March 31, 2010

Peekaboo

I really need to get a webcam so I can get in on the whole chatroulette thing before it gets all boring and corporate. I want to find out how many people will believe me when I tell them I'm Stephen Hawking's estranged kid brother. Or perhaps I can acquire a minor degree of fame as "that guy" on chatroulette--the one with the tube in his neck who just sits there reciting dirty limericks. Or maybe I'll just start screaming for help and beg them to call the police. The possibilities are endless.

Posted by wintermute2_0 at 08:58 PM | Comments (1)

March 30, 2010

The Subtleties Of Meaning

This Venn diagram is useful for comprehending the distinction between geek, nerd, and dork:



I consider myself a geek most of the time, but I can easily stray into nerd or even dork territory when conditions are right. Fortunately, I can recognize the signs of onsetting dorkiness and I'm usually able to talk myself down before I self-inflict too much damage.

Thanks to Erin, who knows me all too well, for the link.

Posted by wintermute2_0 at 08:49 PM | Comments (0)

March 29, 2010

Making Enemies

You might think that the nomination of a college student with Asperger's Syndrome to the National Council on Disability wouldn't be a controversial story. You would be wrong. Ari Ne'eman currently has a Senate hold on his nomination and it might because he advocates for more resources be devoted to helping people with disabilities live independently in their communities instead of focusing solely on research for a cure. Like a lot of disability advocates before him, Ne'eman argues for a view of disability that is based on a social rather than a medical perspective. The fact that his beliefs provoke opposition and condemnation demonstrates that the disability community still has work to do in helping the general public understand that getting "fixed" isn't necessarily our top priority.

Examined more closely, the whole kerfuffle is kind of silly. Placing Ne'eman on the Council isn't going to divert one dollar away from ongoing research efforts towards finding a cure. But we also need to recognize that most of the people living with various congenital disabilities are not going to benefit from the cures that are almost certain to arrive in the future. The smartest policy would be to adequately fund both research and community supports rather than framing the discussion as a zero-sum game. But professional "advocates" aren't accustomed to think in such terms. For them, any attempt to portray disability as identity is seen as a threat to their messaging; messaging that all too often employs pity as a strategy for winning financial support.

I do hope that Ne'eman eventually gets confirmed. We need more contrarian voices like his on the national stage.

Posted by wintermute2_0 at 07:36 PM | Comments (1)

March 28, 2010

"It Was Like A Prison."

I don't know if this is getting much attention in disability circles, but the Milwaukee Journal Sentinel recently exposed another facet of the seemingly never-ending child molestation scandal in the Catholic Church that involves a priest at a Milwaukee school for the deaf. Much of the abuse occurred thirty or forty years ago, but the victims kept silent for decades and are only now beginning to come forward. The article highlights the unimaginable isolation that confronted the boys at the school while the abuse was ongoing. Many of them couldn't even communicate with their parents because their parents didn't know sign language. The priest who committed the abuse, now dead, apparently had no qualms about exploiting that isolation for his own purposes.

The Milwaukee Archdiocese has acknowledged that the abuse occurred, but that's probably cold comfort to the victims. And it's difficult not to wonder whether similar tragedies occurred at other Catholic schools for children with various impairments.

Posted by wintermute2_0 at 03:48 PM | Comments (0)

March 27, 2010

Commuter

My van is going to be out of commission for at least a few more days, so after one day of paying overpriced taxi fares, I decided to try the city bus. Lucky for me, there's an express line that connects the the Twin Cities downtowns. I was worried that my not-so-svelte chair wouldn't fit in the bus' assigned disability seating, but it worked well enough to keep me out of everyone's way. The trip itself didn't take any longer than usual, so hooray for efficient and accessible public transportation. I'm probably too spoiled to use the bus every day (especially in the winter), but it's good to know that I have other options to get to work. And at least I won't bankrupt myself on cab fares while simultaneously shelling out a ridiculously obscene amount to fix my van.

Posted by wintermute2_0 at 03:05 PM | Comments (2)

March 26, 2010

At A Glance

According to New Scientist, eye-gaze technology that allows people with disabilities to use computers is now being co-opted by the gaming community. And it works pretty well:

Howell Istance at De Montfort University in Leicester, UK, and colleagues are trialling a gaze-controlled versionof the online role-playing game World of Warcraft (WoW). A translucent control panel floats over the game area and the user navigates, launches spells and attacks monsters by gazing at its virtual buttons in the correct sequence. This week the team reported that trials with 12 experienced WoW players showed that experienced gamers can quickly adapt to an eyes-only control scheme.

When this technology matures, I'm going to make a killing on the pro gaming circuit. And then the endorsement deals will start rolling in.

Posted by wintermute2_0 at 08:17 PM | Comments (0)

March 25, 2010

Ho-Hum

The NYT looks at how people with disabilities and chronic health conditions use the web and social networking sites to connect with other people, including those with similar conditions. The article is fine, but it feels like it's something that could have been written in 2002. Is it really news that people with disabilities use the Internet or that they might use it to discuss issues related to their disabilities? The reporter could have focused on how people with disabilities struggle to afford broadband or how they are using social media to change perceptions about disability, but instead we get this fairly vanilla story. Try harder, Times staff.

Posted by wintermute2_0 at 10:03 PM | Comments (0)

March 24, 2010

Play Date

A new service gives Xbox gamers the opportunity to play with hot women gamers for a fee. Because male gamers haven't yet cemented their reputation as socially awkward doofuses with self-esteem issues.

This is the part where I wax all morally superior about how my enthusiasm for gaming has nothing to do with T&A, but I'm really just pissed that this isn't available for the PC. It gets awfully lonely questing through the realm of Azeroth with nobody but my bust of Spock to observe my heroic deeds.

Wow, that might just be the most pathetically geeky sentence I've ever written on this blog. I'm actually kind of impressed with myself.

Posted by wintermute2_0 at 08:14 PM | Comments (3)

March 23, 2010

Major Malfunction

One of the more unnerving aspects of living with a severe disability is how disruptive a technology malfunction can be. I've been working from home the last couple days because the sliding door on my van is jammed and refuses to open. I can get it temporarily fixed, but eventually I'll have to replace the whole door at the cost of a few grand. As unappealing as that option is, it's better than purchasing a new van at ten times that price.

The van is over a decade old, so this isn't exactly a surprising development. And I'm lucky to have my own vehicle and the means to fix it. I'll try to remember that when I'm staring at the repair bill.

Posted by wintermute2_0 at 08:24 PM | Comments (2)

March 22, 2010

The Great Woman Theory Of History

I wrote this the day after Scott Brown was elected to the Senate:

I was going to post something about the prospects for still passing a comprehensive health care bill, but I fear that any such analysis would quickly turn into an epithet-laced invective against Democratic cowardice. I'd like to think that Democrats will have their little freak-out and then, you know, actually do what we elected them to do. Never mind that Obama already is signaling his willingness to accept a thin gruel of a bill that would do little more than give people the right to bankrupt themselves buying insurance. But that's just Obama doing his elite Jedi mindfuck with the opposition, right?

Right?


Turns out, I was kind of right, but that's only because I was listening to smart people like Jonathan Chait and Jonathan Cohn. The Democrats had their freak-out and then realized they had to go all in rather than try to pull off some sort of Clintonesque triangulation hocus-pocus. But that wouldn't have happened if not for the combined heavy lifting of the President and Nancy Pelosi. I'm not surprised that Obama stepped up, but I had never thought much of Pelosi until recently. She initially struck me as just another career political stiff without much vision or charisma. I was wrong. She kept her head when almost every other Democrat was ready to wave the white flag. She gave the President the cover he needed to keep selling the idea of comprehensive reform. And she rounded up the votes in a Democratic caucus that is anything but homogenous. Without much flash or drama, she got the job done. When the book about the passage of the health care bill is written, she will be regarded as the President's indispensable partner.

Posted by wintermute2_0 at 07:41 PM | Comments (1)

March 21, 2010

Liveblogging the HCR Debate

10:38 p.m.: The reconciliation bill passes 220-211 and now goes to the Senate. Looks like one Democrat had a change of heart. I wonder what the story is behind that.

And that ends the liveblogging. But I'll continue to blog about health care reform for a long time to come. As eventful as the last year has been, this is only one big step on a long journey.

9:55 p.m.: Roughly ten minutes ago, the House passed the Senate bill 219-212. It now goes to the President for his signature. Still up for a vote is the companion bill that would amend the Senate bill.

Even though the outcome became clear earlier today, I'm still a little stunned. This is, by far, the most significant piece of social legislation passed in my lifetime. We can still do big changes in this country. And now begins the long process of making this law even better.

5:28 p.m.: The House will soon begin actual debate on the bill themselves. Based on the procedural votes held so far, it appears that the Democrats have the votes for final passage. I expect that the debate will still be underway when I get back from the play, but I have no doubt I'll miss some hyperbole and demagoguery of the highest form. And that makes me a little sad.

4:17 p.m.: The New York Times is reporting that President Obama will address the nation after the House completes its work tonight. My bedtime may have to take precedence.

3:32 p.m.: A little while ago on C-SPAN, Republican Representative Devin Nunes said this in defense of Tea Party activists who hurled the n-word and "faggot" at Democratic congressmen.

NUNES: Yeah, well I think that when you use totalitarian tactics, people, you know, begin to act crazy. I think, you know, there’s people that have every right to say what they want. If they want to smear someone, they can do it. It’s not appropriate. And I think I would stop short of characterizing the 20,000 people protesting, that all of them were doing that –

As long as Republicans continue to shrug off the darker impulses of their racist and homophobic base, it's going to be very difficult for them to cobble together a ruling coalition in a nation with such rapidly changing demographics.

3:11 p.m.: Stupak votes yes after the President agrees to issue an executive order that says what the bill already says. Whatever works, I guess.

2:45: The actual votes on the bills themselves may not occur until later tonight. And I have theater tickets for 7:00. Liveblogging may be temporarily interrupted. And C-SPAN is now reporting that the White House and Bart Stupak, the leader of a pro-life bloc of Democrats, has reached a deal to secure their votes. That should make passage a nearly sure thing.

2:27: Representative Jim Langevin, who has quadriplegia, just made a speech on the floor in favor of the bill, saying everyone deserves health care coverage that he received and enabled him to give back to his community.

2:13 p.m.: And another procedural challenge from the Republicans. This is going to get tedious pretty quickly.

2:00 p.m.: Debate on the House floor has been underway for about an hour. Wisconsin Representative Paul Ryan seems to be the point person for the G.O.P. delegation. He's already claimed that the bill brings us closer to U.K.-style socialism. Expect to hear this sort of thing a lot today.

Posted by wintermute2_0 at 02:10 PM | Comments (5)

March 20, 2010

Weekend Wonkery

It appears that Democrats are abandoning the deem-and-pass strategy that had been bandied about over the past week and will instead have straight up-or-down votes on the original Senate bill and the companion reconciliation bill. These arguments about process have struck me as so much inside baseball that gets us political types excited, but is dull and irrelevant to average folks. Most Americans want something done to address health care reform and I doubt they care much about the parliamentary maneuvers used to arrive at a final vote. Still, in the event that this legislation does pass, it gives the Fox News zombies pundits one less talking point to support their paranoid claims that the law was somehow jammed through Congress.

In other health care news, MinnPost is running a good overview of how the health care bill would be of tremendous help to low-income Minnesotans who are currently covered through the state-funded General Assistance Medical Care program. If the bill passes, except a lot more chatter at the Legislature on expanding Medicaid as a replacement for GAMC. It won't be easy for the state to come up with the necessary matching funds and the governor will probably be cool to the idea, but Democrats can make a strong case that it would be foolish to walk away from hundreds of millions of dollars in federal aid.

Still thinking about liveblogging tomorrow's vote. Stay tuned.

Posted by wintermute2_0 at 02:45 PM | Comments (1)

March 19, 2010

Vegging Out

I'll be blogging on more on health care over the weekend, but right now there are season 5 episodes of Weeds to stream on Netflix. One must have priorities.

Posted by wintermute2_0 at 08:47 PM | Comments (1)

March 18, 2010

The Stars Align?

This was a big day in the final push towards passage of health care legislation. The House released the final text of the reconciliation bill and the Congressional Budget Office released a very good score for the bill. According to the CBO, the bill will reduce the federal budget deficit by $138 billion over the next decade. No legislation has had this much potential to reduce the deficit since the Clinton years.

The bill itself contains no surprises. It does have a provision to boost Medicaid payments to physicians, which should help address the access issues I discussed the other day. The public option is probably dead (unless the Senate tries to revive it, which seems unlikely), but I remain hopeful that a future Congress can enact it once people realize that the government can do some things pretty well.

The final House vote is scheduled for Sunday. Anything can still happen, but this feels like history in the making.

Posted by wintermute2_0 at 08:43 PM | Comments (1)

March 17, 2010

Civic Duty

I recently received a summons to appear for jury duty next month. My first reaction: awesome! I clerked several jury trials when I worked for a Hennepin County judge, but I always thought it would be interesting to get a juror's perspective on the process. The questionnaire included with the summons asks me if I have a disability that would "interfere with service as a jury member." I'm tempted to respond with "no" and see what happens when I report for duty. I'm probably more likely to be dismissed because I'm an attorney than because of my disability. Still, maybe I'll get lucky and some lawyer will consider me the ideal juror for a particular case. Maybe I can even be that juror that the tough-as-nails prosecutor just can't take her eyes off of during her closing argument.

Posted by wintermute2_0 at 07:51 PM | Comments (0)

March 16, 2010

The Same Story Everywhere

The Times reports on doctors who are dropping patients on Medicaid because states are slashing reimbursement rates to health care providers. The article focuses on Michigan, one of the states hardest hit by the recession and where the state legislature has already enacted deep cuts to provider payments. As a result of the cuts, more Medicaid enrollees are forced to either go without care or travel long distances to see a physician willing to treat them.

Most states, including Minnesota, are being forced to reduce payments to Medicaid providers. Unfortunately, passage of the health care bill isn't likely to provide a quick fix to the problem. It will provide some additional funding to pay for individuals who previously weren't eligible for the program, but states will still be on the hook for a large share of Medicaid costs. And state finances are likely to look pretty shaky for years to come. Unless states can persuade Congress to pick up a higher ongoing percentage of the Medicaid tab, it's going to be increasingly difficult for them to ensure that people on Medicaid have access to the care they need.

Posted by wintermute2_0 at 08:31 PM | Comments (0)

March 15, 2010

Gray Market

I just made my first deal with a Craigslist ticket...er...purveyor. Of course, I got taken for a ride, but I did manage to talk the seller down a bit from the original asking price. I'm only paying 100% markup instead of 150%, so yay me and my semi-competent negotiating skills. But I'll soon have tickets to the sold-out Passion Pit concert at First Avenue (assuming I didn't get totally ripped off). Now, how badly do I want to go the sold-out Yeasayer show?

Posted by wintermute2_0 at 08:31 PM | Comments (1)

March 14, 2010

Notes From A Master

Frederik Pohl is one of the few surviving members of science fiction's Golden Age elite and the only one to maintain a blog. I spent some time perusing it today and it's filled with wonderful stories about his friendship with Isaac Asimov, the rapid rise of the science fiction publishing scene, and his own career as a writer and futurist. Pohl is 90 years old and still writes with clarity and verve. Some SF writers are cranks and misanthropes, but Pohl's blogging has the same compassion and wit that made Gateway one of my favorite books. I hope he continues posting for a good long while.

Posted by wintermute2_0 at 05:25 PM | Comments (0)

March 13, 2010

Up Or Down

The tea leaves are foretelling a final vote on the health care bill in the House of Representatives by the end of next week. Guess who will be glued to C-SPAN late on Friday or Saturday night when the vote finally occurs? For extra uber-nerd points, I might even liveblog the floor debate. Because you know the House members do one thing extremely well: say batshit crazy things on live television without any sense of shame or irony. And the vote itself is likely to be extremely close. To borrow a phrase from the kids, this is going to be epic.

Posted by wintermute2_0 at 05:35 PM | Comments (0)

March 12, 2010

Initiation

I'm posting early today because I'll probably be away from my computer for much of the evening. I'm training in a new nurse and I'm trying to come up with a plan for covering everything she needs to know. It will probably look something like this:

- Mark's Hair: Care & Maintenance
- Mark's Ventilator: What The Hell Are All These Dials For?
- Mark's Hair: Advanced Care & Maintenance
- Mark's Remote Control: Unraveling Its Secrets
- Mark's Wheelchair: Taming Its Inner Beast
- OMG, Mark's Turning Blue!: Keeping Cool in an Emergency

Posted by wintermute2_0 at 12:42 PM | Comments (2)

March 11, 2010

Predictable, But Sad

Dennis Kucinich, allegedly liberal congressman and confirmed weirdo, is planning on voting against the health care bill because it lacks a public option plan. He represents a noisy but fringe element who believes that anything short of a single-payer system is selling out to insurance companies. Never mind that the Senate bill would give millions of people access to Medicaid, a public health care program. Never mind that the vast majority of MoveOn members (hardly a bastion of moderate centrism) support the bill's passage.

Kucinich is free to vote his conscience, but most of us progressives are interested in, you know, making some actual progress on the issue. Thumbing one's nose at a sensible solution for the sake of making a dubious ideological point is the worst kind of egotism. I found it repulsive when Lieberman did it and I'm not any more sympathetic to Kucinich.

Posted by wintermute2_0 at 06:42 PM | Comments (2)

March 10, 2010

Retro Look

You know what my wheelchair is missing? A vodka-cranberry juice dispenser. And a smokestack. And brass control levers. And sound effects. In other words, pretty much everything found on this steampunk-themed wheelchair. The guy who designed this chair doesn't say whether he does work for hire, but I wonder if my savings are sufficient to pay for a similar custom job. I'll pay extra if he can come up with copper ventilator tubing that coordinates well with my ascot and goggles.

Thanks to William for the link.

Posted by wintermute2_0 at 08:53 PM | Comments (3)

March 09, 2010

Flynn's Return

Disney just released another trailer for Tron: Legacy. It's not quite as eye-poppingly cool as the first one featuring the racing lightcycles, but I approve of the updated look. Namely, the several very attractive women inhabiting the world of Tron are no longer forced to wear those ridiculous head-to-toe costumes. Apparently, the Master Control Program developed a sense of style that didn't exist online or offline in the early 80s.

Posted by wintermute2_0 at 09:24 PM | Comments (0)

March 08, 2010

This Era's Model-T

It had to happen sooner or later. The first commercially available brain-computer interface has just hit the market. The Intendix (a horribly bland name for such a cool technology) comes with a skullcap and a little netbook computer that displays a grid of letters. Users type by focusing when the desired letter is highlighted on the screen. And it can be yours for the low price of $12,250.

This kind of exorbitant pricing is de rigeur in the world of assistive technology, so I'm not particularly surprised or even outraged. But this technology is different; it's not inherently limited to people with disabilities. Sure, we'll be the early adopters out of necessity, but these interfaces should gradually improve. People without disabilities will eventually want brain-controlled computers and that should foster competition and lower prices. At least, that's my hope.

Posted by wintermute2_0 at 09:40 PM | Comments (1)

March 07, 2010

Hollywood Reporter

As a blogger who frequently blogs about pop culture, I'm legally obligated to make some sort of completely uninformed Oscar predictions. So here's one: Avatar will snag Best Picture (because the Academy wants to demonstrate that it "gets" the movie-going public that made this movie such a juggernaut) while Kathryn Bigelow will take the Best Director award (because the Academy recognizes that The Hurt Locker is a better film and it wants the Monday morning news to be about how that particular David-Goliath match-up ended in a draw). And here's another: Christoph Waltz will win Best Supporting Actor for his menacing yet alluring portrayal of Colonel Hans Landa or there is no justice in this world.

Posted by wintermute2_0 at 02:13 PM | Comments (0)

March 06, 2010

Local Celebrity

Darcy Pohland, a local television reporter for WCCO who also had quadriplegia, died unexpectedly yesterday. I don't watch the local news much anymore, but I remember seeing Pohland on TV when I first moved to Minnesota and being genuinely surprised at seeing a person with such a significant and visible disability making regular appearances in front of a camera. I hesitate to use the term "role model" when describing anyone with a disability, but Pohland's regular presence in the local media landscape probably shaped some of her viewers' attitudes on disability for the better.

Pohland was 48.

Posted by wintermute2_0 at 01:41 PM | Comments (1)

March 05, 2010

Applying Some Psychic English

We all know that the coming wave of neural-computer interfaces will help people with disabilities do things like use computers, operate wheelchairs, and control robot armies. But what about the really important stuff in life? Like playing pinball?

Check.

Once this technology arrives, I'm going to start hanging out at the local pinball arcade and hustle high school truants out of their lunch money. I just have to figure out whether there are still any pinball arcades left in the Twin Cities.

Thanks to Allie for the link.

Posted by wintermute2_0 at 10:31 PM | Comments (0)

March 04, 2010

What Small Government Looks Like

Minnesota, like a lot of states, is contemplating significant budget cuts that would affect people with disabilities. But there's cutting and then there's obliterating, which is what South Carolina may do to its services for 26,000 residents with disabilities. All home and community-based services would be eliminated, leaving state funding for institutional care (which is required under federal Medicaid law). As a result of these proposed cuts, family members of of people with disabilities would be forced to quit jobs in order to serve as caregivers. Even worse, some individuals may be forced out of their homes and into nursing homes. In comparison, our own proposed cuts seem almost modest.

I'll say it again: Medicaid needs to be completely federalized to ensure that people with disabilities aren't punished for living in a poor state that is apathetic or even openly hostile to the notion of community integration. This patchwork system certainly benefits people like me who are lucky enough to live in a generous, prosperous state like Minnesota, but it does a disservice to so many others.

Posted by wintermute2_0 at 08:09 PM | Comments (0)

March 03, 2010

It's Not T.V., It's A Big Box Of Awesome

First, the good news. HBO has greenlit the Game of Thrones series based on the first book of George R.R. Martin's fantasy opus. The bad news is that it won't air until next year. It still looks as if HBO is planning to adapt one book for each season of the show, which might give Martin some incentive to hurry up and finish the long-awaited fifth volume of the series. I'll be curious to see how HBO markets the show. The books are quite dark in tone, but read more like historical fiction than fantasy. There's no bestiary of fantastic creatures (except for a few dragons) and few displays of magic. There is plenty of sex and violence, which should suit HBO just fine.

This almost makes up for the cancellation of Rome. Almost.

Posted by wintermute2_0 at 09:03 PM | Comments (0)

March 02, 2010

Vox In A Box

Film critic Roger Ebert appeared on Oprah today to talk about his battle with cancer that left him unable to speak and eat or drink by mouth. He also demonstrated his new computer-generated voice that a software company designed using previous TV and DVD recordings of his voice. It doesn't have the texture and intonation of a natural human voice, but it sounds enough like him to bring tears to his wife's eyes.

Let's hope the developers can eventually make this an iPhone app so that he doesn't have to pull out a computer every time he wants to speak. And I have no doubt that, in another five years, this artificial voice will be almost indistinguishable from his natural voice. Speech synthesis technology has been around a long time, but it looks like it's finally reached a point where it can truly replace a voice lost to illness or injury.

Posted by wintermute2_0 at 07:45 PM | Comments (0)

March 01, 2010

What Happens In Washington D.C. Matters

As I expected, the Minnesota House of Representatives failed to override Pawlenty's veto of a bill that would have restored General Assistance Medical Care, the health care program for the state's poorest citizens. Most of the House Republican moderates who participated in the only successful override of a Pawlenty veto have retired or have been defeated in the last election. And the few remaining are loathe to side with Democrats in an election cycle that strongly favors Republicans. A procedural maneuver allows Democrats to make another attempt, but it seems increasingly unlikely that GAMC will be saved before funding runs out on April 1.

It's worth noting again that almost everyone eligible for GAMC would be eligible for Medicaid under the Senate health care bill. If Minnesota took advantage of the bill's early expansion provision, these individuals could be enrolled in Medicaid in a matter of months. I'm not sure how closely our congressional delegation is paying attention to the GAMC fight, but they need to understand how a "yes" vote could almost immediately improve people's lives.

Posted by wintermute2_0 at 08:43 PM | Comments (0)