It’s Friday Night And My Brain Hurts

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May 232008
 

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.

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Maybe They Think I’m Impossibly Handsome

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May 222008
 
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.

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Legal Tender

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May 212008
 
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.

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Paperless Office

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May 202008
 
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.

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More Than A Passing Resemblance

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May 192008
 
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.
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Into The Fold

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May 182008
 
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.
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Weekend Update

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May 172008
 
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.

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Generational Divide

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May 162008
 
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.

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Safety Dance

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May 142008
 

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.

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