I’ve been thinking about what I should do with the stimulus check I’ll be getting from the government in a few months. I’m getting too old and responsible to blow the whole thing on frivolities. In fact, I think i’ll put the entire amount in my savings account as an act of protest against rampant consumerism. Take that, ruling elite.
Earlier this week, I accepted an offer to be the policy lead on a new Medicaid service option for people with disabilities. Some of you know that for the past several years, I’ve served as the policy lead for the Demonstration to Maintain Independence and Employment. Now that the DMIE is operational, I figured it was time to try my hand at something else. This new consumer-directed option (colloquially known as the “J” because of its federal statutory citation) will give people with disabilities more control over their funding for personal assistance services. It essentially puts a cash allowance in the individual’s hands to use for purchasing human or technological assistance with their personal care needs.
I’m looking forward to developing another cutting-edge initiative as well as the exposure I’ll get to new areas of policy. If I ever want to be a disability policy guru, I need opportunities that will give me a fresh perspective on the intersection between theory and practice.
I was on an errand through the skyways last night when some guy stopped me near the Government Center and awkwardly asked my nurse if he could pray for my healing. In GimpWorld, this kind of thing is like a solar eclipse: not exactly rare, but infrequent enough that it catches you off-guard. I declined the man’s offer and shortly afterwards my nurse (herself an evangelical) said to me something like, “There are some freaky Christians out there.” The guy probably said a prayer for me anyway, which is fine. I just hope he’s from out of town. I wouldn’t want him to see me again and be all disappointed that I’m still a gimp.
A disability is not an open invitation for strangers to indulge their messianic urges, but I do appreciate the blog material.
I’ll say it again: caucuses (cauci?) are an odd method for encouraging participation in the presidential nomination process. To compress voting into a ninety-minute window is to exclude thousands of people who want to vote but have to work. My own caucus site was overwhelmed with voters and the poor volunteers could barely keep up with the flood. I saw a few people get turned away because they showed up a few minutes after the caucusing was over. It’s a confusing, disorganized process and I hope that talk of switching to primary voting gains some traction. Meeting one’s neighbors is great, but that’s what block parties are for.
I’m leaving shortly for my caucus, where I’ll be supporting Barack Obama. I like and respect Hillary, but Obama is the kind of candidate who comes along once in a generation. He has the capacity, more than any other political leader I’ve seen in my lifetime, to restore our faith in ourselves and our country. He personifies all the best qualities of the American civic character: intelligence, vision, passion, and humility. Clinton would make a fine president and I will gladly support her if she is the nominee. But tonight, I’m feeling like I can play a small part in ushering in an age of transformation that finally slams the door shut on the twentieth century and carries us into a future we’ve imagined for far too long.
Scientists have figured out how to infect mice with the virus responsible for the common cold. They claim that this could lead to a more complete understanding of the virus’ behavior and the development of possible treatments. This is not great news if you’re a lab mouse, but it probably beats grislier fates like having your spine severed or being forced to digest carcinogenic substances.
During one of my frequent hospitalizations as a kid, the nursing staff in the ICU created a laminated spelling board for me to use as a communication tool until the respirator could be removed from my throat. The cumbersome process of pointing at letters to express myself caused me to lose my patience on several occasions. My words trickled out at a maddeningly slow pace, crude approximations of the thoughts racing through my head. But my own brief experience with losing my speech faculties pales in comparison to that of Jean-Dominique Bauby in The Diving Bell and the Butterfly, based on his book of the same name.
Bauby, the editor of Elle magazine, had a massive stroke that left him completely paralyzed, able to blink only his left eye. He learns to communicate again by having the alphabet recited to him and blinking to indicate the letter he desires, slowly spelling out words and sentences. Through this method, he eventually writes a book about his life with locked-in syndrome. Aiding him in his endeavor are several beautiful and compassionate women: therapists, assistants, and former girlfriends. Never has the alphabet sounded so alluring. But the film really shines in conveying how Bauby’s universe has shrunk after his stroke, encompassing little more than the confines of his room and the hospital grounds.
I check out Mac-related assistive technology sites from time to time and I’m beginning to think that all the interesting developments in gimp-centric technology are taking place on that side of the fence. Mac users have great-looking on-screen keyboards that are frequently updated, while my OSK is essentially unchanged from the version I first bought in the early Nineties–jaundiced color scheme and all. I don’t necessarily want to give up my Windows box, but I wouldn’t mind having a Mac share my desk space. I’d need a bigger desk, though.
Someday, I will actually give in to my Mac lust. You’ll see.
Two women with mental disabilities were sent into Baghdad markets today with explosives strapped to their bodies, which were then detonated remotely (although the last fact seems to be disputed by American authorities). We’ll probably never get the complete story, but I’m sure people with disabilities have been used like this in other conflicts. My friend Rose best summed the appropriate reaction to this event in one word: ick.