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May 31, 2008

Setting Myself Up For Failure

After observing the dust-up surrounding Al Franken's 2000 essay for Playboy, one thing is eminently clear. I can so never run for office. This blog has enough material to kill any political aspirations I might have several times over. Imagine all the negative political ads that could result:

"Mark Siegel says he has your best interests at heart. But all he can really think about is fishnet stockings. A quick search of his blog reveals that he mentions fishnet stockings over a hundred times. Do we really want someone like him serving on our Parks Board?"

Posted by wintermute2_0 at 01:12 PM | Comments (2)

May 30, 2008

Approach With Caution

Here's an excerpt from an official guide for volunteers at the Beijing Olympics regarding appropriate disability etiquette:

Some physically disabled are isolated, unsocial, and introspective. They can be stubborn and controlling . . . defensive and have a strong sense of inferiority.

And believe me, that's on a good day.

It goes on:

They show no differences in sensation, reaction, memorisation and thinking mechanism from other people, but they might have unusual personalities because of disfigurement and disability.

Wow, it's like the people who wrote this book are talking about me.

I hope they didn't leave out any vital information, like our hatred of sunlight and how we bring bad luck to anyone unfortunate enough to accidentally touch us.

Posted by wintermute2_0 at 03:16 PM | Comments (0)

May 29, 2008

New Arrival

It's all too easy to become jaded in this world of commonplace wonders. But some things still manage to impress me, like these pictures beamed back from the surface of Mars courtesy of the Phoenix lander. Shooting a probe at another planet and landing it successfully is no small feat and a million things could have gone wrong along the way. Not bad for the same race that invented ringtones.

Posted by wintermute2_0 at 07:28 PM | Comments (0)

May 28, 2008

Critic At Large: Indiana Jones And The Kingdom Of The Crystal Skull

I went into this movie trying not to expect much. After the trauma the Star Wars prequels inflicted on me, I've become deeply suspicious of George Lucas' efforts to revive the pop culture touchstones of my childhood. But soon comes a scene of Indy dodging Soviet bullets in a musty Army warehouse and I'm beginning to think that not every eagerly anticipated thing in life has to end in disappointment. For the first hour, Spielberg executes one bravura moment of popcorn cinema after another.

The second half...not so much. The story gets bogged down in its efforts to lead the audience through a breadcrumb trail. The CGI is glaringly obvious in parts and the science fiction elements are kludgy. This fourth chapter of the Indy franchise doesn't sustain the same exhilarating pace of the original, but then again, I'm not eight years old anymore. Indy's prime may be past, but the film didn't rob him of his essential coolness. And now, Mr. Lucas, it's time to leave well enough alone.

Posted by wintermute2_0 at 07:31 PM | Comments (0)

May 27, 2008

Get My Agent On The Phone

The Coen brothers are shooting their next film in Minnesota. This could be my big break. After all, every Coen brothers movie features at least one funny-looking guy. Steve Buscemi. John Turturro. I'm way funnier-looking than either of them. And I'm not picky about the size of my role. I can play Onlooker #2 or Quirky Co-Worker with equal gusto. I'll even change my name to something less ethnic. Mark Singer. Mark Samuels. Whatever. Just give me a chance!

Posted by wintermute2_0 at 08:52 PM | Comments (0)

May 26, 2008

Desperately Seeking Someone

It's spring time and young gimps' thoughts turn to thoughts of love (or lust). That's the impression one gets from the latest disability-themed edition of Dan Savage's sex column. Dan's responses to the plights of the disabled and the horned-up are reasonable and measured. He makes a good point about the fact that gimp sexuality runs the gamut from plain vanilla to the exotic. I once knew a guy with Duchenne's who wanted nothing more than to meet a girl who would tie him up. That seemed redundant to me, but different strokes and all that.

It's good to know I'm not the only one who, in a moment of loneliness and self-loathing, wrote Savage with my own sob story about how girls didn't like me, how my gimpness was going to keep me single and frustrated for the rest of my life, and so on. My insecurities are still with me and they probably always will be. But they are tempered with the knowledge that I can be my own worst critic. And I've slowly learned to trust other people to see all the good things in me that too often remain hidden to my own eyes.

Posted by wintermute2_0 at 12:39 PM | Comments (3)

May 25, 2008

Critic At Large: A Midsummer Night's Dream

My first encounter with Midsummer Night's Dream came in a high school English class. We read much of the text aloud in class and the teacher assigned Bottom's lines to me. I remember choking down laughter as I played my part and it dawned on me that Shakespeare was pretty hilarious for a dead guy.

The Guthrie's production of Dream is a playful and ambitious updating of the original text. While the action still ostensibly unfolds in classical Athens and the characters still speak mostly in Elizabethan English, I don't think think Shakespeare imagined a notebook computer as one of the stage props. I also don't think he imagined his characters breaking out into elaborate song and dance numbers. The decision to include undeniably pop-sounding musical interludes is a bold one, but my friend and I both thought they slowed the pace, at least in the second half. To paraphrase my friend, it got a little too Broadway towards the end.

Still, it's impossible not to give in to the play's intrinsic charm and magic. All the actors are wonderful (but Oberon and Bottom are particularly superb). The set design and costumes bring an otherworldly splendor to the proceedings. When it was over, I was a little sad; the kind of sadness you get after waking from a good dream.

Posted by wintermute2_0 at 12:47 PM | Comments (0)

May 24, 2008

Old News

Some people are still catching on to the fact that geek culture and geek values have infiltrated the mainstream of American society. Take David Brooks' editorial in the Times entitled "The Alpha Geeks". Brooks' late-to-the-party enthusiasm for geek cool is kind of cute, but it makes you wonder how astute the first Times' op-ed writers really are. I do like this sentence, though:

The jock can shine on the football field, but the geeks can display their supple sensibilities and well-modulated emotions on their Facebook pages, blogs, text messages and Twitter feeds.

Hear that? I'm both supple and well-modulated. If that isn't the definition of "sexy", I don't know what is.

As long as we're talking about geek awesomeness, check out the video for Weezer's "Pork and Beans" and see how many YouTube references you can identify.

Posted by wintermute2_0 at 01:10 PM | Comments (1)

May 23, 2008

It's Friday Night And My Brain Hurts

I've noticed that my site traffic has crept slightly upwards in recent weeks. I'm at a loss to explain the cause. The content is as mediocre as it's ever been. Is there nothing else good on the internets?

I'm listening to some of the first MP3s I ever downloaded onto my computer, back in the heyday of Napster. I close my eyes and it's 1998 all over again. The first song I ever downloaded: "Don't Dream" by Crowded House. I'm too embarrassed to list all of the other Eighties pop I eventually accumulated.

Posted by wintermute2_0 at 07:38 PM | Comments (2)

May 22, 2008

Maybe They Think I'm Impossibly Handsome

Kay at The Gimp Parade has written a great post about the stares that greeted her when she ventured out for a haircut and how it affected her, even though this kind of thing should be nothing new to her. I can usually count on at least a couple stares whenever I leave home; people seem especially fascinated by the fact that I'm rocking a ventilator on the back of my chair. On most days, the stares and the looks are just one more feature of my personal landscape and they don't earn much attention from me. But on occasion, during one of those moments of hyperawareness that I sometimes get (especially in a crowded room or some unfamiliar place), the looks I attract register more acutely. And in those moments even I, the self-styled hipster poseur whose internal irony switch is stuck permanently in the "on" position, can feel incredibly lonely and the soundtrack in my head gets all maudlin (think Death Cab for Cutie with lots of strings).

To get my groove back, I remind myself that this feeling is only temporary. Soon there will be another drink with a friend, another phone call with my brother, another lunch with a work colleague, another embrace, another kiss. It might even come from someone in this crowded room.

Posted by wintermute2_0 at 01:51 PM | Comments (1)

May 21, 2008

Legal Tender

The D.C. Circuit Court of Appeals ruled yesterday that the uniform size and texture of American currency constitutes an act of state-sponsored discrimination against the blind and those with visual impairments. Barring any further appeals, this decision could require the Treasury Department to issue redesigned paper bills that are distinguishable on the basis of touch. Expect the usual suspects to make panicked noises about "activist judges", but this ruling shouldn't come as a surprise to anyone in disability law circles. As the majority points out, the U.S. is one of the few countries that prints paper currency without any variations in size, color, or texture.

Modifications to our existing currency will come with some initial expense, but those costs are minimal in the long run. Canada pulled off a similar feat in 1995 with little fanfare. Surely we're not going to let Canada get away with showing us up.

Posted by wintermute2_0 at 08:44 PM | Comments (0)

May 20, 2008

Paperless Office

My work desk is relatively neat because I try not to accumulate a lot of hard copies of documents. I store ninety-nine percent of my files in electronic format and I use e-mail extensively (probably a little too extensively; I've been mildly admonished for keeping e-mails that were over five years old). This system generally works well for me, but I still have the nagging problem of manipulating assorted documents during meetings. It's not always practical to have someone sitting beside me to turn pages and I've always been reluctant to ask colleagues to be my hands. I could ask for a notebook computer to bring to meetings, but my adaptive equipment isn't easily portable which kind of defeats the purpose of having a computer.

I sometimes daydream about being able to pull up documents on an inlaid display of my eyeglasses using a subvocal speech interface. Yes, most of my daydreams are this boring.

Posted by wintermute2_0 at 08:13 PM | Comments (0)

May 19, 2008

More Than A Passing Resemblance

I don't get to see my extended family much and I'm terrible when it comes to keeping promises to stay in touch. But what with my grandmother's passing and then my sister's graduation, I've been spending more time with them in recent months. We were sitting around a restaurant table last night and I smiled to myself when I thought how easy it would be for a stranger to pick out the paternal side of my family. We're all dark-haired, short, and opinionated. I'm reasonably confident that, even if my disability was removed from the equation, I'd only gain a few inches in height. My brother scored big in the genetic lottery for size; he towers above us like a Nordic explorer amongst a lost tribe of argumentative pygmies.

Posted by wintermute2_0 at 06:52 PM | Comments (1)

May 18, 2008

Into The Fold

A big congratulations to my sister Crystal, who graduates today from William Mitchell College of Law. I still haven't told her about the secret initiation rites that will take place later tonight in a secluded patch of woods. And someone else can bring the goat this time. The ravenous little beasts can't resist making a snack out of my tubes.

Posted by wintermute2_0 at 12:17 PM | Comments (0)

May 17, 2008

Weekend Update

Some notable news stories from the past few days:

A church in rural Minnesota has issued a restraining order preventing a family from bringing their autistic son to Mass with them. The church claims that the kid is severely disruptive and a physical threat to the other parishioners. The family responds that the church is overreacting and unfairly excluding their son solely on the basis of his disability. This sounds like a case where both sides are speaking from the truth as they see it, but getting a restraining order seems both clumsy and needlessly antagonistic. I'd advise the church to seek new legal counsel.

In other news, track athlete and amputee Oscar Pistorious has won his appeal to be allowed to compete for a spot on the South African Olympic team. Some of you may recall that a separate rules committee banned Pistorious from Olympic competition because his prosthetic limbs might give him an "unfair advantage". While this decision is specifically tailored to Pistorius' situation (and he has only an outside chance of actually making the team), we may be witnessing the redefinition of the term "athlete" to include modified or augmented human bodies.

Posted by wintermute2_0 at 02:33 PM | Comments (0)

May 16, 2008

Generational Divide

I'm not sure how it happened, but the Millennials are really starting to piss off us Gen Xers. Maybe it's their dewy-eyed earnestness or the fact that they can barely remember dial-up Internet, but most likely it's all the fawning attention they get in the media. We Xers had piles of scorn heaped on us back in the day, but these Millennials can apparently do no wrong.

I do have to be somewhat charitable to them since my sister is a Millennial herself, but I'm pretty sure I could take any one of them in a fight. As long as that fight involves writing a game in BASIC programming on an old Apple IIe.

Posted by wintermute2_0 at 09:51 PM | Comments (0)

May 15, 2008

The Hour Is Late

A short entry tonight because of a busy night. Getting up tomorrow is going to be no fun at all.

Posted by wintermute2_0 at 11:59 PM | Comments (1)

May 14, 2008

Safety Dance

One of the things that I'm now doing a lot of in my job lately is asking questions about health, safety, and risk. What kind of obligation does a state entity have to monitor the health and safety of a person with a disability who is self-directing their own care? How does a state agency establish consistent standards of assessing threats to health and safety? More importantly, how does a bureaucracy balance its monitoring responsibilities with a basic respect for the dignity of risk?

It's during discussions like these, when I'm often the only person with a visible disability in the room, that I feel deeply conflicted. As a human services agency, we are accountable to at least some degree for the well-being of the people we serve. But as someone who is served by that same agency, I know that I would resent any attempts to judge the amount of risk I can safely accommodate in my life. Was it exceedingly risky for me to go to Europe? To have a friend pour wine down my g-tube? To be left in the care of my siblings (one of whom used to love grabbing my hand and bringing it into contact with my face while admonishing me to stop hitting myself)? Is my objective tolerance for risk lower simply because I'm closer to life's precipice?

Self-direction is not just about hiring your own attendants and getting to decide when to eat dinner. It's about shaping the course of your life, even if that course sometimes veers uncomfortably close to the jagged edges.

Posted by wintermute2_0 at 08:26 PM | Comments (2)

May 13, 2008

Ugly Americans

While race is an ever-present subtext in the media narrative of Obama's candidacy, little is said about the overt racism that his field workers encounter. A Washington Post story recounts numerous examples of Obama campaign workers crossing paths with unapologetic bigots who hurl racial epithets at them. Many of the incidents described in the article occur in places like Indiana and Pennsylvania, but we shouldn't kid ourselves into thinking that this is a regional phenomenon. As Obama's status as the Democratic nominee becomes more apparent to the general public, I suspect that we'll see YouTube footage that will make former Senator Allen's "macaca" remark seem downright adorable in comparison.

Posted by wintermute2_0 at 08:44 PM | Comments (0)

May 12, 2008

Bravo

I had a chance to watch the episode of This American Life featuring Mike Phillips that I mentioned here previously. It's brilliant. Ira Glass never allows Mike's disability to become a source of morbid fascination, but he is frank in describing the precariousness of Mike's circumstances. The conflict between Mike and his mom over his desire for more independence mirrors the experiences of many of us with severe disabilities and it's a conflict that is fraught with good intentions. Glass understands this and gives both Mike and his mom sympathetic portrayals. And I'm glad to see the media engage in honest discussions of disability and sexuality. And Mike's choice of Johnny Depp as his proxy voice is perfect. Mike and everyone else involved in this production should be proud of what they accomplished here.

Thanks to certain anonymous sources for getting me a copy of the episode.

Posted by wintermute2_0 at 10:04 PM | Comments (1)

May 11, 2008

And It's Not Even Memorial Day Yet

I'm wearing this pair of linen pants I bought yesterday. I've never owned a pair of linen pants. I feel the impulse to head down to the yacht club for a game of bridge, followed by a jaunt to the polo grounds.

Posted by wintermute2_0 at 04:19 PM | Comments (1)

May 10, 2008

Please, No Sequels This Time

Gore Verbinski, the director of the Pirates of the Caribbean trilogy, is going to direct a film based on the videogame Bioshock. If there can be such a thing as a film adaptation of a videogame that doesn't suck, this could be it. The game's plot is already cinematic in scope and the underwater Deco vibe would make for great sets. If the project can attract some recognizable talent, it might actually be worth seeing.

Posted by wintermute2_0 at 10:13 AM | Comments (0)

May 09, 2008

The Famous People In My Life

I love it when cool things happen to cool people I know. Mike Phillips, who is 27 and has spinal muscular atrophy, is featured on the season debut of Ira Glass's This American Life. I know Mike mostly through his writings on various Mac-related websites (yes, I read Mac sites even though I don't own a single Mac; me=sad poseur) and I'm also Facebook friends with Mike's girlfriend Sara (who totally owned me on Scrabulous). The episode, which is centered on the theme of "Escape", details Mike's efforts to live independently after years of depending on his mom for his daily cares. A short clip is available here and more details on the episode can be found here, including a great picture of Mike and Sara.

Since I don't get Showtime and the episode isn't yet available on iTunes, I'm forced to obtain it through less scrupulous methods. Legal niceties won't stand in the way of me supporting a fellow member of the SMA clubhouse.

Posted by wintermute2_0 at 01:11 PM | Comments (2)

May 08, 2008

Part Of The Problem

It's costing me close to sixty dollars to fill up my van's gas tank. My driving habits consist of little more than trips to and from work, so I'm not feeling the same hurt that's being inflicted on so many suburban commuters. Still, I wish I could do something to ease my own dependence on my admittedly gas-guzzling vehicle. I don't think a Prius can accommodate my wheelchair and walking the ten miles to and from work is not a realistic option. It might be time to take a cue from Inspector Gadget and invent that personal propeller-based flight system that is powered solely on my excess charm.

Posted by wintermute2_0 at 07:38 PM | Comments (0)

May 07, 2008

At The End Of The Tunnel

I have some appointments tonight, but it's worth noting that this interminable primary season might, at long last, be coming to a close. Obama's big win in North Carolina and narrow loss in Indiana could be the turn of events that forces Clinton to acknowledge the futility of continuing her quixotic campaign. I don't put much stock in the persistent conjecture surrounding a possible Obama-Clinton unity ticket, but for the good of the party, the two of them need to do one more joint television appearance and hug it out.

Posted by wintermute2_0 at 05:11 PM | Comments (0)

May 06, 2008

Household Odor

Around these parts, we mark the approach of summer with the usual indicators: blooming flowers, the fishing opener, women in short skirts. For me, it's the smell of cigarettes permeating my condo. It shows up every year around this time. I have no idea if it's wafting through my windows or coming up through the vents, but it seems to be concentrated in the immediate area around my desk. And I'm not going to try to cover it up with one of those scented candles. The smell of cigarettes is somehow more tolerable than the smell of cigarettes intermingled with apple cinnamon. I suppose this could be categorized as one of the many hazards of the blogging lifestyle.

Posted by wintermute2_0 at 08:22 PM | Comments (1)

May 05, 2008

More Of The Same

Just when I think that able-bodied couldn't do anything that surprises me anymore, I come across something that makes me think that the most prrevalent disability is the chronic failure to get on board the clue train. A South African woman was unable to get an ID because the local bureaucrats told her she would need to submit fingerprints, despite the fact that she had no arms. I'm having flashbacks to all those times when physicians asked me to take a deep breath. Or the time when I had my own challenges getting an ID card.

To the able-bodied people of the world: your collective ignorance and bias is starting to bore me. I debated even blogging about this story. In the future, you're going to have to try a lot harder to get my attention.

Posted by wintermute2_0 at 08:42 PM | Comments (0)

May 04, 2008

Critic At Large: Iron Man

The really good comic book movies are the ones that realize that what makes superheroes interesting isn't their flashy costumes or their extraordinary abilities. What makes them interesting is their flaws and eccentricities; the things that help the audience sympathize with characters that might otherwise seem like demi-gods. The first couple Spiderman and X-Men movies worked so well because they provided both spectacle and depth. Tobey Maguire's Spiderman was kind of a jerk when he first acquired his powers, but his emotional journey makes the movie that much more interesting.

Iron Man works in a similar vein. Tony Stark is a weapons manufacturer whose wealth is only matched by his shallowness until a traumatic experience forces him to acknowledge his own complicity in bringing suffering to the forgotten corners of the globe. His physical scars from that experience also enable him to reinvent himself as Iron Man, a superhero with no natural abilities but ones granted by technology. Robert Downey, Jr. is pitch-perfect as Stark, capturing his insouciant charm and arrogance without coming off like a dick. Gwyneth Paltrow, as Stark's devoted personal assistant Pepper Potts, isn't given nearly enough to do, however. But stuff does blow up real good.

And be sure to stick around for a fanboy surprise after the credits.

Posted by wintermute2_0 at 05:42 PM | Comments (0)

May 03, 2008

Baby Steps

I've been getting literature in the mail about new managed care plans available to people with disabilities on Minnesota's Medical Assistance program. These voluntary plans tout their ability to offer care coordination, quick access to specialists, and all of the other basic Medicaid services. Enrollees would not have to pay the usual Medicaid co-pays for prescription drugs, which might make this option particularly attractive for people with low incomes.

The disability community has a longstanding suspicion of managed care that is rooted in the fear that managed care organizations will restrict choice and access to services, particularly personal care assistance. These plans sidestep those concerns by excluding personal care and private duty nursing services in the traditional fee-for-service (FFS) sphere. My wonkish instincts tell me that managed care is becoming the preferred model for administering public health care programs and home care services will eventually be included in future versions of these plans. But it's going to be some time before the FFS model is even partially abandoned.

I don't mind managing my own care, but I could see myself choosing one of these plans if my medical needs became more complex.

Posted by wintermute2_0 at 02:16 PM | Comments (1)

May 02, 2008

Thug Life

I heard a review of GTA IV on NPR and it sounds like great fun. I love how one of the in-game radio stations parodies NPR. A former nurse and I used to play the PC version of GTA III, which earned me my first noise complaints from neighbors in this building. And somehow, I managed to refrain from soliciting prostitutes and gunning down cops in real life. But I can't walk past an idle taxi without feeling the urge to deposit the driver on the curb and go for a joyride. If only more taxis were wheelchair-accessible.


Posted by wintermute2_0 at 09:19 PM | Comments (1)

May 01, 2008

Stating The Obvious

I need to renew the disability parking tag for my van. I understand the bureaucracy's need to periodically verify eligibility for things like this, but it seems like I'm wasting a lot of people's time and resources to prove that my disability still exists. I would be willing to subject myself to a week's worth of humiliatingly invasive medical exams in exchange for some kind of documentation giving me Gimp-for-Life status. Said documentation would be electronically available to any person or entity wishing to confirm my gimpness, saving me substantial amounts of both time and postage. After all, it's not exactly a secret. Maybe I could also get some kind of laser-engraved holographic identification card to carry around in my wallet. In glossy black, of course.

Posted by wintermute2_0 at 07:30 PM | Comments (1)