Aug 112009
 

The forces opposed to health care reform have been test-marketing a new and rather strange argument over the last few days. The argument goes like this: people with disabilities will be worse off if health care reform passes because the evil government bureaucrats will decide that our lives are not worth the expense. Sarah Palin, conservatism’s beacon of intellectual honesty, claims that her son Trig (who has Down’s Syndrome) would have to come before a government “death panel” that would decide whether he can continue to receive medical care. An editorial in the conservative Investor’s Business Daily opines that Stephen Hawking “wouldn’t have a chance in the U.K., where the National Health Service would say the life of this brilliant man, because of his physical handicaps, is essentially worthless.

As just about every other rational blogger has pointed out, the fact that Hawking continues to live and work in the U.K. and is not living in mortal fear of syringe-wielding bureaucrats would indicate the editorial is unadulterated bullshit.

But there’s something more going on here. Conservatives love to pretend they’re the disability community’s knights in shining armor when it suits their political purposes. In years past, they tried to co-opt us in the abortion debate by making both subtle and explicit claims that every gimp would be snuffed out in the womb were it not for them staying the liberals’ murderous hand. The right has now adapted the tactic to the health care debate, portraying themselves as the defenders and protectors of us meek and vulnerable cripples who dwell in the shadow of a tyrannical and cruel government.

I won’t win any Pulitzers for this sentence, but they can take their false magnanimity and go fuck themselves. Here’s how well the current health care system has worked for me. My parents hit the lifetime cap on their insurance policy because of my multiple hospitalizations as a kid. If not for the fortuitous enactment of a state law that allowed parents to buy into Medicaid, my parents would have either had to impoverish themselves or surrender custody of me to ensure I received the intensive care I needed. If I tried to buy individual coverage now, every private insurer would laugh in my face. My employer-based insurance won’t cover my nursing care (unless I’m hospitalized and I need a nurse to train the hospital staff on comprehending my gimp accent).

The only reason I’m able to live a life with any measure of dignity or independence is because of a government health plan. Millions of people with disabilities don’t even have access to that, what with states slashing Medicaid budgets. The current system forces most people with disabilities to live at the economic margins to receive medical care and those safety nets are badly frayed.

We need health care reform. I need it. Trig needs it. Kids and adults with every kind of disability need it.

What we don’t need is a bunch of screeching ideologues attempting to cynically exploit us for purposes of maintaining the status quo.

Aug 102009
 

I came across an interesting tidbit as I was getting my gaming news fix. The creators of the forthcoming Half-Life Episode 3 (for the uninitiated, Half-Life is a popular shoot-’em-up) have revealed that the game may include a deaf character. According to the article, the game’s designers are studying sign language and developing technology that will accurately render signing in the game.

It’s encouraging to see that videogame makers are cognizant of deaf people’s existence and are taking the time to include them in their games. As games grow in both scope and sophistication, they can and should include a cast of characters who reflect the dizzying gamut of human identities and experiences.

Aug 092009
 

Living in a downtown high-rise has certain advantages. No lawns to mow. No driveways to shovel. Plenty to see and do within walking distance. But then there are the drawbacks. Like the building’s fire alarm going off at 2:30 in the morning for no apparent reason. It seemed to go on for at least a half hour, although that might have been an exaggeration of my sleep-deprived brain. I’m not sure what I would have done if the building had truly been on fire. I’m imagining my nurse dragging my naked body feet-first down nineteen flights of stairs and getting trampled by other oblivious and frightened residents. I think I might decide instead to stuff wet towels under the door and hope things turn out for the best.

Aug 082009
 

Nick Dupree reminds us that, in many states, people who are ventilator-dependent continue to be forced into institutions when they turn 21. It’s a grim reminder that health care reform should (but probably won’t) include a uniform set of Medicaid home care services that all states must make available to people with disabilities. Poorer states could receive a helping hand from the feds via an enhanced matching rate or perhaps even full federal funding of these services. It’s absurd that someone should be threatened with institutionalization just as they are approaching the threshold of adulthood.

It’s also worth noting that Nick has spent the past eleven months in a New York facility while he awaits approval for home care services. The longest I’ve spent in a hospital setting is three months, so I can only imagine the levels of stir-craziness he’s enduring. Here’s hoping that Nick can soon make his escape and begin a life of independence and discovery in Gotham.

Aug 072009
 

Here are the results of my attempt to insert myself into the Mad Men universe. I know that it doesn’t quite look like me, but the website didn’t offer a big-ass wheelchair or a ventilator as accessories, so I had to work with what they had. Now that I think about it, I suppose the vent would have to be some retro affair with lots of vacuum tubes and diodes. I do think the newspaper and pipe, combined with the honeymoon suite setting, give me a certain IBM-geek-after-dark allure. Don’t you agree?

Aug 062009
 

Let us bow our heads for a moment in memory of John Hughes. When future historians attempt to analyze the phenomenon of the Reagan Era teenager, his films will be mandatory viewing. Hughes’ characters could be shallow, materialistic preppies, but they freely recognized their own shallowness and materialism. But the world was probably going to blow up anyway, so why spend too much time thinking about what a jerk you are? Cue the Simple Minds and let’s turn the school library into a dancehall.

For a more trenchant analysis of Hughes’ oeuvre, I highly recommend my friend Adam Wahlberg’s 2008 MSNBC article.

Aug 052009
 

Watch this brilliant economist try to scare CNN viewers with these ominous words:
[J]ust wait till you see Medicare, Medicaid … done by the government.

I happened to be paying very close attention on the day we talked about Medicaid in law school and I’m pretty certain it’s a government-run program. And the fact that I’m alive, living at home, and not lying in my own filth tells me the government is doing something right.
There are plenty of legitimate criticisms to be directed against the health care legislation pending in Congress. It may not do enough to reduce skyrocketing costs. Its proposed financing mechanisms are gimmicky. It’s a giveaway to private insurers. But listening to most Republicans talk about health care is a depressing and wearisome experience. Whatever basic understanding they have of the policy issues involved is completely overwhelmed by their all-consuming fear of government.

Aug 042009
 

I don’t have much time for proper blogging tonight, but via Kottke, I came across this lovely photo showing a flotilla of hot-air balloons ascending into a dawn sky over the French countryside.

The world isn’t such a bad place, is it?

Aug 032009
 

Here’s a scene of self-styled “patriots” trying to shout down Rep. Lloyd Doggett (D-TX), a supporter of health care reform, outside a grocery store.

It makes my wonkish heart go pitter-patter to see people get all excited about public plans and health insurance exchanges. But the crowd’s overwrought pitchforks-and-torches vibe negates my enthusiasm. Most of these people probably couldn’t articulate exactly why they oppose health care reform so vehemently, except to string together a few disjointed sentences that rely heavily on the words “socialism”, “France”, and “freedom”. But progressives can’t afford to dismiss these theatrics out of hand. Unruly mobs make for good television and the media are lazy enough to show videos like the one above and proclaim that Americans are strongly opposed to health care reform.

Instead, we need to call these people for what they are: unwitting lackeys of corporations and conservative ideologues who prefer the dysfunctional status quo to any alternative. But even that’s not enough. We need to keep reminding people that, under the current system, a job loss means loss of insurance. We need to remind people that, under the current system, individual policies can be rescinded, And under the current system, insurers can charge exorbitant premiums and co-pays.

Most importantly, these protesters and their masters have no serious ideas of their own to address these problems. Whatever bill gets passed will by no means be perfect. Reform is an iterative process that requires time and a healthy measure of patience. We are a nation of tinkerers and risk-takers, which makes the empty, fearful slogans and authoritarian tactics of these protesters seem all the more foreign and sadly desperate. 

Aug 022009
 

Like any other group of people, those of us with disabilities are perfectly capable of pulling stunts that are really stupid, even criminal. Take, for instance, the case of the British man with autism accused of hacking into American military networks back in 2001-2002. Gary McKinnon now faces extradition to the U.S. to stand trial. McKinnon’s family and several members of parliament contend that he is too vulnerable to be sent off to America and should instead be tried in the U.K.

As an example of society’s conflicting notions about disability and criminal justice. It’s not difficult to ascribe McKinnon’s actions to naive obsession. He claims that he was only looking for evidence of a U.F.O. coverup and had no malicious intent. But British authorities argue that his disability doesn’t exempt him from equal treatment under the extradition treaty with the U.S. I’m inclined to agree. The struggle for disability rights is the struggle for equality in both the eyes of the law and in the eyes of our fellow citizens. We do ourselves little good if, in one breath, we demand equal access to employment, education and the like but then point to our frailties and beg for pity when we don’t like the full implications of said equality.

I realize that McKinnon may not care one bit about promoting the integrity of the disability rights movement. I probably wouldn’t if I was in his situation. But when a person with a disability argues that he should receive special dispensation under the law solely because of his disability, that should be cause for alarm.