March 31, 2004
Recovery
I'm still feeling a bit out of it. I didn't realize I was so tired until I started falling asleep in my chair at, like, 8:30 last night. While in Miami, I think I averaged maybe 4-5 hours of sleep each night and it's probably catching up with me. And I'm kind of amazed that everything went so smoothly. No equipment failures or forgotten items. Northwest Airlines actually seemed to handle my stuff with a good deal of care, which hasn't always been the case. When we arrived in Miami last week, we were stopped by a couple who had a daughter on a ventilator. They asked us how the hell we managed to fly with a vent. We told them that sometimes you just have to take risks and, like the commercial says, just do it. I'm so glad I had the opportunity to experience those six days in Miami. For me, life is all about experiencing everything this mad, beautiful world has to offer. And I had some fucking outstanding experiences over the last week. When I think about everything I saw and did and felt...I can barely describe how good it is to be alive
A couple more pictures. Here I am enjoying a margarita at a South Beach restaurant.
And here's a good example of the many funky Art Deco hotels that are scattered around Miami Beach.
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March 30, 2004
Snapshots
Here's a picture of Miami Beach, which was about a ten-minute walk from our hotel. The beach has a broad, smooth walkway that runs along the entire length of the beach.
And here's me getting my feet wet in the Atlantic, with a little help from one of my nurses.
I met this charming woman while shopping in South Beach. Her name's Elizabeth and she works in one of the clothing stores I was checking out. We started talking and before I knew it, she was inviting me to dinner.
And here we are again at dinner the following day. I couldn't think of a better note on which to end my trip.
More to come.
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Well, I'm Back
And I'm disoriented as hell. My six days in Miami already are beginning to feel like an extended dream. If I didn't have the pictures to prove I was there, I'd wake up tomorrow and wonder if I had ever really left. But I suppose I do also have the sunburn as further evidence. How the hell did I burn my eyelids and my lips, but nothing else? I've also resolved to learn Spanish. It can't be that much different than French, which came relatively easily to me. I'll start posting some of the photos later tonight. But here are a few things I'll remember from my trip:
Eating lunch at a seaside restaurant on Islamorada in the Florida Keys
Sipping hot, sweet cafe cubano at a little bakery on Calle Ocho
Dipping my feet in the Atlantic Ocean
Talking to two very animated African-American women on the front porch of my hotel until 2 in the morning
Sitting on a beach chair and feeling sand under my fingertips
Spending way too much money on a Versace shirt
Eating dinner with my new friend Elizabeth (I'll explain this one in more detail later)
Gazing at the streaks of neon scattered across the streets of South Beach from my hotel roof.
So, did y'all miss me?
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March 28, 2004
Outrage Overload
I've been steadfastly avoiding making entries about politics, despite Mark's frequent forays into that realm on this blog, primarily because for about the last year, this has described me pretty well.
But this leaves me speechless.
Six hundred Americans have died. For the entire month of April last year, my mother watched the casualty reports every night in fear that the child of a man who works for her would show up. (He was in some of the heaviest fighting in central Iraq) The reasons proffered for that war have become more and more obviously bogus in the meantime, and our President, the man who sent our servicemen and women off to die, and they continue to die each passing week, decided it would be appropriate to joke about how much of a sham his justifications have been.
Yes, it's been a few days since it happened, but I've been getting more and more disgusted about it each day.
And just to not end on that note, here's a plug for an organization I used to work for way back in 1986-7. They're still around, and doing much to help people with disabilities (even if their own webpage isn't).
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March 27, 2004
So I deposited the check
So I deposited the check I got from the state for my jury duty last month. It was a nice little eighty dollar surprise for a day and a half of nothing more than watching a video, reading a book and answering 24 extremely personal questions in front of 75 people. I had almost forgotten about it completely when that check came in (and in a very official envelope from the state, I thought I was in real trouble when I first saw it).
The experience wasn't much. I was subjected to a video of Ed Bradley telling me how serving on a jury wasn't just a civic duty of mine, but it was also a civic honor, which could only score an eye roll from me. I can handle jury duty, it's just when I'm being patronized that I get irritated.
So as I noted, it ended after I went up to the courtroom and answered a bunch of questions about myself to first the presiding judge, and then the two attorneys in the case. It was a case about a guy who got nailed on Interstate 87 with 10 pounds of marijuana in his car. Police here have been pretty rough on the Interstate recently, since my exit is no more than 75 miles from the border. But I digress.
New York State's a no exemption state, meaning that there are no automatic exemptions from jury duty, unlike other states where I've lived, so apparently private attorneys, police officers, prosecutors, convicted felons and even judges may be called on occasion to serve on a jury, but as I was sitting in the box answering questions about myself, I couldn't help but wonder if de facto exemptions still exist.
The judge asked me about my attending law school, and my work for a judge, and about the criminal cases that the judge oversaw, and I realized quickly while I was answering those questions that there was no way that either of those two attorneys would want me on that jury. While none of the questions were especially probing or personal, there would have been too many risks they couldn't have accounted for by having me in there, and this wasn't because my situation was unusual; the same could be said about anyone who had gone to law school.
So when the attorneys came back after spending some time with the judge in the judge's chambers, I was told I could go home and that my jury duty had been fulfilled. I had not been selected for the jury. So off I went, eighty dollars richer for having spent two days hanging around the Essex County courthouse.
But I have to wonder if the no-exemption rule was just in place to give the appearance of equity that simply doesn't exist. Two answers for two questions from me and I'll never see the inside of a jury room. The same probably could be said about the convicted felon down the row from me, who was also dismissed (from answers to different questions, of course :p). So was this nothing more than an elaborate waste of everyone's time just to give the public the incorrect impression that "no one is exempt from jury service"?
I'll have to write my senator.
But there was another interesting thing that I noticed during my brief stay. As all 180 of us prospective jurors sat in our waiting room, I overheard plenty of grousing about having to come in for the service. But upon the judge asking us questions about ourselves, not one of us took the easy opportunity to get out of it. Here's the example for me, which did not differ in any practical sense from anyone else examined as I was there:
The template questions asked me if I had any members of my family or close friends who worked in law enforcement. I have a cousin who works as a deputy for a sheriff in Arizona, and another who is an FBI agent (who actually spent time busting large scale marijuana producers, but I was not asked about that specifically) and told this to the judge. He asked me if I felt that my relationship to either of my cousins might affect my ability to fairly consider the case of the guy busted with pot in his car. I could have said "yes", of course. Hell, everyone there who had a family member or friend in law enforcement could have said yes to this question, and been assured an easy one way ticket out of the process. But none of us did. Not one.
I guess Ed Bradley and his "civic honor" really got to us.
Next week I plan to volunteer to help out at the Lake Placid Film Festival. Martin Scorsese's going to be coming this year, so it looks like quite an event.
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March 26, 2004
This is where the fish lives
I'm cutting it close to the wire tonight, as I was delayed on my weekly journey to Essex Junction, Vermont, to participate in the bowling league sponsored by Champlain ARC, a charitable organization for which my probable future sister-in-law works. Today the Adirondacks experienced temperatures in the low 70s, which puts it about 40 degrees higher than this March's average. While the warmth was welcome, I had forgotten what might happen when an entire watershed experiences about 9 inches of snowmelt in one day. Needless to say, with all the fog and the possible flooding, I'm lucky to be alive, albeit with the last sixteen miles of the drive taking about forty five tortuous minutes. Of course, when you're driving in the dark alongside a ravine like this, you take as long as you need to.
So I'll try to get something more interesting tomorrow.
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Big Time Sensuality
At the same time, Miami feels like a foreign land and completely familiar. My hotel is a ten minute walk from the ocean. I spent much of yesterday and today along the beach. Yesterday felt like being inside a wind tunnel because of the strong ocean gusts. But I still somehow managed to get a little sunburnt. The architecture in South Beach is like nothing we have in the midwest. Everything is clean shapes and lines. Lots of circles and squares.
And the women. My God, the women. Physically, they aren't that much different than women anywhere else, but they dress and carry themselves in a way that demands attention and a little awe. I think midwesterners have a certain sense of discretion about their own bodies that simply doesn't exist here. I experienced a little culture shock when I started seeing topless women on the beach. I had to catch myself because I think I was gawking more than once while walking along the beach. At lunch, we were sitting at a sidewalk restaurant on Lincoln Drive when an absolutely beautiful woman with long hair and olive skin walked by. She looked at me and I looked at her and she smiled so brilliantly and I was filled with a bittersweet longing for the rest of the afternoon.
Don't know when I will write again. Maybe not until Tuesday.
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March 25, 2004
Of Mongolians, Moral Dilemmas and Other Inane Items
So I was up in nearby Lake Placid the other night for a special concert presented by my friend Dan Plumley, who runs the Totem Project (Just a note, that website seems to be under permanent construction, so don't expect to be blown away) The performance was by native Mongolian musical and singing group called Uragsha, which is part of the much larger Yara Arts Group.
I'll admit that I didn't know quite what to expect, but this group blew me away. I'm not one to be impressed with vocal performances, but the four performers, three men and one woman, native Buryats from eastern Siberia, were extraordinary. Each of them had a vocal range and dexterity that I had never heard, in either a live or recorded performance. In the unlikely event that their North American tour takes them to your area, I would heartily recommend attending. Truly it's a unique, traditional performance from a part of the world that doesn't get much attention.
And on a similar, but much more troubling note, I recently received a package from my Aunt Patricia in Phoenix. Included in it was a new musical CD that my cousin, Ryan, had spent over a year producing. He's the frontman of his group, playing acoustic guitar, backed up by two of friends playing the acoustic bass and drums. Admittedly it's not the sort of music I usually enjoy, but I put it on to give it a whirl nonetheless.
Well, after the initial serviceable guitar work, Ryan started singing, and to my genuine horror, he was awful. His voice was pretty weak to begin with, almost apologetic and frequently out of tune, and the pedestrian lyrics were no help, but further on when he tried to sustain a note, or even worse, go up or down a third on a sustain, I had to turn to CD off, stunned.
I later played it for my mother, who, within ten minutes, said, "he really needs voice lessons, doesn't he?" (Putting it on me, of course. My mother's a lot craftier than I give her credit)
Being a writer, I can appreciate how much time and effort he and his friends must have put into the CD, which makes me all the more aghast. I know my Aunt's going to call me up sometime soon, and invariably the conversation will turn to my opinion of his work. To this day, I'm still not sure what I'll say, but for now I'm leaning toward manufacturing some big news on my end so the issue never arises. I may be the first man in the history of the world to get engaged just to avoid brutally panning a relative's creative work.
Of course, I could just be honest but so appalling in my presentation that the message gets lost in the disarray.
"Well, I'm sure it got him a lot of [chicks], Pat, which was probably the whole point of that endeavor in the first place."
I'm doomed.
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March 24, 2004
Inna here
Writer's block has always plagued me since the early days, back when I was using PFS:Write and hoping to God that the save function didn't render my entire document unusable, (Those were the days) so my current trepidation and inability to write much of anything is decidedly familiar.
But I get ahead of myself. I'm Charles Whitney. I'm 32 years old and I live in the idyllic hamlet of Keene Valley, New York. Mark and I got to know each other when we were tossed into the same first year section at the U of M back in 1995. We became friends because he always seemed to be hanging out in the break room whenever we didn't have class, and that's where I'd go whenever I didn't want to spend my free time up in the library (which was distressingly often, looking back at it now).
Which has me wondering if I'll look back at this guest blog debut with similar distress. Oh well. I'm here now, deal with it. I'll dig up something a bit more interesting tomorrow.
Posted by wintermute2_0 at 10:36 PM | Comments (1)
March 23, 2004
Outta Here
From the Cleveland Enquirer:
At Ohio psychiatric centers, workers molested children, denied them food or gave them alcohol and drugs. Some kids suffered broken bones. Others lived in homes so dirty they urinated on the floor by their beds.
Taxpayers shell out $160 to $1,000 a day for each mentally ill child who lives in these private treatment centers.
Some things simply shouldn't be privatized. After many years of neglect and oversight, state policy makers are beginning to grapple with the unique issues surrounding childhood mental illness. Given the right treatment and therapy, nearly all of these kids can be helped. But in the stampede to privatize every traditional state service because it's cheaper and easier, we throw kids into predatory environments that will screw with their heads at a time when they are especially vulnerable. Great.
I've been meaning to write about this before, but it keeps slipping my mind. NASA engineers have developed sensors that can detect and process subvocal speech, which is essentially the nerve impulses that travel from the brain to the vocal cords. If this technology matures, it would be like manna from heaven for those with various communication disabilities. Attach these sensors to a human-sounding voice synthesizer and you have what would amount to natural speech. Man, I'd love to dictate to my computer subvocally. This is one of those technologies that has a ridiculously high cool factor.
Leaving on a jet plane tomorrow. I'm not sure what the next six days holds for me, but I'm sure it will be an adventure. Not sure when I'll be blogging and I definitely won't be checking e-mail. I leave you in Charles's capable hands and you'll hear from me soon.
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March 22, 2004
Bureaucratic Entanglements
Goddamnit. Something had to come along and foul up my mood before vacation. On Friday, I received a letter from my condo association saying I owed $900 in overdue association fees. I figure it must be a mistake because I always pay my fees on time. I call the management company this morning to straighten things out. I discover that my association fees had been raised by $20/month in January. January, 2003. Why did I never find out about this? Because they were still sending billing statements to the previous owner of my place. So I've been unknowingly racking up late fees for over a year now. The management company waived the late fees after realizing their fuck-up, but insisted I had to pay the remaining $300 and some dollars. I wrote a letter of appeal to our Board, so we'll see what happens. If I had a little less dignity, I'd play the "poor cripple" card, but I can't bring myself to do that. I refuse to let this affect my trip, so I may just have to resort to a couple drug runs to Mexico. After all, who's going to search the inside of my ventilator? Or I may have to start producing and selling some amateur porn on the Internet. Other ideas on how I can make some quick cash?
You know, I'd like to think that Richard Clarke's allegations regarding the Bush Administration's pre-9/11 handling of counter-terrorism will piss off a lot of voters, but I think so much of this comes across as too wonky for the average American. It gives something for the talking heads to joust back and forth, but I think most people just want to know whether they'll have a job in six months and how the hell they'll pay for the next hike in their health insurance costs. Maybe I'm wrong. Maybe Kerry can find a way to spin it so that people sit up and start asking questions. But I'm not optimistic.
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March 21, 2004
Progress Report
Another birth in my circle of friends to shout out to the rest of the world. My nurse Michelle recently gave birth to a beautiful daughter, Anna. She has two sons and she kept telling me she wouldn't believe the third was a girl until she saw it for herself. I think she can start believing it now.
A quick book update. A little more than 150 pages and counting. I'm at a point where I begin to see the shape of the plot for the next...half?...two thirds? I know where I want to go, but it's difficult to judge how long it's going to take to get me there.
Do people find the design for this site boring? Seems like all the cool blogs have some visual element that makes them distinctive. Then you have mine, which kind of looks like the Brand X of blogs. If people have ideas for a logo or other ways to add visual flair to my soliloquies, e-mail them to me and I'll look at them when I return from my trip. I know I've put out this call before, but I figure it doesn't hurt to try again.
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March 20, 2004
Your Guest Host
While I'm enjoying a few days of hedonism in Miami, guest-blogging duties will be handled by my good friend Charles. Charles and I were classmates in law school and we lived in the same West Bank apartment building for several years. We share the same dry sense of humor and he is a writer of considerable skill. I'm confident that he'll keep all of you amused while I'm away. And I won't be completely abandoning you. My hotel has high-speed access and I'll try to post a couple updates and maybe a few pictures documenting my time in tragically hip South Beach. So give Charles a warm welcome and play nice with him while I'm gone.
I'm a big fan of The War of the Worlds. I own the DVD and I pop it in whenever I'm in the mood for something old skool. And now I hear that Steven Spielberg and Tom Cruise are thinking about doing a re-make. It could be brilliant or a disaster. Part of me imagines the end of the movie as directed by Spielberg: Tom Cruise kneels beside the body of one of the dead aliens and cradles it in his arms, tears streaming down his criminally boyish face. "I could have saved them," he whispers, gently rocking back and forth with the alien corpse in his lap. "We could have been...friends."
Fade to black.
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March 19, 2004
New Wheels
I forgot to mention that my new wheelchair was finally approved by Medical Assistance, after only a year of waiting. I even got to pick out the color: Midnight Blue. I'm gonna be one stylin' gimp in my bitchin' new ride. I actually met one guy at a work function who had tricked out his wheelchair with neon running lights and speakers on the back of the seat. He must have spent hundreds of dollars on customizations. It was like something out of The Fast and the Furious. You think you could make a movie about a bunch of badasses in souped-up wheelchairs, going around and robbing banks and blowing up cars that are illegally parked in disability spots? Maybe throw in a couple really hot sex scenes involving a Hoyer lift? Would it sell tickets or is it more of a direct-to-video concept?
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March 18, 2004
Careless Whispers
MIT did an interesting study on blogging. Here are some of the findings:
- the great majority of bloggers identify themselves on their sites: 55% of respondents provide their real names on their blogs; another 20% provide some variant of the real name (first name only, first name and initial of surname, a pseudonym friends would know, etc.)
- 76% of bloggers do not limit access (i.e. readership) to their entries in any way
- 36% of respondents have gotten in trouble because of things they have written on their blogs
I find the last statistic particularly interesting. 36% seems awfully high to me. Are people really that thoughtless about the things they write in a public blog? Over the year and a half I've been doing this, I've developed some rules of thumb for my own blogging. I keep names of friends and family anonymous. I don't write extensively about work. I re-read everything before hitting the PUBLISH button to make sure nothing is overly harsh or revealing. No, the only person that will be portrayed as a jerk in this blog is me.
Did anyone see the Courtney Love interview on Letterman last night? I liked the last Hole album, but I was about ready to reach through the television and slap her across the face. What a strung-out, narcissistic has-been. And what happened to her voice? It sounded like bald tires screeching over gravel.
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March 17, 2004
Spoken Word
If any of you are in the NY area on March 25th, clear your calendars and check this out:
Reading of
VOICES FROM THE EDGE
Narratives About the Americans With Disabilities Act
Thurs. March 25, 6:30-8:00pm The Baisley Powell Elebash Recital Hall at the The CUNY Graduate Center
365 Fifth Ave (34th St. & Fifth Ave.)
Featuring John Hockenberry, Leonard Kriegel, Stephen Kuusisto, and more.
It sounds like a great event and a fascinating book. If you want to learn more about the book and the event, go here. I really do hope lots of people with disabilities turn out for this event. As a community, I think we are sometimes guilty of not recognizing the writers and thinkers with disabilities who are contributing so much to our nation's intellectual life. So go and get enriched and stuff.
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March 16, 2004
Price Gouging
My plane tickets arrived in the mail today. It made my trip suddenly feel a bit more real. But goddamn, why is it so expensive to rent an accessible van? A hundred bucks a day! For that much, it better come with a DVD player and a frickin' jacuzzi in the back. By the way, what's the deal with watching porn in the car? As if people weren't distracted enough while driving by cellphones, eating, doing their makeup, etc. Now I have to watch out for the sexually frustrated middle-aged guy in his fully-accessorized Hummer who can't watch his Asia Carrera movies at home because his wife might find them.
Ugh. What do I do at work all day? Write on the computer. What do I do when I get home? Write some more. Excuse me while I restore feeling to my wrist.
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March 15, 2004
Worlds Apart
I think I've written before about Nick Dupree and his efforts to change Alabama's Medicaid home care regulations, which, until very recently, denied home care services to anyone over age 21. This message from Nick was sitting in my inbox when I got to work this morning:
Another tragedy has struck in Mobile due to Alabama Medicaid's 21 cut-off policy. And it's pretty close to home.
My family has known Chris Wiggins since we moved to Mobile, Alabama in 1983, I was 1 years old then. Chris had Duchenne's Muscular Dystrophy. His mom and my mom started a sort of two-person parent support group. Around 1999 I think, Chris turned 21, and of course lost his care. Alabama provides nursing care through EPSDT, they are mandated to. But after age 21, people are no longer eligible for EPSDT, and Alabama does not provide any sort of full-time care through other programs (except for the handful like me on the new, inappropriate, insanely over-medicalized AT waiver, or people with MR allowed on the MR/DD waiver.) Chris' parents were trying to do his care 24/7, alone. They had not fully slept in 4 years or something. Chris wrote up something about his problem and I put it on my Crusade web site. In his message, he wrote of his fear that unless he could get some sort of care back, his ventilator tube could come disconnected and no one would be there or wake up to hear his ventilator alarms in time to save his life. As you know I've been warning about the dangers of providing no support to people after age 21 for years.
March 4, Chris' ventilator tube came off, and no one woke up. Once found, Chris was taken to the hospital, where he was in a coma and brain dead from the prolonged lack of air to the brain. Tuesday night, March 9, Chris died.
He was 26.
There's not much I can add to this. I've always joked with my nurses that I'd die a "stupid" death. Something like my ventilator getting accidentally turned off and no one noticing. It's hard to joke about that now. This was a stupid death in every sense of the word. It's a stupid, meaningless, preventable death where nobody and everybody is to blame.
When it comes to issues like home care and community integration, Minnesota and Alabama aren't just on separate planets. They're fucking galaxies apart.
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March 14, 2004
Taking Stock
I should start going through my packing list for Miami. As you can probably guess, I have to pack more stuff than the average person when I go on vacation. Mostly backup equipment and the like. My supply company will ship some of the stuff I need, so that will help. I've done this enough times to know what I need and to make sure it's organized. I get deeply paranoid that I will forget something critical. That's why I have a list. I made it for my trip to Denver in 2000 and it hasn't left my hard drive since then. I'm something of a digital pack rat. You should see my old e-mail file. I've probably stored up to 2000 messages since 1997.
From The Onion:
Those CP'ers are a bunch of poseurs when it comes to evil. The SMA Cabal will have to put them in their place.
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March 13, 2004
Whoa Nellie!
So is blogging the liberal equivalent of talk radio? This guy seems to think so. It's an interesting meme, but blogs have a long way to go before they reach the ubiquity of talk radio.
I'm currently grooving on Nellie McKay. A friend of mine described her as a cross between Eminem and Sarah Vaughn, which is pretty apt. I hope she gets more exposure. I mean, hell, she raps about Paul Wellstone. You don't see that in a Clay Aiken song.
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March 12, 2004
Brush With Fame
Some guy who got beat up in high school one time too many has started a website called technosexual.org. Here's the definition of a technosexual, lifted from the site:
He is a man of style and tech sophistication: he may be seen at an NBA game one night, then an art gallery opening the next; all navigating through life with the empowerment of technology. From PDA's to mobile phones. A wireless environment. He is the new male ideal: the technosexualŽ man.
Jebus, do you believe that shit? I guess the old labels of 'geek' and 'nerd' were too oppressive for him. They didn't carry that air of savoir faire that "technosexual" has. *snicker* And here's the kicker. This asshole co-opted the word from another niche group who share the desire to get busy with all things robotic and mechanical. At least the original meaning is a bit more sincere than this PR-ready nonsense cooked up by a guy who needs to be slapped with his copy of Details magazine.
I think of myself as a geek. I'm proud I'm a geek. Geeks are cool. And yes, geeks are sexy.
I had my own little Gawker moment today. Kind of. I was running some errands in the skyway when we passed a tall guy accompanied by a very pretty woman. A minute or so later, this conversation ensues:
NURSE You know who that was?
ME: No.
NURSE: Kobe Bryant.
ME: Shut up.
NURSE: No, really. It was.
And I think he was right. After all, the Lakers are in town tonight. To be honest, I was looking at her more than him.
Posted by wintermute2_0 at 07:27 PM | Comments (2) | TrackBack
March 11, 2004
Over There
I'll be curious to see how much attention Americans will give to the bombings that killed so many in Madrid today. Americans are kind of pre-Copernican in their worldview; we assume that the rest of the world revolves around us and whatever happens here. And then we shrug our shoulders and change the channel whenever there is a human tragedy somewhere beyond our shores. Maybe it's some weird interplay of geography and psychology. Being bounded by two oceans probably encourages our isolationist streak. I thought 9/11 would force Americans to become more engaged with the world, but that hasn't happened. If anything, it seems that we've turned even more inward.
One of my work-related perks allowed me to purchase a copy of Office 2003 for only twenty bucks. I installed it earlier tonight and I've been messing around with it. I like the new Outlook and the little pop-up that appears when new mail arrives. And Word has a nice look to it; I've been using Word 2000 the last few years and it always felt kind of klunky to me. I'm not sure if all this new software will make me more productive, but it sure looks purty.
Posted by wintermute2_0 at 09:30 PM | Comments (0) | TrackBack
March 10, 2004
The Sound Of My Own Voice
My speech at the Minnesota Justice event was okay. Not the best one I've given, but people seemed to like it. Afterwards, I went out with some my friend and some of her colleagues to a local bar. I was the only man sitting at a table of six or seven women. It was one of those circumstances where it was easier (and more interesting) to simply listen to their threads of conversation. I tend to get quiet in large social gatherings. It's mostly a matter of having a soft voice and not wanting to even try to shout to be heard, cuz it ain't gonna happen. This probably gives people the mistaken impression that I'm some kind of wallflower. I need to invent a portable amplifier so that I can go to parties and completely dominate conversations with a whisper.
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March 09, 2004
The Naked Truth
I went to see my doctor today because I've been having a weird little pain in my left side. Nothing serious, but I wanted to get it checked before I left for Miami. They didn't find anything, which I guess is good. But in the course of my checkup, various nurses and doctors and other assorted professionals had me in various states of undress. Now, I'm not a shy person. Years of being cared for by nurses and PCAs have kicked a lot of the modesty right out of me. When I stop to think about it, hundreds of people have probably seen me naked. Many of them are probably still in therapy, recovering from the trauma. If I were an exhibitionist, I'd probably be filled with a great sense of accomplishment. However, I sometimes wish I had a bit more privacy in my daily life. Everything about me is always on display. Not just my body, but my work, my interactions with friends, my compulsions, etc. I suppose it's the price I pay to live my life, but I still crave those fleeting moments that belong only to me.
I have to give a brief speech at the U of M Law School tomorrow. It's a recognition ceremony for students who have completed so many hours of public interest work. I never prepare for these things, so I'll probably wing it and hope I sound like I'm making sense.
Posted by wintermute2_0 at 08:07 PM | Comments (1) | TrackBack
March 08, 2004
Guide Bot
Gizmodo points us to this article about a British high school student who built a seeing-eye robot for an incoming student who is blind. Damn, nobody built me a new wheelchair when I started the 9th grade. Ach, don't even get me started on high school. Those four years don't rank very high on my list of All-Time Greatest Memories. I was a complete social moron and a hopeless geek. Er, well, I guess I'm still a geek, but with a much higher social IQ. I like to think of myself as the Rico Suave of geeks.
I would totally make a move on any girl I saw wearing this. Just thought I'd mention that.
Posted by wintermute2_0 at 09:31 PM | Comments (0) | TrackBack
March 07, 2004
Ba Da Boom Ba Da Bing
Tonight is the premiere of the new Sopranos season. I do enjoy the show, although I was a little disappointed with the unevenness of last season. I'm looking forward to seeing how Steve Buscemi is integrated into the plot--that's Steve Buscemi of the wood chipper in Fargo and of Mr. Pink in Reservoir Dogs. I think he's a great actor who most people only know as "That Guy." You know, That Guy in That Show. My only hope for this season is that they find a way to off Tony's son. That whiny little punk annoys me.
I may have found a guest blogger to sub for me while I'm in Miami. More details soon.
Posted by wintermute2_0 at 05:13 PM | Comments (1) | TrackBack
March 06, 2004
Estoy Aqui
I was watching some music channel earlier tonight (no, not MTV) and they were showing music videos featuring Spanish-speaking artists. I now have just enough knowledge of Latin pop music to possibly impress a cute Latina while in Miami, should the occasion arise. "Oh, Kinky? Sure, they're okay, but I really dig Cafe Tacuba." You know, I really should have taken Spanish instead of five years of French. I keep waiting for the chance to use it during the a chance encounter with a beautiful Parisian, or even a French Canadian. But even if that did happen, I don't think I remember much more than "Je m'appelle Mark" and "Zut alors!" and "Ou est la bibliotheque?" Not exactly the kind of stuff that makes women swoon. And I don't think I've ever made a woman swoon using English, either.
Posted by wintermute2_0 at 11:34 PM | Comments (0) | TrackBack
March 05, 2004
Violent Tendencies
Ohboyohnboy. My new Radeon card arrived. Now to install it and indulge in some long-overdue shoot-'em-up goodness. But before I go, check this article about Ralph Nader and his...supporters. It's official. The man is a crank.
Posted by wintermute2_0 at 06:55 PM | Comments (5) | TrackBack
March 04, 2004
Point Counterpoint
One reader took issue with my criticism of the state of community integration in Europe, pointing out that Stephen Hawking isn't in a nursing home. He's also Stephen Hawking, an important distinction. His experience is most likely not representative of all Europeans with disabilities, maybe not even all Brits. And I'm not saying that America is all that and a bag of chips when it comes to inclusion, because it's not. But on the whole, the States are physically and programatically accessible to a greater degree than most of Europe. Emphasis on most. The UK is getting better, from what I hear.
I had a meeting at the office of my former employer, PACER Center. It was good to reconnect with all the people I know there. I love doing policy work, but sometimes I miss being in the trenches doing direct service. When I was at PACER, I did a lot of hands-on work with teens with disabilities and their families. I'm actually incorporating some of those experiences into the narrative thread of my book.
Posted by wintermute2_0 at 08:57 PM | Comments (0) | TrackBack
March 03, 2004
In America
Last night at the caucus, I'm sitting near a young woman who was acting as the caucus secretary. After the caucus, she asks me (and my nurse) to have a drink with her. Okay, I say. When we get to the bar and sit down, one of the first things she said was:
"I hate this fucking country."
She then lists, in detail, the many reasons the good ol' U.S. of A. has earned her spite. Our president. Our prudishness. Our crass culture. I nod my head in agreement with many of these things. She then goes on to tell me about all the time she has spent in Europe. About how Europeans are enlightened and critical thinkers. About how she never felt homesick in Europe. About how she dreams of moving there permanently.
I mention that I have a German mother and I was born in Germany.
Her face lights up like Vegas. "Then you have EU citizenship! What in the hell are you doing here?!"
Um, because if I lived in Germany or most other parts of Europe, my crippled ass would be wasting away in a nursing home.
Of course, I'm polite and I don't say that. And I don't tell this story to disparage anyone. But her negativity really reminded me of something; I'm glad I live in the States. I have uncles in Germany and they can't believe someone like me owns his own home and holds a job. They tell my mom that would never happen in Germany. In terms of accessibility and community integration, Europe lags behind the States by a good decade. And so while I may passionately disagree with most of the policies of the present administration, I'm obliged to recognize that living in America has presented me and my peers with opportunities that we never would have had elsewhere. Things certainly aren't perfect here, but I wouldn't be doing policy work if I didn't believe that if there is one constant in America, it's our capacity for change.
Posted by wintermute2_0 at 08:04 PM | Comments (6) | TrackBack
March 02, 2004
One Man, One Vote
I just got home from the Minnesota caucuses and I'm fucking exhausted. It was interesting. I got elected to be a delegate to the county convention, so my Boston scheme is still on track. Not that there was a lot of competition for the spots anyway. But it's a start.
Anyway, my hands are still freezing from the walk home, so me and the whole typing thing aren't getting along too well right now. More tomorrow.
Posted by wintermute2_0 at 11:29 PM | Comments (0) | TrackBack
March 01, 2004
Housekeeping
The Dossier has been slightly updated. Tell your friends.
Posted by wintermute2_0 at 08:49 PM | Comments (0) | TrackBack
Bad Manners
Kucinich apparently isn't the only presidential candidate who could use some training in disability etiquette. Here's an article describing how John Edwards allegedly patted some people using wheelchairs on the head. Thanks to morvern for the heads-up. I should start a consulting business for political candidates, running them through the do's and don'ts of interacting with people with disabilities. I wonder how much I could charge before people accused me of being exorbitant. I've actually considered getting into the consulting game at some point. You'd be surprised at the number of businesses that still don't have a clue about how to deal with disabilities, either from an employment or customer perspective. It's definitely better than it was a decade ago; most of the big corporations have the basics down. It's the mid-sized and small businesses that could use more attention.
And here are two of my favorite people on the Net: Susannah Breslin and Warren Ellis.
Posted by wintermute2_0 at 08:23 PM | Comments (1) | TrackBack