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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, March 02, 2006


A Sledgehammer or a Song?

I've never hidden my views. I've also proclaimed that I do not know everything there is to know about autism and constantly turn to those people with it on how to teach, on perspective and so forth. I am not here to pontificate. I am here to learn and discover. Through the process I hope I can also become an "ally," as Amanda commented on Kevin's blog. I hope I can challenge other people as well, but often the best way to reach the inflexible mind is slowly, with history, with familiarity, with true stories by those who are autistic -- perhaps my preference is through literature, art and the like. In my view, we need sledgehammer's and we need songs -- I think I'm the latter. Whatever our style, we have to "speak" in a language that suits us best. While it is utterly IMPORTANT to speak up and show the inhumanities against autistic people, there are some people who can't be reached. This is the tragedy. This is why the dialogue can never cease no matter how much it sometimes beats us down.

I've been hinting of the history of eugenics in America. I'm actually quite suprised how few people picked up on that or didn't know what to say about it, or are fearful of "going there." I try and take a stand that shows rather than pontificates. If I say I believe something, another parent will accuse me of "speaking for" the autistic. I repeat: I am learning. The purpose of blogging for me is to share my own little journey in this.

I am speaking to Amanda's comment as I mentioned, in Kevin's blog. She is strong in her response and for that reason, it speaks to me. She states:

"Basically, the autistic people most likely to be harmed by various "therapies" and "philosophies of autism," are not likely to be helped by the "let's respect the opinions of those who are doing this to me" thing. By all means respect people as people, but opinions are something different,and some opinions, some actions (and actions start with opinions), are just not excusable...Frankly when I see people talking about how all parents of autistic kids should have this kind of solidarity, it frightens me. It frightens me because I have seen the results of both parental hatred and parental well-meaning bad things directed towards autistic people, and this is so rarely acknowledged, that good intentions aren't good enough and that some parents do not love their children and that some parents who do love their children still horribly mistreat them....Isn't it possible to both be an example of acceptance and celebration, and at the same time say "No, some things just are not okay?" Isn't it possible to be both loving and take a stand? When people believe that peace is the absence of apparent conflict (while meanwhile the conflict all continues under the surface and harms and kills people and so forth) bad things happen. And most autistic people can't escape those bad things without allies, and where are the allies if they're all going into "sweep it under the carpet mode," if nobody's willing to confront anyone because it wouldn't be polite or validating or parent-solidarity or whatever?"

Amanda, I am so glad you wrote that. I can't say it like you say it. It wouldn't be the same, in fact, coming from me. I don't speak for you, but I can listen, advocate, ally. I can present the work of autistic people in special events, art exhibitions and I feel I need to. I must admit that it is unnerving as a parent who wants the best for her son, to undergo such "confrontation" as you put it -- when one would think that all parents would want the same. Yet, even those sentiments, as you said, do not address the injustices against the autistic population. I can say I want "the best" for my son, and in fact, do what's best for me. This is the semantic issue. It is consistent with Ebohlman's comment, also on Kevin's post:

"`Sincere,' does not mean `correct.' The most passionately and deeply held beliefs are those of bigots, zealots, and fanatics, the people who have the least hold on the truth. Believing that you're right is not the same as being right."

As parents, I think many of us grapple with this all the time. What is the difference between what I want, what I think Adam needs, and what he needs or wants. At this young age, as a custodian of my son, these are difficult decisions for any parent, autistic or not. However, with a child with autism, the issue is more serious. There are too many pulls for insidious therapies, too many organizations that appear to befriend the "struggle" and appeal to parents on this basis that totally ignore the discrimination issues and the voices of those with autism.

So people like you need to keep speaking up for yourselves and people like me need to make way. The truth of the matter is you've just got to keep sending your message to the parents. They are the nucleus of everything for the autistic child -- they are the point at which all views about you in society can possibly be changed.

Kevin, Ebohlman and Amanda -- thank you for your posts, your strong words. They came at a time when I needed them most. I'm going to keep singing.


Blogger not my blg said...

One of the things that is most insidious to me are some researchers who are trying to develop a neonatal test. I actually had a doctor at Duke University insist that I have my son enrolled in a genetic study and then had the audacity to tell me "You'll want to know in case you and your wife decide you want to have another child". I politely told him that I didn't want my son to be genetically tested nor do I see a need to know if I have some sort of gene which might make me decide not to have another child. Let me tell you what he did. My son was scheduled to have a metabolic profile prescribed by this doctor, which I agreed to. But what he did was also secretly order genotype testing on my son to see if he was a carrier of a mutated 15q chromosome. I found out when I received a $3500 bill from Duke for testing. I called the billing department and was told a genotype spectrum analysis was done!!!!!!!!!!!!!!!! I felt like my son had been raped! I called the doctor and told him that he was to destroy the test results and pay the bill himself or I was going to file a complaint with the University. This doctor is Harvard educated and a former head of pediatrics at Boston General Hospital. If you plug his name into PubMed, you will find a lot of published research on autism and genotyping. Today, I received a call from Duke about a March 10th genetics appointment! I couldn't believe it! Anyone have any suggestions as to what I should do can post it on my blog. Sorry Estee for ranting on your blog but your post hit a nerve.

6:08 PM  
Blogger Estee Klar-Wolfond said...

This is very upsetting. It makes me also want to know what the hell is going on. Why are records being pulled without our consent? Why did a test be conducted without your approval? This sounds sinister.

7:09 PM  
Anonymous kyra said...

to alexander's daddy: wow. that is VERY upsetting. so unscrupulous and unethical!

to estee, i say: keep singing!

7:13 PM  
Blogger Estee Klar-Wolfond said...

Thanks, Kyra. Until we go hoarse?

7:17 PM  
Blogger Stephanie said...

"Until we go hoarse?"

If necessary, and with some that's what it'll take, but some people will hear us, believe us and join us...when one goes hoarse, the rest of us can sing more loudly until they regain their voice.

7:42 PM  
Blogger Stephanie said...

alexander's daddy,

I suggest you talk to a lawyer and file a complaint...probably several. Something's very wrong with that "doctor."

7:43 PM  
Blogger ballastexistenz said...

As a Peter Gabriel fan, I always thought "Sledgehammer" was a song. ;-)

2:00 PM  
Blogger Estee Klar-Wolfond said...

See! There you have it!


2:47 PM  
Anonymous Anonymous said...

Liz here from I Speak of Dreams.

Chris Locke is writing a book on the eugenics movement. The blog about the book is at Mystic Bourgeoisie.

It's in Chris's...uhm..multimedia style, so it may take a bit of getting used to, but do check it out.

3:15 PM  

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