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Posts Tagged ‘Ning.com’

  On Wednesday, November 30, 2011 the Santa Ana winds blew through Pasadena and quickly made downtown look like Armageddon.  Don’t believe me, take a look at these photos.  We lost electricity at Unconventional Media, but it didn’t matter, I wasn’t working. The electricity was out at the home of my sister, Lindsay Mofford and her husband, Tucker. I’ve written on this blog about Tucker Stilley before, his battle with ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease) and without use of any of his muscles, outside of his neck and eyebrows, his ability to create artwork and interactive media with just a reflective bindi-dot on his forehead that controls a complex system of computer technology.

Here’s a video link, “How We Do It” that explains the method behind, “The Permanent Record of NewJack_Rasputin.” His website, The Permanent Record, is this pirate avatar’s portal to his art, songs, ideas and videos. Check out the recent new work in reaction to the Occupy movements and new music with visuals, Brite Gray.  But don’t stop there, explore the website for other work or search out, TuckerStilley.com. There is also an APP from Appucan of his Deconstructed Faerie series.  In 2010, he was one of six honored with the Massachusetts College of Art’s Alumni Awards for Distinguished Achievement. (His video speech, since he was unable to attend.)

Back to the power that went off that evening and did not return for 63 hours, a stretch that could have proven deadly to Tucker. He now breathes 24 hours a day with the assistance of a ventilator.  When the electricity went off, everyone had to kick into emergency mode and that’s what amazed me. Not only how quickly the family and caretakers reacted, but how the community of fans and friends stepped in to assist. There was a news piece about the situation in the Pasadena Star News.

Now, there have been other postings about the community of support and friendship for Tucker, including an episode on the radio program, Humankind and a blog on Indiewire a couple years back. There is even a website entitled, All Hands on Board, that links supporters and friends to updates on the artist and new work and most importantly, to each other. Even a Facebook site.

But as medical needs grow, people are now not only giving money as a tax deduction, but also donating their own art to be sold in a community marketplace with all finances raised supporting Tucker. I’m amazed at not only Tucker’s art work that is available for purchase but all the other great things.  This Community Page continues to grow with so many possibilities, it’s one stop shopping for the holidays. You must see it. I’ve got my film Travelin Trains up there. My mom has her new book, “The Devil Made Me Do It.” The incredible musicians, Alloy Orchestra, have a few of their original movie soundtracks available including, “Man with a Movie Camera.” Beautiful prints. Bardo scarves. Even stays in Florence, Italy and Cambridge, Mass. More gets added every day.

Every step of this journey has been a new discovery and when the lights go out, new discoveries are made.  Tucker normally communicates using a custom-built computer system he started designing seven years ago when he was first diagnosed with ALS. These days it is very difficult for him to communicate without the computer. When the electricity went off and running only on a small generator to power the medical equipment, the computer had to go. Tucker was forced to retreat to his only refuge – his mind.  In the program notes for his art show a couple of years ago at Monte Vista (Read the review), he wrote, “I feel it is logical, my own nervous system failing, that I would spontaneously generate an alter-ego, tear a hole-in-space and try to escape.  My situation warrants immediate and drastically uncompromising self-metamorphosis. An exquisite new aesthetic unfolds when you are standing on the deck of a burning ship. Being paralyzed amplifies the uneasy link between intent and action and brings into question the true meaning of this place and time that we occupy…and of what our ultimate audience might prove to be.”

At times he describes himself as a “brain in a jar,” but it is a brilliant brain. We thank you all, those supporters that are consistently involved in Tucker’s life, but as his neck and shoulder muscles begin to give, we are reaching out to new medical procedures like the Eyewriter  and more medical staff to keep the “brain” creating. We need to go beyond the community that knows Tucker and introduce him to those who have yet to meet him. I believe the Community Marketplace is a good starting point. Please share, buy and donate.

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As many of you know, my sister Lindsay Mofford’s husband, Tucker was diagnosed with ALS (Lou Gehrig’s Disease) a few years back.  I make mention of this here because I think some of the artwork Tucker has been doing since being diagnosed speaks volumes of the creative potential of the internet.

Tucker Stilley, former Mass Art student has always brought a unique perspective to his creative and professional work as a musician, artist, sound designer and film editor.  I’ve worked with Tucker on many professional projects including the redesign of the sound for the DVD release of my film, “Travelin’ Trains.” Because of the disease, he is no longer able to use his limbs, instead using a reflective bindi dot on his forehead to control a complex system of computer technology, largely of his own design.

His website, The Permanent Record is a portal to computer art, songs, ideas and videos rearranged and redesigned from media sources scrounged from the depths of Google and other web search engines.  Recombining the found visuals, Tucker forms multi-media collages of sight and sound, a self-described “Anarchival Research Gimp.”  A couple years back, I commissioned a video piece from Tucker for an upcoming feature film project, Press>Play.  I was amazed by the images he discovered and edited that related to the subject matter of the effect of the media on a relationship, just by surfing the net, all public domain.

A social networking support page of friends and family called “All Hands on Board” has been created through Ning.com and it has become a work of art in it’s own right.  How exciting to see all these creative people add photographs, videos and even artwork stimulated by Tucker’s life and work.  To me these are just some examples of what is possible when talking about communication and new media.  Musicians, artists, writers, filmmakers can build their own social networking sites beyond Facebook and MySpace.  These spaces become testaments and build memories.  Exciting times indeed!

An exhibit of Tucker’s work will be on display at the beginning of the new year, but if you are so inclined, some of his artwork will be on display October 23 at the REDCAT Theater (Disney Hall) in Los Angeles along with a special screening of acclaimed documentary filmmaker Frederick Wiseman’s film “HOSPITAL.”  This is a very special treat since Wisemen rarely releases his older films, (years ago, Tucker and my sister, Lindsay worked for him).  Time magazine called this Emmy award winning film, best documentary of the year in 1969.

* Get your tickets now by calling the REDCAT Box Office at 213-237-2800 *

You can also help us end this horrible disease by clicking on this link ALS/Team Tucker or send a donation to:

The ALS Association, Greater Los Angeles Chapter
Attn: Walk to defeat ALS/Team Tucker
PO Box 565
Agoura Hills, CA  91376-065

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