Amanda Baggs (Ballastexistenz) Goes Missing!

Yes, for those of you who have been wondering what happened to Amanda Baggs's "Ballastexistenz" blog on Autistics.org, for the most part, your guess is as good as mine.

HOWEVER, there is an entry in my RSS feed from that site that says the following:

This server is going down for maintenance.
from Ballastexistenz by ballastexistenz

I have already performed a backup in case something goes wrong. Please make your own copies of any comments you might leave in the meantime, because they will not be included in the backup.

Yikes - years upon years, for one thing, of MY witty comments will be lost forever.

The message also does not seem to suggest that the site was going to be down for DAYS.

Could this sudden dissapearance be related to the Kathleen Seidel situation?

Interesting ... very interesting.

Anyone have any info?

"Finding Amanda": Review

Well, the "Finding Amanda" segment on CNN last night was pretty fascinating.

If I understand it correctly, the producers originally wanted to do something along the lines of a one-hour show JUST about Amanada, but she was more comfortable being part of an ensemble of a group of others with autism-spectrum disorders.

That approach somewhat backfired I think because you really didn't get a chance to get a full picture of Amanda's lifestyle and motivation on some issues.

One area that really seemed to get battered due to editing was the scene where she was giving a presentation in Canada and got so frustrated with the audience for saying to her over and over again, "You're an exception," that she had to leave and go to the ladies' room and scream her head off for ten minutes. You never really got to see the exact circumstances that led to that particular overload/meltdown.

Speaking of sensory overload - they mentioned something about the conference that they didn't use microphones because the feedback from the speakers can drive autistics batty and, even more interesting, it was explained that at such conferences it's not considered rude if people get up and walk around because autistics sometimes have trouble staying seated for long periods.

Yep - I'd have to say The Old Man has this issue.

Mrs. Axinar says that *I* have this issue, and, yes, at times, I'd say she's correct.

Overall it was a quite fascinating segment.

I hope Amanda does sometime summon the strength to do the whole hour. There are many who don't have the wherewithal to do the deep internet research who might benefit from having a video record of the "full story".

Related
Transcript of Anderson Cooper 360 episode featuring "Finding Amanda"

Amanda Baggs on CNN's Anderson Cooper 360° Tonight At 10pm EST

Quite possibly one of the world's most vocal autism activists, Amanda Baggs (aka Ballastexistenz) is scheduled to be on CNN's
Anderson Cooper 360° tonight at 10pm EST in a piece called Finding Amanda.

Amanda in many ways is hard to get a handle on conceptually.

She is non-verbal, but writes very well.

Very often when I'm trying to explain The Old Man to people I often find myself saying, "Well, it can certainly be MORE severe - have you ever seen In My Language?"

Every time of course I mention the name "Amanda Baggs", Mrs. Axinar starts humming the same tune from In My Language.

Amanda of course does have a detractor or two.

But, from everything I have read and many, many LENGTHY discussions I have had with her, she's autistic.

Big time.

And sometimes I swear I don't know whether or not to feel sorry for her or jealous of her.

Quite clearly she has severe, severe functional deficits in many, many areas, but, in exchange for that it sounds like she has people who come help her on a regular basis and she, mercifully, doesn't have to confine herself to a cubicle or any other structured work environment every day where she quite probably would have to put up with nearly endless foolishness that is generally quite difficult for anyone on the autism spectrum to understand.

It also sounds like she also has SO many tics that she wouldn't have some of the issues I've had lately with unwanted house guests because it's probably a pretty limited group of people that would want to hang out at her apartment anyway.

In any event, this promises to be quite a fascinating show on CNN tonight ...

Also:
Autism: Finding Amanda - Dr. Sanjay Gupta on CNN
"Finding Amanda" Review - Axinar
Transcript of Anderson Cooper 360 episode featuring "Finding Amanda"

Ballastexistenz On UK Channel 4

Ballastexistenz, arguably the Internet's most famous Autism Rights Activist, was recently featured on a segment on the UK's Channel 4 that Ballastexistenz herself thinks is "incredibly simplistic".

Having been pounced upon by a reporter myself once at a Cincinnati City Council, I can assure you that she is not the only person who has ever been misquoted or mischaracterized by the mainstream media.

Yes, the content of this piece is so short to be of almost no substantive value, however, what IS striking about this piece is the Second Life avatar of Ballasexistenz.

Now, it seems, in general, people build avatars on Second Life that don't necessarily reflect their "real life" appearance. Many, in fact, use avatars that look like animals, or, for some of us, some sort of bizarre reflection of certain aspects of our own personalities.

Building Second Life avatars is not easy. Even getting a simple kippah to sit properly on one's head in Second Life and take the better part of a week of work.

For Ballastexistenz to have so closely constructed so many of her own "quirks" is utterly remarkable.

Just think about the incredible amount of talent that must go unrecognized every day by the neurotypicals in people even far less profoundly disabled than Ballastexistenz simply because they don't know how to "schmooze".

Oh, and it looks like the Voice Chat function is working in Second Life now, so I'll be in or near the shul for a little while if any of you would like to come by and say hi ... :)

Autistic Non-Verbal Communication

Ballastexistenz brought up an interesting subject today - namely the abilities (and/or lack thereof) of people with autism spectrum disorders to receive and process non-verbal information.

If I understand her correctly, she seems to be saying that some parents of autistic children mention that the children can pick up tension in the household even though people with autism spectrum disorders are notorious for not picking up non-verbal clues.

Now, this is a topic that deserves some scrutiny.

In my dealings with the various people in my family who have been affected by Asperger's and similar "afflictions", I'd have to say they are quite aware of many non-verbal channels of communication - particularly when it comes to picking up on people or animals being in pain, and very particularly when that pain is being caused by an ignorant or evil neurotypical.

The very root of the word "autism" aludes to unusual self-involvment, but, if you pay attention to the theme of many of the writings and videos of Ballasexistenz there is certainly a very strong theme of healthy righteous indignation not just that SHE has been mistreated but that many others with various disabilities have been mistreated.

More specifically, the theme of her pieces is often not just that she and other disabled people have been physically mistreated, improperly confined and insulted in various ways but have often been THOUGHT OF AS SOMEHOW LESS THAN HUMAN.

Yes, I'd have to say this is a reasonably complex non-verbal communication that one can be instinctively aware of the distress that can be invoked in another person who is being subjected to dehumanizing treatment.

However, this of course isn't the type of non-verbal communication that the neurotypicals have in mind. Of course, the neurotypicals themselves have problems with this particular type of communication. Despite supposedly having perfectly normal "mirror neurons" they seem, for instance, to be able to quite blissfully lead their lives while watching tens of millions of people be dehumanized without health insurance because they can't bear to see their own taxes raised a little.

No, when the neurotypicals get frustrated with Autism spectrum people "not picking up non-verbal cues", they're talking about the little stuff. And generally we're not talking about this level of variaton from "standard" non-verbal communication. As a matter of fact, I have played that video to neurotypicals and had them very nearly go into shock. In fact, what I found fascinating is that the neurotypical reaction to In My Language is often not terribly dissimilar to the reaction of a person with autism to other forms of sensory overload.

What seems to be the difference between the austisic and the neurotypical is not a lack of awareness of non-verbal communication, but rather a deficiency, or perhaps simply a serious DIFFERNCE in the apparently innate responses to such non-verbal communication.

For instance, one area that I have been UTTERLY fascinated by is neurotypical workplace behavior. For instance, if someone comes to a particular job dressed "inappropriately", it can cause a level of chaos that can bring a 300-person office to a complete and utter halt within minutes. Very often I have asked neurotypicals why such reactions take place, and the closest thing to a coherent answer I ever got was from Mrs. Axinar who said something to the effect, "There are some things you just shouldn't have to explain."

Sounds to me as though this "inappropriate clothing" reaction is something that originates in such a primitive part of the brain in neurotypicals that they can't even articulate what they're experiencing. Sometimes I've seen people try - "Oh, that's unprofessional," or, "Oh, that's disrespectful," but I really wonder what the actual EMOTION is like.

For instance, say you have someone who has been working in the accounting department for the last 15 years, and, on a particularly hot day, for instance, the new receptionist comes in wearing spaghetti straps - what DOES go through the mind of the person in the accounting department in the moments before she starts maligning the new receptionist to the entire company? Does the accounting person experience a sensation of sensory overload an autistic person might feel upon accidentally wandering into a rock concert? Is the emotion, whatever it is, so utterly alien to anyone with even the tiniest dusting of autism that there really is no way to explain it?

And let's not EVEN get into why the neurotypicals seem to LIKE insincere smiles ...

Some Things Are Just Worth Screaming About

Ballastexistenz posted a quite fascinating entry about a run-in with one of her caregivers where she was in so much pain that she was really having trouble communicating with this person and he told her he would not help her until she was able to "respect" him the way he "respected" her.

Wow.

Was this poor devil told in advance he was going to work with someone with autism?

I strongly suspect my Old Man of having Asperger's, a very mild form of autism, and if you think you can get it through his skull the finer subtleties of being "respectful" without causing him to stop speaking to people altogether, you've got another think coming.

Come on now, we're talking about Ballastexistenz, presumably in a really stunning amount of pain. If you get anything less than a life-threatening thrashing you should consider yourself fortunate.

It also puts me in mind of some of the run-ins my mother has had with her keepers. Turns out a couple of facilities ago she warned the staff that this one poor old devil was not longer competent to be smoking and, yep, sure enough, after a little while the poor old devil burned himself up.

My mother was livid, furious, and apparently publicly questioning whether the parents of her keepers had ever been married.

They put her in the full-blown looney bin for a couple of weeks after that.

Some of the comments to the Ballastexistenz post are quite fascinating as well - a tale of woman in labor being told to quiet down because she was "being disruptive".

I myself once, while coming out of anesthesia was having a terrible time catching my breath and I started swearing a mile a minute - partially because I was in incredible pain, and also to try to "kick start" my nervous system. I was told that I had to calm down because I was being taken to a recovery room full of "little old ladies".

I find the choice of words in the one comment interesting - "to make it seem like the establishment is maintaining 'control' over the patient".

Oh is that what it is?

Of course if she thinks her caregivers are being injust, Ballastexistenz should try to endure a white collar work environment for even a couple of days. If you're other than terminally stoic in such a setting they think you're "not a team player" or, worse, a "loser".

Another comment on Ballastexistenz posting reads:

Just thinking about and considering that kind of unjust behavior tends to make me want to jump up and down and violently flap my limbs. And cuss, too.

I got so upset, a few years ago, at an injustice I’d heard about on the radio, that I jumped all over the room I was in, and came down wrong on one foot and hurt (not quite sprained) an ankle.

And I don’t think I’m all that autistic.

Well, apparently there must be SOMETHING wrong with you.

In this culture, if ANYTHING moves you to getting upset, it seems that people thing you're "damaged goods" of some sort ...