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the girl with violets in her lap [userpic]

Oh FFS, can we not just get RID of this woman?!

[Note: All that happened here was that Jenny McCarthy got a talk show and a multimedia deal with Oprah. She hasn’t said or done anything new beyond that. But I am at maximum Jenny McCarthy exposure, and I’ve been storing up this rant for a long time. So.]

I’ll tell you, I have just reached my limit with Jenny McCarthy. I’ve had it with her pretensions to scientific expertise when she apparently gets all her information out of the advertisements in yoga magazines, I’m tired of seeing her face on every third magazine in the grocery store, and I am especially tired -- dudes, I am RIGHTEOUSLY tired* -- of her bullshit talk about “curing autism”. I’ve had it. She shrills and skirls on and on about vaccines and autism until a definitive study is published FOR THE LIKE 25TH TIME indicating that vaccines are NOT linked to autism, and even now I’m not sure that she’s shut up about that. And then she persists in going on about “curing” and “healing” autism. Not parenting children with autism. Not helping kids with autism exist more easily in the neurotypical world. CURING them. She wants to fix the brains of all kids with autism. Because, you see, there is something wrong with them, the same way that there is something right with the brains of all neurotypical people, and so all of them need to be made neurotypical as quickly as possible. (Until they die of smallpox. But what are the odds of that? It’s not like vaccines have ever done anyone any good anyway, amirite?)

Look. I have a nonverbal learning disability, which is sort of right on the brink of being on the so-called “autistic spectrum”. It shares many qualities with Asperger Syndrome, and it’s linked with my sensory-integration disorder, which in turn shares qualities with autism. For these reasons, neurodiversity acceptance is an important issue to me. And I do know that I’m not autistic per se, and that as such, I maybe shouldn’t be the one to talk here. I know that whatever difficulties my NLD and SID have presented me with (and they have been troublesome), it’s nothing compared to the difficulties of handling the world as a severely autistic individual, or as the parent of a severely autistic individual. I know it’s easy for me to go all rah-rah neurodiversity when I’ve always been able to talk and interact and -- usually -- pass for neurotypical when I need to.

But I’m talking despite all of that, and here’s why. I’m talking because I do not believe that it is okay in any sense to be working towards “normalizing” the brains of people who think in a different way from the majority of people. I don’t even know where that begins and ends. Okay, autism is challenging. But many of the autistic spectrum people I’ve talked to (I’ve been to some of the conferences and met lots of people on the spectrum, although the majority of them probably were Aspies and didn’t have one of the more severe forms) say they wouldn’t trade in for a neurotypical brain under any circumstances. We like observing society from a little way off. We like having a different perspective. We like the quasi-savant qualities that many of us have, and we enjoy the driven, passionate dedications we have to certain things (computers or cars or stamp collecting or anything else you can name), even if they’re almost exclusive of all else and thus look really “weird” to the outer world. The external world can be really scary and it might make us throw temper tantrums or hide in small places, but those places feel safe, and it’s nice to feel safe. It isn’t nice to not feel safe -- not at all. But dealing with that lack of safety is part of our world, and most of us develop strategies for dealing with it. And it’s stuff like clicking or rocking or flapping or hiding, and so of course it doesn’t look “normal”. But if it works for us and it’s not hurting anybody, what in the hell gives people the idea that they have the right to judge?

And I say “we” because even though I’m not severely autistic I’ve read the words of those who are, describing their own experiences, and my God do I relate. I’m not autistic, not exactly. But the reason I know I am on that spectrum is because I understand everything I read about it so perfectly and so intuitively.

I’ve never read of, nor encountered, an autistic person who wanted to be “cured”. People who want help in dealing with the more difficult aspects of the disorder, sure. I don’t think anyone wants to scream when they’re touched or to be unable to stand the sound of people’s voices or to become completely overwhelmed in crowds or to be unable to communicate with those who love them. And for those whose temper tantrums lead them to lash out violently and potentially cause harm to others (though that's not as common as you may believe, either) -- of course that needs to be stopped as quickly as possible. Certainly there are aspects to autism that are difficult or painful for both the autistic person him/herself and/or for those around them. And any help that can be offered in making those difficult parts less difficult is great.

But no more talk about a fucking “cure”, okay? No more of this superior neurotypical privileged bullshit. Lose the conformity fixation, for God's sake. You’ll note that McCarthy’s books’ titles are “Louder Than Words: A Mother’s Journey in Healing Autism” and “Mother Warriors: A Nation of Mothers Healing Autism Against All Odds”. Notice anything about those titles? I do. They both feature the words “mother”, “healing”, and “autism” -- and neither of them make a single reference to “Evan” (her son), “listening”, or “autistics”. Those books aren’t about people with autism, and they’re certainly not about listening to or trying to understand autistic people’s lived experiences. They’re about Jenny McCarthy being a mom who wants her kid to not have autism, and who decided to make a crusade of it along the way.

Anyway. Helping is cool. Understanding is cooler. “Curing” is fucking insulting.

There, I’m done.

*Can you even be righteously tired? Doesn’t matter. I so am.

Comments

Posted by: Hello. (bbsy)
Posted at: May 5th, 2009 07:26 pm (UTC)

I can see both sides. We both gain and lose as a result of our difference.

I think it'd be nice to help people have more options in perception, particularly when it keeps a person isolated, unfulfilled in any sense.

But I wouldn't trade my brain for any other either, despite how stimulants aren't working for me right now. I am the product of my experiences, and I like what I am.

Posted by: the girl with violets in her lap (slammerkinbabe)
Posted at: May 5th, 2009 07:45 pm (UTC)

Yeah -- I certainly wouldn't argue it's not a tradeoff, and I *definitely* wouldn't argue against more "options in perception", as you put it. There have been so many times when I've wished that I could live inside a neurotypical head for just one day, just so I could fully understand all I've lost *and* all I've gained as a result of NLD.

The way I see it is this though: I may (and do) want to change some things about my NLD and my SID, but *I* want to be the one to determine what should change. If people want to help me, I want them to ask me how they should do it. And if I were in a state where I couldn't talk, I would want them to work with me and follow whatever signals I could give as much as possible (autistics *can* make it clear what they want and don't want, what they're comfortable with and what they're not). The "cure" Jenny McCarthy's hocking is one that she made up herself and then tried to fit her son into. I'm not down with that, you know?

Posted by: Christina (christinaathena)
Posted at: May 5th, 2009 10:15 pm (UTC)

I may (and do) want to change some things about my NLD and my SID, but *I* want to be the one to determine what should change. *nods vigorously* Definitely! Self-determination is the key.

Posted by: Damian (fanboy_of_zeus)
Posted at: May 5th, 2009 07:38 pm (UTC)

Amen.

I've had a similar reaction to a few articles I've read about parents of kids with Down's Syndrome. These articles are generally about how they're trying to give their kid a "normal" life - get them into a normal school, keep them out of special ed programs, get them normal girlfriends, all that sort of thing. And, well, I've got a close friend with Down's Syndrome - I can't speak for all people who have it, but *she* would fit into a "normal" education program about as well as a fish would in aviation lessons. Her mother's worked hard to find things she's good at and enjoys, and she has a good life, and forcing her into the life that "normal" kids have would only have been painful for everyone involved.

So, yeah. I get what you're saying.

Posted by: the girl with violets in her lap (slammerkinbabe)
Posted at: May 5th, 2009 07:49 pm (UTC)

Yeah. My NLD has made me more sensitive to issues related to Down's Syndrome than I otherwise would be. I tend (perhaps more than I should? I dunno) to see it as an alternate way of perceiving the world, rather than a "lesser" way. And I tend to get pretty emotional when the subject of the high rates of abortion of fetuses diagnosed with Down's via amnio comes up. (I am not proffering any judgment here because my response is emotional rather than intellectual, and I have no idea what my actual processed thoughts would be if I had any. I just know I get upset because I relate to Down's kids on some level.)

Posted by: Damian (fanboy_of_zeus)
Posted at: May 5th, 2009 08:00 pm (UTC)

I mean, intellectually, I can kinda understand the high abortion rates - raising a kid with Down's Syndrome is a hell of a lot more work than a regular kid, and there's not even a light at the end of the tunnel because the kid will continue to need that kind of intense parenting long after a "normal" kid would have grown up and moved out. But yeah, it sucks.

Posted by: Christina (christinaathena)
Posted at: May 5th, 2009 10:17 pm (UTC)

And I tend to get pretty emotional when the subject of the high rates of abortion of fetuses diagnosed with Down's via amnio comes up.

And this is what worries me when I read of studies looking for genetic markers for autism. Will fetuses found to have those markers be aborted in large numbers, too?

Posted by: Tasha Rebekah Martin (lietya)
Posted at: May 5th, 2009 07:38 pm (UTC)

If only we could cure some people's desire to be self-righteous assholes.

Jenny McCarthy pisses me right the fuck off, too (I think I had a post about the "cure" movement it a while back).

Posted by: the girl with violets in her lap (slammerkinbabe)
Posted at: May 5th, 2009 07:41 pm (UTC)

If only we could cure some people's desire to be self-righteous assholes.

I hope this is aimed at Jenny McCarthy and not at me! LOL (Because, hey, I totally know there are people who'd characterize me that way after reading this post...)

Posted by: Tasha Rebekah Martin (lietya)
Posted at: May 5th, 2009 08:01 pm (UTC)

Oh! Oh, jeez, no, not you!! Absolutely about her.

...furthermore, anyone who says that about you after this post, I'll kick 'em in the ankle.

Posted by: Spencer Irving (archaica)
Posted at: May 5th, 2009 07:56 pm (UTC)

"They’re about Jenny McCarthy being a mom who wants her kid to not have autism, and who decided to make a crusade of it along the way"

Yup.

Posted by: ems (ems)
Posted at: May 5th, 2009 08:05 pm (UTC)

Ohhhhh don't get me started on non-vaxers. Doooooon't get me started. *sits on hands*

Posted by: roseyviolet (roseyv)
Posted at: May 5th, 2009 08:39 pm (UTC)

"But I am at maximum Jenny McCarthy exposure"

You managed to make it all the way until now? I had already maxed out on her by the time she squatted hilariously on that toilet.

That having been said, she has an autistic child. Life could not possibly have been so randomly cruel. There must be a reason, and that reason must be one that is fixable and changeable. It is that simple. This is what people do, at least until they exhaust themselves to the point where they where they’re forced to start living in/coping with the world that exists under the sky that you and I have been living under all along.

It’s sadder than it is infuriating, if you think about it that way.

Posted by: the girl with violets in her lap (slammerkinbabe)
Posted at: May 5th, 2009 08:53 pm (UTC)

Yeah, but not all people. And that’s why I find her annoying.

Though I will admit that if she were a mom of an autistic kid who happened to be a neighbor of mine, and she were behaving this way/reacting this way, I would respond in just the way you’ve outlined -- thinking it was sad and no more than that. But the thing that gets to me about her is that she’s made her bad way of coping into a national movement. She’s taught uncounted mothers of autistic kids her peculiar brand of false hope, she’s disempowered autistic kids/people who don’t want or need to be “cured”, and she’s not only ignored all scientific evidence regarding vaccinations, she’s argued strongly *against* that evidence -- so strongly that a lot of people believe her. Basically, I think that her bully pulpit comes with a lot of responsibility, and I am angered that she’s using it in a negative way.

(Though really, at this point, maybe I should be more annoyed at Oprah. Honestly, I believe Oprah means well and I like her personality, but she is such a sucker for the pat, easy, *completely fucking wrongheaded* “cure” for all problems that it’s really dangerous. Dr. Phil -- whom I watch every so often and who is often downright verbally abusive -- and that fucking lady behind The Secret and Jenny McCarthy... she keeps *giving* bully pulpits to the very last people who should have them. Also I am sorry that she has the internalized fatphobia thing going on, but SRSLY, ENOUGH with the inflicting it on the rest of the world and flinging body shame all over the place. BAH.)

Posted by: Christina (christinaathena)
Posted at: May 5th, 2009 10:23 pm (UTC)

Someone on Twitter wrote You know what? From now on, I'm not going to call Jenny McCarthy by her name. She will from now on be Antivax Barbie. I'm adopting that now.

Antivax Barbie pisses me off, too. People have DIED because of that antivax bullshit. And lives have been ruined by the idea that autistics have to be forced into an NT mold. Everyone deserves to have the best shot at happiness. That best shot is not a one-size-fits-all solution!

For that matter, I don't think it's really helpful to view autism as a monolithic entity. In addition to the issue of functioning levels and the like, it is really, in my opinion, a collection of conditions that frequently co-occur. Would I like to be normal in some aspects? Yes, certainly. I'd love to have normal facial recognition. I'd love to not have my auditory processing issues pop up at inconvenient times. I'd love to be able to function in a noisy room. But I don't want to be completely normal. I like the way I am. Normality would be so boring! :-)

Posted by: Obsessively opposed to the typical since 1987 (baroque_n_roll)
Posted at: May 6th, 2009 12:07 am (UTC)

What really bothers me about this whole thing is that the basic message here is, "I would rather risk my child's life than have them wind up autistic." Seriously, if you don't vaccinate your kid because you're afraid of autism, you're saying that a dead child is better than an autistic one. With which statement I would, um, BEG TO FUCKING DIFFER.

Posted by: Damian (fanboy_of_zeus)
Posted at: May 6th, 2009 11:12 am (UTC)

Yeah, except realistically, if your kid is reasonably healthy to begin with, s/he probably won't actually die of the stuff they vaccinate for these days - the risk is that the kid will get sick and spread it to a kid who's not healthy enough or too young to get vaccinated. So she's saying, better someone else's dead kid than her own being autistic. Which is even more wrong, because she has no right whatsoever to be making healthcare choices for kids that aren't hers.

(Deleted comment)
Posted by: the girl with violets in her lap (slammerkinbabe)
Posted at: May 6th, 2009 01:56 pm (UTC)

If you're cut off from the cultural mainstream, you may or may not know that Jenny McCarthy was originally a porn star, then graduated to being an MTV deejay, then graduated to... this. It seems as though there have got to be other steps in the middle there somewhere, but I cannot for the life of me remember what they were. Marrying Jim Carrey was involved.

(Deleted comment)
Posted by: the girl with violets in her lap (slammerkinbabe)
Posted at: May 6th, 2009 02:02 pm (UTC)

Aww, thanks. :) For some reason I've been feeling posty. That is not a word. I am uninterested in this fact.

(Deleted comment)
Posted by: the girl with violets in her lap (slammerkinbabe)
Posted at: May 6th, 2009 02:10 pm (UTC)

Aww, thanks, darlin'. :) I've been thinking of editing it, trimming it, and submitting it to... somewhere. There's a Unitarian Universalist magazine that I thought might be interested.

Posted by: Christina (christinaathena)
Posted at: May 6th, 2009 03:04 am (UTC)

I’ve never read of, nor encountered, an autistic person who wanted to be “cured”.

I actually have. A friend of mine knows just such a pro-cure autistic himself, and has shown me that person's blog. I find it very sad, filled with negativity and self-hate. :-(

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