(not so disposable anymore)

I bought a book (an actual book, without pictures or anything) waaaaay back in February when I was on a business trip, and last week I finally got around to finishing it. And there were two quotes that really stuck me from it that I’m relating to quite a bit right now. The first is this:

Beware! The mind of the believer stagnates. It fails to grow outward into an unlimited, infinite universe… Belief fixes a granular universe and causes that universe to persist. Nothing can be allowed to change because that way your non-moving universe vanishes. Bit it moves of itself when you do not move. It evolves beyond you and is no longer accessible to you.

The way this strikes me is something which I’ve got a long and rambling post in a rough form that will hopefully get ejected from my head and onto the blog soon.

And then there was this, which I’m relating right now to the current healthcare debate/legislative process:

Bureaucracy destroys initiative. There is little that bureaucrats hate more than innovation, especially innovation that produces better results than the old routines. Improvements always make those at the top of the heap look inept. Who enjoys appearing inept?

If you’re curious, the book was the fifth in the Dune series by Frank Herbert, which I reread for the first time since I was a teenager — man, did I not get that book back then. I’m still trying to figure it all out even now, as it’s stuffed with ideas about society and government and religion and addiction (drug and sex) and bioethics and race relations and more. Good, good stuff.

I have to say that I’m finding the supposed uproar about whether or not the new giant robot movie is racist somewhat amusing. I know it shouldn’t be, as I’m a humorless advocate for political correctness and whatnot all the time, but to see people like Devin Faraci at CHUD call Michael Bay out for his ebonic-speaking robots strikes me as somewhat ironic considering what he wrote about Tropic Thunder and how people reacted to both the word “retard” and Stiller’s portrayal in the movie, including this quote:

Words don’t hurt people. Intent hurts people.

I guess, depending on your point of view, sure, you can make that argument. But you then can’t turn around and call Michael Bay — who helped make Will Smith one of the biggest stars in the world, by the way — racist because of what’s in Transformers. Is it offensive? Maybe, I don’t know, I haven’t seen it yet. Is it more offensive than Michael Bay’s usual treatment of women or Ben Affleck or any non-mechanized actor in any of his movies ever? Somehow I doubt it.

But was it Bay’s intent for his robots to be racist? I’m going to guess that in that idiot/genius brain of his, if he gave it a second thought at all, he just thought it was funny in the same way that he thinks having a robot with giant testicles is funny or having John Turturro peed on by a transformer is funny or showing rats onscreen copulating is funny. Race probably didn’t even enter into it. I don’t know the dude, but judging from the ridonkulous spectacles he likes to put on screen (and the less-than-one-dimensional characters in, well, ALL of his movies), I doubt he gives anything but the size of the explosions much thought.

When I go to a Michael Bay movie — and, yeah, I’m a-goin’ to T2:ROTF – I make sure to turn off any critical “offend me, please” receptors I might have, ’cause I know exactly what I’m getting, and it’s going to be be EXPLODY! and BOOBIES! and RIDICULOUS BEYOND WORDS! but in the best. way. ever.

The one thing I will say that is less funny is that at least the media is asking African American people what they think about this and getting a wide range of answers, apparently. Kind of unlike what you saw when Tropic Thunder came out, and Tim Shriver seemed to be the only person getting any screen time about the issue, and even that was just a blip — I certainly don’t remember them getting a front page on Yahoo, for instance, about Stiller’s movie and it’s possible derogatory portrayal/dismissiveness of people with disabilities. Also from that article, I wholeheartedly agree that there is a “history of people getting laughs at the expense of African-Americans and African-American culture” by Hollywood, and, to a lesser extent, if you see them at all, disabled people, but I really don’t think having this discussion around something as disposable and admittedly bad as I’m sure T2:ROTF is is going to help. (and yes, I’m aware of the total copout that is just because it’s a movie about giant explody robots).

Oh, my god, I just spent 15 minutes defending the completely indefensible Michael Bay. Must stop now.

*As I was discussing this issue with a friend, his comment was that, knowing Bay’s movies, he was half-surprised that there wasn’t a mentally disabled robot in this movie, which, if you’re going to use any kind of logic — and again, logic plays no part in Michael Bay movies — then a robot with part of his CPU missing, causing him to be mentally disabled, makes a lot more sense than a couple of illiterate robots with gold-capped teeth. And my guess would be that would be making zero headlines, at least in the mainstream, though disability blogs would probably be in an uproar… Oh, man, this is awful, but again, being the non-subtlety master he is, you know if Bay had thought of this, the damn disabled transformer would turn into a short bus. I probably shouldn’t give him any ideas for T3.

update: this is a pretty good list of the eye-rolling inanity that i can’t wait to see. and this is probably the best review i’ve read so far.

From the ever-wise Ezra Klein, who’s been providing well-reasoned and easily understandable info about healthcare policy for quite some time now:

Another way to think of this is that private insurers are like a fire department that loses money every time they put out a fire and so try and find ways to not respond to calls. If anyone wants to start such a fire department and try to make money off it, I wish them all the best. But I don’t want them to be my only choice when my house is burning down.

Archer turned 20 months old yesterday, which means that I owe him a letter, but since we’re all a bit under the weather — and Archer has his first official cold, including a lovely raspy cough that he thinks is pretty funny — all you get right now, internet, is this funny picture of my tough guy pre-haircut.

Between the mullet, the sleeveless shirt, and the expression, we figure all he really needs is a can of Pabst and a cigarette hanging out of his mouth and he’d fit into just about any east-coast dive bar that I remember (and cherish) from my youth.

He got his hair cut the next day after we stopped laughing at this picture.

Update: in case you’re not one for comments, you have to go here to see what really ties the pic together — TUC was right, a tattoo was definitely necessary. Now he really takes after his pop!

I’ve been trying to get this on tape for ages, as Archer makes the best little fish face when he puckers up to get this out. Luckily, it’s not yet used in any official capacity, and I’m sure I’ll soon regret coaxing him to learn it, but for now, enjoy!

(also posted in response to Archer’s friend Dalia’s vociferous use of the word, and who will probably teach him its power over parents any day now).

I also love that he laughs at me as I try to get him to say it, as if, again, trying to warn me that I’ll regret the lesson.

This is old but I just saw it for the first time last week. Can’t wait for The Invention of Lying.

The word that comes to mind is “exasperated.” This is the crap that just kind of beats on you until you just think about giving up. I’m not at that point yet, but, man, there are days…

See, Sunday afternoon, Amy and I went to the preliminary training/orientation session for a qigong study that Archer’s going to take part in this summer. Along with the parents of 10 other kids, we were there to learn the techniques and meet the therapists who would be working with us over the summer, as well as the doctor in charge of the study.*

I got to the hospital conference room right on time and saw some of the other parents, introduced myself to the doctor — who seemed like a warm and genuine sort — and took a seat. I chatted a bit with one of the other parents whose daughter we’ve met (and who is just a few months older than Archer), and then Archer’s usual PT showed up, as she had been through this training, which had been used with children with autism and cerebral palsy and was being tested for the first time with kids with DS.

And then the presentation started. And the title slide reads: Qigong Study for Cerebral Palsy and Downs Children.

It wasn’t even “Down’s” with the apostrophe, as seems to be more prevalent in the UK, just “Downs Children.”

Yikes.

Way to play to your audience, lady. I was so kind of slack-jawed shocked by it that I didn’t even know how to react. But I must’ve immediately stiffened up or something (or maybe like in a cartoon, steam started to come out of my ears), because Archer’s PT, who was sitting just behind me, immediately whispered over to get my attention and said that she’d talk to the doctor about this when the presentation was over.

And then when the doctor started talking, she kept making reference to “Downs” and “Downs kids” until one of the other parents interrupted her to say that, 1, “Downs” wasn’t really a word, and, 2, most advocates and parents are fans of person-first language. To which the doc’s reaction was to be defensive, kind of laughing off the fact that this parent of a child with Down syndrome dared to question her political correctness. And then she later, after using “Downs” again, she interrupted herself to — not apologize — but say that we’d just have to bear with her because that’s just the language she uses.

To me, this is like calling an African-American kid “a Negron kid”. Not only would it be out-of-date vernacular, but it’s not even a word, man. It kind of sounds like it maybe could be the right word, but it’s just wrong. And for someone to not only get defensive when someone tries to correct you — whether or not you agree with the person-first language us sensitive types like — but continue to go on about “Downs kids” is kind of spectacularly arrogant. It was quickly made clear from her presentation that she hadn’t really done her homework about how Ds affects kids as far as tone and such, as her presentation was still keyed to kids with autism and muscle tightness (really not a problem in this community).

There were some parents of kids with cerebral palsy there too, and at least she didn’t call them Palsies or cripples, no she actually said “cerebral palsy.” I’d say I should be glad she didn’t use the term “mongoloid children,” though I’m not sure I would’ve been any less offended by that…but at least it would have been a technically correct though horrifically awful thing to read.

We’re meeting (with Archer) this doctor on Saturday for the initial session, and it’ll be…interesting. I’ll definitely be on high alert. Hopefully our PT will have talked to her and she’ll at least refrain from calling him a Downs kid in our presense. If not, I guess we’ll just have to have a wee chat.

The worst thing about it really is that when I go to something like that, where I know there are going to be PTs and other parents and even doctors in a therapeutic environment, I have a sense that my family should feel safe here in among members of our adopted community. And then to have that sense of safety ripped away makes it all the worse somehow.

But really, it makes me realize how lucky we’ve been that we haven’t experienced more of that in the last almost two years and really grateful for the friends, family, and professionals who have treated Archer and his folks with love and respect. So I guess another lesson learned, but, damn, I’d like to get out of school sometime soon. It’s summer, people! No more homework. A guy can dream…

*I think the saddest thing about this is that this doctor gave the same presentation three weeks ago in another town and either it wasn’t brought to her attention then and/or she ignored it.

Here’s what I don’t understand about the possible public option that will hopefully (better be) a part of the healthcare reform bill: who gains from it not being at least tried? It either works or it doesn’t, right, but it’s better than doing nothing for almost everybody concerned?

If it works, then constituents are happy, they pay less in healthcare costs (either through the public plan or because the public plan causes private insurers to play on a more level playing field and lower rates to businesses and individuals), and anyone who supported its passing gets to take some credit for making this country better and more modern and then gets reelected from now until the end of time. Since single-payer is seemingly off the table, even incremental change at this point is better than doing nothing.

If it doesn’t work, then we’re no worse off than we are now, but republicans and blue dog democrats get to say “I told you so” and then I guess they get elected a little more often… or this country implodes under the weight of the deficit caused by healthcare spending and we’re all screwed, which means, um, we’re basically where we are now. Or somebody comes up with something better, even, like, say, single-payer, and since the public option tried and failed, there’s more openness to starting from scratch. And then see “it works” in the paragraph above.

But if nothing is done, then democrats continue to be called (justifiably) weak-kneed in their resolve and their belief in issues, republicans continue to dwindle into a more and more regional and marginal party, and many of us (more and more in this recession time) will do what we can to get by on the crap healthcare we have now. But the only people who benefit from this would appear to be the upper management of the private insurance industries…

I know this is simplistic, but simple seems to be what’s needed right now to break through the din of voices clamoring for whatever it is they’re for or against. It’s naive, I know, but I don’t understand this willingness/apathy to not try something. From my perspective here near the bottom of the healthcare food chain, it can’t get much worse. I am totally open, however, to hearing how wrong I am as long as someone also gives me a viable and workable alternative rather than just saying that it’s socialism/government-run/bureaucrat-driven or some other such nonsense.

While we are not yet a part of the 62% of bankruptcies caused by healthcare bills, when I can’t sleep, that’s definitely the thing that keeps me up at night*. And our bills aren’t even that bad, unnecessary surgeries notwithstanding, but they still seem to pile up. Right now for the budge I’ve got a 600-buck cardiologist bill on my desk that needs to be paid and another one coming for over 200 just to get his ears checked. And Archer’s totally healthy — other than his eye surgery, he hasn’t even really had more than a very slight cold yet. I can’t imagine what it would be like to be dealing with colds, hospital runs, heart surgeries, et cetera. There’s enough stress in all that as it is, I’m sure, that adding worries about how you’re going to pay your bills afterward is enough to break a person.

We’re in a place right now that just about every extra dollar goes to paying some sort of bill, and if we do go out for a cheap breakfast or something, there’s definitely some guilt involved. Never mind fixing things in the house we’ve been talking about for years or adding pots to the backyard or going on a vacation this summer.

I know these are petty complaints in the wide realm of things — Amy and I are both employed even in this recession, we still have a home, we have friends and family who surround us with love and good times, we at least have our crappy insurance policy that won’t completely bankrupt us if something horrible happens (but just barely), and of course, we have our endlessly entertaining budge — but, man, it still rankles that we have to sit down at night and discuss whether or not we can afford to go have a consultation with an occupational therapist for Archer or even just go out to a movie.

Anyway, this is the long-winded version of me saying that I wrote to the president and my senator this week upon hearing about the possible “trigger” for a public health plan. That trigger was pulled years and years and years ago. The only question is how many people are going to continue to be maimed by the bullet it sent out.

*it’s actually pretty rare that this stuff keeps me up at night… mostly because I prefer denial as a coping mechanism. but when it does pop up (and this whole will they/won’t they dance about actual healthcare reform going on in DC right now in some ways makes it worse than the status quo), it’s ugly. I would also say this is not just about having a kid, or even having a kid with Down syndrome or any other disability — it’s about being self-employed, underemployed, underinsured, recently unemployed, owning a small business and trying to cover your employees, being gouged by COBRA after losing your job, et cetera. That’s the one thing that gives me hope (in a strange way) is that so many people who might normally not “see” this gap are finding themselves in similar situations and that the temperature is starting to rise on our collective representatives as more of their constituents are realizing what a raw deal the insurance industry is giving us.

Archer started doing this move just around Easter when he was gathering plastic eggs on a bed and realized it was pretty fun to go face-first into the comfy,  billowing blankets. He then started to do it the next day on the floor, and my quick gasp of panic subsided as soon as I saw that he, a, caught himself, and, b, started to giggle maniacally.

It’s tapered off recently, but he’ll still go for the big wind up and drop on occasion, and will definitely do it if you lie on your back on the floor anywhere near him (though he’s much bigger into tickling now if you’re in that vulnerable position).

I really dig how high he gets, especially on the last one in this video, as well as the swirling arms as if he’s about to take flight.