CNN has a profile of a married couple and their struggle to maintain their marriage after the husband returned from Iraq with a spinal cord injury. As you might expect, they're experiencing a range of emotions; guilt, anger, depression, and the like. As someone with a congenital disability, it's difficult for me to imagine the sense of loss and (sometimes) bitterness that accompanies a newly acquired disability. I've never known a life without disability. The man in the article will have to learn to adapt to an entirely new existence. Here's an idea for a documentary; pick a small group of soldiers returning from Iraq with various disabilities. Examine the immediate aftermath of their injuries, their rehab, the effects on their families. Then follow up with them every 3-5 years. See who's thriving, who's not, and explore the reasons why. It could be modeled on the Seven Up series that is being done in the UK. If we ever get our hypothetical disability network, that might be an idea worth exploring.
Not sure how much blogging I'll be doing while in DC. One of my nurses is bringing his notebook and I'm hoping the hotel will have WiFi. If I do post, it will be very brief. We're going to be running from meeting to meeting during most of our visit.
I have some reading to do in preparation for my trip. In the meantime, fellow Minnesotans may be interested in the article in today's NYT about the growing use of methamphetamine in this state. And if you need any more evidence of the sheer toxicity of meth, check out this gallery of before/after pictures of people addicted to meth. We'll be meeting with one of the senators who is co-sponsoring a bill to get pseudoephedrine (commonly found in cold medication and a primary ingredient in meth) categorized as a controlled substance. Perhaps I'll try to ask him whether he thinks the pharmaceuticals will go along with that kind of regulation.
Over at Slate, Jack Shafer has a good critique of the ongoing hype surrounding blogging and the true believers' claims that blogs and podcasts will bring Mainstream Media to its knees. Shafer rightly points out that the big media players have always figured out how to adapt to new technologies. A lot of journalists working for established media outlets have their own blogs now. And sites like MSNBC and The Guardian actively promote their blogs. Blogs are not the harbingers of a revolution, much as some people would like you to believe otherwise. Let's be honest; blogs still exist at the periphery of public consciousness. How did blogs even manage to move in from the absolute fringes of media culture? Because they started getting coverage in magazines like Time or on the cable news networks. I promise you, the bloggers who are most vocal in their distaste for big media are also the same ones who would leap at a chance to get on the cover of the NYT Sunday Magazine.
I'm listening to the Current, the new music station in the Twin Cities that's part of Minnesota Public Radio. The format is pretty good. No commercials and no obnoxious DJs. The playlist does skew towards alternative, but I've heard some Johnny Cash and some Nas. I hope they do some programming dedicated to specific genres like electronic or soul/hip-hop. It'd be a shame for the station to cater exclusively towards the black-turtleneck hipster set. But at least I have another station to listen to in the car besides the news station.
A few thoughts on my new iPod, now that I've had the chance to play with it for a few days. The color display is surprisingly sharp, much more so than I thought it would be. I can make out details that I didn't think would be visible on such a small screen. I'm also digging the recording function. The quality of the recordings is far superior to those that were done on my old digital recorder. And now that I have an iPod that is bigger than my music collection, I can simply place the iPod in its dock and let it automatically sync with my iTunes library. The extra capacity also has enabled me to download a bunch of podcasts that I listen to at work. One of my favorite shows is Coverville, which is dedicated to playing covers of various pop songs. A recent show featured Sarah McLachlan's cover of XTC's "Dear God." It's really good; one of her most forceful renditions of any song. Not sure why she can't bring that kind of energy to some of her more recent albums. I used to be a big Sarah McLachlan fan; I was one of maybe half a dozen guys at the Lilith Fair concert when it came to Minnesota in 1997. But lately she's gone kind of adult contemporary and, well, boring.
God, I'm rambling. Time to get off the computer.
One of my nurses e-mailed me this picture:

It begs a few questions. Exactly what kind of incident prompted the posting of the sign? Do alligators consider us a delicacy? Are the alligators trained to lie in wait for unsuspecting wheelchair users? Is the sign intended as a warning...or a suggestion?
I leave for DC next Tuesday with the rest of the Humphrey Fellows. This trip has snuck up on me and I haven't been giving it much thought. I'm not even sure what our itinerary will be while we're there. I do know that we get a little time to ourselves to explore. I hope to check out the Mall at night, see at least some of the Smithsonian, and visit the FDR Memorial. Depending on my state of mind, I might try to get to the Holocaust Museum as well. I'm looking forward to some late-night discussions with my new friends and meeting some interesting people, so I'm sure it will be a good trip regardless of what we do.
I've often considered joining a book club, but something has always held me back. This article from local magazine The Rake expresses some of my misgivings. I don't want to join a club where people discuss the book for fifteen minutes and then talk about familial goings-on for the rest of the meeting. I don't want to join a club that assigns something from the Left Behind series or simply apes whatever Oprah is reading. And I don't want to be the only guy in a group of women. On second thought, that might be okay under certain circumstances. In short, I guess I want it to be like one of my seminar classes in college. But I know that I'm not likely to find something like that in the real world. Maybe I should just quit my job and go back to grad school for my Ph.D. in English. Actually, I almost did that during a particularly dark and frustrating period in law school. There are times when I'm really nostalgic for the academic life. But having a regular paycheck is also kind of nice.
Maybe I should start my own book club. It will have a membership of one, thus ensuring that the meetings are always in accessible locations and that the books are ones I want to read.
In the 17th century, a Chinese playwright was trapped in a temple with a friend for several days because of a rainstorm. They set about creating a list of the happiest moments in life. I actually do something similar; keeping a mental catalog of moments when I was truly happy that I can turn to when things aren't going so well. Here are a few:
As I write this, iTunes is transferring about 2,500 songs to my new iPod photo. I was originally just going to get a larger iPod, but the coolness factor of the color screen was simply too much to resist. Matt at the Apple Store was quite helpful and he also set me up with a Griffin iTalk so I can record meetings at work. I haven't had a chance to load any photos yet, but I really like the ability to look at album art as my music plays. My sister inherited my old iPod after nearly two years of pestering me to get her one. She didn't even know what an iPod was until she saw mine, so I'm partly to blame for her technolust. Now I need to find a cool case for my new gadget. It's all about the bling-bling, baby.
Oh, and a special note to the City of Minneapolis. When plowing the streets after a snowfall, how about NOT creating three-foot drifts in front of the curb cuts? I got stuck in one such drift on the way home from the train station and I might still be stuck there if someone hadn't helped my nurse drag me into the street.
I'm heading out soon to spend some of my tax refund. Mustn't keep all the new toys waiting. A more detailed report may be forthcoming upon my return.
Ack, I need to get some new glasses. The "i" and the "l" on my on-screen keyboard are starting to look alarmingly similar. It's been about seven years since I've had my eyes checked, so I'm probably overdue.
We're finally getting our first major snowfall of the season. I'm still here at work, but nearly everyone else has left to fight their way through traffic. This one of those days when I'm really glad I don't have a long commute. Downtown Minneapolis is only a fifteen-minute drive from here, although it might take a bit longer today. Some of my colleagues may be sitting in their cars for an hour or two before they reach home. I understand the appeal of suburban living, but I don't think I could handle spending a fifth or a quarter of my waking hours stuck in traffic.
The disability community has been talking about the recent death of a woman with a disability in St. Paul. She was going to a wedding at the Conservatory in Como Park on Saturday evening and used a taxi to get there. You can read the details here, but she apparently was dropped off next to a locked door. She tried to cut across some uneven terrain and fell out of scooter. She was lying somewhere just out of plain sight and she froze to death. Now, some people are wondering why the taxi driver didn't make sure she safely entered the Conservatory. Or why she didn't use regular paratransit service, which has a door-to-door policy. It's a tragic death, but I'm not sure all this hand-wringing will do much good. People with disabilities are certainly more vulnerable than the general population, but sometimes weird things happen against which there simply is no protection. Maybe this woman should have stuck to the sidewalk. Maybe she should have asked the driver to accompany her inside. The sequence of events that led to her death were freakish and singular, which isn't very comforting. But I'm not sure what other conclusions can be drawn from this incident.
My friend Susannah has started a new blog to promote her novel-in-progress: Porn Happy. It features excerpts from her book and assorted links to all things carnal. Obviously, some of the material may be NSFW. Go give her some love.
If I was ambitious enough, I'd set up a separate site for my own book. Instead, you'll have to settle for another excerpt...
I looked over my shoulder and saw Erin Chambers coming out of the library. She was pushing her walker in front of her and I saw that her hair had changed from blond with blue streaks to blond with pink streaks. "Hey, Erin. Nothing, just hanging out. What about you? I thought you were going home for the summer."
She shook her head. "Nuh. I'm 'aking a 'ummer 'lass." She pushed the walker up to the bench and sat down next to me. She wore a floral-patterned summer dress that revealed a generous amount of cleavage. I had known Erin since she started at the U three years ago and, like most people, I at first had some trouble understanding her when she spoke to me. But unlike a lot of people with CP, Erin never showed any sign that she was embarrassed or uncomfortable with her speech impairment. She once told me that the only reason people couldn't understand her was because they weren't listening closely enough.
"Oh, yeah? What class?"
"'Exual Pol'tics 'n Moduhn Amm…American Cinema," she said with a hint of irony.
"Uh huh. I think I've heard of this class. It's just an excuse to watch porn all summer, isn't it?"
She looked at me with her chocolate eyes like I had just uttered the most obvious statement in the history of humanity. "Why eh…else would I 'ake it?" And then she tipped back her head and laughed that convulsive, gasping laugh that every person with CP seems to have. I've been at parties with Erin where people almost called 911 because they mistook her laugh for some kind of seizure.
The commotion caught the attention of the two guys playing Frisbee. They turned around and I could see their gaze linger on the swell of her breasts and her bare thighs. Erin must have noticed too, because she managed to stop laughing and give them a coy smile. "'Ay, 'uys!" she said. They waved back and resumed their game.
"You know them?" I asked.
"Nuh," she said. Erin gave them another glance and shifted slightly so that her sundress rode up a little higher. "No' yeh."
"Slut," I said and she gave me a playful shove. Erin had never had trouble hooking up with someone, male or female, whenever she had the urge. Which is to say that Erin got laid more times in one week than some people do all year. Her sexual adventurism had earned her an awed kind of respect from a lot of the other gimps at school, including me. A lot of us wondered how she managed to get sex whenever she wanted while the rest of us were struggling to just get a date for Friday night. Sure, she was cute and all, but it was something more than that. Somehow, in a matter of minutes, Erin was able to make people forget about her slurred speech and her walker and the occasional strand of drool hanging from her lip. All they saw was what she wanted them to see. All they saw was her brilliant smile and her streaked hair and her firm tits. I've gone with Erin to nightclubs and watched in disbelief as men and women crowded around her within minutes of our entrance. I felt like I was observing some Gimp Goddess of Love being worshiped by her followers.
I spoke to a class of Hamline students who were doing a J-term study of disability issues today. This is the second year I've done this and it's always fun. They'll probably remember me as the guy who talked about sex. It's been my experience that people who are invited to speak on issues of disability tend to shy away from issues concerning sexuality, so I try to work it in if the audience is appropriate. Someday, I want to be known as the Dr. Ruth of sex and disability, minus the German accent. But to be an expert, I must do a hell of a lot more field research. Must figure out how to go about that.
Every two years I have my gastrostomy tube (G-tube) replaced. So today was the day. A doctor has to do it, so I went over to the U of M Endoscopy Clinic to have it done. I use a Bard button, which works well for me. It's basically a short piece of plastic with a silicone mushroom at the end to keep it in place. It never gets yanked out accidentally, which is good. In fact, to pull it out, one needs almost superhuman strength. It's a bit like pulling out a champagne cork. People always ask me if the procedure hurts. I can tolerate a fair amount of pain, so I'm probably not the best person to ask. On a scale of 1-10, changing a g-tube probably rates a 4-5. I'm not saying I'm the toughest cripple on the block. Once, I was catheterized...um...you know...down there...for a brief test. That was fifteen years ago and the thought of letting someone do that to me ever again still makes me whimper.
Anyway, here's a picture of the Bard button. Just overlook the fact the accompanying article describes its use in a, er, dog. The things you find on the Web...
I watched the first two episodes of the new Battlestar Galactica series and enjoyed it immensely. The quality of the writing and acting is superb and the special effects are well-conceived. The shaky quality of the scenes showing the Vipers launching and flying patrol around the fleet reminded of some old WWII footage I've seen. I can't understand why there are some fans of the original series who so strenuously objected to this new series. The original BG had some degree of campy fun, but it was basically dreck. I'm old enough to remember when it was first on and I wasn't much impressed with it even back then. Here's hoping the new series sticks around a while and the Sci Fi Channel suits don't get cold feet and cancel it prematurely, a la Farscape.
Oh, and new rule for script writers doing science fiction. When trying to invent new epithets, avoid starting you words with "fr--." No more "frakking Cylons." No more "frelling Peacekeepers." Explore the other letters on your keyboard.
People with disabilities have never had great representation in popular media. There aren't many people with disabilities with starring roles in television shows or movies. The experience of people with disabilities in the media probably mirrors the experiences of people of color. For whatever reason, entertainment executives think there isn't an audience for content that features characters with disabilities. But other identity groups have one advantage that we don't: they have established niche media markets. Telemundo targets Hispanics. Lifetime and Oxygen target women. Bravo has a lot of gay-themed programming. And then you have all the other niche channels like the Outdoor Network and the Food Network. But people with disabilities are left to observe the media explosion from the sidelines.
I'm working with a few other parties to explore possibilities for creating a disability-focused media outlet. Everything is very preliminary; we're basically testing the waters to see whether there's a market for something like this. I think the trick is to create something that doesn't have too narrow of a focus. Imagine a hypothetical cable channel for people with disabilities. Ideally, the channel should have a variety of programming; drama, comedies, reality shows/documentaries, all of which feature people with disabilities. But the programming should be able to appeal to a general audience as well. The problem with web portals like ICan (which seems to be down right now) is that they never make much efforts to reach a broader audience. If you're not disabled or closely involved with someone who is disabled, you've probably never heard of ICan. But most people know about the Food Channel, even if they never watch it.
What do you think? Is there a market for a disability-themed channel? What kind of programming would you want to see? I don't know if this concept will go anywhere, but I want to hear your thoughts.
Congratulations are due to the Cassini-Huygens team. Those pictures of Titan's Dreamsicle-tinted landscape are amazing. And one year later, the Mars rovers are still functioning.
If I needed a second computer, I might actually consider buying a Mac mini. You would never have heard me utter any positive words about a Mac five years ago, so Apple's marketing campaign must be working its mojo on me.
The Bush Administration seems determined to have a debate about Social Security reform. Fine, let's debate. Here's one issue I'd like to see discussed. Social Security isn't just a program for the elderly. When a worker becomes disabled, they become eligible for Social Security benefits. The same goes for children of disabled workers. Other groups that may be eligible for Social Security benefits include:
Spouses of deceased workers
Adult disabled children of deceased workers
Children (under 18) of retirees
The privatization of Social Security would subject all of these groups to the vagaries of the markets. They would no longer be assured of a regular, monthly income to pay for the necessities of life. If the economy takes a sudden downturn, it's these groups who would be the most vulnerable. A safety net that has existed for seventy years would be gone and with it the stability that it has brought to countless families.
I don't argue that we should examine ways to reform Social Security. But we first need to recognize that Social Security isn't something just for the gray-haired set. And we need to have a long, thoughtful debate; not a panicky response to a manufactured crisis. Depending on which estimate you look at, Social Security will be solvent until 2042. My generation, and those following us, will be the ones to pay the price for hasty decisions.
On a separate note, I'm looking for someone to help me install a new hard drive and DVD burner in my system. Free beer, anyone?
The last time I saw Walter Mondale was the day I graduated from law school. Mondale and Geraldine Ferraro delivered the commencement address. That was six years ago. The man is nearly eighty now and looks remarkably good for his age. It must be something in that Scandinavian DNA. Listening to Mondale made me nostalgic for the heyday of progressive politics in Minnesota, an era I never witnessed firsthand. He bemoaned the lack of civility in modern politics and the fiscal irresponsibility that is driving our country towards insolvency. I think he remains generally optimistic about the future of our nation, but he sounded like a man with deep reservations about our current leadership.
Temperatures here in Minnesota are going to remain below zero until Monday. I consider myself a hearty Midwesterner, but this is brutal even by my standards.
I was out most of the evening at a Humphrey Fellows dinner with Walter Mondale. It was a good time; I even got to chat with the former Vice President for a few minutes. I'll write more about it tomorrow. In the meantime, I wonder if I'm short enough to be cast as an extra in the new Doctor Who series. Then again, do extraterrestrials use wheelchairs?
I've been refraining from commenting on political matters because--well, I needed a break. I figured I'd let the Republicans strut around for awhile and yammer on about their moral rectitude. But I can stay quiet only so long. I absolutely love this story about the newspaper columnist who accepted what essentially amounts to a bribe for promoting the No Child Left Behind Act. Maybe the moralists out there can explain to me how the Administration can justify giving $240,000 to an independent columnist to promote its own political agenda? Isn't this akin to promoting a state-sponsored media? :Sniff sniff: Smells like communism to me. Does President Bush know the Department of Education is run by a bunch of communists?
Today, I was on a panel of attorneys teaching a continuing legal ed class for new attorneys who wanted to know more about careers in public service. To put people at ease at get them to listen to me and not ogle the chair the whole time, I've cultivated this understated, ironic style for presentations and the like. It seems to work well for me and it gets people to relax. Kind of like my blogging style but without all the links. Anyway, it went well. I'm lucky in that I like what I do and I have fun talking about it.
From my Inbox:
Hi Mark,
We recently launched a free online community site for disabled people interested in meeting others...and we were hoping you'd take a look at our site, and if you like it, maybe mention us in your blog, or add a link?
Our site is available here:
Disabled Passions
http://www.disabledpassions.com
The idea is to make it easier for people with disabilities to find one another, and it's completely free, so this isn't a sales pitch.
I hope you like the site.
All the best,
Michael
PS. Since we're completely free, we're pretty much relying on word-of-mouth, and links from sites focused on the 'Disabled' community. Thanks again!
So there you go. Maybe someone out there will get lucky and invite me to the wedding. And now if you'll excuse me, I have homework. Yes, Policy Fellows have homework. I need to finish Richard Florida's The Rise of the Creative Class by Wednesday. Only 200 pages to go.
Slate has a provoking piece on Green Bay Packers QB Brett Favre and his lionization in the sports media. As a former resident of that fair town, I can attest to his near-deity status. After all, they named a street after the guy and he's not even dead yet. As the article points out, Favre is regarded as a kind of "just folks" superhero. He's the football equivalent of President Bush; you can imagine having a beer with the guy. You don't see this same attitude towards many African-American players. Ahman Green, the Packers running back, is arguably a better athlete than Favre. And he's probably an equally decent guy. But he doesn't receive nearly the same amount of reverence as Favre. If Green disclosed that he was addicted to painkillers, as Favre did a few years ago, I'm not sure fans or the media would show the same forgiving, beneficent attitude. It's a distinction that might make many people uncomfortable, but I think it's important to recognize that the world of professional sports is not as colorblind as we might like to think.
Copyright protectionism really is getting out of hand. A security guard at a North Carolina art museum told a little girl to stop sketching paintings by Picasso and Matisse because they were copyrighted works of art. Add the fact that Bill Gates is of the opinion that those of us who believe in copyright reform are modern-day communists, and one begins to wonder if a day will come when we'll all be walking around with corporate logos stamped on our foreheads. In the meantime, I think I'm going to pick up one of these T-shirts to express my solidarity with my free-thinking comrades.
Adam Curry did a sort of walking tour of South Beach during his podcast today. He walked down Ocean Drive, which I wish I had explored more while I was there. But the sounds of the wind off the ocean and the multilingual chatter at the sidewalk cafes sounded awfully familiar.
I've been fighting a headache most of the day, so I think I'm going to veg in front of the tube and maybe watch the DVD of I, Robot that I rented from Netflix. I wonder if Isaac Asimov has finished rolling in his grave yet.
I've been having trouble with the side door on my van not closing shut all the way. Today, I took it in to be serviced at the specialized dealer located about thirty miles south of Minneapolis. The final verdict: the motor that operates the door is wearing out and doesn't have enough oomph to close the door all the way. The final verdict: $500+ dollars to have a new motor installed. Crap. I'm not sure if this will affect my vacation plans or not. I'll have to wait and see what kind of tax refund I get this year. And I'm really conflicted about whether to go to Vegas or back to Miami. I feel like I should experience Vegas at least once in my lifetime, but I had such a good time in South Beach last year. And I need to balance my desire to go on vacation vs. my desire for a new iPod. At some point, I might just have to flip a coin or something.
As usual, St. Paul is following Minneapolis' lead and is considering the establishment of a city-wide wireless broadband network. I'm waiting for the cable and telco companies to start making some noise about these public efforts to provide broadband access. I heard one of St. Paul's councilmen on the radio today and he was comparing broadband access to other public projects like roads and bridges. When you consider that the Internet as we know it only began taking off a decade ago, it's a tremendous leap for government officials to now perceive it as a public utility.
Okay. I'm going to ask nicely. Please nominate me for a Bloggie. I've been doing this for over two years and, while I'm not nearly as fun to read as my friend Alexa, I think I still give good blog. If you agree, go nominate me for best-kept-secret blog. Gracias.
Will Eisner, one of the most influential figures in modern comics, died today from heart surgery complications. Neil Gaiman has a lovely tribute to Eisner on his blog. The past few weeks have seen the departure of many luminaries in the arts and humanities. Susan Sontag. Jerry Orbach. Artie Shaw. I was especially saddened by Jerry Orbach's death. I frequently watch Law & Order and he was probably my favorite character. The guy just looked like New York, if that makes sense.
I've mentioned BitTorrent frequently on the blog. If you've been scratching your head and asking yourself "What the hell is BitTorrent?", read this Wired article. It does a really good job of explaining what it does, how it works, and why it's such a revolutionary technology. According to the article, one-third of all Internet traffic is BitTorrent data. Incredible.
The Economist has a piece that critically examines the rags-to-riches myth of American social mobility. It was the article's comparison of present-day America to the America of the late 19th century that really caught my attention. Are we living in the second age of the robber barons? In the early twentieth century, populism swept across the country in a response to the huge disparities in wealth between rich and poor. I'm not terribly confident that history will repeat itself. Republicans have been quite effective at cowing Democrats who dare raise the issue of the pervasive economic inequalities in our great nation. Any rabble-rousers are immediately branded as class warriors. And we all know that class warfare simply isn't done in America anymore. For the left to recapture the goodwill of the public, they need to find ways to fling those accusations back in the faces of Republicans. I'm not preaching revolution (yet), but we need to talk sensibly about how opportunity is distributed in this country. Notice how I say "opportunity," not "wealth." I'm not a communist (yet). People should be fairly rewarded for their work. But we also need to start playing the semantics games that the right have played so well for thirty years.
I found some pretty good Vegas deals. It's cheaper if I go during the week. As far as a hotel, I have it narrowed down to the Paris, the Bellagio, and Mandalay Bay. I'm not sure I meet the Minimum Hipster Quotient for Mandalay Bay. I'm afraid the cute desk clerk (because they usually are cute) will look at me, sniff, and politely inform me they've double-booked my room. Maybe I can put on some sunglasses and fake it. Oh, and I totally want to check this out while I'm there. Yes, I am a tool.
My brother left early this morning. Early as in 5 a.m. So I woke up to an empty and rather quiet 19th Floor. I think I've mentioned this before, but I always go through a bit of mental readjustment when a guest leaves after an extended stay. My usual routines go out the window when I have guests, which means I need to catch up on e-mail, podcasts, writing, etc. I also need to clean up the assorted holiday cards and knickknacks that have accumulated on my desk over the past few weeks. And I need to go out and buy a ream of printer paper because my brother used up most of mine printing articles for an academic conference in Phoenix. Yes, he's in sunny, warm Phoenix right now, damn him. And then he's going to drive to Las Vegas for a couple days of fun. I instructed him to scope out the best strippers for me in advance of my own trip.
My first entry of the new year will be brief because my brother is leaving tomorrow. But here is an interesting story about some people with disabilities at a group home who use a multi-player role-playing game as their window onto the world. I'm glad these guys have some means of socializing, but I hope they're also getting to interact with people in meatspace as well.