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.

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.

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.

I’ll be curious to see how much attention Americans will give to the bombings that killed so many in Madrid today. Americans are kind of pre-Copernican in their worldview; we assume that the rest of the world revolves around us and whatever happens here. And then we shrug our shoulders and change the channel whenever there is a human tragedy somewhere beyond our shores. Maybe it’s some weird interplay of geography and psychology. Being bounded by two oceans probably encourages our isolationist streak. I thought 9/11 would force Americans to become more engaged with the world, but that hasn’t happened. If anything, it seems that we’ve turned even more inward.
One of my work-related perks allowed me to purchase a copy of Office 2003 for only twenty bucks. I installed it earlier tonight and I’ve been messing around with it. I like the new Outlook and the little pop-up that appears when new mail arrives. And Word has a nice look to it; I’ve been using Word 2000 the last few years and it always felt kind of klunky to me. I’m not sure if all this new software will make me more productive, but it sure looks purty.

I went to see my doctor today because I’ve been having a weird little pain in my left side. Nothing serious, but I wanted to get it checked before I left for Miami. They didn’t find anything, which I guess is good. But in the course of my checkup, various nurses and doctors and other assorted professionals had me in various states of undress. Now, I’m not a shy person. Years of being cared for by nurses and PCAs have kicked a lot of the modesty right out of me. When I stop to think about it, hundreds of people have probably seen me naked. Many of them are probably still in therapy, recovering from the trauma. If I were an exhibitionist, I’d probably be filled with a great sense of accomplishment. However, I sometimes wish I had a bit more privacy in my daily life. Everything about me is always on display. Not just my body, but my work, my interactions with friends, my compulsions, etc. I suppose it’s the price I pay to live my life, but I still crave those fleeting moments that belong only to me.
I have to give a brief speech at the U of M Law School tomorrow. It’s a recognition ceremony for students who have completed so many hours of public interest work. I never prepare for these things, so I’ll probably wing it and hope I sound like I’m making sense.