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alex
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06 Aug 2008, 11:46 am

I can't find the original post on the Joy of Autism blog for this essay so I'm pasting the archive I have in my RSS reader.

This is written by Estee Klar-Wolfond.

Note: this was not written by me so it doesn't necessarily reflect my own view. Granted, I don't like McCarthy but I don't think I'm the one making her cry. Not sure if that's what Estee is insinuating. Maybe she took it down because she felt it was easy to misinterpret. If that's the case, I apologize for reviving it. EDIT: I've reread the essay and I think it's clear that she's just posing the question to people, not implying that we're making her cry.

Quote:
A couple of years ago now, I wrote the essay The Economy of Pity. I wrote it when I began engaging with autistic adults and read their work. Deeply embedded within me, from a father who studied philosophy, was a disconnect about charity and caring. Walking on the street, I would wonder how much people really cared about the homeless man they threw a buck to. I thought, should I give? Am I an awful person if I don't? No matter what I did, I had mixed feelings. I got to knew many of the people who threw the money, and engaged in conversations to discover that the reason they gave is because they felt sorry for the homeless man without understanding him at all. Therefore, I had to conclude that, a person who gives money to the homeless wo/man on the street feels and unexamined guilt. A person who transcends guilt and spends time with the person on the street, spends time to understand the issues, and gives of themselves, really cares.

As many of you know, I am not a fan of the new McCarthyism. Jenny McCarthy is a lively, dynamic young woman, to be sure. She is the partner of Jim Carrey who made me chuckle recently in a photo of himself in her bathing suit -- caught in those trashy magazines one never buys but flips through when you forget to take your book to the hairdresser. As Dumb and Dumber, McCarthy and Carrey are the perfect couple (hard to believe Carrey could make a 10 million dollar pay cheque from that flick). But if who and what we admire and pay reflects ourselves, we are the ones to blame for celebrities who believe they have the knowledge to speak on behalf of us. Only because we want to "see" them, do we pay them ridiculous sums of undeserved money.

While the McCarthy/Carrey antics can be charming, their smiles, dazzling, and their pocketbooks stuffed full of our own stupidity, does Hollywood success give someone the right or authority to speak on behalf of autistic people and their families? What work has Jenny really done to understand what autistic people want? In fact, she seems to speak out against them and their wishes as a community. How much does she work in autism to bolster her own celebrity? How much does the public really want to pay for that? Don't you feel used?

Because many of us don't fit her own personal marketing model, it is easier to ignore us. Is it easier to deny that there are autistic people and thousands of families who do not admire her outside of her clean cut blonde hair and perhaps, other physical attributes she displays as liberally as her own ignorance, as an "advocate," a "warrior" or whatever she has now proclaimed herself to be? How disappointed I was in this CBC reporter, similarly starstruck, (except that he did note that Jenny needed a Prozac moment to calm down).

In the interview, Jenny perk-ily goes on about unproven theories and continues to misinform the public about real facts. She puts herself first because she feels she has a right to as a "mom." No parent has this right to speak on behalf of autistic people or their families! She may relay her own assumptions, but must qualify them as such. She has no right to promote dangerous therapies, remedies or theories. Too many autistic children are being hurt because of what she is promoting! She doesn't even understand that autism is not a disease! No, Jenny, don't cry for us. Don't cry for those families you say you do. In fact, take a good long look in the mirror and ask yourself -- are you making them to cry?

[youtube]http://www.youtube.com/watch?v=A1u1rOVzkEc[/youtube]Finding the joy in life with autism.


Let me know if you find the original post so I can link to it.


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slowmutant
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06 Aug 2008, 11:59 am

Ad hominems against Jenny McCarthy are pretty low-class. And juvenile. She's trying to do some good things the only way she knows how. Jenny may not have the correct information but that's no need to tear her down like this.

Who are you to criticize the activist spirit?



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06 Aug 2008, 12:13 pm

The problem with the activism that is currently going on, as was discussed a bit in another thread recently, is that it is leading to actual harm. There is a level of hysteria in the parenting community (in general, not just parents of ASD children) that is resulting in very poor and often destructive choices. Information is great. Awareness is great. Fear is not. And Jenny is spreading FEAR, despite the fact that she wishes to spread hope, it simply is not the case. What parents are hearing makes them AFRAID in many, many ways.


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06 Aug 2008, 12:13 pm

The "activist spirit", in the wrong cause, can be a dangerous thing, slowmutant. What were the Crusades, after all, than the "activist spirit" of Europeans, harnessed in the service of the Papal ambitions of the time? And the Conquistadores, with their wholesale destruction of South and Central American cultures, were certainly "activist"...

Would Ms McCarthy only use her "activism" in the service of scientific thought, rather than rumor and innuendo, we would sing her praises indeed, I would think! Sadly, this has not yet come to pass...


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slowmutant
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06 Aug 2008, 12:28 pm

I see. So Jenny McCarthy is like the Holy Crusaders in that she's a murdering, torturing juggernaut of doom. And what she's doing is wrong because you don't like her very much. Okay, I understand.



alex
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06 Aug 2008, 12:42 pm

slowmutant wrote:
I see. So Jenny McCarthy is like the Holy Crusaders in that she's a murdering, torturing juggernaut of doom. And what she's doing is wrong because you don't like her very much. Okay, I understand.


Not sure I understand how you've come to this conclusion. What she's doing is wrong because it's wrong, not because of her personality. I don't know her personally and I doubt anyone else in this thread does either but she's spreading unscientific fear to vulnerable parents. That's a pretty serious problem regardless of whether or not her intent is to help people.

And you're the one who made the comment glorifying the activist spirit as something irreproachable. The comments about the holy crusaders were only made to poke holes your claim that the activist spirit makes a person beyond reproach. Those comments had nothing to do with Jenny McCarthy herself. You're the only one who made a leap like that.


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06 Aug 2008, 8:20 pm

she sure does speak with her hands alot and plays with her hair....hmmmmm :wink:



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06 Aug 2008, 8:25 pm

I'm now listening to the Defeat Autism Now part and I just mis-heard her thinking she said her doctor prescribed prozac for her penis so had to do a rewind.

Edited to add more.

I hope Jenny really understands that autism is never really cured. I am happy she is helping her son. It's not all about speech either and she seems to think that speaking means cure. Not true. Some are speech delayed. Just because an autistic child is speaking doesn't mean the child is no longer autistic.



slowmutant
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06 Aug 2008, 8:39 pm

DeaconBlues wrote:
The "activist spirit", in the wrong cause, can be a dangerous thing, slowmutant. What were the Crusades, after all, than the "activist spirit" of Europeans, harnessed in the service of the Papal ambitions of the time? And the Conquistadores, with their wholesale destruction of South and Central American cultures, were certainly "activist"...

Would Ms McCarthy only use her "activism" in the service of scientific thought, rather than rumor and innuendo, we would sing her praises indeed, I would think! Sadly, this has not yet come to pass...


Jenny McCarthy is not a scientist or a philosopher. Just a famous mom. Though her methods may be in error, they are motivated by her love for her child and concern for others. Facts and protocols and techniques can be re-learned if necessary, but the activist spirit cannot be fabricated or falsified. I wonder if her inner circle of friends and colleagues feels this way, also. It would be a shame if Jenny had yes-men who tell her what she wants to hear and not necessarily what is true.



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06 Aug 2008, 8:54 pm

catspurr wrote:
I'm now listening to the Defeat Autism Now part and I just mis-heard her thinking she said her doctor prescribed prozac for her penis so had to do a rewind.


DAN is raising awareness for autism, lots of it. There is no such thing bad press, they say. Defeat Autism Now may be a non-literal expression. This so-called "defeat" of autism is probably just about "defeating" all the pain & suffering associated with autism. I think it's a given that no one expects autism to be eradicated. A lot of autistics identify with their autism, I've noticed. To defeat autism is to defeat the individual ... or is it?



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06 Aug 2008, 9:51 pm

I can assure you that DAN is one of the most dangerous groups out there, because they actively endorse dangerous and painful treatments and claim to be able to completely cure/eradicate autism, as well as lying about what autism is.



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06 Aug 2008, 10:30 pm

Is that so?

You're not just biased against DAN, are you?



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06 Aug 2008, 11:07 pm

slowmutant wrote:
catspurr wrote:
I'm now listening to the Defeat Autism Now part and I just mis-heard her thinking she said her doctor prescribed prozac for her penis so had to do a rewind.


DAN is raising awareness for autism, lots of it. There is no such thing bad press, they say. Defeat Autism Now may be a non-literal expression. This so-called "defeat" of autism is probably just about "defeating" all the pain & suffering associated with autism. I think it's a given that no one expects autism to be eradicated. A lot of autistics identify with their autism, I've noticed. To defeat autism is to defeat the individual ... or is it?


Ummm...why are you on the defense when I didn't even say anything against DAN?

...and yes there is such a thing as bad press. If you take a look at what Jenny even said about associating her child with Rainman as though it was negative, she got that from watching a movie. Maybe it's not about the bad press but there is such a thing as misrepresentation and when there is money on the line...what kind of awareness is generally spread?

You want to know what I've heard on the streets about autism?

"Eliminate protein from an autistic child's diet. That's what Jenny says!"

Actually the person got it wrong, misheard of course.

"Being autistic means you are retarded."

"It's awful what parents have to go through, I'd kill my child if I had an autistic one"

"Autism is learned behavior"

"Autism can be controlled and cured. If your child isn't cured then it's your own fault."

"After watching Dr. Phil, if I found out I was going to have an autistic child, yeah I'd abort. Who can put up with a monster like that?" (Topic about prenatal screening)

Also what Dr. Phil did not talk about is that the child also had tourettes and other issues along with autism :roll:

What this bad press is doing really is setting up more isolation, more exclusion, more fear into people who STILL don't know much about autism.

There is rarely a special that discloses what is really making the children or adults meltdown. What's going on. No compassion for the children. So what awareness is being spread?



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07 Aug 2008, 12:14 am

The adage that "all publicity is good publicity" is pretty off in this particular case. What we need is more solid, clear-headed information about autism, and Jenny and DAN! just add more hysteria. I think truly good autism awareness should be manay things, but first of all it should be correct. Jenny and DAN! are dangerous to autistic children because of the promotion of chelation, a dangerous medication which is not approved for autism treatment. They are dangerous to everyone because of the anti-vaccination agenda which puts us all at risk for preventable diseases.

Also, wasn't Jenny saying that Evan was "recovered" just a few months ago? Why is she chelating a "recovered" child? Someone needs to ask her to get her story straight.



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07 Aug 2008, 6:21 am

slowmutant, why defend Jenny? Look, I know she's trying - but shes a layman, not a scientist!
An average, every-day person - albeit with that foolish celebrity notion people attach to anybody they know of - but she has no authority! Trying doesn't count for jack s**t if you end up causing more harm than good.
As for DAN - Defeat Autism Now. Yeah, gee, THAT's an effort made in understanding - note the sarcasm.

If DAN or Jenny decide to invest in, oh, I don't know, unbaised legitimate medical research over the course of several years to identify any, note ANY, causes or environmental links in Autism, they can be my guest. But to parade on with unproven research that they claim is fact?

As the old expression goes, the road to hell is paved with the best intentions.


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