On the menu and still on my mind

[badgerbag]

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.

Comments

[ladyjax.livejournal.com]

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.

[badgerbag.livejournal.com]

I guess I'm "uploading" from my damaged body into life, even as I type!

*sigh!!!!*

[ladyjax.livejournal.com]

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!

[badgerbag.livejournal.com]

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...

[ladyjax.livejournal.com]

Ever Widening Circle has gotten better every year. They really do bring in a wide array of talent.