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Girl's Recovery Stirs End-of-Life Debate
Weekend Edition - Saturday, February 4, 2006 ·
An 11-year-old Massachusetts girl who was nearly taken off life support
after a savage beating shows signs of recovery. The case raises
questions about her medical team's conclusion that she could not
Oh god, I'm so happy.
Someone email this to Michael Schiavo.
I want to adopt this little girl.
I was 10.
It was when I realized that really bad things could happen, before I realized that some of the talking about those bad things by adults was not because it needed to be talked about, but to exploit and manipulate viewers and readers. I collected all the newspaper clippings and saved them in a scrapbook. I have no idea why -- what was it that caught my attention?
Maybe it was because I was a pretty literate kid and I started to read newspapers then. We also got a satellite dish and my world expanded from ABC (and CBS and NBS on clear nights) to a CNN and MTV and all sorts of other input that made me really vulnerable to all the emotion-mongers and talking heads and replay after reply. I don't know but it was one of my first obsessions.
I remember other events from much earlier (age 4 or 5) -- John Lennon being shot, Reagan elected, Reagan shot, Columbia's lift off, hostages freed, Diana and Charles' wedding. These are barely remembered, though, and I mostly remember my mom's reactions to the stories. I don't know. How strange and American that someone remembers their preschool years mostly by her mother's reaction to the television stories.
I remember my mom's reaction to all big events of my early early childhood -- breaking my arm, our dog getting run over. Sign that I had attachment issues?
But Challenger was the first time that I had any connection with anyone on the little gray box that represented the world Peter Jennings or Ted Turner thought was important.
I started writing melodramatic diary entries about how I felt, using every cliche I could come up with.
(Not much has changed, huh?) So I guess it was important because that's when I started to really have an inner life, an inner narrative that I kept hidden and written down, mostly because I started to realize that other people didn't get obsessed over things like Challenger, and that to have obsessions like mine were weird and not very cool.
That persists today. No one wants me to tell them about what's going on in my brain. It makes an awkward lunch party. But if I can get it written -- damn -- that make might some good reading.
Just as an aside, the age difference between me and hubby doesn't really bother me, but he was 20 when it happened. Totally different generation when you consider it. The 10 year old I babysit said she likes Bush because he's been president most of her life. I prefer to think of the last six years as sort of an abnormal blip on the events of history, but it's her whole world at this point. Wow.
After the Terri Schiavo case, I will never trust anything like this again.
I'm even starting to examine the position of the pro-lifers -- not that a person begins at conception, but that personhood might be a complicated issue and my simple "That's the woman's right to choose" is sort of a cop-out. It's hard hard hard though. I don't want republicans to make a decision concerning my body. Knowing my medical history, and what could happen to me or a baby if I get pregnant, I don't want pro-lifers screaming at me if I have to make a that choice. I don't want them to have a say, or even an influence on that decision.
I don't want the courts to do it either.
But this poor little girl -- no one has EVER acted in her interest in her whole life, from what I can tell. The right to privacy doesn't extend to the right to kill those in our families.
I was watching it last night when they thought they found the miners. I understand how rumors happen but the news shouldn't feed into it -- where is that famous "unconfirmed" adjective?
This version of the story on the West Virginia miners was published in the newspaper's final edition, when reports on the scene suggested that 12 miners had been found alive. A link to the updated version of the story is available here:� 12 Found Dead in W.Va. Coal Mine
12 Found Alive in W.Va. Coal Mine
Body of 13th Man Was Discovered In Adjacent Area
Wednesday, January 4, 2006; Page A01
Ahahah! These are my people. At least they didn't go after the stumpy Christ of the Ozarks.. Or any of the dead babies at the Precious Moments Chapel.
Dear god almighty, how can I not love my homeland!?
The point is THESE PEOPLE, THESE DEATHS.
What I hear in "this shows us we aren't safe" statements is:
"Wow, the deaths of poor black people show us that we really aren't ready to respond like we thought when it's rich white people in D.C. that are threatened. We won't know what to do when it really counts. That needs to be fixed."
Becuase of someone who shall not be named (I forget whether or not her particpation in the thing is secret or not) I decided to venture back into the political crossfire boards. Lots of guys having a pissing contest. It annoys me. I HATE being dismissed. They have no idea who I am or how carefully I've studied things. I left. they were assholes.
Once again, I didn't scrub toliets all the way through college to be dismissed as the liberal elite. Or blindly following my democratic masters.
That's my experience with talking around the men I grew up with. Not disagreeing with me, but dismissing me. My ideas aren't valueable. I am being silly, or foolish. Of course I'd think that -- I haven't lived in the real world.
I remember walking down a hill at Point Reyes, talking to B. At Point Reyes, our year was ending and we were all a lot nicer to each other. I said that I was going back to a world where people dismissed me. If I wanted to recycle instead of thowing things away, it was met with amusement by S. If I removed spiders instead of squishing them, it was met with absolute scorn by the stepdad. If I told him I would take the oil to town when he changed the oil in the car instead of letting it run into the ditch, he rolled his eyes.
That happens alot. My stepcousin and I disagree on the Patriot Act and he said "When you get out and see what I've seen, you'll understand." I've seen little boys in jail for raping smaller boys. It's hard to have illusions about the criminal class after that.
A lady on the listserv got all upset when someone suggested Canada MIGHT have a better health care plan. She jumped on the liberals and blue staters. etc. And it turns out she was upset about lack of services in her state... well... if you want more government services.... traditionally, the answer would be, don't vote republican.
I. don't. get. it. Why has being on the right team become more important than listening to people?
People shopping, strolling, going to pray.
Why is when they are white people riding the tube to work, we go to live coverage, but not when it's brown people that live far away?
We somehow think they are somehow more guilty of something than Londoners.
We think they have to be used to it, so it's no big deal.
We can't imagine what it would be like to be shopping in an open air market in Musayyib, Iraq because we haven't been there, haven't heard Arabic spoken all around us, haven't seen the mosque that was targeted. Hell, most of us don't even know if they live in houses. (I have had friends that have been surprised to learn that the Arabic students don't live in tents in the desert but instead work at banks and live in apartments)
Most of us haven't been to London either, but we know alot about them. They send us good music. They are a lot like us, but they can shw breasts on T.V. and they talk funny. Their deaths are tragedies.
Maybe it's because we know the right response. Fear, outrage, candle light vigils, indignation that this could happen to people innocently on the way to work. A call to wipe the bastards out that did this, even if the bastards are in fact, British.
But Iraq. What is there to feel about 59 dead in Iraq? I only noticed it because I was deliberately looking for an instance to compare to London. I'm sure about the same number died yesterday. I just feel upset and sad and confused because I am sure what we are doing isn't working, but I don't know the alternative. There is no call to wipe the bastards out because we don't know who they are. Are they Sunni? Shiite? the mysterous insurgents, whoever they are? perhaps the 59 were somewhat responsible. Perhaps we are. It's uncomfortable and nasty. Better to revel in the misery of a clear cut case of sadness for the people on the double decker bus. Better to look at images over and over of planes flying into towers. We know the anger and outrage is justified. That is an act that is clear. There is no question how to feel about that.
Am realizing more and more how hard she works to compensate for her disabilities. I originally thought she might be okay one day living totally on her own. I still think that, but as she trusts me more and more, I realize how much she has to contend with. But she's wonderful -- funny, bright, enthusiastic. She's in heaven right now because she is very much into the patriotism thing and all the red white and blue stuff was on sale.
If you ever want to see the effects of direct marketing, hang out with a child or someone who is developmentally disabled. Patriotism and supporting the troops is a fad that she's participating in whole-heartedly and with great joy and enthusiasm, with zero reservations and no political feelings whatsoever. It's just something you do.
Like those awareness bracelets. I wear my angelman syndrome bracelet to raise awareness and because I am devotedto researching AS at this point in my life. But you see an 8 year old with his arm covered in little jelly bracelets and you know it has nothing to do with any cause. It's just collecting, the way cup full of floatie pens from around the world is collecting. It's just profit for someone. It's product stripped of all meaning -- or rather, product without the meaning that clever marketers have attempted to tack on to it. Ribbon magents that say "pimp" sold right by the ones that say "Support our troops." It's all product. Someone in china who made my angelman bracellet is getting the $$ from my "heartfelt" fashion statement.
But being around someone who doesn't seem to have these filters is educational. What can I do, look at her with scorn when she asks me why I don't have a red, white, and blue ribbon for my car?
I am disturbed sometimes by how some of my clients repeat religious or political rhetoric. It's amusing most of the time, but it seems sort of unfair... I've had a girl report to me that John Kerry is bad because he wants abortion. How do you argue with this, knowing that going along with the community and the social norms of the community is in many cases, a survival skill that kids learn early to avoid being the "retard"? How many girls do I know with learning disorders that end up pregnant because they've never REALLY had autonomy or were made to understand what it means to have the right to say "yes" or "no"? (my cousin's baby -- my goddaughter, is a living example.) How many boys ended up in juvie for that same reason? There are only rules -- vague codes of behavior that you have to follow or you will be singled out. When I'm out of my element, at a girlie girlie bridal shower or makeup/tupperware/pampered chef etc. type party, I see how that feels. I felt that all the time in high school -- there was an unwritten code that I couldn't read. The clients I have that have high enough skills to be aware of this code and low enough skills to not really understand it are in a heartbreaking position. I have to be careful not to smother or embarass them.
Maybe that's why I'm drawn to the non-verbal -- they exist completely outside of the code and they and I feel free to adapt it.
But man, this girl I work with now is teaching me so much. Even if I do have to listen to country music for the seven hours I work with her.
I dunno. Maybe I'm sick.
But what I got out of it was chilling.
Like my boys (with the exception of one kid, who I saw facedown, crying because of his guilt, not because he was caught) it is all about the offender. Completely and totally about how readers should empathize with him and the wrongs done to him. No serious introspection about his victim.
I saw this all the time with my boys but I assumed it was a function of their ages. Apparently not. True empathy eluded them. We worked on role-playing and "how would you feel" exercises, even dungeons and dragons, making them stop and identify how the characters would feel right now. ("Scared, because the big ass dragon is about to eat him!")
It's a blindness -- sort of the mind-blindness that autism is famous for. An idea of using other people as objects. Does it come from the same place as autism? And I would argue that not all people with autism lack a theory of mind.
I did a study once as an undergrad about how children develop empathy and much of it has to do with the give and take they experience early in life. What happens to those who never get that give and take? Is it too late? Are they doomed? Do they not have any responsibility for their actions then? I've known many people that seem to have a total and complete lack of empathy, but they are not violent.
To empathize requires imagination. Sometimes crime is equated with intelligence but it's a certain type of intelligence that keeps people from hurting others. Or more exactly, I think it's the lack of a certain type of imaginative and creative intelligence that makes one unable to imagine how the other feels and unable to care -- the lack of that capacity is what I've seen over and over. Considering how much of the population of the boys I saw had serious learning disabilities and/or (almost always and) home environments that made them worse ("I acted like my dad did, because he was the man of the house.") I see how it happens.
I remember when I was leaving, T. called me out in the hall to talk to me and said "I can't understand why you'd leave when you helped me so much."
That was the key right there. He couldn't understand, although I was fairly close with T. (as close as you could be in a juvenille lock up, which wasn't that close), that I was a human being with my own desire and motivations. He didn't understand that about his mom.
This was the child that drove a staple through the palm of my hand. HE's in jail now in St. Louis, awaiting trial for molesting an 8 year old.
I see that so much in John Duncan's blog. He even muses on it a few times.
I see the blog as a way of "taking the vic." He has said that there is an elaborate system of police harassment that makes him act the way he does. We called it the "victimstance" -- "Look what you've made me do."
I get frustrated when the general population doesn't realize that these are not simply monsters born ex-nilho (sp? a long time since philosophy class). But the blog was good for reminding me that despite the fact that he was a human with thoughts and opinions and feelings, he still was a sociopath in the clinical definition of the word. He had no ability to feel bad for his victims.
I love Dostoyvesky but I get so frustrated with "Crime and Punishment" because of that. Raskolnikov (sp?) never reaches any sort of understanding. I've been afraid that OMCII will dissapoint me if it's all about Nikki and not about any sort of authentic empathy for the victims.
This is the reaction that makes us bomb other people.
They are not humans -- the deserve this. People in London and New York don't deserve to be terrorized, but people in Iraq do.
k, I'm depressed now.
Except a few.
I'm trying not to call anyone because I know the systems are jammed and down.
There is really no reason to suspect anything bad has happened to anyone I love -- in a city that size, just because someone lives in the city, it doesn't mean that they were likely to be there.
Okay, fuck it, I'm nervous without good call to be.
On 9/11, my sister and cousin lived in New Jersey. My cousin was a flight attendant on a private airline. My sister went to New York occasionally, and only in to the WTC rarely for work. On that day, she was by fluke in the city and got the hell out of dodge before the bridges shit down. My cousin was stranded at an airport.
I wasn't worried until my mom and aunt started calling each other.
Then I was really really irrationally worried.
My cousin calling in and saying they couldn't find my sister was stupid. Then my mom was like heart attack worried when my sister was miles away from WTC. There was no reason to thiink she would be lost. What she should have told my mom was "cell phone towers are down, but I called R's office and they let everyone come home early." But no -- hysteria ran rampant for a little bit.
I'm waiting for an email from my cousin in London to say all is well.
I know that it is -- chances are sooooo small.
Just a little anxious until that comes in.
So glad my mom and her friends are back from London, though. This is the type of thing that would just terrify them. And if they happened to be sighseeing that day *shudder*
Oh man. After my post about my boys, I read this.
There has to be some sort of solution. GPS monitoring? Better court system to help decide who needs jail and who needs treatment? How many of my boys look at a lifetime at lockups by the time they hit 13? Shouldn't they have a chance to get out and have a normal life? Part of the reason the older boys were so hard to handle is that they knew their lives were over. They knew that it was cinderblock and locks for them for the rest of their lives because they couldn't stop reliving and reinacting the horrible things done to them.
But it's no excuse.
We need to pour money and resources, right now, into help for victims of sexual abuse as children because EVERY SINGLE BOY on my floor and the floors I worked on had been abused sometime in his life.
But...how many Shastas are we willing to risk until this works?
I think one is too many.
I need to imagine an audience to take good notes, even though I don't make much sense. Sorry.
It's why LiveJournal works for me in a way that a journal doesn't. Sorry guys. I promise to put notes behind a cut.
I'm at the John Wayne Airport. (hey, little lassy. Or as my great uncle says "JOhn Wayne could take your arm off and spank you with it!" This is my 85? year old great uncle with some severe articulation disorders and has metal disabilities. :))
I went through security.
I had a handcheck for my camera. It alerted for bomb making chemicals. Had a pat down. Girl came running. *sigh* I kinda liked it hehehehe
I'm such a wimp when it comes to issues of race. I realized this while watching the "random" screenings. I saw maybe a dozen people get searched. Me and two others were white (And I was searched for a reason.) I watched one very very well dressed black man get his bag opened by a white guy, who picked up his Bose radio system. "He says it's a music system" he hollers. "How much does it cost" he asked the owner. "About 500 dollars" the man said calmly and evenly.
I imagine, after the sixth or seventh or 500th hundredth time of being searched, I would lose it on someone. Then of course, people could talk about how violent people like me are.
The lady in front of me and I were sharing security stories. She told one that was a little racist ("It was the end of September, right after the bombing, and she said if she saw a single person that looked Mid Eastern, she wouldn't get on."). What do I do? Call her racism?
I tell my story about flying to New York, Thanksgiving 2001. How scared I was. Then I saw someone sitting beside me who looked Arabic and realized that he had to be more scared -- if he stood up to pee, he'd probably be tackled.
Yes, there was an Arabic man on my flight, but it didn't really happen like that. It's sort of my subtle way of saying "He was a human being too."
Last night, at a bar with Dale and Janice, the guy next to us (Paul, now Janice's American husband!) asked us why we were in CA. We told him about the conference and he started talking about whether or not there is a test for Angelman so the pregnancy could be terminated. That makes me cold -- I am all for the right to choose, but that's the worse sort of discrimination. No one says "yes, I think I'm up for this challenge." They have a child they love, then they find out about the disability. The other way around is too terrifying. Even me, with all my experience, would be terrified to find out that my future child, an abstraction, would be severely disabled. When it's a real child, it's the child first, then the disability.
Anyway, the night ended up with me showing him pictures of the angels and how cute they were.
I guess I can argue and try to change people's mind. But instead I just talk about how much better we all are for having angels in our world and leave it. Sometimes stories can do what arguments can't.
Sometimes I hate that I'm not more aggresive in calling out discrimination. But I hope that what I'm doing works eventually. This guy is a nurse, so the next time he sees an Angelman kiddo, he'll think of the conversation, I hope.