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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

Monday, April 28, 2008

 

Difference Is Not Deficiency

Well how many of you were thinking what I was thinking yesterday while watching Rev. Wright's speech on CNN? "Difference is not deficiency" was his message as it related to race and religion. The man had me actually sitting upright in my seat, listening, laughing and enjoying every word and antic. I kept wondering why on earth so many people can't understand disability in the EXACT SAME WAY -- autism is a difference, not an illness, an abnormality or a deviance. Those people unfamiliar with my son's excited hand-flapping may not understand it, and may be so inclined to stare at it, and maybe even further inclined, by virtue of the crap they DO watch on Autism The Musical (I took issue with how some of the parents described their children as "ill." Otherwise, I absolutely LOVED the kids and found them so able and talented), or on CNN or whatever, that autism is a disease so that Adam's excited hand-flapping may seem like a pitiful thing to them, just as much as black skin was viewed back in the day.

Yet, as we were flying home from Florida yesterday, and he was watching a video of FRACTIONS (yes, fractions -- and he's just turned six years old), and he flapped his hands, I really thought nothing of it. In fact, I was joyful as it was something he was learning from (the video). And when he's happy, I'm REALLY happy. It’s his difference. When he’s happy and excited, this is how he will react to his environment. Now who on earth would want to “extinguish” that and why would that goal be so utterly important in those so-called early “intervention” programs? What are we “intervening” in? Aren’t we supposed to accept and assist? Please get rid of that term “intervention” – it’s so entirely insulting.

So it was such an irony this morning, when the big headline was "Hope For the Blind."(why I am turning this CNN on, I'm not so certain except to say I want to know what everyone is being "fed" in the realm of popular media)

Ted Turner -- please hear this: DIFFERENCE IS NOT DEFICIENCY. YOU CAN HAVE AUTISTIC NEWS REPORTERS, GUESTS -- YOU DON'T HAVE TO HAVE THE PRETTIEST PEOPLE. WE WILL ACTUALLY ENJOY WATCHING THE NEWS MUCH MORE IF YOU PUT REAL PEOPLE ON CNN.

Okay, sorry for that rant -- back to “Hope For The Blind.” I hope they get a new headline writer on CNN. Why not just say “new gene therapy offers possible sight for the blind?” They responsibly reported that the therapy is very risky, and only tried on 3 people successfully, and had actually harmed others in the past. Through the therapy, blind individuals cannot see fully just like cochlear implants don't enable deaf people to hear like hearing people do. Apparently, there are sounds, but not perfect hearing and in this case some light but not full sight. And still, not all blind people want to see. As Oliver Sacks has written and spoken about numerous times, many blind individuals don't understand why they would want to change a way they have been their entire lives!!! What a possibly frightening experience to have to relearn everything just because someone else thinks it’s better to see than to be blind?

Is this “intervention” and “therapies” for the benefit of others? Is choice a good thing here? That is, giving people the choice to have implants or not? Gene therapy or not? Or is this an expectation and a mandate under the guise of “choice?” In other words, there is really no choice at all. As long as we view the world as a homogeneous place where stronger and faster and the ability to compete is better (on the same playing field), then there is little choice, isn’t there?

As we move forward in our scientific discoveries, I don’t see the ethics getting any easier. But there’s one guide I do follow – it’s the one where when a “cure” is being preached because people think it’s better not to be disabled, or autistic, then it becomes grotesque. It feels Mengele, Nazi, and it frightens me that CNN as a channel has the power it does to dictate people’s lives and the way they think about everything. This is not “Hope for the Blind,” this is gene therapy being offered – and it could be the utter “Hell for the Blind” too.

When will our world understand that there are millions of people who live differently than many of us do? And not everyone wants to live like an American (or Canadian or whatever in the "first-world")? If we really want to know how the rest of the world lives and feels, then we have to watch their channels and read their books and listen, not assume.

I am happy to announce that I am a new graduate student of Critical Disability Studies at York University. I hope to continue discussing the differences in disability as they cross section with our discussions about race and religion, in much greater detail in the near future. Thanks to all of you who supported me through this.

16 Comments:

Blogger farmwifetwo said...

They were discussing chelation on cats, but they aren't calling that, on kids this morning over at Neurodiversity.com and I cringed.. Part of me thought "you're joking right??" but I knew it wasn't a joke. She doesn't joke.

What's the dvd called Adam was watching. I can't say enough about the LeapFrog movies. Math, spelling, reading all made sense to my boys once I introduced them to the concepts the same as the shows. My boys also enjoy the Magic School Bus movies... we don't watch Disney here.

S

12:00 PM  
Blogger Estee Klar-Wolfond said...

Leapfrog as well.

12:50 PM  
Blogger abfh said...

Please get rid of that term “intervention” – it’s so entirely insulting.

Totally agree!

I hope all goes well with your disability studies program, and I look forward to reading more about it.

12:50 PM  
Blogger hollywoodjaded said...

Brava Estee!

1:19 PM  
Blogger Estee Klar-Wolfond said...

This comment has been removed by the author.

2:29 PM  
Blogger Estee Klar-Wolfond said...

I think Harold Doherty is really mad. He's written another WHOLE POST about me.. hmmm...

;-)

2:31 PM  
Blogger kristina said...

You know you are making an impact when you inspire such negativity. Congratulations on getting into the York program!

3:03 PM  
Blogger Estee Klar-Wolfond said...

Thanks Kristina. And kudos to you too. I ordered that book.

Harold calls me a "self-appointed expert," but I'm far from it. I certainly take issue with many autism experts out there.

I look forward to continued learning for the sake of contributing to the dialogue, for change, and of course, for Adam.

3:28 PM  
Blogger Camille said...

I was just looking at the ubermenschen poster. Am I the only one who thinks the two older boys need to be evaluated to see if they are on the spectrum. The seem to be staring.

My point being, even if they try to engineer a superhuman NT race they would still have autistic people in it.

3:36 PM  
OpenID dancingmom said...

Wow, I'm glad I stopped by today. Thank you for putting into words things that I cannot articulate. Best luck on the grad program, too.

karen in ca

3:42 PM  
Blogger laurentius rex said...

I don't think that Mr Doherty is mad, well not in the insane sense anyway, he is just sadly ill informed and parochial about autism, and whilst appearing to defer to authority seems not to understand what it is he is apealling to.

It would be disingenous of me to pretend not to be the intellectual that I am, I can't help it, but there is a vast range of autism related literature out there, and none of us can aspire to read it all, but I manage to monitor a hell of a lot of it, that is my special talent.

4:36 PM  
OpenID missnomered said...

Awesome post, Estee.

I really hate the whole "well, it must suck to be you." sentiment. It's really quite insulting.

And good for you re: the university program!

6:43 PM  
Anonymous Amanda said...

I thought he said "difference is not deficiency". Totally different meaning.

7:49 PM  
Blogger Estee Klar-Wolfond said...

" Wright presented a rather innocuous talk about the differences in human beings and how our differences do not mean certain groups are deficient -- "just different." His theme seemed to be that we should strive to overlook people's differences and work toward reconciliation because we are all made in God's image. Bravo. Who could object to that?" -- D. Rimbaugh -- reporter who also felt that Wrigt's speech was rather innocuous.

I was surprised Obama took such an "angry" stance to the speech. So he's a political animal, after all. :)

7:55 PM  
Blogger Estee Klar-Wolfond said...

So what I mean to say is, with all that's going on in my life right now, you are RIGHT, Amanda.

7:56 PM  
Blogger fledchen said...

Here's my take on the BBC version of that story.

http://multichiropter.blogspot.com/2008/04/occams-scalpel.html

I thank you, as a blind person and as an autistic person, for understanding that I am not deficient because my eyes and my brain do not work the same as those of the majority.

3:02 PM  

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