procrastiNATION

In a culture afraid of aging, being poor, or being ugly, disability is tucked away with everything else that we choose not to face - "pollution doesn't cause global warming..." We are collectively in denial about so many things - a procrastiNATION.

spaceship mars

I've been catching up on my subscriptions to Analog Science Fiction & Fact and Wired, so I don't know if it was one specific story or the combination of several, but I've been wondering what Bucky would say about terraforming other planets. In Critical Path, Bucky says,

What we do know however is (1) that with the unselfish use of technology, it is now possible to take care of all humanity at a higher standard of living than any have ever experienced and do so on a sustaining basis by employing only our daily energy income from Sun and gravity and (2) that we can do so in time to permit the healthy continuance of humans on planet Earth.

However, it took quite a while to learn how to do "more for less" (as he says throughout the book). Initially, life on another planet such as Mars would require work that is essential for survival until we have figured out how to do more for less. Bucky often says that the majority of people on earth who are "working" are not contributing to the survival of the species and it seems that the only people who are doing "real" work are farmers. However, to do less with more we've created machines that pollute. Therefore, researchers developing fuel-efficient cars are also essential for survival of Spaceship Earth and her passengers. While we find ways to do more for less, we also need to determine ways to distribute more for less - which is the point that William keeps returning to when he mentions the starving babies.

disability and human rights

International organizations

• United Nations - enable - "(i) to support the full and effective participation of persons with disabilities in social life and development; (ii) to advance the rights and protect the dignity of persons with disabilities and; (iii) to promote equal access to employment, education, information, goods and services."


• Disabled Peoples International - "a network of national organizations or assemblies of disabled people, established to promote human rights of disabled people through full participation, equalization of opportunity and development."


• Human rights and disability - Amnesty International interview with Bengt Lindqvist, former UN Special Rapporteur on Disability (July 2003). Surprised to see that AI doesn't list "disability" as a theme. Although, in 2003 AI reported about conditions faced by people with "mental disabilities" in Bulgaria.


• Disablism - How to tackle the last prejudice by Paul Miller, Sophia Parker, and Sarah Gillinson. very good read

The prejudice and discrimination that people with disabilities experience is the product of the more general human tendency to label as "inferior" those who are somehow different. The only way to change this experience is to educate every member of society to see disability for what it really is -- a condition that may make everyday life more challenging, but that does not affect a person's soul, spirit, creativity, imagination or determination.

When society's attitudes are more welcoming, so will be the designs that we use to communicate, work, shop, and play. When designers understand that it is the stairs leading into a building that disable the person using a wheelchair rather than the wheelchair, they will innovate new building designs."

Based on Human Rights and Disability (1988) and South African White Paper on an Integrated National Disability Strategy.

Why comment on this today? I've been reviewing a CD about Project APPLE and trans-active - an authoring system to create multimedia "passports" for people with learning disabilities.

Offensive cups and meal cards

Boing boing writes about conservatives railing against liberal-minded aphorisms on Starbucks cups, "can't I enjoy a coffee without thinking about Earth Day!" Time to resurrect "Would you like a little Old Testament with your coffee?" - the story about Alaska Airlines' meal prayer cards.

tattoos and pooches

From time to time (usually after a long week of work), I obsess over some extremely trivial story about a Hollywood star's life. This week, the seed was planted by Letterman when, throughout his interview with Sandra Bullock he showed photos of Jesse James. She squirmed, smiled, and evaded questions about Jesse, tattooed men, and motorcycles. Today, I went searching for info. I'm happy to report there isn't much information (although there are some password protected photos on blogspot...but I'm not that desparate).

In my search I stumbled on the recent John Stewart interview. He didn't ask about Jesse, but the quick-witted exchanges made me double-over with laughter. Talking about firing automatic weapons as research for her role in Miss Congeniality, Sandra says, "I didn't realize the power of wielding a large..." which causes them to wander through phallic lane. At one point John says, "Suprisingly, mine also fires several rounds" and later Sandra comments, "Well, you've got a big desk." (I am not going to try to do it justice. You'll have to watch the interview for maximum effect.)

Needless to say, I think Jesse - who just divorced a porn star - and Sandra - who was happy about filming in Austin so she could "wake up with her pooches" - would make an excellent couple and would be fun to watch...especially since it would be so hard to dig up any details.

Here's me hoping they are an item...

thinking about media and disability

For the last three years, I've been creating a list of fictional stories that have characters with disabilities, non-fictional stories of people with disabilities, and visual art that captures issues or ideas related to culture and disability. This weekend I saw, "The Rue Mosnier with Flags" (1878) by Edward Manet. The description next to the painting said, "By contrasting the patriotic decorations on a prosperous avenue with a disabled veteran, the artist called inequities in contemporary French society."

I haven't determined if stories about people who are blind are more common than stories about people who are paraplegic, but it seems that people who are blind are more likely to be portrayed as a "super hero" or "genius" or "oracle" (DareDevil, Zatoichi, Ray Charles, "Blind Justice," Eric Weinmeyer, Oedipus, "The Country of the Blind" by H.G. Wells, etc.) while characters who are paraplegic seem to be more acceptable on prime time television (X-Men's Professor Xavier, Family Guy's neighbor who is a policeman, Malcom in the Middle's Stevie, Born on the Fourth of July, Forrest Gump, etc.). Although, "Blind Justice" and "Becker" bring blindness to prime time television. I have also found stories about people with autism, Down's Syndrome, cerebral palsy, and who are deaf or hard of hearing or quadriplegic (The Waterdance)...but, that's another story and a list that I should keep up-to-date on my blog (someday...).

Today, I read "At War With Their Bodies, They Seek to Sever Limbs" about a condition where a person desires to amputate a healthy limb. Since 1977, several names have been given to the condition, including, apotemnophilia (literally, love of amputation), amputee identity disorder, and most recently, body integrity identity disorder. A person who has this desire said,

It wasn't so much that I wanted to be an amputee as much as I just felt like I was not supposed to have my legs. From the earliest days I can remember, as young as 3 or 4 years of age, I enjoyed playing around using croquet sticks as crutches. I enjoyed thinking about what it would be like to be missing a leg. When we were playing cowboys and Indians, I seemed to be the person who always got wounded in the leg.

I'm interested not only that this story is in the news, but that there are several recent fictional stories about the condition:

At the New York International Fringe Festival last summer, an award for best overall production went to "Armless," a play about a middle-aged suburbanite with the disorder. The playwright, Kyle Jarrow, said his goal was to explore "the line between gross and spooky and funny and poignant."

In November, an episode of "CSI: New York" featured a man with the disorder who bled to death after he tried to saw off his leg. And last month, a screening was held in the East Village of "Pretender's Dance," a short film by Tom Keefe about a young choreographer and her boyfriend who wanted amputation.

I wonder how people will react. Will these stories raise awareness about the issues that amputees face in daily life? Will news and fictional stories increase society's empathy and desire to create change? Or cause people to look at an amputee and wonder, "was it an accident or a choice?" Are there any people who wish to lose their sight, hearing, or cognition?

I hope that these productions raise awareness and start a dialog that encourages multiple perspectives to be expressed that coalesce into a new shared understanding. I haven't seen Million Dollar Baby, yet, but I was surprised that I didn't hear more in the popular media about the protests of the movie and articles such as Seeing Million Dollar Baby From My Wheelchair by Diane Coleman. She writes,

Moreover, the threat of assisted suicide and euthanasia are daily fare for Not Dead Yet. We fight to be heard over the loud voices of players on both sides whose interests should be readily seen as, at best, secondary to the organized voice of those society says are "better off dead." So many of us have died too young, never getting a real chance to live.

In the midst of all that reality, what makes a fictional movie like Million Dollar Baby so disturbing that I want to flee?

As the movie unfolded to its star-powered conclusion, audience members sniffled in pitiful admiration of Maggie's determination to die rather than move on and leave her non-disabled life behind. They were deeply moved by Frankie's redemption through fatherly love, his wish to help her live and his profound sacrifice in giving up everything he had to free her from her "frozen" body. This is the bittersweet ending that inspires so much acclaim.

Perhaps the dialog has begun. Maybe this is why the U.S. is closely watching the Terri Schiavo story. Hopefully, we can set aside the politics and talk about the underlying issues.

One last bit about body integrity identity disorder: reactions by people who have lost limbs to accidents or disease:

[They] are often horrified when they learn about healthy people who seek amputations.

"It's very difficult for people who have been through what they consider to be a devastating life experience to understand why anybody would want to mutilate himself in this way," said Paddy Rossbach, president of the Amputation Coalition of America, an advocacy and support group. "Especially when so many people are having tremendous problems with prosthetic fittings, or access to prostheses, and are living with pain every day of their lives."

werewolves - interactive people watching

After a week of eXtreme meeting (exact total to be calculated on the flight home)...at the point of exhaustion and stomach cramps from six days of hotel food, I took my game to the next level by playing werewolves until 1 a.m.

I think the game is less about being a good liar and more about being able to sooth anxiety, keep focus on the role you are playing, and being in the moment. When a werewolf, it is not so much that you are hiding that you are a wolf, but trying to sense who is the seer. More than anything, I found the game an excellent way to fine-tune my intuition. I'd love to play the game with other participants in our committee to discover how they disclose (or not) information. Although, now I worry that my co-workers will never believe me again since I did not raise suspicion when I was a werewolf. ;)

p.s. Instead of thinking, "I'm not the werewolf" think "I'm looking for the seer." Focus on what you are doing instead of what or who you are not.

eXtreme meeting

After 4 days of \m/ hard core \m/ meetings, the rules to Extreme Meeting were figured out over milk, cognac, and a blueberry crisp.

Basic Points:
1 point for each person you speak with (+1 if famous)
2 points for each hour of meetings
(Bonus: If 10 hours, +10 points)
2 points for each consecutive day of meetings
(Bonus: 10 points for 5 days in a row)

Degree of difficulty:
1 point for a casual conversation with a peer
2 points for agile maneuvering
3 points for spirited rap session (+1 for spit or blood)
4 points for carrying on two meetings at once

Stylistic Points:
1 point if you win the seat limbo at the end of the night
1 point for each 2 pounds gained or lost
2 points for traveling to multiple meeting venues in one day
5 points for drooling or twitching by the end of the day

Sleep deprivation:
1 point for 4 hours of sleep (Bonus: 40 points for 0 hours)
+2 if you don't fall asleep during the meeting
+5 if you arrive at a meeting straight from a 5+ hour red-eye flight
+40 If the total hours of sleep over the course of 3 or more days of meetings is 25% of the total hours of meetings

Penalties:
-1 if you are the first of the group to turn in for the evening
-1 for each 1/2 hour you didn't meet with someone during the day
-1 for failing to notice spinach in your teeth after lunch
-10 for 8 hours of sleep

Tally your points and compare!

===

Next, we'll film a reality show...who will be the first voted to leave the hotel? Probably no one since hard core meetings aren't about making decisions, they are about deft political maneuvering and tallying style points. Even if we do reach consensus today, we will have forgotten by tomorrow.

K will do the play-by-play and J will provide color commentary....