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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, February 01, 2007

 

The First Step in Dehumanization

A Credo For Support (People 1st version)


In April, I am going to Aushwitz and Treblinka. It will be a difficult trip as I have another story to tell outside of autism, but that's for another time. For many reasons, I am profoundly affected by prejudice and labelling that dehumanizes people. In Europe, the first step to dehumanization was to make the Jewish people wear the Yellow Star of David on their clothing. The second step was to take away their ownership. The next, to ghettoize them -- you see, people were not ready to accept instant extermination of the Jews. It had to be a process. It was the process of dehumanization that is disturbing me greatly, and this post is intended to make us all think critically, of how we may be naively doing the same thing to disabled and autistic people.


It may seem benevolent to seek a cure for autism, if you believe autistic people are ill, if you believe that you are helping them through research by "solving a puzzle." But ask yourselves this: when you refer to humans as a puzzle, are you also stripping away of piece of their humanity -- suggesting that with autistic people, a piece of them is missing? This is not a healthy way to represent autism. Humans are never a puzzle and we have to consider how attitudes are shaped by representation. If you think language and symbols are trivial, and not that important, think again.



I think if you want to do something right, if you need a logo, use the rainbow, the circle, any symbol that accepts diversity, that denotes that we all belong and we are all equal.



Please read other responses to the way Autism Speaks conducts its marketing. Just click on each number to begin reviewing:
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There are many more people who are disturbed by the marketing and goals of Autism Speaks. I'll leave it up to you to search for more.

7 Comments:

Blogger Sam I Am said...

While I am NO fan of Autism Speaks, and have written many e-mails to them to remind them of that, whenever a comment or article on their site pops up that I do not agree with.

But...here is what I believe the puzzle piece resembles. I believe that it signifies how unique we all are. Every puzzle piece is different. Two puzzle pieces that are alike can not interconnect with one another. They must each be different in order to connect, at that one special spot. Each are special. And...putting a puzzle together creates a beautiful creation. Each of our little ones with Autism are unique. They fall all over the spectrum.

But, to connect them together does not make each piece the same. They come together to form a puzzle, but still keep their unique beautiful shape.

While some use the puzzle piece as a mystery about our kids with autism, I look at its beauty and uniqueness and yet connectedness (sorry, not a word) that it gives the word autism.

I wish you well on your difficult trip. My husband has been to Aushwitz. Wish it was for whatever better reasons. I also loved your painted and connected hands and Elie's quote. I loved the book Night, and have shared mine with many friends. Shalom.

4:33 PM  
Blogger Estee Klar-Wolfond said...

Thank you for your viewpoint. I find it interesting that there are different interpretations of that symbol. For many autistic people, it represents that "something missing," mystery piece, and a quest to find a cure for autism -- to "obliterate it." What does that mean, I think we have to ask. When we seek to obliterate, cure, remediate, prevent autism, what are we losing? How do we prevent? By preventing future births of autistic individuals?

So that's where I'm coming from. I am personally very cautious when large organize market fear and pity in the name of a cure -- a cure that could result in losing so much. The approach is much too cavalier for me, as we do not fully understand autism.

I would, however, be willing to cooperate with an organization that self-reflects, includes autistic people on every aspect of policy-making and other initiatives that involve them, as I have myself learned so much from many disabled and autistic individuals in how I view disability.

I know this is very complex for some people. I prefer if we are to "raise awareness," we change the symbols and language to state that we appreciate all human beings and we seek to give them tools, respect them, accomodate them. But we can't do this without them, for to do so would be basing it all on our assumptions about what it means to be disabled, and we are learning that many of our assumptions are wrong.

Thanks again for your view.

4:44 PM  
Blogger Fore Sam said...

Estee Dear, Autistics are missing methyl B-12. They are missing in because mercury prevents them from making it. That's why so many kids improve when it is added. The problem is medical not societal. How many times am I going to have to explain this to you before it sinks in?

8:27 PM  
Blogger Natalia said...

I used to think the puzzle motif was a good one, because sometimes I think everything is a puzzle, but then I realized it's used to say that we are the puzzle, and not life in general and I think that's kind of the opposite of what I originally thought it meant, when I sort of liked it.

I used to have some kind of morbid wonderings because of being part jewish and part german, wondering about how maybe some of my distant relatives had killed other distant relatives in the holocaust. And then my husband said, "If you were latin-american like me, you would know for sure that you were part conquereror and part conquered, part victim and part murderer." So I thought that was so interesting, not in the sense that genocides would ever be OK, but in the sense of "never again" being a really difficult thing to ever happen, because there is so much of this in past and present human history.
I don't think visiting Camps is morbid, btw. I think in this day when denials are getting more and more common (?), that it's even more important to "never forget" as that should help with the "never again".

8:58 PM  
Blogger Estee Klar-Wolfond said...

Visiting camp is an important observance -- "to bear witness," as well as a remembering.

As far as the puzzle logo is concerned, I find it fascinating how the past two comments have interpreted it. My take was from autistic people themselves who have stated: "I am not a puzzle." Further, Bob Wright has stated "I want my grandson back." That statement effects so many people. I would prefer an Autism Speaks acknowledgement that if we must search for answers, we do so by respecting the autistic people who exist, who do not appreciate that Autism Speaks doesn't seem to be listening to them. I still believe that with promoting respect, dignity, the potential of every person, by watching the way we "market" our funding of research, we can achieve much more without obliterating personhood.

By respecting, by asking people who are autistic what it is they need, then we can actually help assist.

All I am trying to do here is to get people to reconsider the economy of pity, the money machine of charity, and what kind of "benevolence" we are really "bestowing" on people. Having worked for chairties, as a Director of Corporate Giving and as Marketing Director I am very familiar with their modus operandi of charities. In the case of terminal illness, like cancer, heart disease, leukemia,the idea of marketing for a cure seems natural as we all value human life and wish to save them where we can.

When I put Adam to bed at night, and I ponder my words, I know one thing for sure: that Adam is everything to me. He could have a terminal illness and that would be truly devastating, not his autism. I bet that any parent who has to face that reality would trade it in for an autistic child any day.

Yes, I am just as worried some days about Adam's future as any parent -- I don't have the blinders on -- but I really want a world for Adam that doesn't sensationalize him at his expense, and a world where he can participate, where he can get into a school where he is appreciated, where he will be educated in a way that befits him, and as much self-determinism as is possible. On that note, there is much more communication that goes on in terms of will and determinism than is verbal.

If he couldn't participate in those decisions about his life, I want a world where his dignity and rights as a person are protected, where he could learn past the age of 21, where he could work with his disability... I think we all want that.

9:54 PM  
Blogger Natalia said...

i agree about "bear witness"; i had forgotten that term.

also agree about future supports. whether i personally ever need any or not (you never know), i think they are a good thing that ppl who need have a right to.

6:28 PM  
Blogger Sam I Am said...

Estee, while I truly appreciate your opinion as well, you musn't discredit that there are many people doing what you are doing, to advocate for autistic people as well, and working with them, along side them. It is not "too complex" for me to understand. I do, I just have witnessed the other side too many times. While I don't have the resources that you do to do the things financially that you can do for advocacy, myself and many others like me are in the trenches doing the hard work for our kids with Autism. We are providing support groups for families new to the diagnosis who have limited education and resources and support. We are creating local libraries stocked with autism books for families to check out free of charge. We are providing local message boards for resources of doctors and therapists who understand Autism. I am on policy committees for organizations like ARC and our Autism society in my state in the United States, working hard for legislation to provide them equal ground in all aspects of their life, from medical, educational, to housing. We too have individuals on the spectrum to represent a very loud and proud voice. But you must be careful how you represent, if you don't talk to all sides. I have worked along side autistics who are now grown adults and some with their own children who also have autism, who they themselves are proud to wear the puzzle symbol, for many of the reasons I had stated as well as the awareness piece. They wear them when they speak to the legislature as well (not the Autism Speaks one). They too are cautious of organizations like Autism Speaks.

One thing that many of the autistic parents who also have children with autism have expressed, is that they DO want people and organizations to help be a voice for their children. Some have said they remember how hard it was when they too didn't speak and could not communicate to others their wants and desires. There are many autistic parents who have also said they wish their own children who now have autism like them, how they wish their children did not have it and have to go through the stuggles that they too faced.

On the other side of the coin, I too have worked along side those voices which you are representing and understand from that side as well.

I think to truly appreciate the lives that not only our children lead with autism, that we have to look at others who have autistic children like us but who do not have the resources for their children, the proper therapies, and such that you or I have. To not have anyone to rely on for any respite care, to not have insurance that will pay for speech or OT or ABA, to not be able to put your child in the best school they deserve because you can't afford it or can't afford to fight the system to get it, to not know what to do when your child harms themselves daily because of their behavior, to not be able to ever understand your child. There are many out there like that, we know that, we read it in the Autism Google news almost weekly it seems, when they resort to abuse. When we can truly walk a day in their (people in the autism family who don't have what we have) shoes, then and only then can we really begin to appreciate the true diversity in the autism community. Then and only then, can we really understand how we can best give them the dignity and support that they yearn for. Only then can we be "in a position to observe it" and truly bear witness.

10:53 PM  

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