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Rights of the Disabled

Medicine Medical Ethics Health Stunting growth 2007

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#1 sierraleone

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Posted 05 January 2007 - 12:21 PM

I found this very interesting, currently I'm sitting on the fence.

http://www.canada.co...46-386121d9109c

Quote

An American couple have had doctors stunt their disabled nine-year-old daughter's growth in the hopes of keeping her small enough to enable them to care for her.
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.
...
When Ashley started showing signs of puberty early at age six, her parents feared she would quickly grow too big for them to lift. Doctors at Children's Hospital in Seattle stunted her growth with high doses of estrogen; she finished the regimen a few weeks ago. They also removed her uterus, appendix and breast buds.
The girl is now 4-foot-5, weighs 65 pounds and is unlikely to get any bigger. Her family says the treatment limited her height by about 20%, or 13 inches.
...
Critics argue Ashley's treatment made life easier for her family, but does not benefit the girl herself.
"I think we would work to treat the conditions without stripping [disabled people]of what little humanity they still have. This brings me back to when we just lobotomized them," one reader from Florida wrote on an online message board.
"I can understand a hysterectomy for her health, but more than that practically turns a human being into a doll."
...
The removal of her breast buds and uterus was also practical. The procedures eliminate any risk of breast cancer and menstrual cramps and make her wheelchair more comfortable (it has a chest strap). They also make it less likely Ashley would be sexually abused by a future caregiver, the parents add.
...
"May we redesign disabled people to make them easier to care for?"
...
"We've got to start from the basic presumption in favour of the natural. The 'natural' is that
she gets all opportunities to develop that anybody else would have," she explained.
"If we're going to inhibit that natural development, we've got to have very strong justification for doing that. Therefore, the question is: Is making her easier to carry a sufficient justification for that very invasive surgical intervention?"
...
"The alternative is not to change her, but to change the circumstances in which she and her parents find themselves, and to give them human support that will enable the same things to be achieved."
...
Dr. Jeffrey Brosco ... asked whether it is "an attempt at a medical fix to what's really a social and political problem" -- parents like Ashley's who do not have enough access to social support and home care.
...
Ashley's doctors disagree. They say the potential side effects are minimal and the treatment directly benefits their young patient, regardless of whether she is cared for at home, in an institution or in foster care.
"In reality, Ashley being smaller means that she will be moved more, that she will be held more, that she will be bathed more. All of these things are inherently good for Ashley herself," Dr. Daniel Gunther
...
He added the debate has reminded him of a quote from Isaac Asimov: "Never let your sense of morals get in the way of doing what's right."

Edited by sierraleone, 06 January 2007 - 10:08 AM.

Rules for surviving an Autocracy:

Rule#1: Believe the Autocrat.
Rule#2: Do not be taken in by small signs of normality.
Rule#3: Institutions will not save you.
Rule#4: Be outraged.
Rule#5: Don't make compromises.
Rule#6: Remember the future.
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Source: http://www2.nybooks....r-survival.html

#2 Kosh

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Posted 05 January 2007 - 12:31 PM

Half of Doctors like to play God.
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#3 Godeskian

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Posted 05 January 2007 - 01:27 PM

This was hardly doctors playing God, but as much as I understand the intellectual side of the debate, it makes me uneasy.

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#4 Bad Wolf

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Posted 05 January 2007 - 02:00 PM

Above all, do no harm.

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

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#5 Kosh

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Posted 05 January 2007 - 02:32 PM

View PostGodeskian, on Jan 5 2007, 01:27 PM, said:

This was hardly doctors playing God, but as much as I understand the intellectual side of the debate, it makes me uneasy.



That's exactly what it is. This Doctor thinks he knows what best for everyone, including mutilating this kid. That's a God complex if I've ever seen one.
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#6 Kosh

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Posted 05 January 2007 - 02:33 PM

View PostUna Salus Lillius, on Jan 5 2007, 02:00 PM, said:

Above all, do no harm.

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

Lil



"Above all, do no harm"


Isn't that part of the oath?
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#7 Kimmer

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Posted 05 January 2007 - 02:46 PM

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?

"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."

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".

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

#8 Bad Wolf

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Posted 05 January 2007 - 03:02 PM

View PostKosh, on Jan 5 2007, 11:33 AM, said:

View PostUna Salus Lillius, on Jan 5 2007, 02:00 PM, said:

Above all, do no harm.

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

Lil



"Above all, do no harm"


Isn't that part of the oath?


Indeed.

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#9 Cheile

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Posted 05 January 2007 - 03:02 PM

try reading her parents' blog before you throw those stones, people.

http://ashleytreatme....live.com/blog/

this was not a decision made lightly.  they are doing it to prevent her suffering puberty etc.  and yes for someone with that kind of mind (or complete lack thereof), it WOULD be suffering.

the child will not have a normal adult life.  hell she will not have ANY kind of adult life.

and this was not just doctors "playing God"...they had to go through an ethics community etc etc.

it also insures her further safety.  this girl will likely live after her parents die.  the lack of development gives her a better chance of not suffering at the hands of some pervert caregiver.

yes, how dare they try and make it easier for her to exist (cuz i don't call that living) rather than dumping her on the state and expecting you (the taxpayers) to pay for her.  which is what MOST parents of these sorts of children do.  they "can't handle it" because they gave birth to an abnormal child so they dump them in state-paid institutions.  which means we're paying for them to sit in institutions.

at least her parents are being responsible and making her existence as easy as possible.

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#10 Nayto

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Posted 05 January 2007 - 03:39 PM

View PostCheile, on Jan 5 2007, 03:02 PM, said:

try reading her parents' blog before you throw those stones, people.

http://ashleytreatme....live.com/blog/

this was not a decision made lightly.  they are doing it to prevent her suffering puberty etc.  and yes for someone with that kind of mind (or complete lack thereof), it WOULD be suffering.

the child will not have a normal adult life.  hell she will not have ANY kind of adult life.

and this was not just doctors "playing God"...they had to go through an ethics community etc etc.

it also insures her further safety.  this girl will likely live after her parents die.  the lack of development gives her a better chance of not suffering at the hands of some pervert caregiver.

yes, how dare they try and make it easier for her to exist (cuz i don't call that living) rather than dumping her on the state and expecting you (the taxpayers) to pay for her.  which is what MOST parents of these sorts of children do.  they "can't handle it" because they gave birth to an abnormal child so they dump them in state-paid institutions.  which means we're paying for them to sit in institutions.

at least her parents are being responsible and making her existence as easy as possible.

While reading this thread, I was just waiting for someone to say the above post.

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#11 Themis

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Posted 05 January 2007 - 03:45 PM

This story ran in the local paper with a photo of the girl, who can't seem to do much more than breathe on her own.  One has to wonder what, if anything, is going on in her mind - wish someone could do a Vulcan mind meld with people like this to find out.  She can't walk or talk, keep her head up, roll over or sit up by herself and is fed with a tube - and it would seem doubtful there's a very active mind.  If there is, what a very sad existence... I have to commend the parents for caring for her - I'm sure this will sound harsh, but it might seem almost like having a pet - or a breathing doll.  

On the surface, the medical procedures do seem appalling.  But after reading about her condition and all of the reasons, not so much.  It's still venturing into dangerous medical/ethical territory, though, no matter how valid the reasons, and while I understand the reasons and am somewhat sympathetic with them, I'm not sure I'm totally comfortable with this.  Yet it may be a blessing that these procedures are available.  The decisions certainly weren't made lightly.

Could a pre-natal test have forcast her condition?  There are so many "whys" here...
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#12 Pixiedust

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Posted 05 January 2007 - 03:51 PM

With these disabilities, it does seem like natural growth will be the least of her problems...
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#13 Mooky

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Posted 05 January 2007 - 03:59 PM

Quote

I think we would work to treat the conditions without stripping [disabled people]of what little humanity they still have.

As a physical challenged individual, I find this statement very offensive.  We are all as human as the so-called "normal" people.

#14 Pixiedust

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Posted 05 January 2007 - 04:05 PM

View PostDrax, on Jan 5 2007, 09:59 PM, said:

As a physical challenged individual, I find this statement very offensive.  We are all as human as the so-called "normal" people.

That is indeed a very strange way of putting it. Humanity merely means being human...so what are disabled people then? Horses? Aliens from outer space?

I can understand what point the critic is trying to make, but I agree that the way he's phrasing it is extremely offensive.
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#15 Mooky

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Posted 05 January 2007 - 04:24 PM

View PostBeka, on Jan 5 2007, 03:05 PM, said:

View PostDrax, on Jan 5 2007, 09:59 PM, said:


Hey Orph,  9:59?  I posted at 2:59.

Edited by Drax, 05 January 2007 - 04:25 PM.


#16 Pixiedust

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Posted 05 January 2007 - 04:28 PM

I'm in GMT+1 so in my timezone you posted at 9:59, as I quoted you it would come up as 9:59 in my post. Don't worry, board's all right.

Edit: Just out of curiousity, did you edit my name when you quoted me? Cause it seems to come up as "Beka" in everyone's quotes and I'm just curious now...

Edited by Beka's Playgirl, 05 January 2007 - 04:30 PM.

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#17 Mooky

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Posted 05 January 2007 - 04:35 PM

View PostBeka, on Jan 5 2007, 03:05 PM, said:

That is indeed a very strange way of putting it. Humanity merely means being human...so what are disabled people then? Horses? Aliens from outer space?

I guess technically  I'm a mutant, but not in a good way. :p  However, even with all my difficulties, I'm better off than some.

#18 Pixiedust

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Posted 05 January 2007 - 04:37 PM

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

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Posted 05 January 2007 - 04:39 PM

View PostBeka, on Jan 5 2007, 03:28 PM, said:

Just out of curiousity, did you edit my name when you quoted me? Cause it seems to come up as "Beka" in everyone's quotes and I'm just curious now...

I didn't do anything to your name.   The board seems to have shortened it.

Edited by Drax, 05 January 2007 - 04:42 PM.


#20 Kosh

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Posted 05 January 2007 - 04:39 PM

View PostCheile, on Jan 5 2007, 03:02 PM, said:

try reading her parents' blog before you throw those stones, people.

http://ashleytreatme....live.com/blog/

this was not a decision made lightly.  they are doing it to prevent her suffering puberty etc.  and yes for someone with that kind of mind (or complete lack thereof), it WOULD be suffering.

the child will not have a normal adult life.  hell she will not have ANY kind of adult life.

and this was not just doctors "playing God"...they had to go through an ethics community etc etc.

it also insures her further safety.  this girl will likely live after her parents die.  the lack of development gives her a better chance of not suffering at the hands of some pervert caregiver.

yes, how dare they try and make it easier for her to exist (cuz i don't call that living) rather than dumping her on the state and expecting you (the taxpayers) to pay for her.  which is what MOST parents of these sorts of children do.  they "can't handle it" because they gave birth to an abnormal child so they dump them in state-paid institutions.  which means we're paying for them to sit in institutions.

at least her parents are being responsible and making her existence as easy as possible.


Have you ever helped care for someon who is handicapped?

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.

Quote

t also insures her further safety. this girl will likely live after her parents die. the lack of development gives her a better chance of not suffering at the hands of some pervert caregiver.
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. Out living her parents isn't the best thing either.





Quote

and this was not just doctors "playing God"...they had to go through an ethics community etc etc.

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.
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