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Rights of the Disabled

Medicine Medical Ethics Health Stunting growth 2007

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#21 Pixiedust

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Posted 05 January 2007 - 04:40 PM

View PostBeka, on Jan 5 2007, 10:37 PM, said:

:lol: Oh no, the mutants are coming! Take cover! :p

Just had to try and quote myself now to see if it'll come up as "Beka" or not.

Edit: It does! Why does it do that? Does it get confused at the apostrophe and just cut everything else off?

Edited by Beka's Playgirl, 05 January 2007 - 04:41 PM.

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#22 Kosh

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Posted 05 January 2007 - 04:40 PM

View PostBeka, on Jan 5 2007, 04:37 PM, said:

:lol: Oh no, the mutants are coming! Take cover! :p


Computer is probably cutting it off after 4 letters. :ninjadeath:
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#23 Pixiedust

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Posted 05 January 2007 - 04:45 PM

Methinks that apostrophe is causing troubles...!
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#24 Pixiedust

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Posted 05 January 2007 - 04:46 PM

View PostKoshthatnowhasalotmorethanfourlettersinhisname, on Jan 5 2007, 10:40 PM, said:

View PostBeka, on Jan 5 2007, 04:37 PM, said:

:lol: Oh no, the mutants are coming! Take cover! :p


Computer is probably cutting it off after 4 letters. :ninjadeath:

See, it doesn't! :D :p
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#25 Mooky

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Posted 05 January 2007 - 04:56 PM

When it sees that apostrophe after Beka, the board truncates your name cuz it thinks that's the end of your name.  Now, Bekas Playgirl would show up since there's no apostrophe 'til after the l in Playgirl.

Elementary, my dear Beka. ;)

Edited by Drax, 05 January 2007 - 04:59 PM.


#26 Pixiedust

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Posted 05 January 2007 - 04:59 PM

I know, I already posted this explanation in AQG and asked if it was right. :lol:

I wonder what it figures "s Playgirl" must be there for...
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#27 Lord of the Sword

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Posted 05 January 2007 - 05:01 PM

View PostPickles, on Jan 5 2007, 02:46 PM, said:

I don't think I can even begin to share my feelings on this. I'm appalled beyond belief. Since when is life supposed to be convenient and easy? It doesn't come with guarantees. What's next?

OK, so because life doesn't come with guarantees that means people shouldn't take steps to make their lives more bearable? or do what they feel is in their family's best interest? They have to get approval from the whole world first? When did that happen?

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"Dad has Alzheimer's and wanders away, so let's cut off his legs so he can't walk, and arms so he can't move a wheelchair. Then we won't have to worry. And gee, we can hug him every freaking day since he'll be stuck right where we put him."

Or "Mom has lost bladder control and I can't lift her to change her diaper, so let's give her a bag to make my life easier. And gee, I'll hug her more often because she won't smell so bad."
You're talking about 2 different type of conditions. the 2 aren't comparable.

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Maybe my thoughts are radical, but with every little step we pull ourselves closer and closer to the edge of "let's make a perfect society".

It's not about that. It's about what they feel was in the family's best interest.

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These parents need to take a good long look at themselves, as does the doctor.

I think they already did.
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#28 BklnScott

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Posted 05 January 2007 - 05:13 PM

A relevant bit of the article that's not quoted above:

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Ashley has been diagnosed with static encephalopathy, or severe brain damage. She has the mental age of a three- to six-month old. She cannot speak, relies on a feeding tube for nourishment and cannot move on her own.

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There isn't enough mommy in the world to further a cause like yours!

#29 Broph

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Posted 05 January 2007 - 08:42 PM

View PostDrax, on Jan 5 2007, 09:56 PM, said:

When it sees that apostrophe after Beka, the board truncates your name cuz it thinks that's the end of your name.  Now, Bekas Playgirl would show up since there's no apostrophe 'til after the l in Playgirl.

Elementary, my dear Beka. ;)

The message board is just a big old database with a Web front-end. In SQL, the language of the database, an apostrophe (or single-quote as it is), denotes the beginning or the ending of text. Depending on how the statement is parsed, it may see the apostrophe as the ending of the text.

I have several databases that I have to keep reminding people not to use apostrophes with, since it messes with the usability.

#30 Vapor Trails

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Posted 05 January 2007 - 08:44 PM

Being the NPR junkie I am, I heard about this story already.

My feelings?

I'd have to know ALL the facts before I could make a judgement. I will question the wisdom of the parents posting a blog for all the world to see. Dangerously naive, at the very least. Given the volatile nature of this story, and the emotional responses this is bound to cause, posting a blog strikes me as a VERY bad idea.
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#31 Broph

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Posted 05 January 2007 - 08:51 PM

View PostKosh, on Jan 5 2007, 09:39 PM, said:

Have you ever helped care for someon who is handicapped?

I took care of my father when he had emphysema. Not exactly handicapped, but there were lots of things that I had to help him with. In his last months, he couldn't go upstairs to take a shower - even when he could take a shower, he couldn't raise his arms to wash his hair and I'd have to wash his hair in the kitchen sink.

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They are just like the rest of us in almost every way.  Cutting her up isn't going to make any real difference for the girl. Let her live out her natural exsistance, make her as comfortable as you can.
This girl is more than handicapped and she is NOT like the rest of us in almost every way. Other than having a body that's human, she's not just like the rest of us. And these surgeries WILL make a real difference for the girl. They allow her to stay with her parents longer, rather than having her put into an institution. And these surgeries ARE making her more comfortable. The changes in her body would be analagous to a cancer to the rest of us - she won't get any benefit from the changes her body would go through.

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I don't see how lack of breast will protect her against a perv. (No offence to our resident Perv) Puberty isn't going to make much difference to someone who can't move.

It's one less thing to be fixated on.

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Out living her parents isn't the best thing either.
I don't see what the alternative is.

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When a Doctor takes it upon him/her/self to rearange someones body, for little or no reason, tha's playing God. Any community that allowed them to disfigure a handicapped girl has no ethics.

So what about when they put in the feeding tube; were they playing God then? If she can't eat by herself, then would you feel better if the parents had just let nature take its course?

To a certain extent, if this girl is really this badly off, is letting her live like this worse?

#32 Broph

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Posted 05 January 2007 - 08:53 PM

View PostDigital Man, on Jan 6 2007, 01:44 AM, said:

I will question the wisdom of the parents posting a blog for all the world to see. Dangerously naive, at the very least. Given the volatile nature of this story, and the emotional responses this is bound to cause, posting a blog strikes me as a VERY bad idea.

Why, when it could help other people going through a similar situation?

#33 Vapor Trails

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Posted 05 January 2007 - 08:57 PM

Hm.

Shades of Terri Schiavo, anyone?  :unsure: :unsure:
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#34 Vapor Trails

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Posted 05 January 2007 - 09:01 PM

View PostBroph, on Jan 5 2007, 08:53 PM, said:

View PostDigital Man, on Jan 6 2007, 01:44 AM, said:

I will question the wisdom of the parents posting a blog for all the world to see. Dangerously naive, at the very least. Given the volatile nature of this story, and the emotional responses this is bound to cause, posting a blog strikes me as a VERY bad idea.

Why, when it could help other people going through a similar situation?

I understand that-but there's also those folks that will get overly emotional over something they don't have all the facts to. Some of those folks could go a little...overboard, if you get my drift. I don't think I have to spell it out for you.

Eh-whatever. It's a moot point. It's out there, and that's that. :eh:
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Politicians are like bananas; they hang together, they're all yellow, and there's not a straight one among them.

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#35 scherzo

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Posted 05 January 2007 - 09:12 PM

View PostScottEVill, on Jan 5 2007, 05:13 PM, said:

A relevant bit of the article that's not quoted above:

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Ashley has been diagnosed with static encephalopathy, or severe brain damage. She has the mental age of a three- to six-month old. She cannot speak, relies on a feeding tube for nourishment and cannot move on her own.
Relevant indeed.  I had  big problems understanding this post at all until I skimmed the full story.

This girl's more than merely "disabled" as we commonly understand the term. Personally I think the most humane option would be euthanasia,(4 out of 5 pragmatists agree)but that's another debate entirely.

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#36 Rhea

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Posted 05 January 2007 - 09:48 PM

View PostUna Salus Lillius, on Jan 5 2007, 11:00 AM, said:

Above all, do no harm.

Making life more "convenient" for the parents by deliberately stunting a girl's growth is monstrous.

Lil

It actually wasn't for convenience - that's something the press made up.

There's a history of over-large breasts (breast-reduction-sized) and breast cancer in the family. Can you imagine being continually strapped in across your likely huge breasts? They didn't do a mastectomy on her - they removed the breast buds before she actually grew breasts - and it was a minor surgery.

One of the biggest problems with severely handicapped kids (and this kid is at the three-MONTH level  at 9, and completely helpless, fed through a gastric tube, unable to move or speak - about the only thing she CAN do is cry when she's in pain) is that it's so hard to shift them around - they kept her smaller so they could still take her everywhere, because they believe that the stimulus of being able to change locations and do everything with the family that's possible for her is necessary to her wellbeing. As often happens with really severely handicapped kids, the only reliable caregivers in this case have been the family - and she would have grown to about 5'6", which would have made it impossible for her family to do simple things like get her in the bathtub, which she can only use laying down (she can't sit up). Neither would the two grandmothers, who are also her caregivers, have been able to lift her.  It would have taken two family members, or a special sling, just to move her.

As for the hysterectomy, they hoped to keep her comfortable by ensuring that she didn't have periods - since she can't communicate, it would have been hard to know what kind of discomfort or pain she might have suffered during her periods.

It's not something I would recommend for every severly disabled child, but the parents and the hospital ethics committee thought long and hard before doing these treatments, and I really believe, after reading the parents' blog, that they were trying to do what was best for her, not what was convenient for them.

(Can I also add that the term "pillow angels" makes me want to puke? Gah.)

I work around children like her every day. It's very hard to know when they're uncomfortable, and they're dead weight - hard to lift even when they're small. I would not do it to my child (and I thank God that I never had to deal with a child this handicapped), but after reading what the parents and the doctor had to say, I can't condemn the parents either. It's really easy to judge these people, isn't it?

Here's the parents' blog:

http://ashleytreatme...paces.live.com/

(Edited to add: I see Cheile beat me to the link.)

Edited by Rhea, 05 January 2007 - 09:51 PM.

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#37 Kimmer

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Posted 06 January 2007 - 12:29 AM

View PostRhea, on Jan 5 2007, 06:48 PM, said:

It actually wasn't for convenience - that's something the press made up.
I didn't go read the parents blog because I didn't have time. I also don't have the background that you do, so I appreciate your level headed comments and explanation.

You've given me food for thought. I still don't like this, and I still think it's to close to other things that scare the absolute tar out of me ... but I can understand a bit better why the decision was made. Thanks for the info.


edited to fix codes

Edited by Pickles, 06 January 2007 - 01:10 AM.


#38 Vapor Trails

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Posted 06 January 2007 - 01:27 AM

Rhea,

At some points during my job, I had to work with severely handicapped kids-though not to the extent you do-so I have a pretty good idea where you're coming from. I had processed this story a bit in my mind and thought a bit more before I posted my response here.

It's a sad story all around. :( :(
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#39 White Tiger

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Posted 06 January 2007 - 01:36 AM

At this level of technology so many choices are incredibly difficult...I do not wish such torment upon anyone.
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#40 Vapor Trails

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Posted 06 January 2007 - 01:48 AM

View PostNayto, on Jan 5 2007, 03:39 PM, said:

Controversial issues just aren't enjoyable if everyone agrees.

Erm...I wasn't aware that discussing a topic like this was supposed to be, ummmmmmm...enjoyable.

:suspect: :Oo:
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Politicians are like bananas; they hang together, they're all yellow, and there's not a straight one among them.

"We're relevant for $ and a vote once every two years. Beyond that, we're completely irrelevant, except of course to consume, and preach the gospel according to [insert political demigod here]."--Cait



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