ugh in the news

[rivendellrose]

Not one but two Seattle- or Washington-centric posts to OTF!Wank in the last few days. One about a school shooting in Tacoma, and the other a totally disturbing (although, to my mind, not really so much wanky as just plain insane) pair of parents from gods-know-where who decided to come to my city so that their developmentally disabled daughter could have surgery that will prevent her from physically aging beyond 9 years, in terms of size, reproductive aspects of biology, etc. Normally I really appreciate living in a city with world-renowned hospitals, but somehow I doubt they'll be making a deal out of this one in all of Childrens' Hospital's ads and brochures.

I'm still looking for real news sites about this (bad me for not paying attention to the news, I guess), but... great. Now we're not just the city of WTO, Starbucks and Microsoft, but the city of really disturbing and extremely controversial surgeries on minors as well. As far as actual moral response to the surgery goes... I'm not even touching that. On the one hand, yes, it would suck to care for a grown woman who has the mental capacity of an infant (as is the status of this little girl, and said status is supposedly completely permanent), but... dude, who thinks of that? Who wakes up one day and says "gee, maybe we should have our little girl's uterus and breast tissue removed, and have her go through hormone therapy so she won't grow any more! That's the perfect solution to our problems!" That's one hell of a thought to have. And one hell of a weird precedent, too.

I miss the days when we were just the city of rain.

Comments

[ruuger]

surgery that will prevent her from physically aging beyond 9 years

Yeah, just I saw that too and I'm still boggling. I mean, I can understand some of the reasoning, but... like you said, who thinks of that? I'd be interested to know if the doctors suggested this to the parents or the other way around.

The thing is, I'd understand a hysterectomy and maybe even a masectomy when she's older, but the whole 'keeping her child-sized' is what's boggling me, especially this bit quoted at OTF_wank:

"Ashley's smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.," her parents wrote."

Are they afraid that the snuggling and touching will become sexual in nature if she has a woman's body, or what do they mean with that?

[rivendellrose.livejournal.com]

I think what made them decide on the size thing is the fact that it would be a lot harder to give her the care she needs if she got to full adult size? My mom used to do in-home care for a quadriplegic guy, and I know there was a lot of turning him at night so he wouldn't get bedsores, getting him into his chair and such, all of which was really hard on her physically because of the sheer weight involved. And if the girl really does have the mental capacity of an infant, that's going to be a lot worse, because she won't even be "helping" them in any way. So my impression is that it's to make carrying her around easier and such. Which is reasonable, but still just... creepy. Eagh. To come to that kind of decision... just plain scary.

There but for the grace of god, luck, and contraceptives might go any of us, I suppose, but still.

[zentariana.livejournal.com]

As someone who has worked with several people with severe brain damage, I can actually understand it.
They get much better care when they are young. They get big and you hurt yourself moving them, things don't fit as well and trust me, no one needs to go through puberty on top of all the rest of it. They usually end up on depo shots which are just really not good for you as they take away your bone calcium and make it really easy to break. So.
I don't know if I would -do- it to my child, but fuck yes, I've thought of it.
You change one diarhea-filled diaper and have to pick all that nasty out of pubic hair and you'd think of it, too.
Well, or at least crotch waxing. And owe to that one!

[rivendellrose.livejournal.com]

It does make practical sense, totally. My mom did in-home care for a quadriplegic guy for several years, and I know it was really hard for her, and that was a guy who was completely functional in other ways, mentally and all that. And people with this kind of extreme mental deficiency are obviously going to get better care as children, not to mention the fact that we're talking about a condition so severe that it's not like the girl will ever know the difference. It just... I don't know, the thought of it kind of freaks me out, on a precedent sort of level, I guess? Completely irrational reaction, but a reaction nonetheless.

[zentariana.livejournal.com]

Yeah. I understand that, too. We play god more adn more often.

[bluerose16.livejournal.com]

First of all, awesome new layout, how did I miss noticing it? Just goes to show how out of it I am.

:| I'm sorry all that weird shit's happening up there. If it helps, I still think of it as the city of rain.

[rivendellrose.livejournal.com]

Thanks! It's from the layout contest things that they put up a while back. *g*

And thank you. It's just disconcerting to see my city's name attached to all this stuff. On top of the things being scary to begin with, of course.

[onefishjyuufish.livejournal.com]

but... dude, who thinks of that?

Probably a result of reading up on the (non)future their daughter can look forward to. :\

[onefishjyuufish.livejournal.com]

Wow, okay, someone linked to the parents' blog and, if that's at all approaching the truth, I'm amazingly impressed by the care and thought that went into the treatment.

[rivendellrose.livejournal.com]

Very true. And in response to both this and your other comment... it's not that I can't understand the impulse that's making them do this. I totally can. I'd be completely horrified and at a loss if I were in their position - the idea of having a child who will never grow past infancy from a mental standpoint just horrifies me, and it has to be a nightmare for them to look forward to a future of dealing with that. I just can't help but be appalled by the idea of turning a child into... a human bonsai or something. It's a scary precedent more than anything else, and just an all-around horrible situation.

[onefishjyuufish.livejournal.com]

The idea behind a bonsai is to have something normally large be rendered in miniature for aesthetic enjoyment, which is nice, but ultimately frivolous.

The idea behind using medicine to keep a severely developmentally disabled child at a physical level where her parents can better commit to giving her care and love, as well as the benefits to smaller size (loads less health issues for one thing), seems much more practical than anything.

They're not doing it as an impulse. They've planned this out, they've looked at the options - none of the procedures that are being done are new, they're just all being used within a specific program with a goal to make their daughter the happiest and most comfortable for as long as possible.

The term "human bonsai" feels more sensational than anything. Yes, they're molding her physical growth to a specific end. But that end? Is better physical health. They can exercise her more easily and with less fear that she will hurt herself or others, she can be moved more often, both to stimulate her senses and to keep her closer to her family and their attentions.

[rivendellrose.livejournal.com]

True, true, and now that I've read more of the articles it's completely inaccurate. It does make sense in practical terms, and I appreciate how reasonable the parents are being about the whole thing. It's still a disturbing idea, but... hell, whatever makes it easier for her to have as comfortable a life as possible, in the end.

[cassildra.livejournal.com]

From what I understand, reading the articles and everything on this issue, she's already had the surgery and gone through the hormone therapy to stay a child forever.

My LJ post on the topic.

[rivendellrose.livejournal.com]

Thanks for the links! I've been off-line so much with work the last week, I had totally missed all the background on this - it makes much more sense now that I know that this happened several years ago.

To be honest, the practicalities of it work for me. Realistically, it seems like the best solution, particularly if she was going to undergo puberty early, as seemed to be indicated. Menstruation and all that it entails in a child with that kind of mental condition... my god, that would just be horrible. It's just such a disturbing concept to wrap my brain around, in a general and theoretical sense. I guess the best I can do is pray that I never have to make a similar decision. I know I'd go with practicality, but it has to be a miserable thing to do.

[cassildra.livejournal.com]

I agree with everything you've said.

(There's a new link in my latest entry, as well.)

I just--the "pillow angel" thing creeps me out. >_>

[rivendellrose.livejournal.com]

Yeeeeeah... I probably wouldn't have been quite so disturbed last night when I read the wank report if it hadn't included that terminology. o_O Very creepy.

And I'm reading the comments on the parents' blog right now, and... um.... there's one from a woman who has two adult daughters who have the mental capacity of slightly over a year and 3-5 years, respectively. Forgive me, but... why in god's name would a person have another child if they'd already had one who was never going to mature past infancy? Leaving alone the amount of work it's going to take to care for that child... did they honestly want to risk bringing another life into the world, knowing what kind of quality it might experience? Geagh. That just smacks to me of the worst kind of irresponsible behavior.

[onefishjyuufish.livejournal.com]

Ashley's parents appear to have gone on to have two more children, both of whom seem healthy. I think it's one of those things you have to look at what caused it in the one child versus the probability of it happening again against how badly you want a fully capable child to begin with.

[rivendellrose.livejournal.com]

Very true - with Ashley, since they don't know what caused it, that's a different sort of issue. And clearly it worked out for them (anyhow, I'm impressed - three children would be too much for me, even if one of them wasn't mentally disabled). And without any background on the other case it's impossible to tell, but... If I knew there was a chance of ending up with something like that, I'd just plain not have kids.

...Granted, I'm 95% on that decision anyway, so I'm probably not one to talk. :P

[cassildra.livejournal.com]

Ashley's parents have two other happy, healthy children. It's a personal choice, but... eh. I wouldn't make it, myself.

Meh. I wouldn't even want to give my children the migraines I have, so...

[rivendellrose.livejournal.com]

It is, totally. And considering that I get freaked out by the thought of the commitment and time and sacrifice required for one healthy child, I'm not a good choice to judge. :P

[cassildra.livejournal.com]

I know. I love children! I'm just totally afraid I'd not be able to take care of my own. And I've got enough issues with my parents that I don't want any kids I have to have problems with me.

...I hope that was coherent. Just got back from my birthday celebration. x.x Sleeeeep.

[cassildra.livejournal.com]

Amending: I love well-behaved children.