization that *produced* the "Autism Every Day" video.

Something is *very, very* wrong here.

1:23 AM  

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