Disabled girl artificially kept from growing up

Former Member · January 2007

Scary Monster wrote:

I don't know, do you?

I have a good idea, seeing as we are talking about US healthcare here.

I'm not certain but I'd say it was a good guestimate to suggest that $$$$ is in there somewhere.

Former Member · January 2007

Man Of Kent wrote:

if you look back my anger is more at the state for not ensuring that the right care is in place and at the doctors for performing the surgery than it is for the parents in making a tough decision.

Hopefully this isn`t seen as patronising but I believe you are intelligent enough to know that "the state" can only ensure that care is in place by inflicting or threatening to inflict violence on at least one individual (more likely,a good deal more).

(That fact is accepted by many.I have been told this a good few times on the Site.You give me the impression that you also accept this fact).

However, I have noticed you have seemingly become quite emotional in this thread at an individual`s treatment at the hands of others.

But in order to prevent this treatment you advocate the action in my first paragraph.

Surely,that IS inequality in your proposed treatment of those two particular individuals.

Former Member · January 2007

seeker wrote:

Hopefully this isn`t seen as patronising but I believe you are intelligent enough to know that "the state" can only ensure that care is in place by inflicting or threatening to inflict violence on at least one individual (more likely,a good deal more).

Indrid Cold · January 2007

cba to read this whole, but I'll say this:
If the reason they did this thing (which is sick IMO) to her was that she would be easierly cared for, why didn't they just kill her? No one would have to care for her then.

Former Member · January 2007

I think that level is making things too simplistic, and can't really be answered sensibly. There's a big difference in wanting to be able to give her the best care they could and not caring.

Indrid Cold · January 2007

Well, it would certainly ease her life. So if you think it's acceptable to hack someone's body to do that, surely you could just turn it off just as well.
On the other hand, I believe people should have some level of respect for the human body, their own and other people's, and not do anything so unnatural to it if it's not necessary.

Former Member · January 2007

Indrid Cold wrote:

Well, it would certainly ease her life.

Think it would actually end her life.

As for hacking the body, it's done all the time to make people's lives easier, just because it's towards our 'normality' its deemed to be a good thing.

Indrid Cold · January 2007

Yeah, because it fixes mistakes. This girl's body already had something wrong, in the brain. Just because they couldn't fix that doesn't justify breaking other stuff, as in "two wrongs don't make a right".
She was a psychological mess before, now she's a physical mess as well. Nicely done.

Former Member · January 2007

But one side would be, her brain is a part of her body and isn't maturing, why let other parts of her body.

If part of her body wasn't maturing like 'normal' everyone would be all in favour of altering that, in many ways this isn't actually very different to that. Big difference is it isn't forcing her towards being 'normal' how general society likes so it's less acceptable.

Indrid Cold · January 2007

Poor guy has no left arm, let's cut the other one too.
Not much of the same, but I've said what I had to say. My previous post is clear and answers the one you posted after it too.

EDIT: Better yet, "Poor guy has no left leg, let's cut the right one too so he'll be able to "stand" without falling, since we can't make a prosthesis."

Former Member · January 2007

I thought I'd just throw in some quotes from the blog the parents released on New Years day. I'm not gonna say my piece yet because it's late and I can't be bothered to do it right now, but here are some of the parents words:

A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver; rather, the central purpose is to improve Ashley’s quality of life. Ashley’s biggest challenges are discomfort and boredom; all other considerations in this discussion take a back seat to these central challenges. The “Ashley Treatment” goes right to the heart of these challenges and we strongly believe that it will mitigate them in a significant way and provide Ashley with lifelong benefits.

Unlike what most people thought, the decision to pursue the “Ashley Treatment” was not a difficult one. Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around.

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. Typically, when awake, babies are in the same room as other family members, the sights and sounds of family life engaging the baby’s attention, entertaining the baby. Likewise, Ashley has all of a baby’s needs, including being entertained and engaged, and she calms at the sounds of family voices. Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body.

Recently, a doctor suggested that Ashley will be less prone to infections as a result of her smaller size. Bedridden individuals are more susceptible to potentially fatal infections. Both the reduction in size in itself, and the increased movement and resulting blood circulation are expected to reduce the occurrence and magnitude of such infections including:

1- Skin sores: larger body weight leads to pressure skin ulceration or bed sores, providing an inlet for deadly bacterial infections (another way to look at this is that adults are more susceptible to bed sores than children).

2- Pneumonia: increased body weight increases the pressure on the chest and reduces the lungs’ ability to expand, causing fluid build up in the lungs that increases the chance for pneumonia and breathing complications.

3- Bladder infection: similarly, increased body weight causes increased pressure on the bladder outlet, resulting in urinary retention and an increased risk for bladder infections.

The breast bud removal has other benefits:

1- Avoiding the possibility of painful fibrocystic growth and future related surgeries. Women in Ashley’s lineage have a history of fibrocystic growth.

2- Avoiding the possibility of breast cancer. Ashley has breast cancer history in her family.

3- Large breasts could “sexualize” Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse.

Even though Ashley’s level of tolerance has increased along the years, she is helpless when bothered and her only recourse is to cry until someone comes to her rescue. These episodes are triggered by something as simple as sliding off the pillow or a hair landing on her face and tickling/bothering her, let alone menstrual cramps, adult-level bed sores, and discomfort caused by large breasts.

http://ashleytreatment.spaces.live.com/blog/

Former Member · January 2007

I think especially after reading the above I can understand it.

I mean for fucks sake no one would have their kid hacked open etc if there wasn'ta damn good reason!

Former Member · January 2007

George Dvorsky, a member of the Board of Directors for the Institute for Ethics and Emerging Technologies said: "If the concern has something to do with the girl's dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity.

So, by his logic, it would be ok to rape a child if that child doesn't know what rape is ?

Former Member · January 2007

CheeseOnToast wrote:

I mean for fucks sake no one would have their kid hacked open etc if there wasn'ta damn good reason!

Munchausen's by proxy.

Former Member · January 2007

I think they should do their best to aid the child and give her the best possible life.

I find it extremely hard to even begin to comphrehend the situation the parents are in. From an outsiders perspective I think it would be better to leave the child be.

It's sad that children are born like this

, their life will never be complete. Not that they'll know any better of course.

Former Member · January 2007

I only read the first page of this thread, but I totally agree with SCC and briggi on this. Just because it is more 'convinient' for the carers is no reason to perform these surgeries that alter the natural course of nature so savagely.

It makes my blood boil the way people with disabilities, especially children, are treated. And I especially dislike the argumentative line that seems to be going on here about 'if the parent's think it's best, then its their choice'. Bullshit. It doesn't work that way, just because they are her parents doesn't mean they own her person and therefore can choose to remake her to their taste so she'll be less of a burden. Even with a mind of a 6 month old or whatever, she's still a person and therefore has the right to develop as naturally as possible.

Former Member · January 2007

Man Of Kent wrote:

Interesting that you took my comment about female circumcision off when you quoted me. Don't you think it's sick to lop off a young girl's clitoris?

I left that part off because I didn't understand it. As far as I know, they're not going to perform female circumcision on Ashley. I'm also not aware that female circumcision is a regular practice in America. So I don't see how it fits in with anything I've said. Feel free to enlighten me, though...

Man Of Kent wrote:

It's not rude to call someone sick because they abuse children.

No it's not. But a lot of people don't consider this to be child abuse and besides, you weren't just calling the parents and doctors sick, you were calling everyone who agrees with the decision sick as well. And that's what I think is rude.

Man Of Kent wrote:

I think that you need to read Stalin's comment on the difference between one and one million.

I think that I've read it. But I'm confused about what you're trying to say... if hysterectomies were being performed routinely on disabled girls who would never go on to bear children, that's surely not something to be classed as just a statistic? Yeah one person matters, I'm not denying that, but in my view this one little girl isn't a tragedy because the surgery has been agreed on according to her individual needs rather than "because we did it before we might as well do it again." If doctors started saying that, that's what would be a tragedy, and IMO that would be when we should stand up and say "This is wrong."

Former Member · January 2007

wildchild wrote:

I left that part off because I didn't understand it. As far as I know, they're not going to perform female circumcision on Ashley. I'm also not aware that female circumcision is a regular practice in America. So I don't see how it fits in with anything I've said. Feel free to enlighten me, though...

You're argument was that [to paraphrase] if many people think that the care is okay then it's rude to suggest it's sick. In parts of this world there are many people who think that female circumcision is okay. I disagree, I think it's sick and I will say so. I take the same stance on the US approach to male circumcision and I take the same stance here. I believe it is sick and I will exercise, what I see as my right, to hold that opinion and express it.

No it's not. But a lot of people don't consider this to be child abuse and besides, you weren't just calling the parents and doctors sick, you were calling everyone who agrees with the decision sick as well. And that's what I think is rude.

I believe that operating, unnecessarily, on someone is abuse. I am not alone in this opinion and, in fact, that is part of UK law. It's assault.

I believe in this case that surgery isn't warranted. If you read the blog much of the parents comments are about making life easier for themselves, about the possibility of future ailments (NB it's possible that I will get prostate cancer, but no doctor will remove my prostate just in case) and several guesses about her comfort based on some spurious assumptions. To ,e that doesn't make a case.

I refer to people on here supporting it because many of the reasons given are around the premise that she is "less" of a human being than anyone who posts here. that because she is disabled some of the, what I believe to be, basic rules about how we treat another human don't apply.

I think that I've read it. But I'm confused about what you're trying to say... if hysterectomies were being performed routinely on disabled girls who would never go on to bear children, that's surely not something to be classed as just a statistic?

Indeed, the quote is alleged to be "A single death is a tragedy, a million deaths is a statistic." You said, just "one". It doesn't matter how many people are involved, my conjecture is that if a line has to be drawn then why not at "one".

Would you support this if it was routine?

Yeah one person matters, I'm not denying that, but in my view this one little girl isn't a tragedy because the surgery has been agreed on according to her individual needs rather than "because we did it before we might as well do it again." If doctors started saying that, that's what would be a tragedy, and IMO that would be when we should stand up and say "This is wrong."

Sorry, you kind of answered my point [above] here.

If it is wrong to do it for the many, then why is it okay to do it for one, and what makes you think it would be wrong to do this routinely in similar circumstances.

Doctors will use this case, as will parents of similar children, as an example in the future. I have no doubt that more parents will now consider it and more such operations will follow. That is how medicine works - there always has to be a ground breaker and this it one such event.

Regardless of the message this send to disabled people around the world (that their dignity doesn't matter as long as they aren't a hassle), it is wonrg IMHO to use surgery, not to treat an ailment, to make a carers life easier.

If she was suffering from problems with her breasts or periods then I wouldn't have such concerns but she is and possibly might not.

Former Member · January 2007

George Dvorsky, a member of the Board of Directors for the Institute for Ethics and Emerging Technologies said: "If the concern has something to do with the girl's dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity.

I had to quote that again for anyone who missed it.

Apparently it's okay to violate someone's dignity if they don't realise. Note that he didn't say it wasn't violated.

Former Member · January 2007

Indrid Cold wrote:

If the reason they did this thing (which is sick IMO) to her was that she would be easierly cared for, why didn't they just kill her? No one would have to care for her then.

I think that is a much bigger step to take.

I have no doubt that this child's parents love her deeply and care a great deal about her and so her death wouldn't have been an option.

This isn't about them not offering her any care, it's about them making it easier for themselves to offer the care because the state doesn't so they are having to cope on their own.

Former Member · January 2007

seeker wrote:

Hopefully this isn`t seen as patronising but I believe you are intelligent enough to know that "the state" can only ensure that care is in place by inflicting or threatening to inflict violence on at least one individual (more likely,a good deal more)....

But in order to prevent this treatment you advocate the action in my first paragraph.

Surely,that IS inequality in your proposed treatment of those two particular individuals.

Can we not hijack this thread into another taxation is theft [with violence] discussion?

I'll answer though.

The state is supposed to be our representative, we contrbute through our own will, the state cannot survive without the will of it's citizens (as has been shown by revolutions throughout history). I have no doubt taht the state in question has a mandate from the people to deny, what I consider to be, proper care in this case.

Though, with my knowledge of the US approach to healthcare and disability specifically, that doesn't surprise me. How many millions of US citizens don't have access to decent healthcare?

Disabled girl artificially kept from growing up

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