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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, June 13, 2008


What Can We Learn From "Jerry's Kids?"

What can we learn from Jerry's Kids? A lot, I'd say. How often do we hear relentlessly over and over and over again that so-called "high functioning" people do not have a right to talk for all autistic people as if they are "taking away services" rather than adding to better the quality of life for everyone?

Here are some myths that need dispelling yet again:

1. A non verbal person can often read. These are people often called "low-functioning," but they can often learn to communicate via augmentative communication methods. Very often, these possibilities are not tapped because behavioural interventions are sought first -- the typical response is sought instead of enabling the autistic response;

2. Some parents call their children low functioning when they are higher functioning than my son Adam. I've heard parents in the beginning of our journey who said they would "institutionalize" their child who could talk more than Adam could. Some call their children non verbal even though they speak fluently, because they may have trouble with following directions. This is mis-labeling, so we cannot trust the use of labels used by many advocates;

3. We should not assume that "richer" people have more access to services and therefore can "cure" their children easier. Yes, one can hire private shadow support, and other therapies, but do not assume that a person who has more resources does not want to advocate for full inclusion and support of autistic people, and make this accessible as a right for all. At the same time, "richer" people have also wasted a lot of money on "therapies" that have not enabled their children to the fullest extent;

4. Biomed autism advocates like Jenny McCarthy's TACA group need and use "higher-functioning" autistic people in their statistics to try to prove there is an "epidemic" on the one hand, while stating on the other that they are not "severe" enough to speak for autistic people.

Okay, I could go on with the hypocricies, but it's better to show than to tell. Visit the website, for a little history lesson on "Jerry's Kids." Watch how some disability rights advocates are blamed. Sound familiar to autism???

The movie trailer can be watched here. When you watch it, you'll understand why I don't walk for Autism Speaks.


Blogger Sharon said...

I remember watching the telethon every year and even donating money some years. But I don't remember hearing many stories of adults.

And what does the money go to? With all those millions and still no "cure?"

8:37 AM  
Anonymous Adi said...

There is no cure. You can't cure humanness.

Thanks Estee. Good reading, as allways. The low/high functioning argument is probably the most disabling entity right now for autistics.

9:28 AM  
Blogger abfh said...

Sharon wrote:

And what does the money go to?

Developing prenatal tests for muscular dystrophy genes. Every year the screening tests become more accurate.

10:54 AM  
Blogger VAB said...

I've never understood this verbal/non-verbal stuff. I would have thought that, if a person communicated with words (even a few) they were verbal, and if they didn't use any words, they were non-verbal. But, as you say, all kinds of people who can communicate with words, including people who communicate through spoken words, get called non-verbal.

I never used these terms myself. When our guy did not speak yet, we said, "He doesn't speak yet." When he didn't speak much, we said, "He doesn't speak much." Now that he speaks a lot, but his language is a bit different than the average kid's language, we say that, "He has some trouble with language." I think we get much more information across with those short phrases than we would with "verbal"/"non verbal" and we avoid giving the impression that we are talking about a walking medical condition, rather than a a wonderful and interesting person.

1:09 PM  
Anonymous Anonymous said...

Woohoo, lay it on 'em Estee!


1:13 PM  
Blogger geosaru said...

"Some call their children non verbal even though they speak fluently, because they may have trouble with following directions."

Really??? How odd. There are times when I can't speak, or have limited speech, but never have considered that to be non-verbal...

Lots of good points, summed up well here.

2:40 AM  

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