Apr 172008
 

Pitchfork.tv is a new streaming video site from the hipsters who brought us the music website of the same name. It’s been live for only a few weeks, but the site already contains an impressive amount of content in the form of music videos, interviews, and long-form documentaries. Since MTV now shows nothing but bad reality television starring the beautiful and the lobotomized, Pitchfork.tv is a great find for those of us who want to watch actual music videos. I’m especially fond of this exuberant video by the Brazilian band CSS.

Apr 162008
 

A friend of mine who also has SMA told me about a recent visit to a physician who specializes in neuromuscular disorders. This doctor told her that, contingent on the results of a genetic screening, she could receive an injection of a substance that stops the progression of SMA. She couldn’t tell me the name of the substance and a cursory Google search didn’t turn up anything definitive. My understanding of SMA is that it isn’t progressive in the same sense as, say, ALS is progressive. The motor neuron is shut off (or at least badly damaged) and the loss of signal causes muscles to atrophy, but that atrophy eventually plateaus. But I could be misinformed. My friend’s SMA is significantly less severe than mine and, if progression is an ongoing process, she would definitely benefit from such a treatment. I see myself as having reached that plateau back in my early twenties. As I get older, however, it might be difficult to distinguish progression from the usual creakiness that accompanies the aging process.

Apr 152008
 

According to the AP, summer camps tailored to the needs of kids with disabilities and chronic illnesses are sprouting up all over the country. Researchers are finding that kids who attend these camps may go home with a better understanding of their disabilities and are more comfortable discussing their disabilities with others. Here’s what one kid said about his experience at a camp for children with epilepsy.

You get to learn about each other, how you’re not different from everyone.

I attended a camp sponsored by the Muscular Dystrophy Association for a couple summers in a row. It was the first and only place where another kid threatened to beat me up. I suspect that’s not an anecdote the MDA wants printed up in the brochures. But I also caught a glimpse of my pretty counselor topless, so the experience had its upside.

Apr 132008
 

Some things just go together. Peanut butter and chocolate. Fireworks and the Fourth of July. Elections and charges of Democratic elitism. It comforts me greatly to know that, in these ever-changing times, we can still count on politicians to get all faux-indignant when someone dares to opine that some of our neglected fellow citizens are kind of grumpy and may be channeling that grumpiness at the gay couple down the street or the guy at the Kwik-Mart with the funny accent.

Obama’s phrasing was clumsy, but that doesn’t discredit the observations he was making. The megachurches that dot the suburban landscape are booming because they offer a one-stop support network that is replacing the old civic infrastructures, like neighborhood organizations and labor unions, that have been decimated by economic stress and upheaval. And some of those churches do preach uplifting messages of social justice and tolerance, but many of them encourage a kind of exceptionalist thinking that breeds contempt and suspicion of those who are different. This wasn’t as much of a problem when people lived in homogenous little towns, but that isn’t the world we live in now. “Those people” are now neighbors and co-workers. Obama isn’t criticizing anyone; he’s giving an oversimplified, reductionist explanation of a social trend. But it is a real and persistent trend.

Some of you may be getting tired of my political commentary, but I can’t help it. It’s just too interesting for me to ignore.

Apr 122008
 

I’m going to drop by my ten-year law school reunion tonight. I mostly hung out with the public-interest crowd and I’m not sure how many of them will be there. Of course, it might be more interesting to talk to someone whom I barely knew when I was a student. I’ll listen to stories of people’s seventy-hour workweeks at the firm and feel a little wistful that I didn’t pursue a private sector job more aggressively. But then again, I’m not sure there’s any kind of private practice that I would want to do for seventy hours a week.

Apr 112008
 

Much is being made of Barack Obama’s difficulties in appealing to white, working-class voters. Being a stereotypical Obama backer (young, educated, relatively affluent) and a couple generations removed from my working-class roots, I have a hard time understanding this trend. Race is almost certainly a contributing factor, although I’m not convinced that voters wary of Obama’s race are any more likely to vote for a woman in a general election. And this all might be so much media hype. Pennsylvania is in the spotlight and the news networks are looking for an angle to keep people interested in the horse race. Once this primary is over, the press will be stumbling all over themselves to find a new angle.

Except that this particular race, barring something truly unexpected happening, is over. And Obama will have plenty of time to win over lunchpail Democrats, Hispanics, grandmothers, rural folks, and all the other demographic subgroups that are supposed to resent him.

Apr 102008
 

This was the first year I actually owed the guv’mint taxes. I adjusted my withholding last year to see if I could break even and I came reasonably close. In some parallel universe, there’s an alternate version of me who is a moderately successful CPA. And I’m happy to throw in a final payment as a thank-you to Uncle Sam for educating me and providing me health care. I kind of miss those refund-facilitated shopping sprees, though.

And it would have been nice if my van could have waited until next month to spring a coolant leak.

Apr 092008
 

My trusty HeadMaster, the device I use to type these blog posts, check e-mail, play Scrabulous, and generally get my geek on, is no longer being manufactured. I learned this fact a few months ago and ever since then I’ve had a low-level anxiety that my existing HeadMaster would fail. Fortunately, they’re designed to last. The one sitting above my monitor has been in use since circa 1996 and I don’t think it has ever failed to do its duty. And I do have a spare sitting in a desk drawer, which provides some additional insurance. By the time I need to think about a replacement technology, perhaps I’ll be able to get one of those oft-predicted neural interfaces implanted inside my melon.

The odd bits of tech that we gimps use can sometimes assume talismanic qualities. We know and trust them. They’re predictable. They may have their quirks and eccentricities, but we can navigate those without much conscious thought; what matters is that they do not fail us. And when market forces make our devices obsolescent or unavailable, we are forced to put our trust into the unfamiliar and (frequently) the untested.