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Thread: Mutilation of daughter as disability treatment

  1. #131
    Quote Originally Posted by chick
    I am choosing right now to directly address you for the first time in this thread, because I am truly dumbfounded that you are not brain damaged.
    Oh, bullspit. What you're doing is choosing to be bitchy for no other reason than you feel superior and you think you're amusing. At this point, you're wrong on both counts.

    Maybe she finds some joy being retarded for the hell of it and reminding people by erratically attacking them to draw attention to her retardedness. Is Retardness a word?
    Jesus H. Christ on a pogo stick! I don't even like Daisy and I'm defending her just because your posts have become so far, over the top obnoxious that nobody should let them go. Even considering the amount of vitriol that is typically spewed around here, I am still amazed that you would sink this low. Retard jokes? On a support board for people with disabilities? The maturity... the imagination... the intellect it must take to come up with this stuff. You should become a public speaker, you're so adept at rallying people to your side with this kind of argument.

    Seriously, woman, dial it back a notch. It's one thing to be arrogant, but your level of self-aggrandizement is only going to rot your insides.

    I guess it is easier to ... make threads personal, than to actually have a thought.
    If you're going to make cracks about retardedness then you have no business lamenting the personal nature of other people's comments.

    C.

  2. #132
    Senior Member Zeus's Avatar
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    Quote Originally Posted by PDnemesis
    Her ovaries were removed. She did not have a partial hysterectomy.
    In the interest of accuracy...

    Quote Originally Posted by Dr. Douglas Diekema
    The hysterectomy involved a surgical procedure where her uterus is removed. They kept her ovaries in, so she could continue to produce hormones like a normal person would.
    Chris.
    Have you ever seen a human heart? It looks like a fist wrapped in blood! Larry in 'Closer', a play by Partick Marber

  3. #133
    Quote Originally Posted by Obieone
    is having an opinion the same as being judgmental??
    Yes. In order to form an opinion, one must make judgments about various things. Deciding to either agree or disagree or that one likes or dislikes something.

    is it not possible to have an opinion and even completely disagree with anothers action yet reserve judgment??? I think it is! I never said I would necessarily do the same thing as these parents ... I said I would not judge them for their decision ...
    You seem to be equating judgmental with condemning. Yes, I think it is quite possible to disagree with someone, to judge a specific aspect of their character or one of their opinions as being wrong, while not condemning them outright as people.

    I've learned over and over again life is not so black and white as we long for it to be ... its a multitude of shades of grey (too many variables to consider in each unique situation .. as in this case) .... in my opinion thats harder for some to live with than others ..... I can accept that ...... but there is no need to be mean spirited about it!
    I agree that life is complicated and people should be able to disagree without it necessarily devolving into a free for all. However, I also don't think that a mean spirit is always behind strong disagreement or other judgment. For instance, I don't think that Scorpion's view of Ashley's parents is driven by mean spiritedness (although his comments to Betheny seem unnecessarily harsh). I think he just passionately feels that what the parents are doing is wrong. Should he keep that to himself?

    C.

  4. #134
    Evidently the doctors aren't in agreement as to what was done - or the press has reported it inaccurately as I have found articles with quotes from doctors who treated her that say the ovaries were removed and not removed. I suspect though they may have been removed as the the pattern seems to be early articles say yes and later articles say no. I would guess the medical journal article is the only really trusted resource.

  5. #135

    Chicky Mama

    Five.
    Last edited by Ozymandias; 01-17-2007 at 07:04 PM.

  6. #136
    Senior Member Zeus's Avatar
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    Getting back on topic for a moment, at first I thought (as many did/do here) that I could support the parents' and doctors' decision because they live with and care for Ashley. I know, in my own case, many people wanted to tell my parents how best to care for 7-year-old Chris. My family rarely appreciated the outside commentary.

    For example, the main SCI specialist that cared for me wanted me to go to a "special" school where there were plenty of therapists to care for my physical needs. Never mind that I'd be at a school where 95% of the students had severe intellectual disabilities. Had I gone to that school, I'd never have made it to law school.

    Another example was this same doctor constantly suggesting to my parents that, just for a month a year, I be institutionalised so the rest of my family could go away for a real holiday. The fuckwit had the audacity to suggest this to my parents while I was in the room - God I came to despise seeing him. The only highlight was my parents discussing what a retard (word of the thread!) he was in the car on the way home.

    Quote Originally Posted by antiquity
    And to state that this is all being done to make her as comfortable as possible is ridiculous. The last I checked, there's nothing physically comfortable about recovering from multiple non-medically necessary and invasive surgeries, nor is it risk free.
    Then I read these words and, to be honest, I did a complete back-flip. Frankly, I find what was done to Ashley to be a disgusting outrage. The thought that this could become a standard of care for other children like Ashley makes my blood boil.

    One concern is that most of these procedures pre-empt discomfort, while creating definite and immediate discomfort. She may develop large breasts that could be uncomfortable. Well, why not wait to find out? Of course, then it may be harder to dress her.

    As for the hysterectomy, again nobody knows how she'll deal with menstruation. She may get cramps, she may not. But with a hysterectomy, she almost certainly experienced pain. Why not wait until she gets older to find out? I can't help but think the chief benefit of a hysterectomy is to make it easier to care for Ashley.

    Most troubling is the experimental hormone therapy. The chief benefit of this procedure is to Ashley's carers, not to Ashley herself. Heck, when I got bigger my parents couldn't lift me either. That's why they got a hoist and sling. Would we condone such an experimental procedure on an AB if that procedure chiefly benefited others?

    We don't even know if Ashley will live long enough to experience the issues discussed above. For all we know, Ashley's been tormented with invasive medical procedures that may never benefit her.

    Finally, the assertion that finding good quality carers was impossible, but getting experimental procedures approved was possible, is laughable at best. This is a sad reflection on the services available to support families.

    Quote Originally Posted by Dr Douglas Diekema
    When you look at the growth attenuation, the primary benefits are by being a smaller girl, it will be easier for people to lift her, and will allow her to receive a more personal level of care from her parents for a longer period of time. They really want to be able to pick up their daughter and give her a hug and put her in a chair. It will be easier for them to move her to the car and go on outings rather than thinking about leaving her behind with a caretaker when they go on vacation. As far as removing her uterus with a hysterectomy, there are many profoundly disabled children who are traumatized by menstruation. They don't understand why there is blood coming from that part of their body, and it's impossible to make them understand. Unlike a normal 11- or 12-year-old, you can't explain to them this is a normal part of your development. The family wanted to spare Ashley that drama. Ashley's a little girl who already had experienced being terrified of blood.
    I find this justification for experimental growth attenuation to be uninspiring. It's easier to lift her? So what - get a hoist like most people. Lets see, do we get a mechanical device that many disabled people use on a daily basis, or do we stunt our daughter's growth by bombarding her body with hormones? How was this even a choice.

    I'm most disturbed by Dr Diekema's comment in bold. If she has already been terrified by blood, are we to really believe she is cognitively a 3-month-old?

    Quote Originally Posted by antiquity
    We can't condone the mutilation of Ashley for the sake of convenience but react with horror if one of our caregivers suggested something similar for us. We think we're exempt because we're verbal and cognitive and "different" from "them" but the reality is that society won't think so. We're indirectly supporting the view that it's ok, once again, for the medical establishment to subject disabled people to unnecessary and invasive treatments and procedures simply because they're disabled. Unnecessary treatments and procedures that an AB would NEVER be subjected to.

    *****

    With Ashley, there is no previous precedent. She IS the experiment. The safety and efficacy of the treatments she's being subjected to have not been established. This begs the ethical question of whether disabled people who are unable to give consent should be used as subjects for medical experimentation.
    The more I think about this, the more I agree with these sentiments.

    Finally, Chick raised the issue of potential. Some responded "what potential?". To those I say - don't throw stones in glass houses. Why not amputate the legs of a complete SCI if it makes it easier to care for them? What potential do paralysed legs have? If anything, you'd be spared the risk of pressure sores and blood-clots.

    But wait, stem cells could one day make those legs useful again. Last time I checked, stem cells could be made into brain cells too. How can anybody predict what Ashley's future potential will be?

    Chris.
    Have you ever seen a human heart? It looks like a fist wrapped in blood! Larry in 'Closer', a play by Partick Marber

  7. #137
    Senior Member lynnifer's Avatar
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    David and I went out for a large double double coffee (Tim Hortons - him) and a grande tazo chai latte (Starbucks - me) and sat down by the river for a few minutes and I brought up this very subject.

    My contention is if by some miracle (or evolution of medical technology), she is able to communicate of sound mind one day, do you think she'll wake up and tell the parents and doctors thanks for thinking of me?

    His view is that it sounds like a science experiment and is wrong.

    It's obvious her parents - well her mother anyway - seem to love her and are thinking of her future and no one is faulting them but as someone else in this thread pointed out, decisions made out of love aren't always the right ones.

    Then again I'm not a parent. I still can't believe, though, that doctors who pledge to first do no harm, went through with this surgery, on a child(!)

    I guess we're all going to have to agree to disagree.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  8. #138
    Quote Originally Posted by cspanos
    this same doctor constantly suggesting to my parents that, just for a month a year, I be institutionalised so the rest of my family could go away for a real holiday.
    May I ask how long your family continued to see this doctor and why? Were there no other good options or was he skilled in other ways that balanced out his obvious inadequacies?

    The thought that this could become a standard of care for other children like Ashley makes my blood boil.
    Ashley's parents have said that they want other parents to know about this "treatment", so this is a very, valid concern.

    the assertion that finding good quality carers was impossible, but getting experimental procedures approved was possible, is laughable at best.
    Yeah, that seemed odd to me, too.

    If she has already been terrified by blood, are we to really believe she is cognitively a 3-month-old?
    I would really like an answer to that particular question. Is fear of blood instinctive or do we learn to associate it with injury and pain? Where did she see blood and why did it scare her?

    C.

  9. #139
    Quote Originally Posted by PDnemesis
    Evidently the doctors aren't in agreement as to what was done - or the press has reported it inaccurately as I have found articles with quotes from doctors who treated her that say the ovaries were removed and not removed. I suspect though they may have been removed as the the pattern seems to be early articles say yes and later articles say no. I would guess the medical journal article is the only really trusted resource.

    That's great. So this whole battle royal you've started, with loaded words like "mutilation," that has left hard feelings all around, you have based more on emotion then fact. You really don't know any details about the family, Ashley, her doctors or what the procedure actually entailed but let's pick up a drum and have it.

    Lady, I try hard to be even keeled, but you have tipped it.

    I don't require any more information about this family and their ordeal from you. You have lost your credibility in my eyes. Good luck on your mission, I'm sure you wont let details get in the way.

    _________
    Last edited by NoDecafPlz; 01-14-2007 at 06:23 AM. Reason: Changed "We" to "You" as posters here were actually better informed.
    And the truth shall set you free.

  10. #140
    Let's see...
    people make unwarranted personal attacks, childishly accusing me of ruining a "decent/good" discussion because they don't like me or my opinions, and I should grace them with a thoughtful response to their personal attacks?

    People can address my points related to this topic, or make ME the issue... their choice. They've chosen NOT to address the issues and focus on me, the person (trust me, I'm not so special that my every word should affect you so much). So, since I've tired of trying to continue any real discussion with people like this when they continue this way, I graced them with a direct address, as they were begging me to do. I'm kinda gracious and generous like that.

    REPEATING (for Tiger): "I am choosing right now to directly address you (DD) for the first time in this thread, because I am truly dumbfounded that you are not brain damaged"
    Simply a Factual statement. Call it "bullspit" if you wish. Calling me a "bitch" is more acceptable than regarding an opinion as "disgusting", I see.

    You are "lamenting" on my "lamenting the personal nature of people's comments", telling me how I should post with a "dial it back a notch", while calling me many many names, feeling some need to lament on my lamenting in the lamenting of others...

    haha. silly gal. Can we get more circular? Careful or your tongue might get twisted into a permanent hypocritical knot.

    Here you are, AGAIN, unprovoked, and for some obviously personal reason attempting to bait me AGAIN into an argument with you, despite my not engaging your last attempt?

    You want me, don'tcha. Admit it. Careful, this is a Family forum.


    Ozy, yea, I give lotsa cavities, which ungrateful people send me dental bills for

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