It all seemed perfect

I don't have much breakup music on my computer. I have a hard time believing this: 8.6 GB of music and not one breakup song? But it seems to be true.

When I dropped out of college I was convinced that I had reached a nadir of personal failure. I- the perfectionist academic overachiever- was crushed. I curled up on the cold tile of the bathroom floor and cried myself into a headache, sure that I could never hate myself more than I did at that moment, sure that the 'me' I wanted to be was forever dead.

Life continually amazes me, the way the most solid of things crumble through my fingers. It seems absurd that I could look back over the past six years of my life and see only mistakes, ill luck, foolishness and disaster. I mean, really- who is this bad at life?

Me, I guess.

So I'm breaking up. We are breaking up, technically, except I don't even know what state he's in at the moment, and there's no pressing reason to call him, so the 'we' at this point is purely theoretical. Here I am: 23 years old, broken, sick and as much a failure at marriage as everything else.

I guess I like melodrama more than is strictly dignified; its odd how I'm so tired of the whole situation that the thought of changing my name again- signing paperwork, waiting in line at the DMV, spending hours on hold with the VA and Social Security- is more distressing than anything else. A little melodrama would be refreshing. If there were only small breakable objects I could hurl at the wall, obscenities to scream so loudly the neighbors could hear, sickening amounts of alcohol to drink and then vomit in the humid garden next to the rhododendrons.

I wish I could believe in the rage, the drama, the anger at him and the world, but it seems too thin next to the cold stone of reality. See, angry as I am, this is my fault. I am the one who flinches in pain at the lightest touch, I'm the one who wasn't brave enough, or wise enough, or patient enough, or honest enough.

And I start to wonder if that's just the way things are going to be. Maybe life is never easy. Maybe, as cynical, tired and pain-ridden as I am, I should just stop expecting things to be different. Things fall apart; the center cannot hold; and why am I surprised?

to see in all directions at the same time

I know I talk about this a lot, but seriously, as a veteran in this country, you just can't win.

I've mentioned before how I'm not eligible for the GI Bill because I had the lack of foresight to get hurt too soon into my enlistment, and I'm not eligible for Vocational Rehabilitation's help with education expenses because I'm too injured to be a productive member of society worth investing in, and now, today, I learned that I am also not eligible for a waiver for residency requirements in the state I grew up in. I was away for too long after I enlisted, and they only take pity on veterans of the Korean War, not any conflict more recent.

Korean War vets are all what, 70 years old or so now? Totally the people who habitually enroll at a community college.

And now the news is full of how smart McCain is to say that the US needs to threaten and/or attack Russia because the president of Georgia is a moron and started a war. OK, maybe that's not the best analysis of the situation (ObWi has much better). But still. The longer I identify as a veteran, the more I think that this disconnect between the realities of military experience and the ideals that run our foreign policy is the sickness that will bring down the American empire. That anyone who refuses to admit our military's limitations isn't laughed off the national stage- that this is instead seen as proof that he is a foreign policy heavyweight- astounds me.

Sometimes I wonder if it might not be better for our country to experience disaster and defeat. Not that I want tragedy, not the human cost of it. But we have been so successful in recent history (Iraq notwithstanding) that too large a number of our political philosophers no longer have any basis in reality, and that is incredibly dangerous, not only for us, but for the rest of the world.

And this urge to pretend that our military is always strong and gleaming and made up of invincible cartoon commandos, really sucks for veterans. I am so so sick of this constant battle for benefits.

A Gorilla on the Road

There was this post for BADD, by Mary at This Is My Blog, comparing having a disability with having a gorilla living in your house with you. I find it a very apt description of the process of "taming" your illnesses and injuries until you're able to cope with them in a practical way. Anyone interested in a vivid illustration of what it means to cope with a disability should read that post.

I think in the past year I've come along way in managing my life. It's helped that I haven't been putting pressure on myself to go out and get a regular job and fit into a regular life; in some ways getting the Voc Rehab people to admit that I'm not rehabable has improved the quality of my day-to-day life. I've been able to allow myself to slow down and take all the time I need to get places and do things, but more importantly, I've changed the things I try to do.

And now it's summertime, the time I feel the best, and I'm contemplating taking my new openness to life onto the next level. I've written here before about my desire to travel, and about my poverty due to the VA's denial of the reality of my condition, and now these two things have come together fortuitously. My husband and I will soon be out a place to live due to various factors, and my tentative plan is to start a grand journey, camping out of my car and exploring the world a little bit at a time. My gorilla and I are going on the road.

First stop will be my parents' house outside of Seattle, possibly for several weeks, and then I hope to head south. The trip from here to Washington will take me several days; its my trial run to make sure that I can actually handle sleeping in the back of my VW and driving around strange places without getting too stressed out. Maybe the trial run will fail and I'll be stuck living in my parents' attic or something, but I have high hopes, and faith in my hard-won coping skills.

I also hope that this may help my husband. Quite frankly, while I have made friends with the gorilla in our house, he hasn't. It would have never occurred to me, before, that the person with a seriously life-altering physical event could adapt to the changes in their life better than someone who just has to sit and watch the person affected. But a gorilla in the house fixated on your housemate is still a gorilla in your house, I guess, and he's had a hard time. I hope that giving him some time where I'm not sitting around being sick at him may help him out.

I realize that all my high hopes may be a little foolish, brought on by sunny days and a desire to choose to be optimistic, but even if things go horribly wrong, I'll still have a nice visit with my family and some neat photos to share when I get onto a computer again. My sister's cat had kittens like two days ago, so when I get there they'll be a week and a half-ish old. Honestly, I'm about as excited to see those kittens as I am to see the rest of my family, how sad is that?

With all the poise of a cannonball

I have been reading a book of short stories by James Tiptree, Jr., aka Alice Bradley Sheldon, science fiction author and gender-bender extraordinaire, Her Smoke Rose Up Forever. Tiptree included gendered themes in most of her stories, and its got me thinking about this idea that women are innately less violent than men.

Also, it was just memorial day last Monday, and I have been watching the first couple seasons of Battle Star Galactica, which has introduced me to the indomitable Kara Thrace. I'm not sure I will be able to finish watching BSG, I'm that in love with Thrace, and the President, and all the other women in that show who love to fight. Seeing such a positive portrayal of war, and particularly female soldiers, just about breaks my heart with the desire to be a soldier.

Its crazy, I am aware of that. I hated the Army when I was enlisted, I hated being ordered about by incompetent people half as smart as I was, and even if I was completely physically fit there are a dozen other reasons why I could never join the military again, starting with my disgust for the war criminals at the top of the chain of command and working out from there. Nevertheless, there is this tug on my heart that is hard to explain. I want to fight.

The human urge to destroy is discouraged in women, we are supposed to be nurturers and care-givers and all that, but I don't believe that this is a biological fact. Were the social pressures reversed, I am convinced that women could be-and are- just as vicious and destructive and violent as men are supposed to be. No one human is immune from the desire to kill.

So, as compelling and interesting as Tiptree's stories are, the Memorial Day piece (or piece that I read on Memorial Day anyway) that made the biggest impression on me was this article from 2 Dinar, The Casualties of War:

In reality, I was, and remain, wracked with guilt and insecurity- different than survivor’s guilt and far less noble. This is the guilt of leaving to pursue another career when the Corps needed strong leaders like me. The guilt of not having gone all-in when gambling with my life; of not having been catastrophically injured. The guilt of not having killed and the guilt of not living with the timeless veteran’s regrets about his killings. The guilt of being indifferent to the hundreds of opportunities available to me because they all bored me and all I wanted to do was fight.

War is a powerful thing, sweet and compelling. I'm not sure why- I have a dozen theories, about population pressures and sin, ecological change that spurs migration and religious stereotyping- but the fact remains. In spite of everything I know about how life ought to be, sometimes what I really want is a situation where I can get away with starting a fight.

I am the stuff of happy endings

Arches National Park, Utah

Goblin Valley State Park, Utah

Quite a few years ago, my family and I visited Moab, Utah. Possibly more than once, for probably more than a week- I don't remember exactly. I've been thinking, though, that it would be neat to go there again. The past couple of weeks we've been packing up stuff in this house so that we can have a giant garage sale, clearing things out so the house can be sold. Grandma is finally accepting that she needs to live in assisted living care, so the house is going to pay for that, which means Michael and I are out a place to live.

Things are kind of dissolving into chaos at the moment, but I'm oddly OK with it. Its occurred to me that not actually having a place to live might be just the excuse I need to take the roadtrip of all roadtrips. Not that gas prices this summer are conducive to roadtripping, but the idea of just taking off and seeing where I end up is incredibly enticing. And if I were to do this, I would go to Utah first I think. I could sleep in the back of my car, and spend days slowly creeping about these gorgeous canyons, maybe bring a sketchbook and work on pretending I'm an artist.

The practical, responsible me thinks that this is a very bad idea for any number of reasons, but on the other hand, it's not like I have a job or anything holding me to a specific place. I am interested in seeing the world, and although I am sick and poor these days, I don't have any particular reason to think that I will be less sick or poor five years from now, so if I'm going to travel anytime, why not now?

I have this daydream. One day, when no one else is around, I stuff some clothes in a bag, grab CDs and toiletries and some empty notebooks, and just take off. Get in the car without a map and just drive south until I hit desert. Mexico maybe, someplace hot and dry and empty, where I can clear my head.

I feel like I'm swamped in stories that other people tell. My head is full of other people's words, other people's feelings, and I daydream about just leaving all this behind and setting off to try to find out what would be in my head if I didn't have my books and tv shows and blogs filling me up with the things other people think about.

Its not practical, I know that. I'm ill and broke, and living alone drives me completely around the bend. Living alone out of a car in a foreign country is a really bad idea. But I still find myself mentally assembling packing lists and contemplating brushing up on my Spanish. I'm starting some plants for a garden this summer, and when I was at the garden store a couple weekends ago, I contemplated getting some cacti for an indoor pot, but decided I couldn't. The more I contemplate being somewhere else, the more I feel trapped. I don't know what it is about the desert that makes me think its calling me, but something has to change or my heart is going to burst.

Pacifism and Genocide

My sister and I have both been reading War is a Force that Gives Us Meaning, by Chris Hedges. I'm not done with it yet, and I'm not usually ready to write about a book before I've finished it, but I thought I would post this here, basically because I would put it on Facebook for my sister, but I talk way too much for that to be practical. Here's what my sister said that got me thinking about this:

S., Mom, and I actually had a little debate/discussion about war and pacifism the other night. S. is a straight up pacifist, because he doesn't think Jesus would ever have killed someone. Idealistically I would be a pacifist, but the world's not that perfect, you know? Sometimes you have to intervene, or choose a lesser evil, so to speak. In the book, and in some of my econ stuff this quarter, it talked about all the times peacekeeping troops could have intervened and didn't, and how they could have saved lives and all.

My view on the morality of war has changed a bit since I joined the Army. I used to think that fighting a war after another country attacks your country is fine; wars of aggression are generally immoral, but the one exception would be when you start a war in order to prevent a greater atrocity, for example if a country had intervened in early Nazi Germany, or Rwanda.

From a utilitarian moral viewpoint (which, while we might disagree on its applicability to ‘victimless’ crimes, I think is uncontroversial here), in a situation where war might break out, one ought to act in a way that will minimize human suffering. Generally this means doing what you can to see that a war isn’t begun, but if you know that the alternative to war will produce more suffering than the war would, then you ought to choose war as the most moral thing to do.

In theory I still agree with this view. War is a horrible thing, but it’s not the only horrible thing. However, one of the lessons I’ve learned from the fiasco in Iraq is that, as an outsider looking into a foreign situation, I know a great deal less about what’s going on than I think I do. A situation might look like the beginnings of a genocide, or like a mad dictator loose with nuclear weapons, or like the end of the world in fire, and then turn out to be something completely different. Even as an insider in a volatile situation, I don’t think it’s possible to have the kind of complete information that the utilitarian choice for war requires. No one can tell the future, or read the minds of the other people involved. Theoretically, I could see a situation where choosing to start a war, or intervene militarily in a conflict, would be the moral choice, but practically it’s wiser to just not start wars.

A good metaphor would be my view on capital punishment. I have no problem in theory with executing a murderer. I think there are crimes for which the only truly just punishment is death. However, I don’t have faith that our judicial system is able to determine guilt or innocence with perfect accuracy, so I think it’s wiser to only impose punishments that are more or less reversible. It’s a problem of information.

That doesn’t mean accepting no action at all in the face of genocide, though. If you take Rwanda as an example, one of the major factors that led to the genocide was the radio stations that broadcast racist programs urging people to kill their neighbors. The United States could have exerted political and economic pressure to shut down those radio stations, and replaced them with different programs. There are often political and economic steps that can be taken to improve a situation.

In Iraq, over the past couple of years, there has been a slow ethnic cleansing in some areas, so that neighborhoods that used to be mixed Sunni-Shi’a are now only Sunni or only Shi’a. The US military presence hasn’t been able to stop this. From what I know (although again, as an outsider looking in my knowledge is incomplete) it would probably be more effective if the US withdrew our military forces while at the same time offering refuge to anyone who would be the victim of ethnic cleansing or genocide. So if you’re wanting to prevent genocide, which is a good goal, military intervention may not even be the most effective way to do that.

I guess what I would advocate is practical pacifism, through the adoption of a different paradigm for international intervention. Here in the US, we tend to think of our options as either a) do nothing and pretend that everything is fine, or b) storm in with guns blazing. We see our role in the international community as that of a police officer. I think what we ought to do is acknowledge our inability to be effective police officers, and instead take on the role of the battered women's shelter: we can't arrest the abusers and put them in prison, we can't put them up against a wall and shoot them for their crimes, but we can shelter their victims and do our best to mitigate the damage that has been done. This is a lot more complicated, and time-consuming, and requires a greater commitment to long-term, practical action that isn't flashy and doesn't get the adrenaline pumping, but I think it's more moral.

In my dreams I've found this place

About a week and a half ago I went to the emergency room with blinding abdominal pain accompanied by frequent vomiting and that intense feeling you get of things being not right. Turns out I had kidney stones and an infection to go with them. At the ER, I got a prescription for Vicodin, among other things, to deal with the pain, but I didn't get it filled right after being discharged because I've tried Vicodin before for my fibromyalgia pain and it does nothing whatsoever to alleviate the pain, but it does make me vomit, and I was doing enough of that already.

After I was discharged from the ER, though, the pain got bad again quickly and I eventually sent my husband to the pharmacy to pick up my Vicodin prescription. I took it, and it dramatically reduced the amount of pain I was feeling from the kidney stones. However, at the same time I was in pain from my fibromyalgia because I'd been laying down for over twenty-four hours at that point, with breaks only to go to the bathroom or vomit. My shoulders and back were compressed from being immobile and the pain grew to the point where it was about 3/4s as bad as the kidney stone pain was without any medication at all. Once I took the Vicodin, the kidney stone pain was reduced by 85% or more, but the fibromyalgia pain was not affected at all, just like usual. I only had one episode of vomiting that I think was due to the medications, too; despite the lack of relief of my fibromyalgia pain, I was pretty pleased with this outcome.

I assume doctors are aware of this difference in medication efficacy between pains; thinking on it, they must be, or why would they develop drugs like Lyrica specifically for nerve pain? I haven't heard a doctor articulate this difference before, though, and you'd think that, as a patient with a chronic pain condition, I would have a fair chance of hearing it if they were in the habit of talking about it. It makes me curious, though, if whether in my lifetime I will see the development of pain treatments that acknowledge all the different kinds of pain. I have this theory that the way our bodies sense pain is much more complicated than medical science currently acknowledges. My experience with kidney stones suggests that if you view opiates like Vicodin as acting primarily to block pain receptors in the brain so that pain signals don't get through (which I believe is more or less accurate), there has to be more than one set of pain receptors, or more than one way in which those receptors accept information, and perhaps whole different systems built for sensing different kinds of pain.

In Pain: the Science of Suffering, by Patrick Wall, Dr. Wall describes the traditional medical model for pain as something like a contraption where at one end you knock a ball with a hammer to start it rolling on its path and then at the other end once the ball gets there it rings a bell: injury equals nervous system reaction equals pain. This traditional model is clearly sadly lacking, and often cruelly misleading, and I'm interested to see what medical science is going to discover to put in it's place.

War:

You can’t end it by disarmament conferences. You can’t eliminate it by peace parleys at Geneva. Well-meaning but impractical groups can’t wipe it out by resolutions. It can be smashed effectively only by taking the profit out of war. The only way to smash this racket is to conscript capital and industry and labor before the nations manhood can be conscripted. One month before the Government can conscript the young men of the nation—it must conscript capital and industry and labor. Let the officers and the directors and the high-powered executives of our armament factories and our munitions makers and our shipbuilders and our airplane builders and the manufacturers of all the other things that provide profit in war time as well as the bankers and the speculators, be conscripted—to get $30 a month, the same wage as the lads in the trenches get.

Let the workers in these plants get the same wages—all the workers, all presidents, all executives, all directors, all managers, all bankers—yes, and all generals and all admirals and all officers and all politicians and all government office holders—everyone in the nation be restricted to a total monthly income not to exceed that paid to the soldier in the trenches!

Let all these kings and tycoons and masters of business and all those workers in industry and all our senators and governors and majors pay half of their monthly $30 wage to their families and pay war risk insurance and buy Liberty Bonds.

Why shouldn’t they?

They aren’t running any risk of being killed or of having their bodies mangled or their minds shattered.

They aren’t sleeping in muddy trenches. They aren’t hungry. The soldiers are!

Give capital and industry and labor thirty days to think it over and you will find, by that time, there will be no war. That will smash the war racket—that and nothing else.

- "War is a Racket", Major General Smedley Butler, 1935

Social Safety Nets in Action

Gary Farber is just some guy. I don't really know him; he has a blog, but I don't read it, and he comments on Obsidian Wings, which I read, and maybe a few other places but I've never really talked to him. He has health problems that keep him from working, that have kept him from working much for years and years; because he's been ill for so long, he doesn't have enough credits in the Social Security system, and so he is not eligible for Social Security Disability. He's applying for SSI, which he's been denied and is appealing, but even if he does get approved for that, the maximum amount he's eligible for is $623/month. It's been a year since he applied, and best case scenario is it'll be another year before he knows if he's eligible or not for any aid.

In political circles, people talk about welfare like it's easy to get on, and once you get on you're set because the government pays for everything you need. In reality, if you're poor and ill in America, the government would really rather you just lay down and died. I am not sure if its really true that society has some sort of obligation to the weak and ill and poor. If there is no obligation to help your neighbor, what's the point of society? But I'm hesitant to say there is an obligation, that anyone is owed anything. Prescriptions for the behavior of others are always dangerous.

However, even if it isn't necessarily morally wrong not to help those who genuinely need it, it would still be neat if we could figure out a way to structure society so that the ill, the disabled, and the needy were treated with dignity and respect, and were provided for when they can't provide for themselves. The only other options are what Gary is facing: eviction, hunger, medical needs going unmet, homeless in the winter in Colorado, death by freezing under a bridge somewhere. Maybe there is no moral obligation for society as a whole to help the people who face these things, but it would sure be nice.

And it's not like anyone reads this thing, but still, Gary has a set up for donations and subscriptions to his blog so that maybe he can keep living indoors.

Also on the social justice front, a Lt. in the US Army, Elizabeth Whiteside, is being court-martialed for attempting suicide while in Iraq. Its a complicated story- what suicide attempt isn't- but the bare details are these: she was in charge of a trauma team in Iraq, working nonstop in the middle of the results of war; she became more and more depressed about the situation, which included a senior male officer who harassed his female coworkers and subordinates; she regularly received very high marks on performance evaluations and was loved by the team she led in Iraq; she had a dissociative panic-attack-type episode and shot herself in the abdomen, but hurt no one else; charges against her include "wrongful discharge of a firearm, communication of a threat and two attempts of intentional self-injury without intent to avoid service;" if convicted, she may be put in prison for life and will absolutely be ineligible for any kind of veteran's benefits, including physical and mental health services.

This unhealthy impulse to blame victims for their circumstances in order to deny them any help scares me. I don't want to live in a world that is so heartless and difficult, and I don't understand the people who work to make things this way. I mean, I get that if you have compassion for someone, that means empathy creeps in, which means you start to imagine what life would be like for you if you were in that situation, but I don't understand the depth of cowardice that refuses to face that fear and instead chooses to deny all possibility that disaster could befall Our Kind of People.

Liberty or Death

Via Balloon Juice, I saw this article about Robin Prosser, an activist for medical marijuana legalization in Montana. The article has all the details, but the short version is, Prosser had an 'immunosupressive' disorder that sounds to me like CFS with MCS. She was unable to use traditional pain medication because she was allergic, and the medications made her very ill (or, like my doctors say about me, "she was unable to tolerate the side effects"); marijuana was the only substance that improved her condition, so she used it. Since she was an activist, she was on the Feds' radar, and they caught her with half an ounce. The article doesn't say whether or not they were prosecuting, but they really didn't need to. When they took away her pain relief, Prosser killed herself.

I was hesitant to write about this, because obviously it's very upsetting. I look at this situation and it brings up a whole slew of issues that I struggle with. Chronic pain is absolutely devastating in so many ways, and it's compounded when the solutions that are supposed to make you better only make you worse. That situation would be bad enough, but then once you find something that gives you some relief, authority jumps in and crushes you again. I've read a few blog posts here and there, and the occasional commenter who laments giving up hope in the face of all the wonders of modern medicine makes me so angry and sorrowful I want to puke. It's hard to understand, if you're basically healthy, what it's like to live with a body that tortures you every second of every day, and to be unable to stop the pain.

Most people are able to live imagining that if they were ever a prisoner under torture, they would be able to hold up their head and say, "Do your worst, I defy you." I used to hold that illusion. I don't anymore; I know the truth, like Prosser knew it: there are things worse than death.

I'm reading Dead Certain, the biography of President Bush that came out a few months ago. I had forgotten that W. ran on a platform of "compassionate conservatism;" I think he may have forgotten it also, this many years later. As impossible and hopeless as it might be, compassionate government in any form, conservative or liberal, seems like a grand idea to me. Because the way the system is run these days, people in need get the message that it would be better for everyone if they were to go off and freeze to death under a bridge than to expect a helping hand from anyone. Politicians would rather appear to be protecting kids from drugs than allow someone living in hell on earth a minute of relief. Like Sullivan said, the government has come down to "protecting people from the alleviation of their own pain."

Colbert 2008

A couple nights ago, Stephen Colbert announced on the Colbert Report that he's running for President, as both a Democrat and a Republican, only in South Carolina. I know it's a joke, a gimmick, something they dreamed up on the show to more effectively mock the candidates and the process of campaigning. This knowledge makes me a bit sad. I would like to live in a world where Stephen Colbert could run for President of the United States and have a serious chance of winning. I would vote for him.

The news is all over the predictable places, basically anywhere on the Internet trafficked by young, disaffected Americans. I went and joined a Facebook group, to see if people were taking it seriously. A lot of the comments I've seen are along similar lines: sure, it's a joke, but we'll write him in on our ballets just because everyone else who's running is so awful. Or as one guy said, "He's the only candidate I even like. All the other candidates are boring or clinically insane, or patently evil."

I have to say, I kind of agree. Politics is so congested right now that even people who have worked on Capitol Hill their entire lives are trying to run as 'outsiders', like Fred Thompson, or, like Barack Obama, are discovering that it's impossible to run a campaign without sucking up to interest groups and sliming your opponents. The appeal Colbert has is the same kind of appeal that Ron Paul has: you get the feeling that he really hates the entire system, and would do his best to change as much as possible. Colbert has a major edge over Ron Paul, though, because while he is a comedian he's not a gold standard/9-11 truther/isolationist nutter. Plus, when you watch his show every night you get to feeling like you have an idea who he is, as a person, and you start to think like maybe even if you didn't agree with him on everything, you could trust him to make important decisions.

I'm not ready to commit to actually voting for him in the general elections, because since I live in a red state now my vote might actually be useful, but the idea is very appealing.

Treat me like the leaves

I've taken up the bad habit of using song lyrics as post titles. I used to do this on my old journal, sometimes I even made posts of nothing but lyrics to songs I was listening to. I go to write, and then I hear the words to the music in the background and all of a sudden I can't think of anything different than what I'm hearing. Music has always been about words for me anyway. I'm very strange like that.

Realized earlier today that when searching for pictures of crows on which to base my tattoo design, I had never searched for pictures of ravens. The two look rather alike, you would think that there would be a fair number of appropriate pictures. However, I found nothing new in the way of birds. I did find this picture, though, which I quite liked.

I'm not interested in a full shoulder tattoo, especially not one that goes up the neck and would be half hidden, half revealed with every single shirt I have. The tentative plan at this point is for the crow to go on my right shoulder. But I don't know. I probably won't even get it for quite a long time, both for monetary reasons and because tattoos should be thought about, anticipated before you actually get them. You should have an engagement period, so to speak.

So I don't want to get a tattoo like this one here. It's terribly pretty, though. I think the delicateness of the lines mean that it will hold up over time better than big blocky pictures do. There's less to smear, and even if it does get a bit less distinct it will still be wonderful art. It seems to suggest that I could consider something more elaborate than a freestanding bird in flight, something more detailed and nuanced than a black cutout figure. I don't know if elaborate is my style... but it's pretty.

In the course of browsing through disability themed blogs, and other blogs that are just written by people with disabilities, I've come across the term disablism (or ableism) quite frequently. The best explanation of the movement I have is this essay by a former "Jerry's Kid" poster child; the idea is that seeing people with disabilities as inherently unable to do things is foolish because if society approached the problem differently, for example spending money on accomodations instead of pure medical research, the lives of people with disabilities would be much better in the present, instead of in some possible future. Also part of this movement is the idea that many of the modern treatments of disability are marginalizing of persons with disabilities in a way akin to racism.

I've found myself having mixed reactions to this paradigm. On the one hand, I can see how it would be really important for someone who is essentially able to do many things with a little bit of help, but who is prevented because of an outward appearance of disability. If you could go to the theater and have a great time if only they would put in a lift to get you to the second floor, it must be maddeningly frustrating to have simple mechanical things thwart your plans. On the other hand, it scares me that someday there might be an atmosphere that expects everyone to be able to do everything in a 'disability friendly' building. I don't use a wheelchair, there would be no benefit from it, but that doesn't mean that I'm able to get around freely. My problems stem from pain and fatigue that are almost totally unpreventable. I can't imagine accomodations that could be put in place anywhere I'm interested in going that would make any difference at all.

So maybe this is selfish- certainly this is selfish- but I kind of think that a focus on mainstreaming disability would be harmful for me personally. If there is the expectation that disabled people can work if you just redesign the workplace, it would be even harder to explain that there are many days it takes me an hour to get out of bed, that doing anything at all on a consistent basis is liable to cause pain because it's the fact of repetition that gets me, that I function on the level of a dyslexic with ADD, insomnia, depression and narcolepsy most of the time, that there are all these things that can't be designed around that prevent me from working. I already have a hard time convincing people that I'm in physical distress; I don't look it; the expectation that I should be able to do 'mainstream' things no matter what disability I have would make my life infinitely harder.

It would be nice, though, if there wasn't a social stigma associated with being unable to work, or go out shopping or partying, or even being unable to keep one's house properly. If I can't convince myself that being unable to do these things isn't a moral failure, though, I don't see how there's any hope of convincing people who don't have to deal with this on a regular basis. Maybe if our society was completely changed, so that there was less importance placed on work and money as the measure of a person's value, so that individualism was less important and community was more important, so that there was an expectation that everyone at some point would need the help of the people around them so help should be freely asked for and freely given. Some of this reminds me of Echidne of the Snakes' posts on how modern feminism requires the involvement of men in the domestic realm, in that if this has any chance of working out, it requires that the current culture be torn down and started again from the beginning.

I'm realizing that most of my prescriptions for the problems I write about boil down to the same thing: burn it all down and start over.

I suspect that this may say something about me that isn't all that flattering.

Now we'll say it's in God's hands

I guess it's old news by now that President Bush vetoed the bill that would expand SCHIP to cover more children who currently don't have health insurance. I think almost every blog I regularly read mentioned it at least in passing; there's even a post on the ProHealth Fibromyalgia/CFS forum about it (registration required). I don't think anyone in the US would be willing to make the claim that our health care system is functional, and I wouldn't be surprised if health care was a major issue in the next election, maybe even as important as the War.

I have a hard time following the various proposals for change that have been put forward. I would like to be able to analyze the merits of Clinton's plan v. Edward's plan v. the Republican plan (do they even have one?), but every time I try to wade into the technicalities, I fall asleep after about the first paragraph. Technicalities are no longer my strong point.

However, there are a few basic ideas that I think I have a handle on. As far as theories about the appropriate government role in health care, I believe it comes down to the government either managing regulation of the industry to keep costs low or pouring money in to pay the industry for the care of poor people or some combination of the two. There are a lot of side issues, like research and development and the control of medication due to the War on Drugs, but the main issue is what government should do to make the system work.

I wish I knew the answer to this question. I guess a lot of people wish they knew the answer, because obviously no one does, or the ill would not be automatically destitute while insurance bureaucrats gorge on the last penny of the elderly and dying. I don't trust the government- I regard it with a visceral suspicion. Even if I thought it were possible for a government agency to run a really efficient and friendly and effective health care program, I wouldn't believe that's what would actually happen if the government took over the industry. But as someone who never expected to be disabled but who is almost entirely helpless now, I am even less eager to throw myself on the mercies of the market.

I can't see my way to unequivocally supporting SCHIP funding for families that make $60-80k a year. That kind of income seems like riches from where I'm sitting. I don't see how you could be poor, making that much money. And raising taxes on cigarettes seems like an especially cruel way to pay for it. If you're going to tax something that's socially unacceptable in order to make ends meet, at least be gracious enough not to tax something that's horribly addicting. Tax sugar, tax sitcoms, tax rich people's children, tax blond hair dye, whatever, don't tax something that people can't give up without medical intervention.

On the other hand, serious illness is catastrophically expensive, and all too often the expense hits right when you lose your job because you're too ill to work. Having insurance doesn't mean you're safe, and neither does Social Security. Serious illness is devastating all by itself, even without financial ruin, and it's not like the safety nets we currently have make your life easy. I regularly lurk on the ProHealth board, reading the stories of people who have fibromyalgia and aren't lucky enough to be veterans. The luckiest of people have spouses who can support them and houses to sell to pay their medical debts; the unlucky are young and alone, living in abject poverty for years in order to qualify for a measly couple of hundred dollars a month of welfare and a Medicare system that will deny them coverage for the treatments that help the most. It's heartbreaking. For all my libertarian tendencies, I believe that there should be a better system for these people. If society means anything, I think it must mean taking care of those who are unable to take care of themselves.

I guess my real opinion on the matter is that the whole system is broken, not just how we pay for medicine but how we do medicine. I would like to see a complete, from the ground up re-do of American medicine, that changes things from how strictly we control medicine to the whole concept of hospitals to how doctors are educated. In some ways, American medicine is great. Cancer treatment, for example, is one of the things that we usually do right. But so many things are wrong with it, and I don't have any expectation that changing payers will cure the deep structural problems.