8/17/2009

Beautiful Way and Kick Ass Kumbaya

It’s been out there now for 14 months, but it recently has come back into play on some blogs of autistic adults who have no love for neurodiversity. When Kristina Chew and Ari Ne’eman were interviewed on Good Morning America in June of 2008, Diane Sawyer spoke with Deborah Roberts at the end of the segment. I’ll admit I’m not at all fond of news anchors and interviewers and their canned way of conveying emotions. The more you watch them interview people you get a sense of how formulaic and disingenuous their emotional displays are. You also can get a clear sense of where they are completely ignorant and ought to know better, like Anne Curry and her inability to keep psychotic and psychopaths separate. But I digress. Deborah Roberts talks about the new word, neurodiversity, and Diane, as one poster wrote, with her “screwed up face of pity“ (1) says “I mean you keep wondering is it in someways a beautiful way of justifying heartbreak.”(2)

The comment has garnered a fair amount of posts in the last year plus, and Mitchell, autism’s gadfly recently added it onto his main page as has Stephanie Keil, a talented young artist. (3, 4, 5)

Now, I’d wager, having read a fair amount of Mitchell’s blog, that he does not mean this in a nice way. He has a rather significant distaste for neurodiversity and has elevated it to a status that begins to take on mythical proportions, so he isn’t using this as a compliment, and I’m pretty sure he doesn’t view it as beautiful way to do anything, let alone “justify heartbreak.”

Lots of bloggers, including Kristina Chew (7), wrote on Sawyer’s comment. Neurodiversity is a beautiful idea. It is the idea that we are all equal in value and dignity, that we all have something worthwhile to contribute in our own ways, that we deserve to be treated with respect, that we are worthy of love and assistance. That is beautiful. It is accepting of the sanctity of human life, of the inherent value of life. So, yes, for all Sawyer’s seemingly falsely generated feelings of pity, neurodiversity is a beautiful way.

What about the idea that it is justifying heartbreak? First off, let’s look at what justify means. According to an online dictionary, it means the following:

1. to show (an act, claim, statement, etc.) to be just or right: The end does not always justify the means.

2. to defend or uphold as warranted or well-grounded: Don't try to justify his rudeness.

3.Theology. to declare innocent or guiltless; absolve; acquit. (6)

Justify heartbreak? Is neurodiversity showing heartbreak to be just or right? No. Is it defending it as warranted or well-grounded? No. Is it absolving heartbreak? Maybe. I don’t think that’s how Sawyer’s using it, though.

Heartbreak? Whose heartbreak? The parents’? The child’s?

The entire sentence, short of thinking of neurodiversity as a beautiful way, makes no sense. Heartbreak is a choice. It is an attitude made by individuals to cope maladaptively to a situation.
I’m well aware that having a child with a severe disability can hurt one’s heart, often on a daily basis. If your heart is hurting for the child’s hurdles and difficulties, I’d say that’s all well and good. And the right emotion, especially if it acts as a catalyst to get off your ass and make the world a better place for your child and other children like your child. If it’s hurting your heart because of what it cost you, well, you’re not high on my list of favorites. I get it, you were thrown a wrench in your plans. Put on your big girl panties and deal with it. If it gets rough, reach out and get some support going. Raising Autism and Countering are there for you. We will support you on your journey to help your child reach his or her potential and to help you cope adaptively. We’ll be compassionate, caring and respectful; it’s just that I personally have a limit on the depth of pity parties allowed as well as outright woo. Occasional forays into the depths of darkness are unavoidable as a parent. We’ll be here to give you a hug and an occasional constructive suggestion to get on up and over that bump. And I am well aware that some of those bumps are mountains. It’s why we’re all about the hugs.

I’ve decided my sign off should be Kumbaya since I use it as much as I do.

So, Kick-ass Kumbaya, mothers and fathers out there dealing with children with special needs as well as to my ASD readers. I’m happy to have you all here. There’s a place at the table for just about everyone.

Cue the tambourines.

Sources, all fancy like:
(1) http://www.blisstree.com/autismvox/on-good-morning-american-june-10/
(2) http://www.youtube.com/watch?v=oouMQG3Oh6c
(3) http://leftbrainrightbrain.co.uk/?p=1797
(4) http://autismgadfly.blogspot.com/
(5) http://stephanielynnkeil.blogspot.com/
(6) http://dictionary.reference.com/browse/justify
(7) http://autism.change.org/blog/view/judge_not_lest_ye_be_judged

23 comments:

Roger Kulp said...

I think the tendency to overly emotional about "heartbreak" is no different than that of saying how "inspirational" someone who is disabled is because the learned to (fill in the blank),both come from the same place,and both are wrong headed.

But the tendency of so many in the disability rights movements,not just neurodiversity to carry it to the other extreme,is just no better.There is a lot about the basic ideology of neurodiversity, as put forth by Ari Ne'eman,Left Brain Right Brain,Amanda Baggs et al,I can never buy into,aside from the fact I do not believe autism is purely genetic.There is too much science to disprove this.Autism is like mental retardation. One condition,many causes.Neither ND,or most anti-vaxers have fully accepted this yet.

Other than John Elder Robinson,I have not seen one other prominent advocate of neurodiversity admit there are people on the spectrum,who do not find one positive aspect of their autism.Toleration of other views is supposed to be central to neurodiversity.Except if you are an autistic who wants to be cured.Autistics like Stephanie Lyn Keil.Stephanie,as you may know,has been repeatedly brutalized online by vindictive ND smartasses who deny her autism exists.

As somebody who has a history of severe developmental delay,multiple learning disabilities and,medical issues triggering regrssion,I refuse to buy into the picture of autism put forth by the APA,and by extension neurodiversity,who carry things to the extreme,by saying things like head banging,and elopement are "comorbid conditions" unrelated to autism.This is both stupid,and ignorant,because,autism aside,the interrelated nature of the brain and the various body systems to themselvessays this is BS.If something is abnormal somewhere in the body, like the pancreas in diabetes,the whole body can be out of whack.

There is a reason smart neurologists, pediatricians,etc. from places like Kennedy-Kreiger,Harvard and UCLA,who truly care about people with autism,and making their lives better quit these places to set up shop as DAN! doctors.

Neurodiversity is wrong,the APA is wrong.These are the same people who used to call homosexuality a mental illness,and here is neurodiversity carrying their water,by supporting the APA's model of autism,forty years later.Neurodiversity,who claim to be such big advocates of equal rights.Think about it.

Clay said...

Imagine Mitchell singing and dancing to this:

I am the very model of the maladaptive autistic.
I've information personal, and actually quite really sick.
My mommy taught me autism has made me really defective,
And told all of her friends she doesn't know how I could ever live.

I can't make friends, they'd pick on me and say I look ridiculous,
They'd twist my arm and spit on me and call me a humunculus.
The girls would run away and tell their moms I'd looked at them,
I'll never know the pleasures or the charms of the gender la femme.

He'll never know the pleasures or the charms of the gender la femme.
He'll never know the pleasures or the charms of the gender la femme.
He'll never know the pleasures or the charms of the gender la femme.


I'm very good at criticizing the real autistic advocates.
I never tire of making up and slinging bilious epithets.
In short, I envy everything that they've achieved,
All those things that my dear mother never would have believed.

All those things that his dear mother never would have believed.
He is the very model of the maladaptive autistic.

kathleen said...

Bravo Clay-that was..that just made me laugh. Thanks for this post Kim..funny, I caught the sawyer interview last june as well-same thing stuck out to me..I did in fact write her-just to let her know that I thought she was WRONG!!!!! Gosh, she never wrote back..go figure.
And I'm just asking Roger...who is "Them" in this neurodiversity "Movement"? As a mother of 3 kids on the spectrum..I believe in their right to be treated with dignity and respect-to have access to the services that they need-to have the same rights as any other person...that every person deserves these things..Why does this bother you? It seems that in a very round about way-you are asking for these things..

NightStorm The Aspiewolf said...

You repeat yourself a lot Roger, what's your point? Also why can't you space when use use puncuation?

I don't understand why you go to a pro-ND blog and parrot yourself over and over. You're posts all sound the same
-"I am blaming my disorder on something/reasoning 'self-hate'
-"Make some "caressing with the left and slapping with the right" comment to Kim saying she is the only "sane" NDer while insulting everyone else.
-Use bad science to try to make it seem you know what's going on but instead you spout the tired old rhetoric that has been disproven by epidemiologists and scientists that are not paid by personal injury lawyers.
-You also missed the entire point of ND and relying on "butthurt" from parents, who don't want to believe what they are doing is wrong.
-Rinse Wash Repeat

You seem like intelligent but very ignorant gentleman. Maybe the cliche "old dogs can't learn new tricks" is applicatable. I don't know what your agenda is but until you learn to stop repeating the same old diatribe. I am going stop paying attention to your posts.

I am glad Kim finds you entertaining..


moving on.
Journalist tend to have bias I am assuming Sawyer has somesort mutual connection to parents who want to cure and so baffled at the concept of accepting them him as human beings.

KWombles said...

Roger,

You're always welcome to post here, but it would upon occasion be nice if you could at least argue against my points rather than the mythical ND movement you and a few select others have decided exist. Especially since it and what I have repeatedly written over and over bear no relation whatsoever to each other.

The idea of equal rights, dignity, and value and lending a hand to those in need is NOT wrong. I couldn't say it any better than Kathleen does to you in her comment.

I'm sorry you've not been able to get appropriate medical care throughout your life. Welcome to the club. I'm sure most of us have a horror story of when we've been screwed by a doctor's indifference or mistake.

Look, I have multiple medical conditions. Saying one is responsible for all of the symptoms is wrong. I have diabetes. It doesn't cause my other medical conditions. Autism is not responsible for everything going on with you. It's not. Some conditions are co-morbid. I am not assuming which ones of yours are. That's between you and your doctor.

As to attacks, really? You want to go there? Sometimes an ass is an ass and not standing for a movement. And there are asses on both sides of the neurodiversity equation. Assuming those who attack Stephanie are representative of your mythical movement is the same as me assuming that my particular pest is representive of everyone who believes differently than me. As Thelma would say, that would make me a dumbass, don't you think?

KWombles said...

Clay,

I posted yesterday to tell you how clever I thought your post was, and I apparently didn't check it to make sure I didn't get the cussed red writing saying it didn't publish. Didn't realize until this morning.

So, I'll heap the praise again: very funny, although Mitchell would not think so. :-)

KWombles said...

Kathleen,

What, Diane dissed you? Oh noes. I can't believe that! :-)

News anchors are bad actors, I've decided.

KWombles said...

Nightstorm,

I wouldn't say I find Roger entertaining. But, I'm glad he reads me, and perhaps at some point, he'll actually hear what I'm saying.

I assume biased, yes, and figure she rehearsed that little line beforehand. I'd have liked to have seen, especially since Deborah Roberts has a special needs child, Roberts rear back and ask her what the frak that meant, but we know that not all parents see autism or disabilities in the same way, nor view the impact on their own lives the same way.

We all see the world through different lenses, cliched as that may be. We'll keep working to help people see equal rights, dignity, and value as the primary lense through which people look at others.

Kick ass kumbaya, right? :-)

Clay said...

KWombles said:
"very funny, although Mitchell would not think so. :-)"

Thanks, it was kinda fun, but lest anyone think my purpose is (or has been) just to yank Mitchell's chain or piss him off, let me disabuse him (and others), of that misconception.

I feel compassion for him, because I have experienced many of the same difficulties that he has, being teased, mocked, made fun of by older sisters and schoolmates, misunderstood by teachers, (because in my case, they really had no idea what was "wrong" with me), being set-up, lied to and lied about by co-workers, losing jobs for various misunderstandings and idiosycracies, and yes, even experiencing the loneliness that comes from not being able to "connect" with others, as NTs do so naturally.

I have compassion for him, despite the fact that he has none for me, because I'm one of those "high-functioning Aspies" who never even figured out how I was "different" until I was 53. It makes no difference that I was married, had kids, because all that came to naught. He could have done the same, (and might have had the same results), had his mother not told him that such things as marriage were out of the question for him.

Simply because my problems were not as "pronounced" as his, I spent all those years banging my head against a wall I didn't even know existed, because "Asperger's" hadn't been put in the book yet, and my first clue was seeing Jerry Newport (today's his birthday!) on "60 Minutes" in May '96.

I have compassion for him, because I understand the problem of "mothers". Mine happened to be totally oblivious to me or my problems. She was busy going out, getting drunk after a hard day working in a factory, and to be blunt, screwing around. She often dragged me to the beergardens, using me as "bait", because I was such a cute little dickens. ;-) But I didn't like it there, and fought to stay home to watch "Dobie Gillis" or some such. She often didn't cook supper before going out, and there was very little food I could eat, as I didn't cook, (and had strict orders not to touch the stove). I was severely malnourished between the ages of 10 and 15, when I finally left her after an argument in a bar, and went to my father's home instead.

She was a paranoid, domineering, hateful person who never missed a chance to dis my father to me, as she was bitter over him leaving her for another woman when I was 3. I threw out all her baggage just before I turned 15.

So yeah, mothers can be a trip. Worse, they can imprint us with some very self-defeating ideas. It's understandable, that Mitchell's mother might want to shelter him, protect him from harm, provide for him whenever he can't provide for himself. That's a fine thing, a laudable intention, but can be taken to extremes. There's only a small difference between "mothering" and "smothering", and it is my belief that his hapless attitude toward autism is the summation of all that she has imprinted on him.

I feel for ya, Jon, I really do.

kathleen said...

No Clay, I didn't think your intention was to just yank his chain. It does get frustrating though..when You are trying so hard to simply make a better place for your kids-for all people-to work at everyone getting dignity and respect, and you run across Mitchell. It hurts me-hurts me for my kids, Because I see the world that I am asking them to be a part of-and they will try, for me. How daunting. So I have to do all that I can to change it.(the world)
I thank you for sharing that part of your life with all of us-I will say this as a mother...No child deserves that kind of treatment-no child.
I have run into your comments here and there across the blogosphere-and I have to say this. No matter what happened to you in your early years-you come across as a kind and compassionate person. No matter what may or may not have been "imprinted" on you-you still see the need for all people to have dignity, respect, compassion and equality. So my question to everyone is this. Why is that such a hard concept to grasp for everyone? It seems as though that is what they want-and yet they fight against it. I have such trouble understanding this. What is it that they are really against? I too feel for them, because there seems to be a lot of self hatred. And thats just wrong.

Louise said...

Well boy howdy Miss Kim..been a while since I made a comment on yer site and all. I be recognizin a couple a people from tha comments and such. Now Roger we been over this afore! Dignity and respect! aint that what ya want sugah? And Mr. Clay! findin ya here as well. Imagine that! Boy howdy and a side o' coinseedence! Seems we be a thinkin along tha same lines an such. Kathleen an Nightstorm, y'all come on over ta our place anytime!
Miss Kim, you is a real fine writer..me an Thelma tryin our best ta say what you is! So you come on over as well! We'll have ourselves a party! Drink us some a that Boones farm an figure out how ta change tha world! Yes sir we will!

KWombles said...

Clay, thank you for sharing your experience. It has to be noted that you chose a different path than the one you are arguing that Mitchell chose.

In the end, we make our own lives. We either rise above the challenges and hardships (whether we are able to surmount them or not, how we handle them is what matters) or we wallow in them and allow them to overwhelm us. Thank you for saying I can share the comments you have made here on the facebook group. I'll add them tomorrow.

KWombles said...

Louise,

Thank you for your kind words. I've enjoyed reading Thelma's and your exploits.

I'm all for changing the world! :-) And for parties!

Clay said...

KWombles said:
"It has to be noted that you chose a different path than the one you are arguing that Mitchell chose.

It also should be noted that we were "dealt very different hands". He had some high cards, and I had some high cards in a different suit. It was easy for me to leave an empty house, with a parent who was hardly ever there, to go live with my father and step-mother who lived in a new house on a lake, with a boat and all. It was a much better, more stable environment, as my father only drank on weekends. He was still "distant", being disappointed in me and all, but that's another story!

Dave Seidel said...

Roger, the (only) person who is accusing Stephanie of not being autistic aliented himself from the neurodiversity community a while ago, and seems to be in the process of alienting himself frim most other people as well. He has no business undiagnosing anybody, but seems to be making a practice of doing so. He seems to have nothing constructive to add and only makes things worse for everybody.

NightStorm The Aspiewolf said...

We all see the world through different lenses, cliched as that may be. We'll keep working to help people see equal rights, dignity, and value as the primary lense through which people look at others.

That might sound like a good idea Kim and it is. But after reading Roger's posts (or try too) it seems that it's in one ear and out another. Thats why I want to know what his objective is.

Why is he here if he doesn't want to rid of his ignorance?

Clay said...

@Kathleen, Thanks for your kind words. I've seen you around, (a very few places), and regret I don't know you better. It seems you're an NT mom of an autistic child(ren). That's great, you're welcome in the "autistic community", as you're on our side.

As a PS, I did try to have a relationship with my mother, after I had gotten married. For awhile, she and her latest husband lived across the street from my family. It really didn't work out though, her drama queen proclivities caused a lot of trouble. I had to sell house and move across the country, and didn't see her for 29 years, and then she died. Didn't go to her funeral. Too many bad memories.

kathleen said...

@clay-I hope to run into you more...Yup! I am the mom of four very unique and wonderful kids-three officially diagnosed as being on the spectrum-I think it is a privledge to raise kids..any kids-wish more of the world saw it that way...so I guess it is part of my job to raise them right..and to try and change the world for them-every person deserves dignity- respect- and equal rights...every person. It astounds me that people can't seem to grasp that concept..or even fight against it. I see a bigger divide than just in the autism community..There are peoople who want to change things and people who don't notice that change is needed and idiots. Crap! I'm going off on a tangent-sorry to use your blog for my soapbox kim! kumbaya!

Liz Ditz said...

Kwombles, stopping by on Friday. Be sure to read today's Science-Based Medicine, taking apart Joe Mercola's claims about influenza vaccines. http://www.sciencebasedmedicine.org/?p=851

KWombles said...

Hey Liz,

Thanks for sharing the link!

Timelord said...

You know, Kim, it's getting to the point that the emotive use of the word "heartbreak" is simply setting back the understanding of the Autistic Spectrum. That is - one is heartbroken that they don't have a perfect kid. It's rubbish but look at it like this. It's actually worse - because American society paints itself to the rest of the world to be the place to live, or the place to aspire to be like. So any imperfections that taint that view "need" to be pitied.

BULL!!

What's needed is support! I believe that the lack of proper support leads to the creation of attitudes like those we see in Roger, Stephanie and certainly Mitchell. It's all about painting the entire Spectrum as all world bad - the Walls of Jericho have come tumbling down so to speak. It's not and those of us who understand the Spectrum either by experiencing it personally or taking the time out to understand it recognise this as wrong and we seek to fight it in our own individual ways.

Nice work, Clay!

KWombles said...

Hi, Timelord,

Support and acceptance of differences, absolutely!

I believe that if the current generation of children with autism are given appropriate supports, there will be less problems for them as adults, both with the outer world and internally, for them. Self-esteem, self-worth, positive coping methods, all these would be more likely to be intact.

Clay,

People can be dealt the same hand, though, and make different choices. :-) Quirks of personality that make a person more likely to react one way rather than another can not be dismissed. People are endlessly fascinating!

Kathleen,

I meant to say days ago, soapbox away!

Clay said...

As poker hands go, I'd say I have at least a "full house", while Mitchell doesn't even have a pair. Think on it... ;-)