badgerbag: (action grrl)badgerbag ([personal profile] badgerbag) wrote,
@ 2008-06-11 09:06 pm UTC
I still think about the bit on the menu at Buck's from a couple weeks ago where Jamis said he had always wondered if supporting disabled people specifically quads was worth the social cost and the implication is that he felt it was not. Until he saw some art performance thing at TED this spring with a guy with some disabilities and a team of people collaborating with him, and his mind changed, I guess because the social cost was now "worth it" because Jamis got to have a learning experience. So, people with severe mobility problems, rest easy, non-crippled people can learn from you, therefore maybe you're "worth it"

Still just going WTF and GRRR, basically, not quite to the point of response, plus I need the direct quote. I ate my lunch realizing I could not get into it with Jamis right at that moment until I had thought.

But, my other immediate response was to mutter rantily that rich people are always going on about trickle down and Creating Jobs so maybe they can also think of people who need to hire carers as Creating Jobs which is Good For The Economy. Would that be "worth it"?

Oh... here is the quote


For me the most important presentation of the event was a surprise from the noted MIT musician/composer Tod Machover. Death and the Powers is an opera scheduled to premiere in Monaco in 2009 that Tod has composed about a rich guy who downloads himself into a computer with the idea of living forever. The staging of the opera includes a luminous library of moving, glowing books and robots running about the stage. It is a relevant topic about the near future. It is ironic that when Machover isn’t developing his opera he is working on communication tools with Dan Ellsey who is profoundly handicapped and is locked in a body with only a glowing light stick attached to his head for communication which he uses to point to his computer. With this tool he is able to compose and perform music which he did for the TED audience. So here is opera about downloading a person into a computer and in real life Tod is working on behalf of a man who he is up loading from a damaged body into life. Here they all were on stage with machinery and several people all to the benefit of a single man brought out with great difficulty by special airplane from the east. I have always wondered at the social ramifications of a great deal of effort to the benefit of a single handicapped person. Then it struck me that it wasn’t just about Dan. In fact it was about all those involved on stage, those back at home, others - who might dream about being freed from all sorts of limitations and even about me. It was a grand opera to see Dan enjoying his ability to perform for this group of interested people. So I have a new and much less judgmental view of this process.

Over the years I have been lucky enough to have been a participant in Love-ins in the 60’s and later antiwar marches, Burning Man, Esalen and TED. These are all hotbeds of learning and compassion and amazingly none of these offer any diplomas. So after attending 23 elementary schools, two high schools and five colleges and universities the only diploma I have is from Perfect Paws a dog training school. Heck I’ll never be able to get a job.

You maybe see why I want to take this apart and how it got to me.


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ext_134: by ladyjax (bsg, dualla)


[identity profile] ladyjax.livejournal.com
2008-06-12 05:21 am UTC (link)
It is ironic that when Machover isn’t developing his opera he is working on communication tools with Dan Ellsey who is profoundly handicapped and is locked in a body with only a glowing light stick attached to his head for communication which he uses to point to his computer. With this tool he is able to compose and perform music which he did for the TED audience. So here is opera about downloading a person into a computer and in real life Tod is working on behalf of a man who he is up loading from a damaged body into life.

Can I beat him with a stick? Please? Because just reading that made me want to throw up a little in my mouth.

"Working on behalf of a man who he is uploading from a damaged body into life"

WTF, that is just all kinds of wrong. Like Dan Ellsey didn't have agency of his own. Jamis is so centered on the "damaged body" that he doesn't see the man beneath.

In fact it was about all those involved on stage, those back at home, others - who might dream about being freed from all sorts of limitations and even about me. It was a grand opera to see Dan enjoying his ability to perform for this group of interested people. So I have a new and much less judgmental view of this process.

Why, that's mighty white of you (or the equivalent) Mr. Man. Really, it is.

I wonder what would happen if someone sent him an invitation to this:
Ever Widening Circle
(http://www.wid.org/ever-widening-circle). But no, he probably wouldn't go because he'd be surrounded by the people he thinks so little of. I worked for WID for eight years and something tells me Mr. Jamis would be roundly mocked.

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ext_3152: Cartoon face of badgerbag with her tongue sticking out and little lines of excitedness radiating. (badgerbag, cartoon)


[identity profile] badgerbag.livejournal.com
2008-06-12 09:34 pm UTC (link)
I guess I'm "uploading" from my damaged body into life, even as I type!

*sigh!!!!*

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ext_134: by ladyjax (bsg, dualla)


[identity profile] ladyjax.livejournal.com
2008-06-12 09:49 pm UTC (link)
I guess I'm "uploading" from my damaged body into life, even as I type!

And I am astounded, nay, inspired by your fortitude! Upward!

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ext_3152: Cartoon face of badgerbag with her tongue sticking out and little lines of excitedness radiating. (badgerbag, cartoon)


[identity profile] badgerbag.livejournal.com
2008-06-12 09:36 pm UTC (link)
Oh and I totally want to go to that WID event this fall! Axis -- I so want to see Wheelchair Dancer if she is performing then...

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ext_134: by ladyjax (bsg, dualla)


[identity profile] ladyjax.livejournal.com
2008-06-12 09:50 pm UTC (link)
Ever Widening Circle has gotten better every year. They really do bring in a wide array of talent.

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[identity profile] jimboboz.livejournal.com
2008-06-12 07:59 am UTC (link)
If we are all going to be weighed in the balance of life to see whether our contributions to the world exceed our cost to it, then rather many of us will find we are "not worth it", including a rather large number of entirely able-bodied people.

So, if Jamis thinks some people are "not worth it", well then is he saying they are... life unworthy of life?

Perhaps Dr Jamis could stand at the gate to the camp and do the selection. "Ah, du haff somezink to contribute, du go to the left, du are old und sickly und disabled, off to zer right where du take a shower, don't vorry it will be quick."

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[identity profile] sparkymonster.livejournal.com
2008-06-12 11:46 am UTC (link)
You maybe see why I want to take this apart and how it got to me.

GAH.

I do not even know where to begin with the badness. GAH.

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[identity profile] mizchalmers.livejournal.com
2008-06-12 12:34 pm UTC (link)
"Then it struck me that it wasn’t just about Dan. In fact it was about all those involved on stage, those back at home, others - who might dream about being freed from all sorts of limitations and even about me."

Oh! It was about YOU. That's all right then.

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[identity profile] eriktrips.livejournal.com
2008-06-12 01:35 pm UTC (link)
I never write this, but:

::facepalm::
::headdesk::
::whamwhamwham::

If I were to comment on this, I would write about the tremendous social benefits of putting effort into making the lives of others as rich as possible, no matter their physical, mental, emotional, spiritual, etc etc abilities.

"the social ramifications of a great deal of effort to the benefit of a single handicapped person"?? good ones, as far as I can see. and anything to get this little narcissist's head out of his own ass is going to be a serious improvement for the society he keeps.

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[identity profile] voidampersand.livejournal.com
2008-06-12 02:34 pm UTC (link)
It's basic right-wing ideology. People are valued based on their position. This is justified by the argument that people are in the position they deserve, based on their production, but that argument is specious.

I wonder whether his recognition of the value of a disabled person is actually a crack in the wall of his conservatism, or if he only sees Ellsey as a special case. Or maybe Ellsey is one of those heroic examples of how oppression really is okay because some people can overcome it.

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ext_3152: Cartoon face of badgerbag with her tongue sticking out and little lines of excitedness radiating. (badgerbag, cartoon)


[identity profile] badgerbag.livejournal.com
2008-06-12 02:58 pm UTC (link)
I don't know - I don't think of him as conservative, based on having read his blog-like menu newsletter for the last 8 years. It's more like, here is a crack in the perception/understanding, a major unexamined prejudice, in an otherwise rather aware and cool person.

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jesse_the_k: Macro photo of my Blue Heeler Lucy's deep brown left eye (LUCY focused eyeball)

Gakk-worthy, but not rare


[personal profile] jesse_the_k
2008-06-12 09:18 pm UTC (link)
Oh, how I wish his point of view was uncommon!


You're on to something there with your snark:


But, my other immediate response was to mutter rantily that rich people are always going on about trickle down and Creating Jobs so maybe they can also think of people who need to hire carers as Creating Jobs which is Good For The Economy. Would that be "worth it"?


The charity model assumes that Dan Ellsey's personal care workers are volunteers. Not much of a chance of that. Madison has the best services for people with a wide variety of labels, so every other county in Wisconsin urges people to move here. The "disability industrial complex" is a significant employment sector here. PCWs make $9 - $11/hour -- not enough, but better than Mickey Ds.


One way I've been able to unpack Jamus' sort of hatred (without spontaneously self-combusting) is to point out the million ways he is supported by the people around him. Who grows his food? Who makes his clothing? Who cleans his toilet? How is this different from the people who Dan directs so he can eat, dress, poop?

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ext_3152: Cartoon face of badgerbag with her tongue sticking out and little lines of excitedness radiating. (badgerbag, cartoon)

Re: Gakk-worthy, but not rare


[identity profile] badgerbag.livejournal.com
2008-06-12 09:33 pm UTC (link)
"the million ways he is supported by the people around him. Who grows his food?"

OMG... exactly.


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