1/10/2011

Battle-Weary and Worn

Wakefield and the vaccine wars suck up the air. So much attention on one man. On hammering away at each other over whether Wakefield's the saint or Deer. Or who's the greatest sinner. There can be little doubt regarding Wakefield; the GMC ruling and revocation of his medical license last year clearly indicates that Wakefield acted dishonestly and unethically. I know, if you're a Waker's fan you believe it's all a governmental/industrial plot to silence the maverick doctor willing to stand up to vaccine companies, except you keep backtracking and insisting now it wasn't about autism and it wasn't even about vaccines; it was about gastro issues. And folks insisting it wasn't a fabrication and we should all go to http://www.wesupportandywakefield.com/. Sure and we'll head right there, because all them folks signing the petition must mean Andy's a good guy. 


The Huffington Post Health page clobbers readers with autism story after autism story, or rather, mostly coverage of Wakefield. At the top is a rare piece having nothing to do with Wakefield or vaccines: coverage of a new study showing that the risk of having autism (not Asperger's or PDD, just autism) is greater in siblings born less than two years after their sibling. And yet, so far the comments are the typical mix of vaccines did it/no they didn't, as usual. 


Immediately under it is Jenny McCarthy's statement in support of Wakefield and insistance that Brian Deer is the liar liar pants on fire. And there the AoAers come out the woodwork to both simultaneously backpedal on what Wakefield's Lancet article said while insisting that the media won't listen to the Lancet 12, blah-blah, same old thing. 


Leaving aside all the rhetoric, one thing I find frustrating in McCarthy's piece is this: "This debate won't end because of one dubious reporter's allegations. I have never met stronger women than the moms of children with autism. Last week, this hoopla made us a little stronger, and even more determined to fight for the truth about what's happening to our kids." It isn't one "dubious" reporter. And the only people who find him dubious are those who think Wakefield is awesomeness personified.  But that's not what really sticks in my craw. What irritates me and frustrates me is the second sentence. McCarthy tries to make it sound like all of us moms of autistic children are united behind Wakefield, and I can assure you we are not.


We might loosely be unified in wanting our children to overcome their challenges, to lead healthy, happy, productive lives, but we surely diverge quite drastically on how we think our children came by those challenges in  the first place and the best way to help our children overcome those challenges. 


For all that I am for community, and I am, and I do consider McCarthy a part of that community, although one who has caused tremendous harm in convincing new parents that vaccines cause autism, I don't think that gives her the right to appoint herself our spokesperson or to pretend she represents all moms. It's hubris is what that is.


And it makes me tired. Tired to read the same kinds of comments I read nearly two years ago. It's the same argument, with no changes in rhetoric. There are some of the same people there, arguing against each other, insulting each other, and brand new folks to the fight, but the rhetoric, the commitment, and the vitriol haven't changed.


Late last week, Huffington posted a fairly good piece on Wakefield (you know cuz it said he had acted fraudulently), and I'm sure you can imagine that the comments were more of the same, with the same old rhetoric.


I suppose Huffington is trying for some kind of weird balance or they've realized that it's okay if it's the same dozen posters; ad revenue is ad revenue. So we have McCarthy's pro-Wakefield post today up against David Ropeik's con-Wakefield (get the pun?) piece.


But that's not even half the recent posts on Huff about autism this year: there's senior health editor for Huff explaining why the story is hot. There's the first bit on Wakefield being fraudulent from the 5th. There's the video from the 6th.


Also on the 6th is the reporting of the tragic loss of Thomas Dunn, who pushed his autistic student out of the way of a bus, saving the student's life and sacrificing his own. At least here, at this post, one can see in the comments a commitment to honoring this man's sacrifice (although the occasional bad apple still shows through in comments that have been deleted).


There's a piece from the 2nd, with comments already closed, by neuroscientist Dan Agin on autism in the 21st century: "Such is autism at the end of the first decade of the 21st century. Autism is still with us, still an extremely serious problem for both children and adults--and still a puzzle to be solved by science."


Huffington Post has figured out that autism coverage, whether it's accurate or not, is good business, especially if it can in any way bring up the vaccine angle so that the folks get to arguing back and forth. The same could be said for Age of Autism. What pieces get the comments over there? The ones that let the extremist foam at the mouth. 


We do what gets us attention, what gets us money. We're human and we're flawed. Sometimes, though, I read a bit too much of those flaws on display and it wears at me so that I am battle weary and worn and long only for kids, cats, and flowers. And a lot of chocolate. And blog posts about how one of our children mastered a new skill, said something funny, or how someone acted in kindness towards us as we struggled. 


Aren't you, too, battle weary and worn? Tired of Wakefield sucking up the air and the focus on finding effective treatments and therapies for children with disabilities? Tired of all the back and forth that gets us nowhere? Wouldn't the time be better spent looking towards vocational training programs and sheltered work centers and day programs and safe group homes and assisted living facilities where each person's autonomy is respected and as much independence as possible is worked towards?

11 comments:

Life in the House That Asperger Built said...

Yup.

Tired. And today, I discovered I can't really avoid it even if I avoid the mean places. Stagliano tweeted something that someone blogged about, and I read it. Ugh..

After awhile it all starts to make my head numb.

Clay said...

Yeah, I've been sick to death of it for a long, long time. Haven't really followed Huffpo, and gave up on EoH and AoA long ago. I'm thinking of deleting my google alerts for autism and Aspergers, because the number of "newbies" and "experts" on the subject are grindingly depressing. I'd rather make better use of my time than to deal with these featherwits.

Rachel said...

Amen, Kim. As you know, I'm feeling similarly, and for a similar reason: So much energy just gets sucked down a big hole of negativity, and who benefits? People with autism? The people who love us? Our friends? Our neighbors? The man in the moon? Who?

Just the people who think that someone died and made them God, that's who. And the ones who seem to be addicted to living in a big, deep, bottomless well of negativity. Sometimes, they're one and the same. I don't have any time for such people anymore. I'm just too old and I've still got too much to do!

kathleen said...

YES..Yes I do. It has made me weary and judgmental in some ways-and I don't like it. It has made me question the point behind blogging-seeing ulterior motives..and I don't like it..nope not a bit. I don't like that I can't question things without someones feelings getting hurt..it is almost like being back in high school in some ways.."he said-she said" and sigh..not doing it anymore..just gonna smile and nod..We have a community to build...

KWombles said...

Laura,

Thanks. Me too, mind-numbing and heart-shattering at times to see it all.

Clay,

I don't blame you one bit.

Rachel,

I wholeheartedly agree. So much to do! And we can't let those who would like to suck us all down into the negativity pit with them do so. Disengagement from those people and those conversations seems like the best choice. I looked at those Huff pieces and thought, why bother. I don't want to argue with them and I won't convince them. So what's left to say over there?

Kathleen,

Smiling and nodding. Yup. :-) We don't have to agree with everyone; hee, some folks need to realize that having a different opinion doesn't mean we're rejecting the person who believes differently. People tend to take it personally, though, as a personal rejection, when it's not that way at all.

Nightstorm said...

After a while I just avoided all the Wakefield shit. It's annoying and somewhat repetitive.

Wakefield is a money-grabbing fraud. Get. Over. It.

Sullivan said...

It's tiring. But there is a huge crop of new people looking for info on this. Many are outside the autism communities.

One last time, into the Wakefield quagmire. Correct the misinformation and then let him get back to his exile...I wish I could have an exile that included trips to Jamaica, by the way.

KWombles said...

Nightstorm,

Completely understandable.

Sullivan,

Yes, and we want to leave a clear record that he was fraudulent. And we need to counter this crazed defense of the man with this curious backpedaling the antivax community is doing.
But then I hope that he disappears from view and we don't have to deal with this anymore. If we do, we do, but it doesn't mean wading into the cesspools that the Huffington Post comment sections often are, well, other than to provide accurate information. I think if the proscience folks commenting over there just posted the information and ignored the wackaloons, it might be more effective. Although I understand the adrenaline rush of matching wits and outsmarting them.

Makes you wonder why Jamaica, how'd they pull that off and will Fisher get away with writing that off.

Anonymous said...

Thanks for saying this.

It's hard for me to understand how people can live in such negativity every day, because for me, it just drains away all of my energy. I become depressed and overwhelmed and can't think or move. And there's so much that needs to be done and that can be done to make life better. I need every bit of energy that I can muster. I need for my time to be contributing toward something positive. And my kids need the best from me that I have to offer.

Diane
dianeltufts.wordpress.com

(Apparently my OpenID credentials could not be verified. Go figure.)

Science Mom said...

I can say that I just discovered one incredible, but heart-wrenching thing happened today and over this topic. I don't mean to tease but it's a comment here: http://www.huffingtonpost.com/jenny-mccarthy/vaccine-autism-debate_b_806857.html

About halfway down, a comment from Craig Willoughby. Poor guy is already taking it from the usual suspects.

KWombles said...

They really don't appreciate it when one of their own turns on them, do they?