December 31, 2004
Ringing In The New Year...Softly
I could post something trivial about my personal highlights for 2004, but that doesn't seem right when the rising death toll from the tsunami still dominates the news. I'm going to give some more money to Doctors without Borders. Here's a list of charities that are providing relief to the stricken areas.
I hope the New Year is bright for all of you. Thanks for sticking with me through 2004.
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December 30, 2004
Eyewitness
Here are some spectacular before-and-after images of the tsunami striking Sri Lanka. The images were taken by a satellite that just happened to be positioned over the southern coast when the waves struck.
Could it be? Is Suprnova making a comeback? Can I resume downloading that cheesy Tripods series that the BBC did in the early 80s? We'll soon find out.
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December 29, 2004
Balancing Act
If I was asked to name one issue in 2005 that could affect millions of people with disabilities, it is the future of Medicaid. Medicaid, for you laypersons, is a joint federal-state entitlement program that funds health care for millions of low-income and disabled Americans. As a percentage of state spending, Medicaid is beginning to eclipse the other major budget component: education. The Bush Administration is widely anticipated to take on the ballooning costs of Medicaid in 2005. There's been some talk about making Medicaid into a block grant program. This creates problems for states if Medicaid enrollments unexpectedly rise.
What the Bush Administration is really trying to do is address the massive deficit. Medicaid needs reform, absolutely. But there are other factors that need to be considered. Many states pay exorbitantly high reimbursement rates for prescription drugs. And don't even get me started on payments to nursing homes. In FY 2003, $45 billion in Medicaid dollars were spent on nursing home care versus $4 billion in community-based services. If states could summon the political will to take on the nursing home lobby, it could result in huge savings for their Medicaid budgets. The role of perpetual institutional bias in our public health care programs needs to be acknowledged if we are really serious about controlling costs.
By the way, Medicare, a 100% federally funded program, doesn't cover long-term care. In about ten years, that issue is going to reach a boiling point when all the boomers start clamoring for in-home care and state Medicaid funds won't even come close to meeting the demand.
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December 28, 2004
Privacy, Please
A word about my linking policy. Sometimes I link to sites that require registration, most notably the New York Times. I agree that site registration is an odious practice that raises privacy issues and inhibits the free flow of information. Whenever possible, I try to link to websites that don't require registration. However, sometimes I find something interesting on one of the sites that require registration. You have a few options in this situation. You can register with the site or simply skip the article. Or you can use something like BugMeNot, which provides usernames and passwords for registration-only sites. If you have problems accessing a link, send me an e-mail and I'll try to help. And, of course, if you have a link that you'd like me to consider posting, send that as well.
My brother and I wimped out on our LOTR marathon. Instead, we've been doing one chapter each day. Tonight, I think we'll get to the third (and longest) chapter.
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December 27, 2004
Troubled Waters
The devastation left in the wake of yesterday's tsunami is staggering. Twenty-two thousand people dead and still counting. Someone (a tourist, from the looks of it) took some amazing pictures of the wave crashing into the island of Phuket, off the coast of Thailand. The NYT points out that some deaths might have been avoided if countries ringing the Indian Ocean had established an early-warning system like the one that exists in the Pacific. Most of these nations probably don't have a lot of spare cash for that sort of thing, but let's hope the world community chips so that the next time something like this happens, people in the affected areas will have a better chance of survival.
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December 26, 2004
A Noble Quest
Today, I think my brother and I are going to try watching all three extended versions of the Lord of the Rings trilogy. I'm not sure we'll get through the whole thing in one setting, but we're up for the challenge. The IV bags and condom catheters are ready to be hooked up, ensuring that neither one of us will have to leave their seats for the next ten hours. Wish us luck.
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December 25, 2004
Double Your Fun
This seemed to be the year of the Duplicate Gift. My sister gave me the Return of the King DVD, which I had already bought for myself. And both my brother and one of my nurses bought me the same book. I'm not sure I'm brave enough to fight the post-Christmas crowds tomorrow. That might wait until Monday.
My family and I went to see The Aviator tonight. Most of what I knew about Howard Hughes came mostly through reading James Ellroy novels, which tended to emphasize his more bizarre attributes. I wasn't as familiar with his role in developing commercial aviation. Leonardo DiCapprio does a fine job, but his youthful features make it difficult for him to age believably in a movie that is supposed to span twenty years.
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December 24, 2004
Borrowed Time
I'm all about spreading the holiday cheer. So as some of you are sitting down to feast on your Christmas goose, keep in mind that an asteroid designated 2004 MN4 may collide with the Earth in 2029. Bruce Willis, your country needs you.
My brother is staying with me for the next week. In the hopes of getting in some quality fragging time while he's here, I downloaded Half-Life 2. I'm curious to see how it will run on my mid-range system.
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December 23, 2004
Happy Festivus
As someone who is the product of an interfaith marriage, I appreciate the OC's contribution the holiday lexicon: Chrismukkah. Even though I'm a Bright and don't have much attachment to any of the winter holidays, I do have a string of lights hung up in my living room. For me, it's more about marking the passage of time. This year is coming to a close and a new one will soon begin. I think it's more than appropriate to take a little time out from the banalities of life, hang out with people close to you, and indulge in your chosen version of merry-making. To paraphrase Scrooge, you keep the season your way and I'll keep it in mine.
I got a phone call from my sister a little while ago, who breathlessly informed me that she received an acceptance letter from William Mitchell College of Law. A big congratulations to her. I'll have to begin teaching her the secret handshake. And I should start arranging the requisite midnight initiation rites. Let's see, where did I put that ceremonial blade? And does anybody know where I can buy a goat for cheap?
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December 22, 2004
Every Vote Counts
I've been following the recount of the governor's race in Washington and tonight it looks like the Democratic candidate will pull out a win after a month of recounts. Of course, the Republicans are not ready to concede defeat. It's kind of funny to hear GOPers suddenly clamoring for every vote to be counted. I'm happy someone from my team won, but this is also further evidence that our election system still needs a lot of fine-tuning. There is still too much potential for voters to become disenfranchised because of human error. We can probably never make the system perfect (at least not until the machines take over), but there's still vast room for improvement.
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December 21, 2004
Bad Love
Winter sucks. It was in the single digits all day today and, of course, I had to run from location to location for meetings. I know my feet are still attached, but I can't really feel them at the moment. I need to bug my travel agent about Vegas again. Or maybe I should go back to Miami and find that cute Latina with whom I had dinner last time.
This has to be one of the strangest disability-related stories I've read. A porn actress, married to a man with spina bifida, allegedly tried to help him commit suicide. She was put on trial in the UK for aiding and abetting the suicide attempt. Today, the court found her not guilty. She apparently sent her husband a text message days before the suicide attempt that read "Why don't you get on with it. It would make a lot of people happier." I'm betting this probably wasn't the healthiest of relationships. And apparently this guy appeared in films with his wife. I wonder if he needs a stand-in.
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December 20, 2004
Define "Normal"
Whenever I have a day where I'm struggling to find a blog topic, something usually turns up in my web searches. Like this article in the NYT discussing a movement to see autism not as a disability (registration required; just deal) but as another type of brain wiring that doesn't require a cure. Their contention is that society is too eager to force people with autism to conform to accepted norms of behavior. Instead of tolerating the characteristics that make people with autism unique, we want them to act like everyone else. As the article points out, this attitude mirrors those of other groups who object to attempts to define them as sick or defective. Deaf culture is the most obvious example. Analogies could also be drawn to the gay community and the repulsive efforts to "cure" them. Many in the disability community would sympathize with the arguments made by the people quoted in the article. I've often said that it's not my disability that poses the most problems for me; it's the attitudes and preconceptions others have about my disability. And those attitudes (or, to be more accurate, ignorance) throw up all kinds of barriers, both physical and interpersonal. I'm not saying that the concerns of parents and families should be ignored. If I was the parent of a kid who screamed like a banshee because of the fluorescent lights in the grocery store, I'd be freaking out a little bit too. But I still think we need to balance those concerns with a heightened tolerance, maybe even appreciation for, the singular personalities of people with autism and their unique perspectives of the world
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December 19, 2004
Listmania
Now that we're approaching December 31st, everyone feels obligated to share their top-ten lists for the year in almost every area of human consumption: Top Ten Books, Top Ten Albums, Top Ten Gadgets, Top Ten News Stories You'll Forget A Year From Now. If you go for this sort of thing (and I'll admit that I do), you'll find an extensive list of lists here.
Aargh. SuprNova shut down. I need to find a new source for my high-def eps of Lost. Damn, that was a really good site, too. Anybody have some good alternatives for me?
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December 18, 2004
Back On The Chain Gang
The way some Christians are carrying on, you'd think that Christmas celebrations had been driven into the underground until the reelection of Bush. Honestly, I don't care whether people say "Merry Christmas" or "Happy Holidays" or "Joyous Kwanzaa." Just give me my damn presents and go on your way. But let's cool it with the crocodile tears about Christians being persecuted over what greeting you can use with the fucking check-out girl at Wal-Mart. Please.
I want the Live Aid DVD. I was watching a clip of it on the NPR website that included a Pretenders performance. Chrissie Hynde is a goddess. I was only eleven when Live Aid aired, so I don't really remember much of the hype, but the 80s geek in me wants to see some of these performances, especially Queen and U2.
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December 17, 2004
Fall From Grace
I've only just begun to take notice of David Blunkett's resignation as UK Home Secretary. I didn't realize he was blind and, as this article notes, his story could be an interesting model for future leaders with disabilities. Here is a man with a disability who rose to the highest echelon of British politics. But he's no Supercrip. Like everyone else, he has flaws that have been on full display to the British public. In a way, his story is refreshing because of the scandal. I've certainly fucked with people's expectations of me as some wide-eyed innocent, but Blunkett has me beat.
Here's a picture of me in front of the USS Constellation moored in Baltimore's Inner Harbor:
And here's a photo of a rather unfriendly-looking shark in the Aquarium:
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December 16, 2004
Frequent Flyer
I returned from Baltimore a couple hours ago and everything went well. The Hyatt on the Inner Harbor is to be commended for their accessible rooms. The bathroom was nicer than the one in my condo. I didn't make it to the aquarium, even though both of my nurses did. Bastards. I actually had to work.
Will post some pictures tomorrow.
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December 14, 2004
Feed The Children
If you're trying to think of a charity for your holiday donation, consider supporting Doctors without Borders and their efforts in Darfur, Sudan. The conflict might have fallen off the radar of corporate media, but the problem hasn't gone away. I just donated $35, which can provide two high-energy meals to two hundred children.
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December 13, 2004
Nudge, Nudge
Somebody out there better be getting me a new iPod for [insert winter holiday of choice here], because mine is officially full. Which sucks because I can't load my mp3s of the Hitchhiker's Guide to the Galaxy for the flight tomorrow. I prefer the 60GB iPod photo, but I suppose I can settle for the 40GB model.
Not sure if I'll have time to blog in Baltimore. Maybe I can talk one of my nurses into typing a short entry. Otherwise, I'll catch you all on Thursday.
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December 12, 2004
Dirty Minds
I need to start packing, but check out Frank Rich's column in the Sunday Times. Rich has been doing some good post-election cultural commentary. This week, he uses the film Kinsey as a springboard for comparing the the chilling effects of the right wing on cultural attitudes in our time and in Kinsey's. He nicely illustrates the right's near-pathological aversion to discussions of sexuality and how those attitudes exert a disproportionate influence on our media. Let me me add that we live in country where a few hundred people can spam the FCC into doing their bidding, but at the same time the adult film industry does billions of dollars in annual business. The cognitive dissonance is astounding.
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December 11, 2004
The Madding Crowd
A short entry tonight because I was out most of the evening, doing some holiday shopping. I took the train from downtown to the Mall of America, partially as a test run to see how long it would take me to get to the airport on Tuesday. Other than being a little crowded on the way home, the ride was smooth and uneventful. At the mall, the crowds were in their customary state of holiday oblivion, darting in my path like overstimulated deer. My nurse was quite miffed. "Are you a magnet for stupid people?" she asked when we got home.
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December 10, 2004
Intellects Vast And Cool
I'm geeking out over the trailer for Spielberg's War of the Worlds. I mean...dude! It's a great trailer because it piques interest in the movie without hitting the viewer over the head with noise and eye candy. I love the mise-en-scene (and I dare you to find five other bloggers using that phrase) that's established in the closing shot. The suburban landscape with the ominous lights flickering on the horizon...it's evocative without being over-the-top.
I've been sampling various podcasts. Adam Curry's Daily Source Code is the most polished and entertaining. But given his background in radio, that's to be expected. A lot of the other stuff is pretty geek-centric and I'm still looking for something that isn't more or less a talk show.
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December 09, 2004
Welcome To Jesusland
I think the commenting problems have been addressed. MT-Blacklist was being a little overenthusiastic, but it should play nice with everyone now.
Today's Star Tribune includes an article detailing a legal settlement involving Fairview Medical Center and the Americans with Disabilities Act. Some patients who are deaf and were receiving treatment at Fairview sued the hospital because the hospital did not provide adequate sign language interpreter services. In some cases, the interpreters provided were incompetent. In one instance, the interpreter's spouse tried to convince a patient to come to some kind of alternative healing center for treatment. The callous and unprofessional treatment these people received is disturbing, especially considering that it occurred in a medical setting. Imagine how confused and scared you would be if you couldn't understand the people who were poking and prodding you with assorted instruments. Like I keep saying, businesses and institutions are still clueless about their duties to accommodate people with disabilities a decade after passage of the ADA. We still have this Darwinian view of disability; adapt or die, but don't make it our problem. We need to do a better job of getting these companies to understand that accommodations are a normal part of doing business with the community. Oh, and you don't do that by having one day of diversity training for managers that may or may not include an hour's worth of discussion on disability issues.
Fairview is settling for $208,000 and a judge will oversee Fairview's future compliance with the ADA.
Let's see, what else is pissing me off? Oh, yeah, Time and Newsweek have virtually identical covers this week. Okay, I know that slapping Jesus on the cover of a magazine probably boosts sales in the heartland. But c'mon, Time and Newsweek! Did you call each other over the weekend, sweating out your respective deadlines, and finally say, "Ah, fuck it. Nobody will notice." I don't mind when you have similar covers after a big news event, but I didn't realize the birth of Jesus was a breaking story.
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December 08, 2004
Brown Nosing
According to a recent Gallup poll, nurses were ranked as the most being the most ethical and trustworthy professionals.
Attorneys were ranked #19.
You have no idea how much shit I'm going to get from my nurses once they get wind of this. And in the interest of ensuring my own continued health and well-being, I will emphatically declare my concurrence with the poll results. Nurses are, in fact, a most estimable lot and I have no doubt that many of my nurses would qualify for sainthood if given the opportunity.
Okay, I'm gonna quit it before I completely lose my dignity.
I'm trying to think of an audiobook to download onto my iPod for the plane to Baltimore. I've been meaning to read Eric Schlosser's Fast Food Nation and I saw it on Audible. Any other suggestions?
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December 07, 2004
Eats, Shoots And Leaves
One thing that I simply cannot stand are badly written e-mails. And apparently I'm not the only one. I know quite a few intelligent people who seem to have only a passing familiarity with the written English language. Are we English majors the last line of protection against a world where capitalization and punctuation don't exist? I've tried writing sloppy e-mails when I'm pressed for time, but I can never bring myself to hit "Send." I always go back and edit everything. Dr. Pennington, my Advanced Composition prof at St. Norbert, would be proud.
Someone told me they tried posting a comment but that if was rejected for "inappropriate content." The hell? Other than spammers, everyone is free to comment. The dirtier, the better, in fact. Is anyone else having this problem?
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December 06, 2004
Signs & Portents
I had another Humphrey Fellows session today. I was joking with a friend that we need to have a session on a topic that doesn't leave us completely depressed afterwards. Because right now I'm convinced that we'll all be scrounging landfills for food in a few years because a loaf of bread will cost a hundred dollars. And that's the good scenario. The worst-case scenario is that we get hit with a terrorist attack that makes 9/11 look amateurish. I better make that trip to Vegas soon, before everything goes to hell.
Almost at page 300 in the book. I'm thinking another 150-200 pages, but conciseness has never been my strong suit.
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December 05, 2004
Pod People
I'm trying to get into podcasting. I don't like the deliberately obscure term, but podcasting is to radio what blogs are to print media. Podcasting enables people to distribute audio content over the internet cheaply and easily. People can use something similar to an RSS reader to check for new programs and download them to their computer/MP3 player. I'm looking for content suggestions to check out, so send 'em if you got 'em. But can someone come up with a better term that doesn't make people think of iPods? Mainstream users aren't going to adopt this if the term isn't more descriptive.
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December 04, 2004
Different Strokes
I was committing the rare act of channel surfing last night when I stumbled across an HBO documentary on the porn industry in the San Fernando Valley, with a particular focus on the various fetish subgenres. Oh. My. God. I usually consider myself a sophisticate in matters of human sexuality, but I am a really a wide-eyed innocent when actually confronted with some of this stuff. Sex with lactating women. Sex with women of extremely short stature. Sex with extremely large women. Sex with guys dressed up like Sasquatch. Sex between old guys and young women. I actually had to look away a couple times. Given the seemingly infinite range of stimuli that will arouse sexual desire, I'm convinced there's a market for porn featuring actors with disabilities. Some enterprising soul could probably turn a nice profit if they pursued the idea aggressively enough.
And before you get the wrong idea, no, I'm not interested in being on screen. I'd rather write and direct. Although I could probably be persuaded to substitute in a pinch, if I'm matched with the appropriate co-star (warning: NSFW).
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December 03, 2004
Vegas, Baby
After some more consideration, I think my winter vacation will be in Las Vegas. I'm sure Mexico would be great, but I have some concerns about accessibility. And from everything I've seen and read, the city is a gimp paradise. Everything is accessible; I don't even need to rent a car unless I want to get out of the city and see Hoover Dam or Red Rock Canyon. My other reason is more personal: while I'm still young and relatively healthy, I want to go places that are vibrant and appealing to the senses. I'm not ever going to go snorkeling or parasailing, but I can still experience places through sight, sound, touch, taste, and so on. Miami was perfect for that sort of thing, and I think Vegas would be as well. The sheer gaudiness of the place intrigues me. Exploring the Strip after dark sounds like great fun. And I'm not adverse to a little gambling, although I'll probably stick with the simple stuff like blackjack and roulette. Now, where to stay? The Bellagio and the Luxor look like fun, but I'm still checking out the possibilities.
And next year, Europe, hopefully.
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December 02, 2004
The 411
I don't get all the noise we're hearing about Tom Brokaw and Dan Rather and who's going to sit in what chair on what nightly newscast. I haven't watched a network news broadcast in at least ten years. All of my news comes from the Net, NPR, and a few weekly magazines. Sitting through a 30-minutes newscast (20 minutes if you exclude the commercials) seems like a monstrous waste of time to me. If I really need a dose of television news, I'll flip on CNN for a few minutes. In general, though, I'm not compelled to listen to the dronings of a bland white male on a daily basis.
I heard an interesting analogy yesterday. It was in the course of a discussion about the difficulties people with disabilities experience when trying to access the services they need, whether it's health care, job training, housing, etc. Here's the analogy: imagine yourself in the Mall of America. Scattered throughout the mall are directories that list vendors specializing in categories like clothing, electronics, books, overpriced food served in a creepy atmosphere, whatever. The directory shows you where the vendors are located in the mall, making it a relatively easy task to find them. Now imagine trying to navigate the mall without the directory. This is the struggle that many people with disabilities confront. There is an abundance of services and programs available to them, but most people have no idea that those services exist or how to access them. It's this information gap that is one of the biggest sources of frustration for those of us in the world of disability policy. The success of a particular individual in accessing appropriate services is entirely dependent on the quality of information they receive from teachers, social workers, peers, and any number of other sources. And if that information is inaccurate or simply isn't conveyed, the individual is denied services or opportunities that could make all the difference.
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December 01, 2004
Jetsetter
Today is World AIDS Day. Let's take a moment to remember the 20 million who have fallen as well as those who are currently fighting for survival. And let's hope that each day brings us closer to the reality of a long-promised vaccine. And let's celebrate life by practicing safer sex with our partners.
I got formal approval to go to Baltimore in two weeks. And then I'll be back in the area a couple months later when I go to DC with the other Humphrey Fellows. The timing is good because our light-rail line that currently runs from downtown Minneapolis to the VA Hospital will soon begin service to the airport. Which means I don't have to worry about getting a ride. City living is good.
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