(not so disposable anymore)

I had grand plans for update(s) today, but I’ve got too much work to do — and/or I’ve wasted too much time mucking about and so now have to buckle down — so for now, here’s a pic of the boy as a placeholder, hand covered in dirt (definitely his mother’s influence), taken in our garden over the weekend.

(though the hours — mostly on hold — spent on the phone the last two days and more trying to get my damn dishwasher replaced haven’t helped any, either…)

Though now we’re back to some wintery cold so it may be a while before this gets replicated.

Jen Warnock died this morning. She was someone full of joy and one of those people who was just crackling with capital-L LIFE every time I saw her, someone for whom a greeting wasn’t a greeting unless a hug was involved. And the idea that she’s no longer with us — and that this all happened so suddenly — is just unreal.

Jen was one of our midwives and was with us throughout our roller-coaster journey that was Archer’s birth. Jen was the one who drove with me to the hospital after Amy was put in an ambulance. She was calmly eating soup out of a giant bowl while sitting in the passenger seat of our car, and somehow that act was enough to keep me from a full-blown panic: if someone could eat soup in a car at a time like this, how bad could things really be? Jen also was with me as I waited for what seemed like forever to find out where Amy and Archer were once we got to the hospital before I was let into the operating room, and I don’t know what I would’ve done without her there that night. I’ll forever be thankful for that.

We were lucky enough to get to know Jen and her family a little bit after Archer was born, having Michael, Pele, Ruby, and Jen over for dinner only once…but an event we were hoping to be able to repeat. The last time I saw her was at the Buddy Walk in October, where she joined us as a member of our team and extended family for Archer (though she’s the one taking the picture at the top of that post, so can’t be seen). Amy just saw her a month or so ago and they talked about getting tea sometime soon.

And she loved my little boy. Amy and I were so looking forward to Archer knowing Jen as a part of his life for a long time to come, and, as Amy said last night between tears, to being able to get parenting advice from her whenever the need came up.

This is from her “about” page on her dancing website:

What I’d like to be remembered for:
Being/doing anything positive/helpful in someone else’s life.

Mission more than accomplished, lady.

I’ve got no time for bullshit today, even when it’s apparently aimed right at me.

After finding something online last night and starting to build this whole piece about language and douchiness and why having Sarah Palin on your “side” wasn’t a good thing, I had to just stop myself and take a deep breath and remember that sometimes it’s just not worth it.

Not when someone dear to my family is in what could be her final — and sudden — last days.

Not when the whole reason I went online last night was to escape that tragedy.

Not when there are families out there dealing with things like this and this.

Suffice it to say that it was a dick move. And I just don’t have time for that right now, especially when I’ve already thrown a few punches against that particular brick wall.

I’m going to try to spend my day focusing on the good things in life, the joy that my kid and my family bring me, the things that would make my friend who is in pain right now smile and laugh her raucous laugh if she were with us in a better time and place. Do the same, would ya?

(sigh)

I’m so tired of writing about Sarah Palin, but it’s pretty much unavoidable in the Ds-related political world. I started to title this “the hopefully last (but probably not) post about Sarah Palin ever,” but then I realized I already have another one planned, so figured I’d better scrap it.

Anyway, cooler heads than mine over at Oz Squad have written a letter to Mrs. Palin, and the plan is that once 100 people (or more would be great!) have signed it, it’ll get sent to her and hopefully some good will come of it. For better or worse, Sarah Palin is the face of families dealing with Down syndrome in America today, and so if she can be pushed to do some good for her kid and for mine, that would be a great thing.

So if you’re so inclined, take a sec to pop on over here and add your name and maybe a non-political comment for the former governor, eh?

I’m not a fan of Family Guy. In fact, I don’t think I’ve ever seen a full episode — I’ve tried, but have turned it off out of sheer boredom or just from not finding it funny. But after reading about it in a few places, I checked out the most recent episode that aired on the 14th, and while I still didn’t make it through the whole thing, I watched the parts that had reference to Down syndrome.

And all I have to say is… thank you. Thank you to the producers first off for avoiding the whole “retarded” thing. Thank you for casting someone with Down syndrome rather than just making up (and mocking) a voice that might sound like everyone’s general impression of someone with Down syndrome. Thanks for not creating an animated visual stereotype either — anyone who watched the show on mute wouldn’t necessarily even know the character had Down syndrome. Thank you for portraying someone with Ds as more than just their diagnosis — this character was allowed to be domineering and even mean, which I thought was pretty awesome, rather than just the “special little angel” background player so many people with disabilities are relegated to…and she was the object of affection and lust even!

And, really, thanks even for making some not-so-PC jibes at the character — I didn’t find it funny, per se, just like I don’t find most of what Family Guy does funny, but since that’s what the show does to everybody else, it would have been pretty patronizing if they’d avoided the Ds altogether. And again, the show seemed to go out of its way (with the exception of the “former governor of Alaska” line) to avoid the easy and stereotypical targets, especially amidst this current (tiny) media maelstrom and just go with calling her “retarded.”

I know Sarah Palin’s upset – though I tend to think this just makes her silence/laughing off of the Rush Limbaugh thing even worse — but I thought it was totally fine. One of my worst fears is that Archer and people like him will continue to simply be ignored. But what Family Guy (and Glee) is doing is actually injecting people with Ds into the culture in a way that I haven’t seen since Life Goes On.

There’s a good piece of commentary on this here… and an opposing viewpoint here. I’m certainly not in any way recommending you start watching Family Guy, and I’m looking forward to seeing what some other parents thought of it, because (gasp! the horror!) sometimes we don’t all agree. But if you really want some good Ds-related entertainment, just go check out Ponceman. He just started what I think is going to be a weekly vlog that’s pretty awesome — the “ode to bacon” cracks me up, as does the “dead sexy” look of the day. Ponce’s brand of entertainment isn’t for everyone, but as far as I’m concerned, if Archer’s anything like the ponce when he gets a little older, he’s going to be a hell of a lot of fun to hang out with.

Update: there’s another good commentary by a mother of a kid with cerebral palsy here that better illuminates the point I was trying to make.

Hey, Mr. Nolan,

I’m guessing you don’t remember me, but I saw you once as I was driving up La Brea on my way home from my subtitling job years and years ago.  I might’ve even waved. But even if that’s not ringing any bells, I was also the guy who championed Christian Bale as Batman before any kind of decision was made, and I think we both know how that turned out.

So with today’s news that you’ll be “shepharding” — you’ll get the joke in a minute, and yes, it’s an awful pun, but I couldn’tt resist — the development of the new Superman movie, I wanted to let you know that I’ve found your guy. A few years ago, I thought Peter Krause was the guy for the tights, but time has passed and that’s no longer really viable.

So here it is, and try to keep an open mind: Matthew Fox.

I’m guessing you’ve seen Lost, so you know he can pull off whatever you ask of him acting-wise, but did you happen to catch him in Speed Racer? Even in that ridiculous leather outfit, he was pretty damn badass. I think it would be a pretty awesome challenge to see him do the dorky Clark Kent bumbling action And he’s a man, dammit, in a way that Brandon Routh just couldn’t quite pull off. I know the trend right now is to try to grab that teenybopper demographic, but there’s something really wrong with having “man” as part of the title of your movie and then having some twiggy wisp of a fella as the star of the movie — that’s fine for Spider-Man — hell, I’d really like it for Spider-Man — but Superman needs to be a real guy, you know? And not necessarily a beefy musclebound jock, but someone with a little experience, someone you’d trust to both handle himself and save the day. Besides, Zac Efron or whoever else can always play Jimmy Olsen. And I know Fox is in his 40s, but I’ll bet he can handle at least a trilogy of Supes movies before his age is a problem — just look at what Downey Jr.’s doing with Iron Man.

He’s also damn handsome and about to be unemployed. He recently gave a few quotes about not wanting to do another TV show but wanting to test the theatrical waters, which, well, means he’s ready for action as the man of steel. Though he may need a little just for men to get that grey out of his hair…

Now, I’m not nearly as attached to Superman as a character as I am that big bad Bat guy, so I won’t be too offended if you go in a different direction, but promise me you’ll at least think about it. And even if you go in a different direction, please, for all that is good and holy in the world, let the blue boy scout actually punch something in this version, eh?

(sidenote to mr. ring: yes, i can hear your scream of Noooooooooooo! all the way from here, and I don’t care. LALALALA, I am not listening to you)

This is only a half-formed thought, but bear with me:

So there’s a comment on the post a few below about how taboo words should be used in comedy where the commenter — someone I know and respect — wrote “I DID laugh at the end with the Sarah Palin joke. As in… she is f*cking retarded… not her son.”

And it made me realize that part of the reason maybe that this hits so hard is that my definition of “retarded” and your (the world at large, anyway) definition of “retarded” are two very different things. Because my son is retarded. And to me, that means that he’s amazing and awesome and gifted and smart and funny and incredible and caring and full of joy and prone to fits of giggling when I tickle him with my beard. And to you — again, the royal you — that means that he’s disgusting and stupid and slow and worthless and annoying.

And so when I hear that word out in the real world, there’s a bit of brain whiplash that happens as I, in a microsecond or whatever, figure out that your meaning and my meaning are completely the opposite. And that just tears open whatever scab I’ve been developing towards it.

So as far as Sarah Palin is concerned, no, in my definition, she’s about as far from retarded as you can get.

I’m more than a little tired of the serious discussions — okay, it’s a mostly one-sided brain-dump of a discussion, but still –going on around these here parts, so instead, we’re moving on to some “it’s about damn time” new budge pics.

I love the look on his face in the above pic.

It’s probably no secret that Archer loves the swings. We’ve had a good spell of lovely weather here in P-town, which has given us a lot more swing time lately.

See that little blip right in the center of this pic, headed straight for the fountain? That’s the boy, walking as fast as he can away from us. He likes to say “run, run” and then walk as fast as he can, even if it’s just in circles around the living room. Either that or he says “purpose” and then falls down theatrically.

And then just one more, speaking of walking:

What you can’t see in this pic is that the cat is standing right in front of the boy, and Archer’s probably already saying “sorry, sorry,” as he likes to chase the cat around and try to fall on him, and of course you have to say sorry if you fall on the cat. Luckily, Phinneas is so far faster than Archer and has yet to be really pounced on. But better grow some eyes on the back of your head, kitty, ’cause that boy is comin’ for you.

Both The Daily Show and The Colbert Report had riffs last night on Sarah Palin, and since she’s an easy target — and, really, she’s done this to herself — they both touched on the use of the word “retard.”

Here’s the one from the Daily Show:

I’ve written about The Daily Show’s use of the word “retarded” before, and I have to say that I think both these shows are treading a really fine line here, to varying degrees of success. There’s a good bit of perspective on at least the Lewis Black piece here, and the author of that blog, Dan, and I had some back and forth about the bit earlier this morning. If you read his piece, I think you’ll figure out his opinion on this pretty quickly. Here’s what I wrote to him this morning about the Lewis Black piece:

As for the Lewis Black/Daily Show thing, which I just watched twice… I’m not enraged. Sure, some of it made me cringe — like the fake R-word tv show thing and the “tard” bracelet — but the point of it to me seemed to be more about Palin’s hypocrisy and Limbaugh’s obviously horrendous use of the word. And I was actually pretty impressed at the audience’s reaction to Limbaugh’s use of “retards” — there was a pretty audible groan rather than a laugh. Hell, if that’s what it takes for people to understand that this word shouldn’t be tossed around casually anymore, than I hope Limbaugh keeps spewing his bile.

In fact, Lewis pointed out the ubiquity of the adjective use of “retarded” for “wrong” or “ridiculous.” It reminds me a bit of the Louis CK bit about words that he knows he can’t use because they’re bad but that as a person who loves language he’d like to be able to say, like “faggot” or “cunt”. Louis CK also talks about using the “n-word” instead of the actual word, and how in some ways that’s worse — I wrote about that a while ago on my blog, and I tend to agree. I’d rather have everyone on the news have to shape their mouths around “retard” than get away with the euphemism, but I’m a confrontationist (not a word, I know, but it sounds good, right?) on this issue.

I have to think that even six months ago, The Daily Show’s coverage of this would’ve been more along the lines of “Sarah Palin doesn’t like the word ‘retarded’? Well, that’s retarded.” and just gotten a cheap laugh from it and moved on. Highlighting it in the way they did makes me feel like we’re actually gaining some traction with this issue. I mean, look at this piece:
http://www.thedailyshow.com/watch/mon-march-2-2009/twitter-frenzy

But that’s my take on it, and I look forward to your thoughts either in e-mail or by posting on your blog.

It reallly IS inescapable right now, and for better or worse, I guess we have Sarah Palin to thank/blame for that. I’d like to think that shining the bright light on this issue — and hey, I’m amazed at how much coverage this is getting, much more than the Tropic Thunder thing two summers ago — is actually going to make more people think about how they use those words.

This was followed by a couple more e-mails where we mostly agreed to disagree, though now we’re sworn enemies!

But then I watched the Colbert piece, which I find much more problematic. Sure, the audience still reacts the same way to Limbaugh’s animosity when he throws around “retard” but then there’s the uproarious guffawing when Stephen gets to his “Palin is an effin’ retard” punchline.

I can sort of appreciate what he’s trying to do here, using Palin’s own example against her since it’s “satire,” but it still feels like a cheap and easy laugh and much more in line with what I actually expected from the bit on the Daily Show, considering their past history. And I felt like less of his audience got the joke — instead, they were just laughing because calling Palin retarded is funny. Again, it’s all a matter of interpretation. And Colbert’s whole show is based around his right-wing persona, which could add a whole different layer to the thing… or I could just be trying to justify and interpret what he meant…which means it’s pretty much a failure, eh, since it should be clear? (Or maybe — just maybe – I’m way too close to this issue to be able to discern any kind of nuance in any way)

I guess I really don’t know what to think. I told Dan that I thought this bright spotlight would be good — it’s that whole “if you make even one person think about it” thing that I’m trying to hold on to, but sometimes it’s just brutal and I just want it to all go away. I’d probably feel less like that if there was another representative of our community other than Sarah Palin out there as our unelected Ds delegate. Can someone please draft John C. McGinley?

The family watched the super bowl last night, and even though amy was pretty much sacked out on the couch with a cold and Archer kept saying and signing “all done” and asking for us to watch monsters instead, we had a pretty good time watching it. Except for — with maybe the exception of the Betty White Snickers ad and the Doritos electric-dog-collar ad (sue me, I laughed) — the commercials were awful. And, as smarter people than I have pointed out, amazingly mysogynistic and violent… to which I can hear the “duhs” out there, though it seemed even worse than in past years.

The Saints won in fairly exciting fashion, and I was rooting for them less because of the Cinderella aspect of their team and what it means to the big N.O., though there’s definitely something to be said about that, and more in an anti-manning type way. (I don’t know what it is, I just can’t stand that dude).

Anyway, there were a bunch of football-related stories going around in the week before the game, and none of them affected me nearly as much as the one in this video, which is both heartbreaking and pretty life-affirming at the same time. Definitely puts some perspective on the piddly name-calling crap, for sure — though I’d hope that a few of those name-callers would be a tad bit more ashamed of themselves after watching this piece. I’ll bet you can’t watch it without at least getting a lump in your throat: