Mar 212004
 

Another birth in my circle of friends to shout out to the rest of the world. My nurse Michelle recently gave birth to a beautiful daughter, Anna. She has two sons and she kept telling me she wouldn’t believe the third was a girl until she saw it for herself. I think she can start believing it now.
A quick book update. A little more than 150 pages and counting. I’m at a point where I begin to see the shape of the plot for the next…half?…two thirds? I know where I want to go, but it’s difficult to judge how long it’s going to take to get me there.
Do people find the design for this site boring? Seems like all the cool blogs have some visual element that makes them distinctive. Then you have mine, which kind of looks like the Brand X of blogs. If people have ideas for a logo or other ways to add visual flair to my soliloquies, e-mail them to me and I’ll look at them when I return from my trip. I know I’ve put out this call before, but I figure it doesn’t hurt to try again.

Mar 202004
 

While I’m enjoying a few days of hedonism in Miami, guest-blogging duties will be handled by my good friend Charles. Charles and I were classmates in law school and we lived in the same West Bank apartment building for several years. We share the same dry sense of humor and he is a writer of considerable skill. I’m confident that he’ll keep all of you amused while I’m away. And I won’t be completely abandoning you. My hotel has high-speed access and I’ll try to post a couple updates and maybe a few pictures documenting my time in tragically hip South Beach. So give Charles a warm welcome and play nice with him while I’m gone.
I’m a big fan of The War of the Worlds. I own the DVD and I pop it in whenever I’m in the mood for something old skool. And now I hear that Steven Spielberg and Tom Cruise are thinking about doing a re-make. It could be brilliant or a disaster. Part of me imagines the end of the movie as directed by Spielberg: Tom Cruise kneels beside the body of one of the dead aliens and cradles it in his arms, tears streaming down his criminally boyish face. “I could have saved them,” he whispers, gently rocking back and forth with the alien corpse in his lap. “We could have been…friends.”
Fade to black.

Mar 192004
 

I forgot to mention that my new wheelchair was finally approved by Medical Assistance, after only a year of waiting. I even got to pick out the color: Midnight Blue. I’m gonna be one stylin’ gimp in my bitchin’ new ride. I actually met one guy at a work function who had tricked out his wheelchair with neon running lights and speakers on the back of the seat. He must have spent hundreds of dollars on customizations. It was like something out of The Fast and the Furious. You think you could make a movie about a bunch of badasses in souped-up wheelchairs, going around and robbing banks and blowing up cars that are illegally parked in disability spots? Maybe throw in a couple really hot sex scenes involving a Hoyer lift? Would it sell tickets or is it more of a direct-to-video concept?

Mar 182004
 

MIT did an interesting study on blogging. Here are some of the findings:
– the great majority of bloggers identify themselves on their sites: 55% of respondents provide their real names on their blogs; another 20% provide some variant of the real name (first name only, first name and initial of surname, a pseudonym friends would know, etc.)
– 76% of bloggers do not limit access (i.e. readership) to their entries in any way
– 36% of respondents have gotten in trouble because of things they have written on their blogs
I find the last statistic particularly interesting. 36% seems awfully high to me. Are people really that thoughtless about the things they write in a public blog? Over the year and a half I’ve been doing this, I’ve developed some rules of thumb for my own blogging. I keep names of friends and family anonymous. I don’t write extensively about work. I re-read everything before hitting the PUBLISH button to make sure nothing is overly harsh or revealing. No, the only person that will be portrayed as a jerk in this blog is me.
Did anyone see the Courtney Love interview on Letterman last night? I liked the last Hole album, but I was about ready to reach through the television and slap her across the face. What a strung-out, narcissistic has-been. And what happened to her voice? It sounded like bald tires screeching over gravel.

Mar 172004
 

If any of you are in the NY area on March 25th, clear your calendars and check this out:
Reading of
VOICES FROM THE EDGE
Narratives About the Americans With Disabilities Act
Thurs. March 25, 6:30-8:00pm The Baisley Powell Elebash Recital Hall at the The CUNY Graduate Center
365 Fifth Ave (34th St. & Fifth Ave.)
Featuring John Hockenberry, Leonard Kriegel, Stephen Kuusisto, and more.

It sounds like a great event and a fascinating book. If you want to learn more about the book and the event, go here. I really do hope lots of people with disabilities turn out for this event. As a community, I think we are sometimes guilty of not recognizing the writers and thinkers with disabilities who are contributing so much to our nation’s intellectual life. So go and get enriched and stuff.

Mar 162004
 

My plane tickets arrived in the mail today. It made my trip suddenly feel a bit more real. But goddamn, why is it so expensive to rent an accessible van? A hundred bucks a day! For that much, it better come with a DVD player and a frickin’ jacuzzi in the back. By the way, what’s the deal with watching porn in the car? As if people weren’t distracted enough while driving by cellphones, eating, doing their makeup, etc. Now I have to watch out for the sexually frustrated middle-aged guy in his fully-accessorized Hummer who can’t watch his Asia Carrera movies at home because his wife might find them.
Ugh. What do I do at work all day? Write on the computer. What do I do when I get home? Write some more. Excuse me while I restore feeling to my wrist.

Mar 152004
 

I think I’ve written before about Nick Dupree and his efforts to change Alabama’s Medicaid home care regulations, which, until very recently, denied home care services to anyone over age 21. This message from Nick was sitting in my inbox when I got to work this morning:
Another tragedy has struck in Mobile due to Alabama Medicaid’s 21 cut-off policy. And it’s pretty close to home.
My family has known Chris Wiggins since we moved to Mobile, Alabama in 1983, I was 1 years old then. Chris had Duchenne’s Muscular Dystrophy. His mom and my mom started a sort of two-person parent support group. Around 1999 I think, Chris turned 21, and of course lost his care. Alabama provides nursing care through EPSDT, they are mandated to. But after age 21, people are no longer eligible for EPSDT, and Alabama does not provide any sort of full-time care through other programs (except for the handful like me on the new, inappropriate, insanely over-medicalized AT waiver, or people with MR allowed on the MR/DD waiver.) Chris’ parents were trying to do his care 24/7, alone. They had not fully slept in 4 years or something. Chris wrote up something about his problem and I put it on my Crusade web site. In his message, he wrote of his fear that unless he could get some sort of care back, his ventilator tube could come disconnected and no one would be there or wake up to hear his ventilator alarms in time to save his life. As you know I’ve been warning about the dangers of providing no support to people after age 21 for years.
March 4, Chris’ ventilator tube came off, and no one woke up. Once found, Chris was taken to the hospital, where he was in a coma and brain dead from the prolonged lack of air to the brain. Tuesday night, March 9, Chris died.
He was 26.

There’s not much I can add to this. I’ve always joked with my nurses that I’d die a “stupid” death. Something like my ventilator getting accidentally turned off and no one noticing. It’s hard to joke about that now. This was a stupid death in every sense of the word. It’s a stupid, meaningless, preventable death where nobody and everybody is to blame.
When it comes to issues like home care and community integration, Minnesota and Alabama aren’t just on separate planets. They’re fucking galaxies apart.

Mar 142004
 

I should start going through my packing list for Miami. As you can probably guess, I have to pack more stuff than the average person when I go on vacation. Mostly backup equipment and the like. My supply company will ship some of the stuff I need, so that will help. I’ve done this enough times to know what I need and to make sure it’s organized. I get deeply paranoid that I will forget something critical. That’s why I have a list. I made it for my trip to Denver in 2000 and it hasn’t left my hard drive since then. I’m something of a digital pack rat. You should see my old e-mail file. I’ve probably stored up to 2000 messages since 1997.
From The Onion:

Those CP’ers are a bunch of poseurs when it comes to evil. The SMA Cabal will have to put them in their place.

Mar 132004
 

So is blogging the liberal equivalent of talk radio? This guy seems to think so. It’s an interesting meme, but blogs have a long way to go before they reach the ubiquity of talk radio.
I’m currently grooving on Nellie McKay. A friend of mine described her as a cross between Eminem and Sarah Vaughn, which is pretty apt. I hope she gets more exposure. I mean, hell, she raps about Paul Wellstone. You don’t see that in a Clay Aiken song.

Mar 122004
 

Some guy who got beat up in high school one time too many has started a website called technosexual.org. Here’s the definition of a technosexual, lifted from the site:
He is a man of style and tech sophistication: he may be seen at an NBA game one night, then an art gallery opening the next; all navigating through life with the empowerment of technology. From PDA’s to mobile phones. A wireless environment. He is the new male ideal: the technosexual� man.
Jebus, do you believe that shit? I guess the old labels of ‘geek’ and ‘nerd’ were too oppressive for him. They didn’t carry that air of savoir faire that “technosexual” has. *snicker* And here’s the kicker. This asshole co-opted the word from another niche group who share the desire to get busy with all things robotic and mechanical. At least the original meaning is a bit more sincere than this PR-ready nonsense cooked up by a guy who needs to be slapped with his copy of Details magazine.
I think of myself as a geek. I’m proud I’m a geek. Geeks are cool. And yes, geeks are sexy.
I had my own little Gawker moment today. Kind of. I was running some errands in the skyway when we passed a tall guy accompanied by a very pretty woman. A minute or so later, this conversation ensues:
NURSE You know who that was?
ME: No.
NURSE: Kobe Bryant.
ME: Shut up.
NURSE: No, really. It was.
And I think he was right. After all, the Lakers are in town tonight. To be honest, I was looking at her more than him.